Just found out triple neg - help pls.
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Topic: Just found out triple neg - help pls.
Posted By: LRM216
Subject: Just found out triple neg - help pls.
Date Posted: Mar 18 2009 at 4:23pm
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I am a young 62, no family history of any cancer and had a call back on my yearly mammo on Feb. 20, 2009, leading to compression mammo and US - then Core needle biopsy. Diagnosed with 1.5 centimeter IDC - agressive - deep (but not on chest wall) but no other info. Met with highly recommended BS on March 4, MRI on March 9th (nothing else found but original cancer) and went for pre-op today for upcoming lumpectomy and Sentinal Node biopsy scheduled for March 25th. While at BS office, I was finally told my ER/PR info finally came in and it was all triple neg.! I felt as if the floor fell out from underneath me. I don't mean to offend any of you other triple n's, as I am sure glad I found you, but should I be as frightened as I am? I feel as though I am doomed and that there is no hope for me. Dr. said my nodes all looked good on mri, but of course would have to be biopsied at Lumpectomy. I even asked if both breasts should come off and she didn't feel that to even be a consideration at this point in time. Assured me that i would do fine, but could not get any benefit from the drugs the PR/ER + gals could. Please - anyone - before I jumb out of my skin, can anyone shed some positive light on this for me. I respectfully thank anyone that might reach out to one very scared and on the verge of panic, lady. Thank you so much.
Linda
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Replies:
Posted By: cweed
Date Posted: Mar 18 2009 at 4:44pm
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Linda, You have come to the right place and will learn much from the ladies on this board. Triple negative is not gloom and doom. Many more women survive it than do not, and your early stage diagnosis is a good sign as well. I was diagnosed three years ago with three triple negative tumors in one breast. I had surgery, chemotherapy and radiation and am living disease free three years later. I even ran the Boston Marathon one year after chemo and my oncologist feels very good about my long term prognosis. Take things one step at a time. Don't project yourself into a situation you are not in, and that you may never be in. Take a deep breath, return to these boards to ask questions, get support and learn. Ask you doctor questions, get second opinions and pray. Here is a link to another site which shows some articles about the triple negative diagnosis. I'll pray for your health and that you find peace as you go through this. Just remember, take it one step at a time. http://nosurrenderbreastcancerhelp.org/page9/page18/page18.html Cathy ------------- Cathy, Winter Park FL Dx 12/05 3 tumors, triple negative, 6+CM, 0/13 nodes, stage 2b Double mast AC+T, dose dense radiation NED!! |
Posted By: Nancy
Date Posted: Mar 18 2009 at 4:51pm
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Dear Linda, Take a deep deep breath...we are here for you. There is so much information on this site that you can print out and read, and many intelligent women to answer all your questions.
You will receive more info after your surgery and meet with an oncologist. The surgeon will not be the one to recommend what treatments you will have...it will be the oncologist.
Pam... trip2 is you age and I know she will reply. The trip2 is because she has been dx 2 times with TNBC. Maybe she needs to fill you in on what she experienced.
The drugs that you will not take...the Tamoxifen, is for after chemo. No the TNBC women do not benefit from that. However, I just read an article which stated that the Tamoxifen was cusing cancer. It is good to be HER2 as that is less aggressive than the HER2+.
You are not doomed Linda. TNBC responds very well to chemo, although the chemo is the same as they give to BC+.
We will give you info to take to the docs so that you can ask all the right questions, and know why you are asking them. It is my daughter Lori who was dx with TNBC June 2007.
The TNBC News, Resources & Tips forum is literally filled with many many articles and almost all related to TNBC. This is the only site dedicated to TNBC. Pam posts new articles every day.
My Lori could not even function for the first 5-6 weeks after diagnosis. If you have someone who could retrieve these articles from our resource forum, I know that would help you. We also have "questions for the doctors, and I will send you a private message with my email address so that I can send you directions on how to retrieve the information.
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: LRM216
Date Posted: Mar 18 2009 at 5:12pm
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Cathy and Nancy - bless you both and much hugs. I feel better already. I just feel so alone and scared right now. Almost feel as though whatever I do will be a losing battle. I am never this negative a person and am hoping that with a few days of ativan in me, I will snap back and want to fight, rather than just wanting to dig a hole and jump in. You both have given me a glimmer of hope, as everything I read seems to negative when you are triple neg. I can't thank you enough for your responses. I am a widow raising my 13 yr. old grand-daughter and I just want to live to see her and my other little grands grow up. I know I am not anymore special than anyone else, but this new news has just set me on my a$$. Thanks again for being there for me.
Fondly,
Linda
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Posted By: cg---
Date Posted: Mar 18 2009 at 5:34pm
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Dear Linda,
You will never be alone with this diagnosis....you now have friends you have never met! We all fear the unknown and the more you know - the less you will fear. You will understand exactly what treatments you will need - what you should get to help you....and be will be there for you every step of the way.
Remember we have been there, done that, got the bald heads and scars to prove it....but after our treatments - we grew our hair back (the breasts we had to buy or reconstruct) and we found out we are stronger than we imagined.
Please tell us what chemotherapy your doctor is suggesting and we will give you the information we have gained through our research and experiences.
Love,
Connie
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Posted By: Nancy
Date Posted: Mar 18 2009 at 5:39pm
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Linda,
Ahhhh but you are special....very special, and every member on this site is just extraordinary!!
 You just stick with us, and we will get you through this unplanned...unexpected journey. You are going to find support like you never expected...personal, compassionate, and forget about this news just setting you on your a$$. You are gonna kick some serious cancer a$$!!! get that ativan...and get on here and talk. Many hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: JanetK
Date Posted: Mar 18 2009 at 6:49pm
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Linda, I know EXACTLY how you feel! I was diagnosed on Feb 13, this year. All the fears and anxiety go right along with the urgency to "get it out yesterday"! I have to go through oral surgery tomorrow, before I can even start my chemo. My port will be put in on the 19th. And the chemo will start a week after that. I will have neo adjuvant chemo (before surgery) in hopes that the tumor will shrink. I am also going to do a clinical trial that includes Avastin. I have found a wealth of information here. The ladies of this site are an absolute Godsend! Feel free to ask anything, and the gals will do their very best in helping you find the answer. All my best hopes and prayers to you. We all are in the same boat one way or another. In numbers there is strength! Take a deep breath and take one day at a time. much hugs, Janet ------------- TNBC feb 13,2009 2.6x 3.5 neoadjuvant chemo 8 rounds Lumpectomy successful Oct 09 axillary node dissection Nov 09 still awaiting results |
Posted By: LRM216
Date Posted: Mar 18 2009 at 9:03pm
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Thank you all, my dear new friends. You have all made me feel so much better. Haven't met with onc yet so I don't know what's in store as I'm having my lumpectomy and sentinal node testing on March 25, and when that pathology report comes in, BS will forward to onc. But I will certainly let you know as soon as I find out. The best of wishes and luck and tons of support and love to each of you. Good luck Janet - shrink that sucker to hell!
Hugs,
Linda
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Posted By: outnumbered
Date Posted: Mar 19 2009 at 4:20am
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Linda,
Welcome to the site. You will find so much support and strength here, I know I have!
You are allowed to feel what ever it is you feel, its what you do with those feelings that matters. I found what works for me is I limit the amount of time I am "allowed" to feel the "negative" feelings. When I got my initial dx last June, I fell apart and gave myself a time limit for the self pity. Then after the time period, I think it was a weekend, I pulled it together, and moved forward. The same thing happened when I fully grasped the TN dianosis in early Feb. I spend a few days in sweatpants with no make up, then I made the decision to move forward. We all face things in our own way, but that is what works for me.
Since I have come to this web-site, I consider myself armed and dangerous. I am armed with the knowledge and support gained here whcih allows me to fight and kick a$$.
You are not alone!
Hugs!
------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: dixiegal
Date Posted: Mar 19 2009 at 4:40am
Linda: I am just a few years younger than you but was no less surprised/angry when I was diagnosed on March 8, 2007...I just finished reading all the posts since you first posted here...and I alternatively laughed and cried -- what a remarkable group of tough smart women here!!  Do take things one day at a time. I have always been a Type A planner and goal-maker...looking ahead... when I was diagnosed, however, I just told myself that I would take off six months from 'biz as usual' to fight this cancer monster. Gave myself permission to cut slack on everything else and just focus on post-lumpectomy treatment. Don't get me wrong -- I DID work 40 hrs a week at my job thru out treatment [8 chemo's and 33 rads] since my husband resigned a job to come back to MN to keep me company thruout the ordeal-- and our health insurance was thru my job... but this all can be done. It isn't easy--there will be hell days but there will also be some clarity and re-prioritizing of what's important in your life... so get ready for a very big fork in the road of life but some very positive experiences as well... some surprising angels around you will perform random acts of kindness when you least expect it [ie, my hair had been gone for about two months when, in a grocery store, a handsome man walked up to me and told me how beautiful I looked that day in my scarf--wished me well and said his wife was 5 years out with no recurrence and he was SURE I would get there too] -- stay plugged in to this sight...lots of support and wisdom here... welcome...by the way I am exactly two years NED (no evidence of disease) now and it does get easier, even if the old fears pop up now and then... Dori
------------- Diag. 3/07 2cm TNBC Stage 1 Lumpectomy 4/11/07, nodes neg, 4xAC/4xTaxol/33 rads |
Posted By: Diane in AZ
Date Posted: Mar 19 2009 at 7:12am
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Linda,
Dear friend, we DO know how you feel! My tumor was almost the same as yours, 1.4 cm, and for the first month I had myself dead and buried. It scared the stuffing out of me. As I look back though, I consider it my wake-up call.
