New Member
Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: Archived Topics
Forum Description: Archived Topics
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=1927
Printed Date: Mar 26 2026 at 11:36pm
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com
Topic: New Member
Posted By: Sbb123
Subject: New Member
Date Posted: Oct 10 2008 at 3:51pm
|
Hello. I too am triple negative. I am 41 yrs old with two young children and an amazing husband. In addtion to triple negative I am also BRCA1
I was diagnosed on July 21, 2008. I had a lumpectomy on August 14. One of my sntinnel nodes tested postive although luckily the rest of the lymp nodes were clean.
I am lucky in that my brother is an oncologist over at Hopkins (although I do not live in MD). He specializes in hematology but he has been coordinating my care over at Sloan-Kettering. His knowledge has also been invaluable. For example, he explained to me that it was likely due to my age I would be triple negative (which I am).
I think my greatest concern is the combination of triple neg and BRCA 1.
I am positive I will get come through this current episode just fine. It is the future I worry about. I have chosen not to have preventative surgery (a double masectomy) on the recommendation of my surgeon although my oncologist clearly believes this would be the better course of action. My surgeon is incredible and I have decided that if/when there is anothe episode then I would opt for the surgery. A part of me is banking on the idea that when I have my next episode research will have provided me with different options.
I am not scared, I know this too will pass. I just need to know that this will not become my life. You hear about women who get it again and again. I worry with my stats I am that woman.
I have a very active career. I am a child psychologist-I run two treatment programs, teach graduate psychology, have a private practice and am working with a colleague on a book that has been picked up by an agent.
Chemo has been tough which actually surprised me because I am pretty tough and resilient. I have continued to work and push through even when not feeling well.
I want my life back!
 |
Replies:
Posted By: NancyJane
Date Posted: Oct 10 2008 at 4:51pm
|
Dear Sbb: Welcome to the site! I am so glad you found us. I think you will find a tremendous amount of comfort here. There are many women who will reach out and share their lives and stories with you. You are not alone. I was diagnosed at 41, just turned 42, and am also BRCA + as well as triple negative. It is alot to take in. I just started chemo on Oct. 3 and am adjusting to this new phase in my life. I too worry about BC becoming my life, but I just take it one day at a time and try to focus on what is in front of me right now. Not always easy, but it's a goal. What ever treatment options you choose, I know they will be what is right for you. Each of us selects our own path to health in this journey. You are so fortunate to have your brother to help you with medical "insight" and your own career that certainly gives you perspective on the psychological aspect of coping with stress/disease. The sisterhood at this site will also be a benefit as you go forward. I am an attorney and teacher and find staying busy helps me stay centered. That is not to say I don't have the occasional pity party (tonight one of my cats severly scratched me on my right arm, the arm with no lymph nodes due to my axillary node dissection on 8/12/08 when 38 lymph nodes were removed from under my right arm, thereby shutting down that arms ability to drain lymph fluid affectively. I completely freaked out that I would have elephantitis of the arm. It took a good 20-30 minutes for my husband to calm me down. My arm is just fine by the way
 , I just went temporarily insane!)In any event, welcome. Know that you will gain normalcy, perhaps not what you had before dx. Be kind to yourself right now. You deserve it.
Much love and positive energy to you, ------------- 41yr dx 7/25/08 Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08 T2 grd 3, N0, TN IDC BRCA1+ ACx4,Tx12 10/08-3/09 prophylactic hyst, ooph,mast & one-step recon 3/30/09 |
Posted By: Nancy
Date Posted: Oct 10 2008 at 6:05pm
|
Evening SBB,
Welcome to the site. If you look at the bottom of my post, you will see that my daughter Lori was dx TNBC. She is now 46.
May I ask why you have not gone with the reccomendation of your oncologist? I know that this is a very personal decision. However they are no closer to finding a cure or the cause of BC than they were 60 years ago, and very little research for TNBC. You say that considering your stats you worry that you are that woman who will get it again and again. Sounds to me as though you are questioning your decision.
Lori's onc stated that many many of the women who have only had a lumpectomy are right back to him with recurrence. Lori will go for the BRCA testing, and if she has the gene mutation, she will then have her other breast removed, and a hysterectomy and an oophorectomy. She doesn't ever want to go through chemo again. She teaches second grade, and did so all through chemo, just as you have.