Yes, there are tough times ahead. The chemo they will be giving you are considered the "big guns." I figure that if I have to go to war (and this IS a war), I'd rather have the automatic rifle and not the pea-shooter. We triple negs respond very well to chemo, a lot better than our "positive" sisters.
You WILL survive this! All of these wonderful ladies here are proof of that. Please continue to come back, ask questions until you can't think of any more to ask. We'll answer them for you. And we'll be here each step of the way, holding your hand, and cheering for you when you're finished. ------------- Diane Hope is the thing with feathers That perches in the soul, And sings the tune--without the words, And never stops at all |
Posted By: trip2
Date Posted: Mar 19 2009 at 7:18am
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Hi Linda,
I would like to welcome you from another 62 yr old.
 Actually I was 56 the first time diagnosed and 60 the second time and also am brca 1+.I am still kicking butt and scouring the internet as much as my eyes will allow trying to find us news. Working on my second year since I had to start over but that is ok!
As you have been told, this is an amazing group of women, some have already been thru treatments and we are fortunate enough to have them still pop in to say hello and remind us that women do survive this very aggressive disease and we really appreciate their support.
Others are just beginning like you or partially thru their path. Then we also have the caregivers here who are interested in learning more about what type of breast cancer their loved one has been diagnosed with since as you know so many of us, the whole world, thinks there is only 1! Wrong!
When I was diagnosed the first time I didn't get online, I had a heavy family history and still the idea just didn't occur, why I have no idea.
 That was in 03 and talk about triple neg and brca 1 gene testing were just being whispered around but no one was really pushing the issue to inform anyone who might be at risk and I didn't know to ask.
Neither time was I told I had triple neg bc. That is a plus and good sign you were told!
Right before I was diagnosed the second time I had become familiar with what I had been diagnosed with and starting looking to my dismay only to find just about nothing on triple neg disease!
Then right after that I was diagnosed again, like a big punch in the tummy and mad, hurt, angry, freaked, oh my, they had made a mistake in my mammo report, come to find out I had another lump and boy oh boy you wouldn't have wanted to be in my path that day!
 To make matters worse the second time my daughter who was 39 at the time had been diagnosed the month before me so I had been devastated by her diagnosis then hit again myself and I was then ready to take on the world, look out here I come!
Then one day, I kid you not, out of the sky I came across this new Foundation and they had even been kind enough to give us a forum! I tell you, you would have thought I was a kid at Christmas! Finally, finally, there was actually a Foundation working to help us find answers for this disease and to top it off we women now had a place to come together and this has been my home and family now for almost 2 yrs.
We now have HOPE because of this Foundation! They are doing amazing things for women just like us!
You will find the women here will all wrap their arms around you because they understand. Your feelings of having the rug pulled out from under you are now confirmed, others have felt that too and know what you mean! Your anxiety, fear of what is ahead, we confirm this is all true.
Now the tricky part is pulling yourself together and getting a grip. Absolutely you have a right to those tears, fears, pulling the comforter over your head (that was my fav) but eventually we have to move along if we want to get better.
So one thing I might throw out is take a mild sedative and try focusing on today, this hour whatever it takes to bring back the scope at what your mind is trying to look at, you cannot know what is out there only what is in front of you right now. It isn't easy. As things move along and procedures are done then it does sort of fall into place and we relax a bit.
That is what happens pretty much when we see the Oncologist. We need, you need to be prepared for this Oncologist, we call them the Onc for short here. This person is going to discuss with you what they think your best treatment would be and we want you to get to a place were you are atleast partially familiar with what they are saying in terms of what meds they are throwing out and what questions to ask. This is important Linda!
You are going to have to dig into this website and ask for help, do your research, know what others are getting in the form of chemo and some have rads, what treatment protocols work best for tri neg, that sort of thing. Alot of that information is right here in this forum but might take some digging. We will help you.
Nancy has worked very hard to provide new members with an amazing set of tips and hints for chemo and/or rads, speaking with your doctor, my goodness it will make such a difference for you and I will tell you why.
Because we are our best advocate. We hire this Onc to heal us. We want to hear the right words falling out of their mouth, we want to ask questions and feel comfortable with what their answers are, how they are behaving towards us, do they resent the questions, do they answer them without discomfort.
If we don't like this person we can find another and yes a second opinion is always a great idea if you live where one can be obtained easily.
Also I/we advise you get copies of everything! Scans, path reports, tests, bloodwork, office dictation, everything and start your own file at home.
When you get your copy of your path report look it over. Come online and ask us or find a reliable place to help you go over what it is saying.
Then you can take this as an example to this Onc and ask questions right from there. And any scan reports pre treatment. Trust me you will feel better. Because of our experiences of having been thru this and the things we have sometimes seen happen or experienced that were wrong we don't want this to happen to our new members so we try to forwarn you to be prepared and read your reports closely.
We have a tendency here to be honest so you may read things occasionally that are hard on the eyes and heart but that we seem to feel is better for us to know things than to not. This disease is very aggressive and you want to hit it with all the guns you can pull out right away, the first time.
We welcome you with love Linda and we will do all we can to help keep the fear away, you certainly are not alone.
 ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Mar 19 2009 at 7:37am
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http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/ - http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/
Linda the above link is a good place to look also for information. If you type triple negative breast cancer into their search box it will pull up anything updated. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: LRM216
Date Posted: Mar 19 2009 at 3:49pm
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To my wonderful new sisters Diane and Pam: I cannot thank you enough for your wonderful and insightful posts to me. As I have been wracked with fear and more fear, I can honestly say that you both have uplifted my spirit to a point of making me feel human and alive again. For this I can't thank you enough. The information is all so very informative and I will follow every word of it. I am scheduled for my lumpectomy and sentinal node biopsy next wednesday the 25th of March, so I am busy preparing for it while working until that time and raising my 13 year old grand-daughter, but will post as soon as I have it all done and come up for air. I can honestly say this is the first time in a few days that I have been able to take a breath and realize there is hope - and I owe this wonderful feeling to you fine, fine friends. I wish for you both all good things and succesful healthy futures. Love, Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Nancy
Date Posted: Mar 19 2009 at 3:57pm
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Linda,
And now you too will be as Sara..."armed and dangerous".
 Did you get all the ...quesions, tips, everything you will need? If not...just ask...and you shall receiveMuch love and light,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: LRM216
Date Posted: Mar 19 2009 at 4:23pm
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Got it all, Nancy and so much thanks again! Love to Lori. Linda
------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: LRM216
Date Posted: Mar 19 2009 at 4:34pm
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And to Sara and Dori as well - thanks so much for the posts - God, I needed them. I am beginning to feel as though there is much to fight for and with. Bless you all and continued good health. Will post after my lumpectomy next week.
Hugs,
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: josie33
Date Posted: Mar 19 2009 at 5:53pm
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Hi Linda! Welcome to this safe haven. My sister was diagnosed with TNBC in November 2008 at age 45 and for the first 6-8 weeks after her diagnosis I was depressed, panicked and overcome with fear. Like you, I had read about how "bad" TNBC is and my mind automatically went to the worst case scenario-- it didn't help that much of what you read on the internet about TNBC always talks about a "poor prognosis" with little attempt to discuss or differentiate among the many other variables and factors that make each person's diagnosis and prognosis individual to them. Anyway, we all know this is a challenging disease, but Cathy's (cweed's) advice is so true and really hits home for me too (thanks Cathy!), for those days when my mind wanders over to that dark place: Don't project yourself into a situation you're not in and may never be in! (I know it's hard not to do that, but I think it's really important to try to follow that advice.) As you firm up your diagnosis, stage and treatment plan, and gain more information, I am sure a lot of that fear will change into hope and action on your road to recovery. You will gain so much great information from this forum and, equally important, incredible inspiration and support. It has been a godsend for me and I hope one day my sister will be ready to join too. Best of luck on the 25th and please let us know what happens. All the best, Josie |
Posted By: LRM216
Date Posted: Mar 20 2009 at 5:03am
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Hi Josie: Thank you so much for your kind supportive post, it is much needed and very appreciated! My sister is going through all that you described as you are. She is 5 years younger than me and just sick over this. Thank God for sisters, although I hate that she even has to go through the emotional turmoil of constantly attempting to keep me "steady on my feet" and not burying myself before I have even had my lumpectomy! I will keep you and your sister in my heart and thoughts as well. God bless each and everyone of us and lead safely through this tangled forest.
Love,
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Yankeespie
Date Posted: Mar 20 2009 at 6:38am
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Hi 58 TNBC .... I was writing an introduction and than read what you wrote Pam, all's I can say is I feel exactly like Linda and probably all of you here. I was told I had breast cancer Feb 9th; had a double mastecomy March 9th. No cancer in the right breast, 2.7cm tumor in my left breast, no cancer in the surrounding breast tissue, no cancer in the lymph nodes. I only learned this past Tues. that I had TNBC, my surgical oncologist mentioned the words Triple Negetive but that was it; she did not elaborate on the term TNBC. In my case, it has been like; every corner I turn; there is another person punching me in the gut! When I looked up the term TNBC I too feel like calling the Under Taker I have my first Oncolgist appt. March 25th, and I sure could use some information, and the right questions to ask! Because what I've found so far is if you don't know the right questions you don't get the right information! So I sure would appreciate any and all help. Thank you all in advance!
OH OH !Also if I could ask.... as I said I had a double mastecomy, the only one that has seen my incision's since the surgery is the nurse that removed my drainage bulbs. My biggest concern is the swelling under the arm pits and now swelling where the incisions were. Is that all normal? Is there anything that can be done for the swelling?
Thank you again,
Bev
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Posted By: Jackie
Date Posted: Mar 20 2009 at 6:42am
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Hi.