Many of the gals here on the site who did not know of their BRCA status prior to surgery, have stated that they would have had a bilateral if they had known. Many have had recurrence and mets. I know that if Lori would had the opportunity to have the BRCA testing prior to surgery, and she was postive, she would have had a bilateral at that time.
Did they use the FISH test on your tumor? That is the gold standard test, although many insurance companies will not pay for it.
Many would consider themselves very lucky to have a brother who is an onc! I know I would!
We are so glad to have you with us and I hope that you will post often to let us know how you are doing. Will you be having rads after chemo?
Hugs,
Nancy
I forgot to tell you that my maternal grandmother died of ovarian cancer at the age of 35, in 1922, because my grandfather would not consent to a hysterectomy. My mother watched the doctor come daily and drain her mothers abdomen, until the day she died. My mother was only 9 years old. There still is no cure for ovarian cancer, or early detection.
Our grandson was dx with leukemia at age 3...he is now 20. There is no cure for leukemia and there have been no new treatments developed for leukemia for decades. ------------- 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: Sbb123
Date Posted: Oct 11 2008 at 3:39am
|
Good questions (regarding my decision not to have surgery). My surgeon is a research guy who's trials are well known. My decsion does not change my prognosis. Meaning that while I may have another incident somewhere down the road the stats refelct that my prognosis remains the same. It does mean that I may have to go through another surgery and rads (hopefully not chemo because I will be followed by one of the top high risk clinics in the country). I have decided that if/when another incidence occurs I would then do the double. No decision is yet firm and I plan to talk to my surgeon and a few others before the final decision. As I mentioned I am lucky to have access to some of the top professionals in the field because of my brother's stauts (he too is a researcher although his clinical trials focus on hematology). While the stats refelct that the double is effective-as mentioned they also reflect that regardless-if followed closely the prognosis does not change even if there is another incidence. This fact I have checked and double checked with those in the field and they do agree. It really comes down to what one is willing to go through in the future.
I appreciate the support. I realize most in my position might make other choices. Given my age and my otherwise good health though it is where I am at.
I will have rads (if I decide not to have the double of of course).
I appreciate the opptorunity to join this community of caring, supportive and informed women!! Thank you so much! I will continue to keep all in the loop and am looking forward to supporting and cheering on others. My goodness, so many strong women-it is quite brilliant!!!!!
|
Posted By: CarynRose
Date Posted: Oct 12 2008 at 3:28pm
|
Sbb123,
I'd be really interested to hear how your docs would explain me. You can see my stats below. My prognosis looked very good at first, and here I am Stage 4 at the ripe old age of 48.
While I can see that having your breasts removed might be too late for you to prevent metastasis because with triple negative and a positive lymph node, it may have already microscopically spread (even with my negative lymph nodes, it spread), I wonder why you are not discussing having your ovaries and tubes removed at your age. There are so many who have had 3N BC, BRCA1+ (especially BRCA1+) who end up with ovarian cancer that kills them.
One indication of your prognosis might be how your family members with cancer have made out. From whom did you inherit your mutation? Did your brother test?
I hope that you have checked out http://www.facingourrisk.org - www.facingourrisk.org , a website FORCE -- specific information on the BRCA mutation, its implications on not only BC and OVCa, but also other cancers.
BTW, yes chemo will kick your butt, no matter what good shape you are in. If you felt great, it wouldn't be getting the cancer.....It gets even better when you stop in the middle of a sentence because you can't remember the words you need to communicate or totally space out and forget why you put your keys in the refrigerator, LOL.... Chemobrain is sooo much fun, especially for professionals.
As you go through your journey, if you want support from those who have gone ahead of you, please take us up on our offers.
All the best,
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: cchennau
Date Posted: Oct 12 2008 at 3:52pm
|
Sbb123,
It sounds like you are well-connected medically and have faith in your team. Having a brother who is an oncologist must give you a certain comfort.
I am only chiming in because my oncologist and uncle (a medical director at Kaiser) both recommended I get genetically tested and both strongly urged me to have a second mastectomy and hysterectomy if the results are positive. (My paternal aunt died of ovarian cancer at age 67.) I am 44.
I will find out Thursday what my genetic status is. If I am positive, I will proceed with the surgeries. I want to take all precautions against recurrence.
Please keep us posted on whatever news comes your way.
Be well, Carla ------------- Married - Southfield, Mi dx - June, 2008 Left mastectomy - July, 2008 Chemo: Taxotere and Cytoxan T1, N0, M0 2 daughters (12 and 15) Middle School English Teacher |
Posted By: kirby
Date Posted: Oct 12 2008 at 9:30pm
|
Sbb123, and all.
I probably spent the first 5 years after treatment reading & planning what I would do IF my cancer came back. I considered that being a realist and wanting to be prepared, not having doubts over my treatment plan.
Nancy, I am not sure how you can state "we are no closer to finding a cure or a cause than we were 60 years ago and there is very little research for TN's. I was dx well before there was an inkling that there was a subset of TN. In the 8 years since my dx, they have not only named it but have figured out response to chemo's, now do neo tx, are aware of target population it generally fits [even though I fit into absolutely none of these]. I do wish we were much closer to finding a cure & cause. I had genetic counciling and testing 2 years after dx and met extensively with the geneticists before they would even do the blood work. How much has even changed since then ! So many of you are easily getting genetic testing done now. Even having the awareness of genetic components is so much closer than 60 years ago. If they can't figure out how it is mutating, how can they figure out to cure it. While I would like to see more done we have come a long way. Cancer is quite illusive. Even 30 years ago there wasn't the options there are now. All treatment was quite horrific and on top of that women were ashamed and breast cancer wasn't even talked about. Women were silent and went into hiding.
Cancer is scary enough without turning the focus negative. We should be here to encourage and support. We all react differently emotionally and to the treatment. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: Sbb123
Date Posted: Oct 13 2008 at 2:24am
|
Thank you all for your continuing cncerns and info!
Caryn actually I am definatley having the opharectomy. I am doing this because it decreases my chances of future breast cancer episodes and, as you mention, I will then not have to be concenred with the risk of Ovarian Cancer due to my BRCA 1 status.
I am just not ready for the bilatleral masectomy-but will see. I am only in week 3 of 16 wk (8 treatments of chemo).
I am aware of the possibility of "micro cancer." I was however stage 1 with no signs of it in any of my other lymp nodes except the sentinnel.
-I agree we are making strides ahead in the research. Not too long ago the sentinnel node byopsy protocol was non-existent. This ahs made the procedure so much better for thousands-including me!!!!!
Be strong and look toward the future-it is bright!
 |
Posted By: CarynRose
Date Posted: Oct 13 2008 at 4:49am
|
All, Actually, for me, the SNB didn't work (I guess I was one of the 2%??) because no cancer cells were found there, but we know now that they were there. A lymph node dissection probably would have been better as they would have removed the nodes with the cancer, preventing the spread that occured later.The only reason I was Stage 2a and not stage 1 is because my tumor was 2.5 centimeters instead of 2. Everything else about my pathology said I was a 'cure.' But this is a tricky sucker and it found a way.
I'm so happy that they have really started making strides in figuring out triple negative cancer, but there is a very long way to go before anyone can say that they have anything that they know will cure it or prevent it from coming back. It's very weird being at the edge of the skinny branches of science, sometimes, even knowing more than the doctors who are treating us. But, along with the mutation, my BRCA1+ gene gave me a big mouth, and so as long as I have the strength, I'll be sharing the word..... LOL
Sbb123, would you put in a good word to your relatives for LATE STAGE triple negative cancer? So many researchers I've met sort of glaze over, figuring that we're lost causes, and move on to early stagers. I'M NOT DONE YET!! And I need to be made chronic with targeted therapies so that my body doesn't break down under chemo, which appears, at this point, to be the only treatment.