I was a young 58 when diagnosed in September of 2007. I was not even aware of triple-negative and when I my BS said it was neg for estrogen, progesteren and HER2, I said "Great, I like negative!" He was very quite and just told me to call his office the next week to make an appointment. He knew I was driving somewhere in the mountains alone returning from a business trip and didn't want to tell me. This was on a Friday. On Tuesday I was exploring the web and not sure what to do or who I wanted to treat me and found the triple negative. Up to that time (about 1.5 weeks) I had not even been concerned about this as I had heard most early stage BC was being cured. I[I had put off talking with a doctor to go on a business trip that could have waited. I just didn't get it].
When I found out about TN,I felt just like you and I was devastated. I was sort of out of it for a while and not able to cry or anything as I explained to my family that I had a different kind but it was okay. The hard part is most people don't know about these cancers and just brush it off by saying "oh they cure most breast cancers now". I would feel kind of out there by myself! [But I wasn't and neither are you!]
I interviewed many doctors and most were straight about the difficulty but noted that chemotherapy is often very effective with these cancers if gotten early. [Except one onc at Duke told me she "might not even treat it".]
I had a mastectomy after finding out that it was TN. My surgeon said I was a "candidate" for a lumpectomy, but that it was my choice. When they performed the surgery, they found an additional 7 mm cancer that had grown in 5 weeks between my biopsy and surgery so I was glad about the mastectomy. TN grows so fast. My limp nodes were clear. I was told that even though my lymph nodes were clear, I might have a few cells that got into my blood and were busy producing in my liver, lungs, brain, or bones. So, chemo was required, but not radiation because of the breast tissue being removed and I had clear margins.
The bad thing is that they cannot target any particular chemo especially for TN. I had taxatere and cytoxen and am doing fine. I finished my chemo January 19th 2008. Some residual side effects are noticable by me but not by anyone else. Now, a little over a year later many new treatments are being discovered and that gives me real hope for newly diagnosed patients and for my future if it were to metastasize.
You will get through this. Get a doctor that will talk to you and explain the treatment and her reasons. Ask questions, and take someone with you. I too thought about a double mastectomy...my daughter who is an attorney really wanted me to do this. One of her young friends had done so after being diagnosed at age 30. I was assured that even though it may mean that I am at greater risk for other cancer in the other breast, this is not necessarily going to happen.
Hang in there and it will be over soon. I was amazed at how I managed to handle the pain and all the other stuff and you will be too. A positive attitude is very important. I also read a lot of books on
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Posted By: Nancy
Date Posted: Mar 20 2009 at 6:52am
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Hi there Bev,
Welcome, and those 3 little words are very powerful indeed, and are a punch in the gut from the time they are spoken. You are not alone in not knowing your TNBC diganosis. Since TNBc is a very aggressive type of bc, and responds very well to chemo, many fight this very aggressively. By having the double mastectomy you just reduced the risk of another primary, and node negative is a good sign also.
You have definitelt come to the right place, as this is the only site dedicated to women dx with TNBC. When you go to the oncologist you need to tell her/him that you want to be tested for the BRCA gene mutation. This is a mutation which is inherited, and due to the fact that both your parents died from cancer, there is a strong possiblity that you have this mutation.
Now, I am going to send you a private message with my em ail so that I can send you information which I know will be beneficila as you begin this journey. Our resources will give you the info to ask all the right questions, and help with your decisions going forward.
You are now among the most intelligent, compassionate and loving women you will ever have the pleasure of meeting. There will not be a day that you post that someone does not respond, and they will be truthful also. No beating around the bush on this site. We are bound and determined to save women's lives...one by one.
Many hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: trip2
Date Posted: Mar 20 2009 at 7:02am
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Good morning Linda,
It is good to see you are feeling better.
I saw the word "sister". I am not sure if you have been told about genetic testing but I hope you will consider getting this done if we haven't mentioned it yet. http://www.facingourrisk.org - http://www.facingourrisk.org
Please consider genetic counseling, many triple negs although not all have a brca 1/2 mutation and if positive the family needs to know so that they can be tested. Also your sister should be vamping up her vigilence with your diagnosis and sharing this info with her doctor.
You bet you have alot to live for and alot to do so you are doing the right thing, prepare for the upcoming surgery, line up some help, I hope you have good support around you.
We look forward to hearing from you afterwards to see how you are doing and you have our prayers for a quick recovery.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Mar 20 2009 at 7:19am
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Hi Bev and a welcome hug for you .
I too have had alot of family history with cancer and it is unbearable really to see loved ones going thru this type of thing. Especially when there is so little we can do other than love and support them.
I am so sorry you too have been diagnosed, yep those 3 words are a real punch to the tummy for sure and it takes awhile to pick one's self back up and get a breath but you can do it.
I do want to say with the swelling, your surgery was not that far away and it takes awhile to heal from a bilat but I would call your surgeon's office with any concerns, they need to know! Is there any redness?
Any temp? Signs of infection?
Soon after my bilat I came down with MRSA and had to have the drains put back in, you don't want that, watch out for infection!
I am amost 2 yrs out from my bilat and am still puffy and tender although think most of this is lympedema.
At the top right of this page you will see a link called Resources. Click on that, then a drop down will appear, click on "questions to ask my doctor", this will be handy for you.
Ask us anything we will be happy to help. Good luck next week and let u know what you find out.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Yankeespie
Date Posted: Mar 20 2009 at 7:40am
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I think I should just keep putting Ditto's under Linda's post! I am so happy to have found this site.... You are all angels and Thank you so much for the warm welcome and kind words! This is a much needed website!
Yes Pam as you well know....The hardest part thus far for me is having to tell my Family and Friends! I know just how they are feeling, and that breaks my heart! I'd rather been hit by Train, than to tell them I have Cancer.
 No redness, No fever,No signs of infection thus far.... And I will most definately keep you all informed. Knowledge is Power!
OMG NO.... I don't want those dreaded bulbs back!! So sorry to hear you had to go threw that.
I'm just curious, did they give you a MRSA test before surgery? Here in Maine its mandatory?
Blankets of Hugs around all my new found friends,
Healing Blessings for all,
Bev
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Posted By: Luv2sing
Date Posted: Mar 20 2009 at 9:34am
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When I was first diagnosed I was terrified as well. But as I began to read and chat with the women on this site, my fears decreased and I became more encouraged. I've gotten myself to a point where I want to educate people when they ask about TNBC and I try to read as much information as I can. I have a friend who was diagnosed in 2005 and each PET scan was coming back with not so good news. This past Wed. she had a last rad tx, did her PET scan and it finally came back with 'no abnormalities'. We were both thrilled!
Just remember, you are not alone and there is always someone here for you to talk to, vent and share.
------------- Raymon 
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: sharon C Herber
Date Posted: Mar 20 2009 at 9:44am
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Hi Linda and all--Linda, is there some reason you have not considered neo-adjuvant chemo before the lumpectomy? I know it's horrible to face another decision when you think you've got the treatment set, but the advantage to neo-adjuvant is they can actually tell if the chemo is working. It is always surprising to me how many of us go straight to surgery without consulting an onc. I think it's part of the surgeons' "god" complex.
anyhow, just a thought. Sharon ------------- dx 03/05 multi focal with lymph involvement, stage II/III 4 dense dose A/C, 4 taxol, bil mast 8/05, 38 rads, NED |
Posted By: LRM216
Date Posted: Mar 20 2009 at 11:56am
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Sharon: How lucky you were to know about this. I did not - at all - and no, my surgeon never mentioned it. However, in all fairness to her, up until only 2 days ago, we didn't even know what my Hormone receptors were or weren't. Apparently my gyno did not check that off for testing by the pathologist when she was asked for the order for my biopsy - which was necessitated through my yearly mammo being read and my being called back for recheck of it. I certainly thank you for mentioning it, but due to my lumpectomy being scheduled for the long-awaited 25th of March, I guess I will just have to see the onc as early as possible after same. Linda
------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: trip2
Date Posted: Mar 20 2009 at 4:02pm
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Luv2sing,
What wonderful news to read about your friend, finally having a good PET!
I am so happy for her!! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Mar 20 2009 at 4:05pm
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Sharon, that is a good thought. I don't know not having had this myself how this works really.
Is it just because you run into the surgeon who is on top of things or one who isn't? We usually get sent to the surgeon first and with the stress of being diagnosed we rely on them to give us the best advice. I know some go by the size of the tumor but do they all?
If they are not connected thru an Oncology hospital/clinic I wonder how many are passing on this information? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Mar 20 2009 at 4:14pm
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Thank you for the hugs Bev, I love hugs!
No I was not tested for MRSA, this was in 2007 and they may do it now.
I did learn recently my file now has a red flag with letters proclaiming to all in red I've had MRSA so they'll see me coming if I ever have to go back in there, sure hope not.
You are right, it is very difficult to tell your family you have cancer. It isn't ever easy for anyone to have to share this news with their loved ones.
When you have had alot of cancer in the family it even gets more complex if that makes sense, the last thing you want to do is say is it's here, it's back and we certainly don't want to hear it. I so hate this disease.
I just learned a couple of months ago that my only sibling, my sister has been diagnosed with CMK Leukemia. I am the oldest then her than our children. Our family has been demolished.
Let's hope and pray in our lifetime and especially even more so in our children's lifetime that they find an end to this horrible disease.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: LRM216
Date Posted: Mar 20 2009 at 4:50pm
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My surgeon is connected to oncologists, radiation, etc. She is in a group of 5 women breast surgeons - large waiting list for each (Atlanta, GA), two female radiologists and they are all simply wonderful and have exemplary reps. I am confident in that she would be on top of this; however, we only found out 2 days ago that I was triple neg. Had we found this out when the first Core needle path report came in (Feb. 23), she might have ventured into the territory Sharon speaks of. THink I'm going to give my gyno, who I also love dearly, a call Monday and remind her on all future biopsy orders, that she doesn't omit checking off those so important boxes. I would like to know this won't happen to the next gal she needs to write an order for.