One bit of advice -- even after you complete your treatment, your docs should be HYPER-vigilant with you. If you have a rise in any tumor markers (including CA125 - ovarian), or if you have any discomfort, they should give you a PET/CT scan. My docs did not when I first noticed an ache under my arm. Two years later, it was a 3.3 cm tumor in my axilla that also spread to my lungs. If we'd caught it in the lymph nodes, I'd still be Stage 3 and "cureable." Doing scans on early stagers is not 'standard of treatment', but be insistent!!
Hang in there! (Oh, and it's ok to be scared....)
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: sharon in Mich
Date Posted: Oct 14 2008 at 10:39am
|
Dear sbb123--I am so glad to hear you are having the opharectomy. I've been lurking on this thread and not saying anything, because you seemed to have such good advice and be level-headed and determined about your treatment. Who am I to butt in??? That said...With the BRAC mutations in women who've had the kids they want, it's the ovarian cancer that is sooo scary,at least as far as I'm concerned. With vigilance at least you have a shot of early detection for recurrence in the breast. But the ovarian cancer is such a stealth killer with no early detection. When I read the studies about the high correlation between TN and BRAC and the ovarian risk, I was in my onc's office the next day demanding the genetic test. This was March and I put all my summer plans on hold, because if I had the mutation, my ovaries were going to be history asap. Happily I was negative on the mutation.
Good luck, Sharon |
Posted By: Sbb123
Date Posted: Oct 15 2008 at 7:17am
|
Sharon-Thank you for your wise words! I am so glad to ehar you do not have the gene!!! It really does the entire picture. This episode I will get through fine although the chemo kind off stinks!!!!!! Ihave been drinving my docs crazy about the ophaphorectomy as I want it over with sooner rather than laster. I am doing it more for the prevetion of future breast indicents as BRC! appeasr to only reaer its ugly head in the form of breast cancer in my family-bu t who wants to takew that chance! I hope you are doing well and feeling! As I always say-"This too shall Pass"
|
Posted By: Sbb123
Date Posted: Oct 15 2008 at 7:24am
|
Caryn, Thanks for your info! Actually after this whole epsidoe is done-I will be sent to the High Risk Clinic due to my current episode and BRCA 1 status. My understadnign tis that the testing is often and intense. It helps being at a research hospital. I will be seen a minimun of 6months for an MRI and I am not quite sure what the rest of the protocol entails.
Bets, SBB!@# |
Posted By: CarynRose
Date Posted: Oct 15 2008 at 9:21am
|
My surveillance schedule was two mammograms a year, one annual breast mri, one annual transvaginal ultrasound (even after the oopherectomy, to watch for primary peritoneal), regular tumor marker tests, and whatever scans that would be appropriate based on any concerns we might have. I know of BRCA women now who have two MRI's a year.
All the best,
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: mainsailset
Date Posted: Oct 15 2008 at 10:25am
|
Well, here's my story. My sister found a lump 9/04. Mamogram & UltraSound, came up fine. She went home. 3/05 she felt it had grown. Biopsy came back positive. She was not triple neg. Treatments were lumpectomy, chemo, rads followed by a clinical study to inhibit the estrogen. 10 days ago she went in for one of her regular follow up mamograms. Small spot detected, on to UltraSound. Both techs thought it would be fine. Sister insisted on a biopsy. News came back yesterday from onc that it is positive. This is in the same breast and is obviously aggressive, and no I haven't seen the report to see if it's triple negative.
This friggin time she's had it with the lumpectomy stuff, she wants her life back and is even considering demanding a bilateral mascectomy.
For all of us, it's about getting our lives back, tolerating the treatments, all the stuff we do to get well, we're looking for the best results each time.
Say, you know the CA15 tests? I'm curious if it's reasonable to get these added to the routine before, during (as in the end of a chemo regime, after surgery & after rads) so you can get a history? I know there's always a marker or residual left but it just seems like it would enhance the knowledge. Thoughts?
|
Posted By: trip2
Date Posted: Oct 15 2008 at 12:43pm
|
Mainsailset,
My gosh I am sorry to read about your sister! What an awful time she is having all so fast. I feel bad for her, hearing it's back is horrible.
Keep us posted on how she is doing, will ya?
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: mainsailset
Date Posted: Oct 15 2008 at 2:11pm
| Thanks Pam, I just got off the phone w/nurse because I have 2nd lump which had been cleared by Mamogram & Ultrasound and subsequently no biopsy. Guess the lesson learned here is it ain't cleared until the biopsy lady sings! |
Posted By: sueez
Date Posted: Oct 15 2008 at 3:09pm
| thanks everyone of you for being my angels pam sooooooooooo happy your ok was really worried also dont know what or when my treatment might start every day something new today they said my pap was mildly irregular so have to go for i guess a coning what else was freaking last night but i dont think much more could be said carynrose i read your letter and i wish i could tell you what an inspiration you are to me hope all is well please know that i now feel you are all my family love unconditionly sight unseen |
Posted By: SnoozBar
Date Posted: Oct 15 2008 at 6:08pm
|
SBB123,
Hello there. WElcome and please let us know if any of us can be of any help or support. It can be difficult to decide what one must do when there seems to be conflicting studies, or advice from an array of medical professionals. They main thing is you must decide what you can live with. When I found my lump, they did the mammogram and an ultrasound, they then found another spot in the same breast and a small spot in my other breast. With 3 places, I figured my breasts weren't playing nice with me, so I elected to do the double mastectomy about 3 months ago. I knew that the dbl mast was what would make me feel comfortable after everything was said and done. It sounds like you have great support and know that you are not alone. Sometimes it is nice to talk to those that are going through it or have gone through it. Nobody knows unless they have walked in the shoes of someone with Cancer. Good luck and God Bless Mary |
Posted By: Sbb123
Date Posted: Oct 16 2008 at 2:13am
|
Mary-Thank you! There are tough decisions to make I and respect your understanding! So many people are confused by my decision not to go forward with thebilateral at this point. I should mention that I found no lump. I am literally owe my life to the radiologist who pick up a 1.mm "shadow" on a routine mamogramm! Regardless oft he size witht he BRCA 1 status it is what it is. If I have another episdoe I will have a bilateral. I am just hoping to get soem years between me before that happens (if it happens). I have a crazy busy life and am at the peak of my career right now plus two young children and an amazing husband. In the end, all decisions made will be based on ensuring that I am around to be with those I love.
Thanks again for your support!
|
Posted By: suzannek
Date Posted: Oct 16 2008 at 5:39am
|
Hi Caryn I just joined this forum having recently found out about my new life as a TNBC patient. (mammogram: 9-10-08, Stage 2a, 3cm, node negative) I had the tumor removed but had bad margins. I am currently waiting for my second surgery. They are waiting for me to recover from the first.
Did you have chemo with your first occurance. If so, what regime?
Of course I am frightened about this whole thing. Cancer is so unfair. I am glad the sentinel node thing was negative but as you found out, that isn't much of a reassurance and bits of the cancer are still in me. I am hoping that they have gotten better with the sentinel mapping than they did in years past.
I am glad that you have found the inner strength to keep the good fight.
sue
|
Posted By: suzannek
Date Posted: Oct 16 2008 at 5:42am
|
Hi Nancy
I am a very frightened newbie. I've been reading like mad to learn to fight TNBC. What is the FISH test?
Sue
|
Posted By: CarynRose
Date Posted: Oct 17 2008 at 8:19am
|
Hi Sue,
So sorry you have cause to be here, but I'm happy that you found us.
A FISH test is a newer, more accurate way to determine if you are Her2Nu+. Older tests sometimes showed that one was negative, when they were actually positive. When the FISH test finds Her2Nu+++, then Herceptin can be employed.
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: sueez
Date Posted: Oct 17 2008 at 8:26am
|
hi sue thats my name too you are at the right place and nancy is my angel very great women you will be ok feeling scared is what we all our but learning to live can overpower our fear
sueez
|
Posted By: DeeDee
Date Posted: Oct 17 2008 at 8:58am
|
Hi -- I have a question about the BRCA test. Did all of you who had the test done have a family history of breast cancer? I have no family history, was 64 years old at time of dx (which I am guessing is older than a lot of you), but have three daughters. My daughters,doctors and I toss this question around and I still don't know whether I should get the test. I would appreciate any input. ------------- dx Nov.7, 2007 Lumpectomy Nov 15, 2007 1.05cm. stage 1 grade 2 sentinel lymph nodes neg. chemo AC 4 treatments 30 rads ended April 2008 |
Posted By: trip2
Date Posted: Oct 17 2008 at 8:59am
Hi Sue and welcome to our forum.