Hugs,
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Nancy
Date Posted: Mar 20 2009 at 4:54pm
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Sharon,
You are so right. The surgeon "god complex" Let's see now...breast cancer....oncology....oncology....breast cancer. I do believe they go hand in hand. Looks like a no brainer to me
You should have a choice as to who you want to see first. If the oncologist is the one you will be seeing for many years after, she/he is the one I would choose. The surgeon...yeah she/he better get it right and get clean margins, but that onc is the one who will be determining which chemo will save your life.
Lori saw the breast surgeon for the mastectomy, and then she had a plastic surgeon, one who does reconstruction for women who had breast cancer. The med and rad onc...ongoing relationship for many years.
Lori's onc told a friend that the women should be having mastectomies, as he was seeing many return who had had lumpectomies.
As to the MRSA. A friend's father died a few months ago. He had knee replacement, 92 years old. Contracted MRSA when in the local hospital. That was not the cause of death, he had a heart attack. But...about a month ago she received a letter apologizing for the fact that her father had contracted MRSA while a patient in their hopital. Gee, they are finally admitting that they do not practice good infection control? What other revelations will we hear?
We know that Pam contracted MRSA while in the hospital. There is not another more germ/bacteria laden place to aquire it than in a hospital.
Ok....enough..hugs,
Nancy
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: trip2
Date Posted: Mar 21 2009 at 7:00am
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Nancy, I am very sorry to read about your friend's father passing.
I am very happy to hear the hospital's are finally owning up to the MRSA contact, atleast one is anyway, maybe more, that's a beginning.
I wonder if the hospital I went to shouldn't be waving the red flag instead of me.
I happened to get ahold of a very compassionate, good surgeon, good at his work, knew his job, loved his personality but when it came to him giving out bc info he was way behind times. I had to learn this myself the hard way and I have read other women's posts here saying their surgeon tells them oh you have say a 95% survival rate of being cured! Yes oh boy we sure do if and if and if and it isn't, do you know what I mean?
Everyone's cancer is different, we are individuals and for them to spit out a 95% cure rate which we will hang onto with all of our heart because we think we will be cured, well that isn't going to get it anymore. Women are getting too smart and some of these docs need to go back to cancer 101.
Linda you sound like you are in a wonderful place and you are correct, they botched the pathology initially so therefore your info came later than it should have and you are wise to make sure this doesn't happen again. Unfortunately we have to do alot of these types of things to try and keep those we count on from slipping up. Yes they are human but we have been diagnosed with cancer and we want answers, yesterday!
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: nanny
Date Posted: Mar 21 2009 at 10:12am
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Hi, Linda: You will survive! Believe it. I am another Linda who was diagnosed with triple negative BC. I am 3.5 years clear now, and 63 years old. My tumor was 2.5, still early, so yours is very early.Did you know, that Triple negative responds very well to Chemo. I moved from California to Texas to receive treatment at MD Anderson Cancer clinic in Houston. The best in the Nation. I do not regret for one minute having to relocate. I am healthy now and intend to stay that way. I recommend a second and third opinion on treatment. Treatment consisted of Neo adjuvant FAC chemotherapy, Segmental Mastectomy, then 30 Radiation treatments. The treatment was the hardest thing I have every done. But I did it. You need the best Dr's you can find. you will need support for all aspects of the treatment. You will survive! Never think otherwise.  |
Posted By: LRM216
Date Posted: Mar 21 2009 at 10:30am
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Happy Saturday, my dear friends! Pam: Maybe it's better I just found out later- probably only would have been more despondent for the last 4 weeks, rather thanjust since the 18th! But you all have helped pull me up from the bottom so much.
Nanny: God Bless and may every day for the next 50 years at least be a healthy one for you. I needed to hear what you too had to say. Just this morning I went to a local wig shop to pick out a wig in preparation for when my chemo begins (about 3 wks. I would guess) and there was another newbie in there who just had her first treatment of chemo. She is ER/PR+, but 2her+ as well and is quite concerned, but still managed to say to me when I told her I was triple neg - Oh, God you are even worse off than me! Don't you love it. Where are people's brains - sometimes I think they have them up their arses!
To you both - many hugs and kisses.
Love,
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Nancy
Date Posted: Mar 21 2009 at 10:31am
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Hi nanny,
To my friend Caroline fro The Netherlands...I am Nanny
3.5 years from dx....whooppeeee!! That is music to our ears!! Nanny, I was under the impression that there were good cancer treatment centers in CA. Not?I am sure you would not have relocated if you thought they were. I just sent a private message to AC and JC, husband posting for his wife, and told them that I thought CA had good treatments.We have a few members who live in Houston, and the surrounding area. Txhart...another Linda is one.
So glad that you have joined and now one more knowledgeable/intelligent/articulate TN gal to cheer all the new gals on.
Welcome and please post often
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Nancy
Date Posted: Mar 21 2009 at 11:03am
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Linda,
Ahhh! Wait until you hear what others have to say. See, I don't give "those people" any slack whatsoever. Some say...well they mean well. Give me a break
 I don't think so!!!! Who raised these people? If they meant well, they would just give you a hug, tell you that they will be thinking of you, and then offer to come clean your toilet! Their heads are where you say they are
This woman I give plenty of slack...she too has been dx. It's the ones who tell you "oh you will be fine....my aunt Ruthie had bc 20 years ago and she is fine". To which you reply...this is not your aunt Ruthie's or your grandmother's bc. Or the ones who tell you that all the treatments are over and you just have to forget about it and get on with your life. YEAH! RIGHT!
Then you do a search for Connie by clicking on her "user name..."cg" and print out what she tells these people. You will be laughing for days Linda...that's a promise. Damn! Connie has the best replies ever! Some day I will take the time to search also and then I will type a document with not only her replies but everyone's replies. Instead of "Kids say the darndest things" it will be "Inconsiderate people say the stupidest things to people dx with cancer and your responses".
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: trip2
Date Posted: Mar 21 2009 at 11:38am
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Hi Nanny ( Linda), it is so good to hear from you and yes, we love being reminded that there are alot of TNBC survivors out there, thank you for joining up and reminding us! Congratulations to you.
You are so right also about the support all of the way around. Also lots of help from family and friends can make a big difference.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Mar 21 2009 at 11:46am
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Oh good grief Linda, what a thoughtless thing to say to someone! Be prepared though, you will probably hear something again before it is over, there is occasionally that air brain lurking with a comment you could do without.
In our Resource section we should have a set of links for various headcover type things like wigs, caps, scarves. I'll see if I can find it for you.
I do know http://www.headcovers.com - http://www.headcovers.com has a large selection of alot of things, http://www.tlcdirect.com - http://www.tlcdirect.com also has many things.
That is hard going for a wig. The first time I was diagnosed I was like you and was so scared out of my wits and hubby told me he would buy me a wig. I wouldn't go. Eventually he talked me into going wig shopping, we found one and brought it home, I wore it once. That was me.
Myself I found the caps more comfortable and would even go with a scarf if it were cotton. Some love the wigs and boy they can sure make some that look just like real hair, it is amazing. Summer is coming up so you may find it hot at times. So you might consider picking up or ordering a couple of caps or scarves to wear even around the house and to bed if you like.
That's good that you are preparing ahead of time, it will help you in the future. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: Mar 21 2009 at 11:58am
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hey gals,
We also have a member on the site who will send all of you a beautiful head scarf or wrap....free. The women who have gotten them say they are georgeous. Here is the link and the toll free number.
Hugs,
Nancy
http://www.franceluxe.com/ - http://www.franceluxe.com/
888-884-3653 ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: LRM216
Date Posted: Mar 21 2009 at 1:16pm
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Once again, Pam and Nancy - much thanks for the new info re head coverings. ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Luv2sing
Date Posted: Mar 21 2009 at 1:56pm
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Hi Nancy, Tried the link but it doesn't seem to be active. It says the domain is for sale. ------------- Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: Nancy
Date Posted: Mar 21 2009 at 3:16pm
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Luv,
I will email Laurie and get back to you.
Nancy
try the link now. It came up for me and click to the right of where it says good wishes program and TNBC.....free headscarf for women with breast cancer. I did email her. But the link did work for me. ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Luv2sing
Date Posted: Mar 22 2009 at 4:27am
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Thanks! That is not the site I saw when I went the first time!
The scarves are beautiful!!! ------------- Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: Nancy
Date Posted: Mar 22 2009 at 6:33am
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Luv,
It was not you it was the site. It came up domain for sale when I tried it also. I got an email back from Laurie, deleted the first link, and put it in again. Sorry for the frustration. You gals do not need that. Many times when a link sits inactive it will not come up at all.
Hugs.....hope you have a great day...
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Luv2sing
Date Posted: Mar 22 2009 at 3:27pm
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Hey Nancy,
I emailed her and she actually responded shortly after (I'm impressed) receiving my email. Here's the funny part ... apparently she went to my myspace page ... on the page is a link to a friend of mine named Valerie Joseph and thought I was Valerie
. Valerie was diagnosed in 2005 with BC and later found out she was TN. As the years went by it became financially challenging, so some of her friends set up a website to advertise an auction they were planning for her and to accept donations via the site.
I placed the link on my myspace and blackplanet pages to help out. FOUR MONTHs LATER, I was diagnosed with TNBC!!!