Honey we are all frightened but with time and empowerment we learn to live and deal with this disease.
If you have any more questions please just jump in and ask, ok? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Oct 17 2008 at 9:04am
|
Hi DeeDee,
Yes we have alot of family history so got the test.
A website you might also find helpful is http://www.facingourrisk.org - http://www.facingourrisk.org
You also might consider speaking to a genetic counselor to help you decide what to do. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sueez
Date Posted: Oct 17 2008 at 9:07am
|
hi pam glad your back with great words of wisdom feeling very hopeful today in knowing that you and irish girl is doing great i start my treatment next week scared still but stronger from all of you
sueez
|
Posted By: suzannek
Date Posted: Oct 17 2008 at 9:38am
|
Hi Caryn, Pam, Sueez and all those who have welcomed me, Thanks
I do appreciate all the work putting the latest research about TNBC on one site. Lots of food for thought.
Yes I finally read about the FISH test. I am assuming that since I just had it done at one of the top breast cancer centers (U of Mich)that they would use the latest technology but it won't hurt to ask since so much is riding on it. Hopefully I can be confident of the hormone status too.All of the tests were done on my biopsy sample which was from 5 parts of the tumor. Hopefully they retest everything on the tumor at large as I heard tumors are rarely homogeneous. I am getting a list of questions ready for my next consult.
Did any of you ask how bloody your tumor was? From my reading, the higher the density of capillaries, the higher the level of VEGF and the worse the prognosis although new drugs are emerging that target VEGF and some of you seem to be on trials for them.
Most of you have been dealing with this for some time. Does your fear of the worst ever diminish? I keep thinking how unfair this is. No one has ever died so young in any of our families. Why me? I know that my long term prognosis (10 year survival) for me is about 63%, which may be based on old methods of treatments. Russian roulette has better odds.
And I am afraid of chemo. Did any of you go through a regime that wasn't as nasty as some are? Some of you have gone through several different cycles. I guess I won't start chemo until my 2nd surgery to clean up the margins but I want to begin ASAP before the whole thing gets out of control.
People have been supportive and my daughter and grandson have flown in from Boston (750 miles away) to be here but they have to leave. My friends have been great but I don't want to scare them away by being too morbid. My husband waits on me hand and foot. He is very dependent on me emotionally as is my youngest daughter. I can't leave them yet.
I am trying to change my diet to include more fruits and vegetables and alot less fat and meat. Allegedly dietary changes doesn't make much difference for 'regular' breast cancer patients but for some reason it does for us TN patients.
Thank you for your support
sue ------------- Sue Age 56 Stage 2A, no nodes 3 cm, TNBC,Grade 3 Lumps removed 10-07-08, 10-27-08 nodes clean: Began chemo 12-2-08 4xAC, 4xT dose dense 3 weeks radiation http://suzannekesten2.blogspot.com/ |
Posted By: CarynRose
Date Posted: Oct 17 2008 at 10:29am
|
Dee Dee,
I did not have a family history of breast cancer on the side of the family from which I inherited it (my father's). Turns out that because BRCA1 mutations don't cause breast cancer in men, and because so many of my father's relatives died in the Holocaust, I had no indication on that side of my family.
As 'luck' would have it, my mother's mother died of breast cancer and so that, along with my young age, and my triple negative status gave us enough pause so as to take the test and I came up BRCA1+.
Then, each of my parents tested and shockingly, my FATHER came up positive and my mother was negative.
Hope that helps,
Caryn
PS -- the BEST place to start is with a certified genetics counselor. He/she knows more about BRCA than most doctors I know and can help you manuever (sp?) through the ins and outs.
------------- 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: Sbb123
Date Posted: Oct 17 2008 at 1:28pm
|
Dee Dee, My hx was also on my father's side. My great grandmother and one of her daughters (there were 2 the other is now 94 yrs old) both died young of breast cancer (I am 41). There were no girls born to my father's generation no girls until myself and two cousins. My cousins have not been tested although now that they know I am positive that may change. I hope thsi helps. I have an 8 yr old daughter and my brother has 3 girls that will all someday get tested as early detection is the key!
Best,
SBB123
|
Posted By: Nancy
Date Posted: Oct 17 2008 at 1:36pm
|
Hi Suzannek,
I too welcome you to the site! I want you to know that there are many resources here, that may help make this journey some what easier. Also, the more information you have, the more valid questions you can ask.
I don't remember my daughter Lori saying anything that was in her path report as to her tumor being bloody. Someone else just posted about the VEGK, and I did post a link to that for that gal.
Lori too was terrified of the chemo, as I have heard many of the gals here saying. I know that I would be also. Lori just went for the BRCA testing this week, and she said that when they went to draw the blood, that she got cold all over. The person drawing said that she did not have to do this if she didn't want to, that she could change her mind. She said that she had to do this for her children.
All of your fears are well substantiated Sue, and the gals here will tell you that. Just allow us to help you in whatever way we can. We are here for you every day!
To retrieve all the info that is on the site, just click on the new forum"TNBC News, Resources and Tips", then click on " Directions on How to Access our many resources". They are on page 3 right now, and they have the emoticon
 to the left of it. Also there 'Directions for adding your signature to posts right there with that, and also have the to the left. You are doing all the things that you can do to ensure that you are leadng a healthy lifestyle.
Many hugs as you begin this journey Sue,
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: Queenvoodoo
Date Posted: Oct 17 2008 at 1:49pm
|
I had the test done - Mine came back negative Thank God. I was undecided as well, but then my daughter asked if I would go thru with it. It was a great relief to me that I would not pass the gene to her.
|
Posted By: kirby
Date Posted: Oct 17 2008 at 3:50pm
|
DeeDee,
I didn't have any family history w/bc, however my mother had just passed away at age 64 from ovarian cancer when I was dx at age 45. There wasn't any known history of ovarian either.
It must have been 2003, I attended a class through my health care about the genetics of cancer. Risk was determined by percentage, calculated by age factor and closeness of relative and types of cancer. I qualified for my ins. carrier to cover testing. My daughters were young teens at the time. Fortunately, I was negative, but I did grapple with that, really wanting a "reason" for my cancer.
Sue,
All people respond differently to chemo. I won't say it was a walk in the park but for me it really wasn't all that bad. I continued working thru tx and as a single parent, caring for my then 9 & 13 yo daughters.
Another new woman posted recently that has finished tx, with a positive, upbeat outlook. I am fairly computer inept, but those posts were within the past 2 days, I believe. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: Sbb123
Date Posted: Oct 18 2008 at 3:03am
|
As someone who is living wit the gene I think it is important to chime in! It IS NOT a death sentence!!! In fact I did the test because I have a daughter but one of the docs I consulted with questioned why I would want to know given that I already would be consisdered higher risk in the future.
Sure it is a pain. It mean constant montitoring if I opt not to have the bilateral (which at thsi point I am not). I am going to have the ophorectomy at some point in the near future. My daughter and nieces will need to be tested. The good news-they are doing lots of research. The key to BRCA + is early detection and the focus of much of the research is on prevention. Remember-being + for the gene does not mean one will definately get cancer it means they are at higher risk.
Sorry for this post but it is difficult to read all the doom & gloom when you are one of the people dealing with this!
That said- those of you not postive-THank Goodness!! One less thing to deal with on your plate!!!!! To all be well and be strong-this is ahrd-but life goes on!!!!
|
Posted By: CarynRose
Date Posted: Oct 18 2008 at 3:20am
|
Sbb,
Yes, all you say is true, but let's remember that the odds of a BRCA1+ woman getting breast cancer is 87% lifetime. I recently did any unscientific survey of about 1000 BRCA1+ folks. The question was, "Who in their families were women who were BRCA1+ who with no surveillance or surgeries grew old without ever having cancer?" Of about 1000 people 3 told of aunts or other relatives who grew old (or died) without ever having cancer. I was shocked at the fact that so few could come up with someone who never had cancer.
And, no matter how much surveillance