 She was just as shocked as I was and came down (she's in NC) to see me, talk to me and share her wisdom. This is also my friend I previously mentioned who just got back the good report from PET Scan last week. I responded and explained who I was and who Valerie was, but I just found it so funny!! ------------- Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: Nancy
Date Posted: Mar 22 2009 at 3:43pm
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Luv,
Laurie has been so great in responding to all the women here on the site. That was quite a mix-up with you and your friend.
You should have your friend Valerie get in touch with Laurie also, and tell Valerie that I sad WHOOPPEEE !!!!!!!! for the great report on the PET scan. Did you pick out a scarf? Which one? Laurie wasn't on the site when Lori was dx, and I have not seen a picture of any of the gals with theirs. Some day we will have all your photos to look at when we write to you. Of course I have gone to your webpage and I saw your picture and that of your family.
Let me know when you get the scarf.
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Luv2sing
Date Posted: Mar 22 2009 at 7:01pm
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Nancy, When Val came she brought me two head scarves, but the material is more for the cooler months. The one I picked on the site is called 'samba', I love the colors. She prefers to wear wigs cause she always wanted long hair. If you were on my site her picture is the b/w with her and her son mentioning her site. Hope you liked the pictures. Did you go thru the photo albums? One of them is pictures of me going thru my treatments and stuff called 'My Triple Negative Journey'. My family has a bad hx of cancer. My father had esophogeal cancer, my mom intestinal cancer, my oldest brother leukemia and other brother adrenal cancer which eventually spread throughout his entire body (that's his memory box on my site). They all succumbed to their cancers and my mother and two brothers died before reaching the age of 50, my father reached 54. I'll be 46 on April 20th and we've already claimed the victory that I will see MANY MORE BIRTHDAYS!!!
Once I get the scarf I'll take a pic and send it to you. ------------- Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: Nancy
Date Posted: Mar 22 2009 at 7:28pm
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Luv,
I did go through the album but will do so again. I got on your site when you first joined, but apprently you keep up dating it. I did not realize that you have lost so many dear loved ones. My heart goes out to you sweetie, and they just have to find a cure. You will see many more birthdays Luv, and I know you are having a bad time with this chemo, but you will get through this...and we will help you all the way.
Your family story is just like Pam's. She has lost her entire family to cancer. Her sister was just dx with leukemia, the only remaining family, and the medication will cost her $800.00 a month...$800.00 they do not have.
Luv, have they tested you for the BRCA gene mutation? I cannot remember if you mentioned that. Seeing that both of your parents had cancer there is a distint possibility that the BRCA gene mutation is there. Please ask for the test. This affects not only you but your children as well.
I would love to see the picture with the scarf and I bet you will look beautiful in it. I have to check out the scarves and see which one Laurie is going to send you. They do all look beautiful. By the way...Lori will be 47 on April 21st. You are just one year younger than her.
Much love and many hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: outnumbered
Date Posted: Mar 23 2009 at 6:27am
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Pam mentioned tlcdirect (on pg 4 of this thread). I was wondering, has anyone gotten a wig from them? I am looking at a monofilament but was concerned about the quality of the synthetic hair. I have seen and felt wigs from other manufacturers, but I do not know whose these are other than their own. They are pretty inexpensive.
Thanks ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: Jackie
Date Posted: Mar 23 2009 at 6:36am
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Outnumbered,
I don't know about monofilament, I do know that I wore a synthetic wig for about 8 or 9 months. I bought synthetic because it did not require me to dry and set and "fix" the hair like wigs with human hair. I did spend extra money for a hand-tied wig that was lighter in weight, not hot and easy to wash and dry. I just swished it in wig shampoo, rinsed it and let it soak for 5 minutes in wig conditioner. Then put it on a plastic wig holder to dry. In a couple of hours it would be dry. Then you shake it out and comb or brush it a little and it is good to go. I have naturally platinum looking blonde hair and they were able to match it and order the wig. I was surprised that it was a "Raquel Welsh" wig as I had assumed that would be a lesser quality. Everyone thought it was my real hair unless of course they knew.
I hated in a way to stop wearing it as it was so easy in the mornings when I was dressing for work or other appointments.
Good luck on your search. I went to a local wig gallery (Angel Hair Wigs) that was owned by a former nurse who cared for cancer patients. She recommend this type of wig.
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Posted By: outnumbered
Date Posted: Mar 23 2009 at 6:51am
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Thanks Jackie. Monofilament is synthetic hand tied but the front is tied to a lace like thing that when you part the wig, scalp shows just like your natural part. I have liked some of the styles of the Raquel Welsh wigs I have seen online. I am glad to hear that you liked the way it felt. That helps me. I like a style that is at the TLC website but they do not list who makes the wig. I have also seen several from Renee of Paris I like and I have felt them and they feel pretty nice also. I am just hesitant to order online without touching it first, but I do not like anything my local shops have.
Interesting story. I went to a place that is specific to BC selling wigs and prostesis, hats, bathing suits, etc. It was not affliliated with a hospital. They quoted me a price of $695 for a wig that was list on the web @ $300. You could even get it cheaper than $300 on sale. When I questioned them, they said the price was for personlaized fitting and trimming/styling. I have never had a $395 haircut before, have you? I reported them to ACS. How dare they take advantage of us like that! ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: CarynRose
Date Posted: Mar 23 2009 at 7:30am
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Sara, If you find a local place for wigs, let me know. I went to one place in Trenton and was gouged. This time, I have a prescription for a cranial prosthesis, so insurance will pay, but I want to get something that looks more natural than the wig I got last time.
Hugs,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: outnumbered
Date Posted: Mar 23 2009 at 7:40am
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Caryn
There is a guy in Hamilton I am checking out. A friend of mine went there and is quite happy. I will let you know if I get there. I am emailing him today to set something up. I have also been to a wig shop in Somerville, small selection, and a boutique at Steeplehase Cancer Center in Somerville, also a small selection.
The place I went to that gouged me was in East Brunswick. Thank goodness I googled the wig to check it out before hand. I am not sure if they mark everyone up, or if they only marked me up since my insurance covers $500. Since my insurance covers that much, why would I want to blow it all at once. Maybe I will get a hair/hat thing, or a second stye. There is special place you know where for people/business like that who take advantage.
How you feeling?
Hugs,
Sara ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: Jackie
Date Posted: Mar 23 2009 at 7:54am
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Hi Outnumbered
We have four really good wig shops in the Raleigh and Cary area. I went to a few. Angel Hair is not affiliated with a hospital. The owner ordered mine for me to match my hair. Maybe the local place could order as well. My wig was supposed to be $295, but she discounted it for me and after I bought shampoo, a wig brush, and wig hairspray, with tax it was $283. It was well worth it for me as I look REALLY bad in hats and scarfs!
Where are you located?
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Posted By: outnumbered
Date Posted: Mar 23 2009 at 7:57am
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I am in NJ I have been to a few places, I think I am just not easy to please... ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: Jackie
Date Posted: Mar 23 2009 at 8:05am
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Yes, I was hard to please as well..thus the special order.
My insurance did not cover it even with a prescription from my oncologist. Even my cancer policy did not cover it.
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Posted By: trip2
Date Posted: Mar 23 2009 at 8:25am
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Well Sara hold your ground and make sure you are happy with what you decide to buy. You will be wearing this for awhile so you want to be happy with your product.
I have not purchased a wig from tlc but have bought other products and if I recall their return procedure is easy enough. But I do underestand that buying and returning can be stressy and a nuisance.
My daughter wore a wig that she was very happy with, it had a natural part and did look very real. I do not know what kind of wig it was though.
I feel like the shops who specialize in items for those of us who will have hair loss, surgeries, special clothing do tend to overprice. I have wondered if it has to do with insurance companies in part and the arrangements they make between the two of them.
I haven't purchased wigs but have bought the prosthetics/bras and found them, the swimsuits that I glance at to be very high! You can look at these items online as you have the wigs and see the prices and some are terrible. Most people going thru a major illness do not have that kind of money themselves to spend on wigs, prosthetics/bras, clothing etc.
It's a good thing insurance helps on this type of thing but if one wants to shop on their own for extra things most of these items are out of range for the casual shopper. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Jackie
Date Posted: Mar 23 2009 at 8:44am
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Sara, Sorry I didn't see your name before! My daughter is Sara without the "h" as well!
The Raquel Welch wig I bought had the natural part. The store owner told me that the hand-tied wigs most often do have the thin mesh that allows your scalp to show through and therefore give you that natural look.
Hope you find what you like.
Jackie
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Posted By: Luv2sing
Date Posted: Mar 23 2009 at 10:47am
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Hey Nancy!
I did sign a form giving permission to the BRCA, I don't know that it's been ordered. Isn't labwork? I'm going tomorrow to have my labs done prior to my next tx. Is it a special type of labwork or can they do it while drawing for my other labs?
I've always felt the most beautiful people are born in April
!
------------- Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Nancy wrote:Posted By: trip2
Date Posted: Mar 23 2009 at 11:03am
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Luv2sing when you have bloodwork drawn for the brca 1/2 test it is sent out to Myriad Labs in Utah.
I would ask if I were you and interested. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: LRM216
Date Posted: Mar 23 2009 at 11:30am
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Don't forget Ladies that The American Cancer Society has a free wig program. Call their 1 800 number and tell them you need a wig and they will connect you with someone in your area.
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Nancy
Date Posted: Mar 23 2009 at 11:39am
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Luv,
Here are some links to Myriad. This is a simple blood draw. Perhaps your onc already did it, and that is the reason you signed the permission form? You might want to ask. Lori's tests were back in less than 2 weeks. She is BRCA-. She has 2 daughters and a son. The daughters have a 50% chance of developing BC, and the son, 30% of developing some type of cancer if you test BRCA+. I believe that is correct, and is not some one will chime in and correct me. 85% of BRCA1+ are TNBC.
Hugs,
Nancy
ps...I saw Valerie and your brother's memory box....how beautiful...both Valerie and all the photos of your brother.
I spent about 45 minutes going throgh your entries. http://www.myriad.com/ - http://www.myriad.com/
http://www.myriadtests.com/ - http://www.myriadtests.com/
http://www.myriad.com/products/bracanalysis.php - http://www.myriad.com/products/bracanalysis.php ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Luv2sing
Date Posted: Mar 23 2009 at 11:43am
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Nancy,
45 minutes ... WOW!!!!!
I'll check on the testing ... I debating about switching oncologist if she doesn't offer the neulasta or neupogen next time or if my tx is delayed because of not receiving the shot after the first tx. My brother became neutropenic and I don't want to end up that way. ------------- Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: Nancy
Date Posted: Mar 23 2009 at 11:54am
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Luv,
And that is definitely your perrogative...the oncs need to be looking out for you an your well being. That Neulasta or Neupogen is so important. It may make your bone marrow stress, but if your brother developed it there is a possibility that you could also. It is not wise to delay any of the treatments.
Yep 45 minutes, and you will have to let me hear some of your voice overs. The song which is played is just beautiful. Maybe that is why I stayed on so long!
I was quite a singer many years ago. Soprano at that time... not now. I sang for many many weddings, in church all the time, and many functions in school, and auditioned for the Tommy Dorsey orchestra in 1958. At that time it was under the direction of Warren Covington. They called me to sing with them in November of 1959, as their singer was leaving at that time, but I was getting married on December 12, 1959. Just a little history lesson here Luv.
 Hugs,
Nancy
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Luv2sing
Date Posted: Mar 23 2009 at 12:24pm
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As you can see by my screen name ... I luv2sing!!! My best memory was I got to be one of the opening acts for the Charlie Daniels Band back in the 80's (WHEW!!!!!) I'll email you one of my voiceovers, tell me what you think ... I also produced, edited and recorded the spots ... had to learn all that stuff when I worked in radio. ------------- Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: Yankeespie
Date Posted: Mar 23 2009 at 1:38pm
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I don't believe I was tested for the BRCA either so I will asking for that test also! Anything to get you running back and forth!
But what my Doc did recomend me having was a ONCOTYPE-DX. And said the only one that could order that test was an Onco. Prob said that so I would go see an Onco.
Oncotype DX, created by Genomic Health, is a diagnostic test that quantifies the likelihood of disease recurrence in women with early-stage http://en.wikipedia.org/wiki/Breast_cancer - breast cancer and assesses the likely benefit from certain types of http://en.wikipedia.org/wiki/Chemotherapy - chemotherapy .
Have any of you heard of that?
Also if anyone knows what does the HER2-1 mean?
Thank you in advance
Blanket of Hugs for All,
Bev ------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: Nancy
Date Posted: Mar 23 2009 at 2:16pm
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Bev,
The onco testing is not for TNBC.
Her2-
http://en.wikipedia.org/wiki/HER2 - http://en.wikipedia.org/wiki/HER2
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: trip2
Date Posted: Mar 23 2009 at 3:05pm
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http://cme.medscape.com/viewarticle/421097_5 - http://cme.medscape.com/viewarticle/421097_5
http://www.oncolink.com/resources/article.cfm?c=3&s=38&ss=143&id=319 - http://www.oncolink.com/resources/article.cfm?c=3&s=38&ss=143&id=319
Bev the above two articles should help you with your questions. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Yankeespie
Date Posted: Mar 23 2009 at 5:19pm
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Thank you Nancy and Pam for the links..
Nancy this is what I read on that test.
You may be a candidate for the Oncotype DX test if:
Blanket of Hugs for all!
Bev
------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: outnumbered
Date Posted: Mar 24 2009 at 4:24am
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Hi Bev,
The third item excludes you from the test. It is for those who are hormone receptor positive. The test is not for us triple negatives. They are working on one for us, though.
I think you asked a question earlier regrding the 1+ associated with your Her2. Basically, most tumor cells express a certain amount of her2. If it is over a certain amount, I think 3, but I may be mistaken, you are considered her2 positive. I am also 1+ and we are considered to be her2 negative.
Hugs! ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: Yankeespie
Date Posted: Mar 24 2009 at 5:11am
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More surprises! Thank you for informing me outnumbered I really appreciate it! It's just another rant for my long list I've got going And these are the same people we are entrusting our lives with! What's wrong with this picture???
If you ask me it's plain and simply negligence, and if they were held accountable they might do their jobs properly!
Blankets of Hugs (One and All)
Bev ------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: outnumbered
Date Posted: Mar 24 2009 at 5:31am
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oh, if you want to hear me rant, go to a thread called surgery no chemo.
I think the problem is that many of these doctors don't know what they don't know. Yes, I am sure there are some that do just stink, but others just don't know about us since we are only 15% at best of the bc population. My first oncologist saved my life in that since we knew her prior to my dx (my husband worked with her) they did an excisional biopsy even though they thought I just had an infected lymph node. If I did not have connections, I would have been told to come back in six months. So I will give my former oncologist credit for that, however, I actually came across her hand written notes just yesterday where she said I only had a 2% risk of recurrance. True if I were not TN. Doesn't know what she doesn't know...
Unfortunately, we have to be educated enough so we can fill in the cracks.
Hugs!! ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: Yankeespie
Date Posted: Mar 24 2009 at 5:47am
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I've been working on my Rant since 7:30 this am so hope your ready for my Short Book... ------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Almost done HeheheehehPosted By: krisa
Date Posted: Mar 24 2009 at 6:05am
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bev, i was tn, and my onc sent my tumor to oncotype anyway...to get a second opinion.. if my tumor was accepted then i wasn't tn, if it was rejected, then that would confirm the tn diagnosis. i fit the criteria with no lymph nodes and stage 2. |
Posted By: Yankeespie
Date Posted: Mar 24 2009 at 6:25am
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Good Morning Ladies, I hope you all are feeling well and in High spirits! First I would like to Thank Nancy for sorta taking me under her wing, by being kind enough to give me her email address, and letting me write her with all my Brain Fog, rants, and ramblings! This foundation is very lucky to have a gal like her; I only wish she was my Mum! As for the ONCOTYPE-DX testing and related subjects in the forums; very interesting! Again I have The first thing I would like to say is how anger I am, not because I was so unfortunate to be given a BC Dx, but how I have been given the run around with information. The way I try to describe it is; I’m walking down a street and catching a much needed breath of fresh air, I turn the corner and get punched in the stomach again!!! I wouldn’t treat my worst enemy like that! It’s been a rollercoaster ride that I can’t get off L. The sad part is; it doesn’t have to be that way AT ALL. I don’t know about the rest of you but I want honesty. Like my grandmother always said to me, “Say what you mean ~ But don’t say it mean”! They drop WORDS here and there, like your cancer is a Nasty Actor. Now what the hay does that mean to me? When I questioned that remark she said it’s a very aggressive form of cancer. I say; Ok well what do you recommend than? She said lumpectomy I said ummm NO double Mastectomy. She said fine we can do that. I felt like I was buying a new car, and adding extra’s like power windows, air conditioning or whatever! When you are first Dx with cancer, speaking for my self, you don’t know if you are coming or going, you turn into a bowl of jell-o, and you can’t wait to go to the Doctor’s to get answer’s! I’m sure you have a general idea of what I’m talking about so I won’t bore you on that any more. As for my Surgical Oncologist recommending that I have the ONCOTYPE-Dx test, she did say that it would have to be ordered by my Oncologist; and that the test would serve to tell them what the chances of recurrence would be in my case and to help them best serve me as far as treatment I would need. I said OK what do I have to do for this test. She said nothing; we would send a piece of your tumor to be tested. I said you have my tumor still? And she said yes! Now that surprised me! Now when a person looks like a deer caught in headlights wouldn’t you think they would elaborate on certain subjects!!!!! I said ok sounds good let’s do it! How long do they keep your tumor, and do they have the right to do what they will with it? I mean its MY TUMOR it wasn’t a donation! Don’t get me wrong it’s not that I wouldn’t want them to have it, if it could help someone else, but ASK! Now after reading what y’all are saying here, I will now be ready to duck when I turn this next corner, when the Onco. Says sorry you can’t have that test. Now this brings me to my next rant… and why I feel as I do. OH but first, I want to share this story with you if I may.. And it’s not to start another controversy subject; it’s intended for food for thought. I chose a double Mastectomy because I didn’t want any possibility of going threw this nightmare again; I mentally couldn’t deal with it again if I didn’t have to, nor would I want to subject my body to it again either. I felt my body needed all the strength it could muster up to fight what might be ahead. Just before my operation, I had to have a radioactive dye injected into my breast that had the tumor. I had the good fortune of having the same Dr. that read my MRI ministered it. She had very kind eyes and she spoke from her heart to me, she said to me without any prompting from me if I might add, I’m so glad you choose to have a Double, she said it breaks my heart to see all these women that have a lumpectomy only to have them come back with another tumor and most times even worse. She said you have made the right decision! Those were the most compassionate words spoken too me in the 6 wks. since my Dx. Now I do vaguely remember after having the MRI I was told if I wanted to speak to the radiologist that was reading my MRI I could. I wish I had taken that opportunity than, it might have relieved my mind a lot more that I was doing the right thing. So I suggest anyone going threw this requesting to sit down with the Radiologist and picking their brains, after all they are the ones that see first hand how many cases returns. It might give you more info for a knowledgeable decision. “Knowledge is Power”! Ok now as for me… I don’t believe in chemo. And I have little or no faith in the medical industry. I’m sure its been stated on here many times, but I believe the numbers are stacked! I mean its funny how a cancer Dx what ever the origin is; that follows threw where ever it may or may not turn up next. But if you should die of heart failure due to chemo, you didn’t die of BC chemo related heart failure you died of Heart Failure. I won’t go on about that subject either I’m sure you all have heard it before. So my question to you veterans is: I was told I am Cancer Free, why on earth would I want to put any more Cancer Agents into my system (Chemo), why in heavens name would I want to destroy the very thing ~ that is fighting to keep me alive my Immune System??? Why would I want to put my Liver, Heart and gosh only knows what else in jeopardy to “maybe” ward off a recurrence somewhere else? When I found my tumor on my own, I had a gut feeling it was cancer, something’s you just know, why don’t we follow our guts; when its telling you are gonna be just fine. I feel fantastic, other than still recovering from the Double Mastectomy. We have been programmed from childhood that Doctors are the next best thing to God, and we believe them no matter what they say; we act like children and do whatever they say? I don’t know about the rest of you but I see no Expiration Date stamped on me! I trusted our Government never Questioned what they did, because I felt our well being was always foremost in their minds! Similarly to how I felt about doctors, but many years ago I woke up. In or about 1972 Pres. Nixon waged “War on Cancer” since that time; their has been 1.56 million research papers written, with No major progress. 200 “Billion” dollars on research and 30 yrs. later there has been No progress on the “War on Cancer” But we unraveled the Human Geno in 18 yrs. We put a man on the Moon in 9 yrs. We developed the Atomic Weapon in 17 mos. This was on the front cover of Fortune Magazine it dealt with the modern model medical Machine’s “War on Cancer”. They said and I quote the “Model medical Machine Stinks”! I’m trying to find the date of the article so if anyone is a good researcher they might find the article; I know I’d love to read it because the above was written by them! This video I got that info from is about 3 hours long so I’m gonna hang that up for now. But back to my rant…. Today we still have no CURE for cancer! Do they even know why we get Cancer? To listen to them the answer is NO. What I was told it’s like winning the lottery, and the other example my Doc gave me was its like you and I go to a Variety store and a armed gunman comes in and She (The Doc) looks at me and says “What the hell do we do now ~ and “she says I say” Duck! Can you imagine that’s what I’m told? That’s the best answer they’ve got. They treat the problems but never address the Cause of the problem! They hand out drugs for this and that and all that does is mask the problem and more likely than not causes other Health issues. So with all this said my Brain Fog must be kicking in again, because I’m just rambling and rambling. I guess to close I’ll just say as I’m sure a number of you have said before me, “As long as they are making money off us dying of Cancer there will be no Cures”. Can you imagine how many jobs would be lost if they found a Cure for Cancer. How many Doctors, Lawyers and Indian chiefs would be out of work, doesn’t that raise and Eyebrow and pee you off? That we are going threw all this because of the “ GREEN” That information I gave about Fortune Magazine was life 9 yrs ago so the 30 yrs quoted up there is almost 40 yrs. and Still NO CURE. People are smarting up and declining their treatments and looking elsewhere’s and all’s they can do is come up with another TYPE of Cancer TNBC to instill fear in us to run back to their apron strings for help! Ok I’m done! LOL The end Blanket of Hugs to one and all Bev ------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: Jackie
Date Posted: Mar 24 2009 at 6:49am
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Good morning, Bev.
Oh sweetie, I know where you are with your anger and your frustration.
My onc said that tn was agressive and that my particular tumor had a very "nasty biology" as the invasiveness factor was 9 of 9 (gd 3).
I was fortunate in that she did answer all my questions and my surgeon would not remove my breast until I saw her, a radiologist (who was wonderful) and a plastic surgeon. All gave me vital information.
In the end I put together all this plus what I had read and had a mastectomy. I was told by all these docs that if I was "particularly attached" to my breast then I could have a lumpetcomy and rads. I didn't want rads and my breasts weren't that great anyway! I chose a mastectomy on the breast with cancer and am watching the other carefully with mams every 6 months.
My onc told me that if any cancer cells had escaped the only treatment they have for us TN is chemo. She said it would take a milion cells in one location to see the tumor so we had to kill the little devils before they could multiply.
She and I chose to not use the one that can damage your heart. Instead we did taxetere and cytoxin. Some research says this is as effective. I made it through the chemo and am feeling very good. Most would never know that I have been sick.
So far, the only residual from the chemo is curly hair!!
Whatever you decide, part of the cure is to work on fighting this with all you have got, enjoying every day of your life, keeping your faith..whatever you define that as.., and loving your family and friends.
I will keep you in my thoughts.
Jackie
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Posted By: outnumbered
Date Posted: Mar 24 2009 at 6:56am
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There is a vaccine to prevent recurrance in studies as we speak...
http://www.sciencedaily.com/releases/2008/12/081212141847.htm - http://www.sciencedaily.com/releases/2008/12/081212141847.htm
And there are new advances every day.
Sure the almighty dollar rules the world, however I choose to believe scientists are working hard with our best interests at heart. I have faith that a real cure will be found. More and more data is being studied surrounding genetic and genome patterns which is a true indicator in my heart that they are close.
Keep the faith
They have my breasts locked up in the pathology dept. I think that is hysterical.
I am glad because I am going for another consult and had the slides sent to Boston and I know they have run additional tests that were not origionally done. My drivers license says I am an organ donor, so if I can donate my breasts to science, then so be it...LOL!!!Seriously, though, they will not do anything with the tissue unless you give permission. They are part of your medical records.
I decided to have the bilateral for the same reason as you initially. Then two days after I scheduled the surgery, I got back my positive BRCA1 results which confirmed my decision. My tolerance for risk of recurrance is very low, I have come to realize. Part of the decision making process regarding treatment including chemo is weighing out the risk of side effects against the benefit of the treatment. For me, I want to thow all I have at this. I fear that one renegade cell...
------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: trip2
Date Posted: Mar 24 2009 at 7:14am
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Whoa Bev you have done some homework and you make some excellent points. Yes we have debated many of these very issues and you make a whole lot of sense.
The problem is, TNBC is very aggressive. Surgery, Chemo and/or radiation are all that we have if we decide we want to fight back. Of course it is an individual choice whether one has these treatments or not. Whether or not our government is finding the cause is a good debate but meanwhile when diagnosed we have major decisions to make.
Like our gov and the way they handle the cancer war or not as Caryn has pointed out, with this disease we are possibly talking life and death, TNBC does not play around, it can move quickly.
You may very well move along with no treatments and live a long healthy life. No one will know that for sure.
Too many women have been in their treatments or just recently completed only to have this horrible disease come back. It is aggressive!
We do, many of us, run into a doc who is not informed or more than one or we may be lucky and find the perfect one right off the bat. That is part of this nightmare that we all deal with and unfortunately with this particular disease, since it has been recently named and they are only recently looking into triple neg with studies/research there are going to be medical staff who will stumble with this diagnosis.
That is one of the reasons we encourage new members to educate themselves and question what they are being told. Then you can feel like you are or not doing the right thing.
I enjoyed reading your post and look forward to hearing from you when you get back from seeing your Oncologist. Good luck to you. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CarynRose
Date Posted: Mar 24 2009 at 7:26am
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I have to chime in here regarding getting chemo and being told that you are cancer free. No one is cancer free, not even those who are healthy. Healthy folks have a mechanism to kill off those cancer cells. When a cancer survivor or told they are cancer free, it means that there is no evidence of cancer disease detectable through scans, blood tests, etc.
That said, Triple Negative cancer is very aggressive and very sneaky. I was told that I was 'cancer free' and even told I was cured, but four years later, a tumor was found in the adjacent axillary lymph nodes and it had spread to my lungs.
One thing that we know is that chemo works on Triple Negative cancer, better than on hormone positive. Unfortunately, at this point, chemo is our only choice because we don't get to try hormonals first.
I go to the Cancer Treatment Centers of America -- DEFINITELY not a mainstream hospital. If they could get away without using chemo, they wouldn't and they use chemo against Triple Negative and they agree that you must be aggressive when dealing with TNBC.
Best wishes,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: cg---
Date Posted: Mar 24 2009 at 7:50am
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Dear Outnumbered,
You are under no obligation to have chemotherapy or radiation. It is not mandatory with the disease.
When I was diagnosed I wanted to know exactly what it could have to let me live the life I love for a very long time. Not one of us arrived at the decision to have treatment lightly, but once we took off our rose-colored glasses and realized the seriousness of triple negative we started doing our mental calculations.
I chose chemotherapy and radiation...I welcome the opportunity to live to be a little old lady with possibly heart disease....rather than a young women with a healthy heart and a body riddled with triple negative...but that was my choice. Epirubicin is more heart friendly than Adriamycin and is as effective. There are choices and options...but the ultimately decision will always be yours.
I will always choose living with side effects over dying without because I made a conscious decision to forego treatment.
I finished my chemotherapy and the oncologist said to me "you know you still have breast cancer"....I told him that I knew and he said "a lot of women think because they had chemotherapy it is gone...sometimes it is completely, sometimes one cell survived and goes on to metastasize". So, after the breast was cut off, I poisoned as much as I could, and then I attempted to burn out any stragglers. I had an axillary dissection instead of sentinel node biopsy to eliminate any stray cells following the pathway from the tumor to the nodes with the dye.
And at the end, I did as much as medically was available to me and I am at peace with my decisions. As long as you can find peace with your treatment plan then it is the correct one for you.
Since you are BRCA positive I would be looking at removing the ovaries and uterus if you still have those.
I have realized more now than at any time in my life...I am not defined by body parts, the spirit and essence of me is in the words I speak and the love I give and the kindness I can extend.
Connie
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Posted By: outnumbered
Date Posted: Mar 24 2009 at 8:13am
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Hi Connie,
I am not sure if you misunderstood my post. I know that it is an individual decision to have chemo or not. I have been in a panic since early Feb because I have not had it. My ex-oncologist made the decision for me almost seven months ago, and I have since been educated (here)on tnbc and am going to a TN oncolgist on Thursday. I have been anxiously waiting for 6 weeks for this appointment. I am completely prepared to be told that I am to have chemo. To be honest, I will probalbly pass right out in shock if he tells me I should not have it. I have read his studies that state even small TN tumors less than 1cm need to be treated agressively. He is also on TNBCF advisory board, so I am confident he will steer me correctly.
As for the ovaries, I am currently monitoring, however I have discussed BSO surgery with my gyn-onc and was planning on scheduling it for this fall. I was hoping to get another genetic test for colon cancer (colaris) but my insurance will not cover it. If I were to test positive for that, I would also be at risk for endometrial cancer. So, I have decided to proactively tell my gyn-onc that I want a hysterectomy (keeping my cervix tho) instead of the BSO. My emotional tolerance for risk is not good.
XO ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: Yankeespie
Date Posted: Mar 24 2009 at 8:16am
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Very well said to both Caryn and Connie.. I agree with you both! I must add tho, that I asked my Doc if it was true we all have Cancer Cells in us, and that our bodies Immune System if functioning normally fight off those defective cells every day, and she didn't agree she didn't agree with me at all. I do not agree with her, and I believe she said that to cut me off at the pass because she knows how I feel about Chemo and Radiation.
If anyone can explain to me if TNBC is a new form of Cancer or is it just a newly found test to detect a type that has been around for ages? Meaning what about the thousands of women before us, are they saying none of them were TNBC?
Thanks for you comments Caryan and Connie
Blankets of hugs for One and All
Bev ------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: Luv2sing
Date Posted: Mar 24 2009 at 8:37am
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Bev - I came across this article from Fortune Magazine in 2004, not sure if it's the one you're looking for but here's the link: http://money.cnn.com/magazines/fortune/fortune_archive/2004/03/22/365076/index.htm - http://money.cnn.com/magazines/fortune/fortune_archive/2004/03/22/365076/index.htm ------------- Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: cg---
Date Posted: Mar 24 2009 at 8:39am
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Bev,
There have always been hormone positive and negative breast cancer...the problem women have had is the "I have breast cancer". Today, as I write this note - many women will be diagnosed and NOT TOLD whether they have hormone positive or negative breast cancer. I was not told...I spoke the words first. There are woman I know with breast cancer who NEVER ask. I know a woman who had a mastectomy 25 years ago and she does not know what kind of breast cancer she has.
Since we are only 10-15% of the big breast cancer diagnosis...the doctors just seem to paint us all with the same brush and I do believe this has to do with the patriarchal attitude when it comes to treating women "doctors know best"...any question is seen as a challenge...As we become more informed, we are able to make informed decisions because we want the information....to make decisions affecting our longevity. We can understand technical information....my first ex-oncologist was very dismissive when I asked questions "I have been an oncologist for 25 years and you have had breast cancer for 6 weeks!"
We must thank this foundation for getting our diagnosis front and center - giving us the exposure, funding the RESEARCH to target therapies for us and by the exchange of information - we will improve the standard of care for women with triple negative breast cancer because we have educated ourselves and we deserve to get the treatment we need tailored to our disease...rather than being lumped into the 85%.
Triple negative is a different beast and there is no wait and see approach. We have to hit it hard right from the diagnosis starting gate!
Connie
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Posted By: Yankeespie
Date Posted: Mar 24 2009 at 8:40am
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Sorry I'm still new with this forum stuff ... missed the other post from Pam and at least another woman I forget your name it might have been outnumbered so again Thank you all for your kind words.
Another question if I might add... this is directed to the Veteran's here ~ have any of you changed your internal environment of your body?
I mention this because; I happen to believe our environment, Manosanto and many others are doing to our food plays a huge part in Cancer. No matter choices we make in regards to our treatment; if we don't make changes in our internal environments no amount of Chemo or Radation will improve our lives
 I think along with the BRCA testing to help protect our kids, we should be getting more envolved in changing what they are doing with our Food, Air, and Water. Now if we want to save our kids, grandkids, and future generations we need get involved in those areas. So please what changes have you made with your internal enviroments?
Thank you in Advance
Blankets of Hugsss,
Bev ------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: outnumbered
Date Posted: Mar 24 2009 at 8:51am
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Connie,
WELL SAID! ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: Yankeespie
Date Posted: Mar 24 2009 at 8:52am
OMG thank you so much Luv2sing for that link!!!! I have been wanting to read that article for myself for years! YOU must be a Wizzard or  something! Thank you Thank You Thank YOU! 
Blankets of Huggs for One and All,
Bev ------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: Luv2sing
Date Posted: Mar 24 2009 at 10:24am
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You are more than welcome Bev!
Here's a tidbit ... my husband and I dated for three years and agreed to split up, lost touch with eachother for thirteen years until I found him on the internet ... he asked me to marry him that next week!!! ------------- Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: LRM216
Date Posted: Mar 24 2009 at 11:45am
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FYI: The term "Triple negative" was only coined 3 to 4 years ago. ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Yankeespie
Date Posted: Mar 24 2009 at 11:48am
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Soldd....Ok girl you just made yourself my Go to Person if I ever have to find Someone or Anything on the Internet!!!!
WoW what a wonderful Story! And I assume you're still married! Thank you for sharing that story it made me smile from ear to ear.
Blankets of Huggs for one and all!
Bev ------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: Luv2sing
Date Posted: Mar 24 2009 at 4:54pm
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We'll be celebrating our 7th anniversary in August!!
I'm calling it a night, I've taken my drugs, fluffed up my pillows and I'm done!
Kisses to all!!!!! ------------- Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: cg---
Date Posted: Mar 24 2009 at 5:04pm
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Bev,
You want to do something for yourself....go to http://www.broccosprouts.com - www.broccosprouts.com
the breast cancer researchers worked on a sprout for 25 years....it has SDG - the compound that is shown to be effective in beating back cancer cells. I eat them every day....I have the sprout seeds sent from the states.....go to http://www.brassica.com - www.brassica.com - they developed a green tea with the SDG in eat. I buy it from the Sttaes and it is delicious.
I take 2000 mg of turmeric each day - it is found to cause cancer cell death in breast cancer cells.
Fresh ground flaxseed taken each day also reduces breast cancer cells in our body.
A low fat diet (under 30 g a day) is something we should be doing. Exercising 5 times a week for 30 minutes...
Just a few thoughts...
Connie
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Posted By: LRM216
Date Posted: Mar 24 2009 at 5:23pm
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Thanks for the info COnnie, I'm going to order some as I recuperate this week from my Lumpectomy.
Hugs,
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Yankeespie
Date Posted: Mar 24 2009 at 11:41pm
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OH how nice Luv2sing! I love a Romantic Story! And your's takes the cake!
Hoping you had Angel's on your pillow, and wishing Sweet Dreams for you!
Blanket of Huggs to you,
Bev ------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: Yankeespie
Date Posted: Mar 24 2009 at 11:44pm
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Linda, Much luck with your Lumpectomy today! I'll be praying for you!And extra Warm Blanket of Huggs for you when you wake in the recovery room!
Bev ------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: Yankeespie
Date Posted: Mar 25 2009 at 1:13am
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Very kool Site Connie, thank you very much! Sprouts for dinner tonite! WooHoooo more good food to add to my menu!
As for flaxseed: I mix 2 T. of refrigerated Flaxseed Oil to 2 T. organic cottage cheese 3 times a day. They said that combination dissolves tumors.
Have you tried Essiac Tea? You get that at any Health Store just make sure it's from Hulda Clark, drink 4 oz. 3 times a day.
If anyone is interested I have her 2 online books by Hulda Clark on Cancer and remedies ~ let me know and I can send them to you.
I also drink as much as I can of:
16 oz. of juiced carrots (organic of course)
1 juiced Grannie Smith green apple (Less sugar than most apples)
1 juiced stalk of celery
Of course these are all combined.
Make it fresh drink it and than make some more. Should drink at least drink 32 oz. a day, 48 oz. is better
I test my pH levels at least 4 times a day if it's below 6.6 I take one capsule of Coral Calcium. If it's 5.4 I open the capsule on a spoon and put it on my tongue and wash it down with plenty of water. Wait 30 mins and recheck, if it hasn't come back to 6.6 repeat. Disease can't live in an Alkaline Body.
CoQ10 300mg a day.
I eat NO refined sugar, bread or dairy products other than that cottage cheese with the flaxseed oil, NO processed foods at all, and only chicken and fish with scales. I've been doing all this since I was Dx with BC. For me this is a lifetime commitment!
I take Vit C, cod liver oil, Maitake, Omega 3, calcium, turmeric but only sprinkled on my fish, will start taking the 2000 mg as you suggest, because I've heard wonderful things about it. I do a few others things also, but can't remember off the top of my head.
Thanks again for the Great Site!
Blankets of Huggs for you and all,
Bev
------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: Jackie
Date Posted: Mar 25 2009 at 6:21am
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Connie
Do you just buy cooking tumeric from the grocery or health food store? How do you measure it?
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Posted By: trip2
Date Posted: Mar 25 2009 at 6:31am
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Hi Linda,
Are you all ready? I wanted you to know we will be thinking about you and you have our prayers for a smooth surgery and speedy recovery.
We will look forward to hearing from you when you feel like getting online. Hope you have some help lined up.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |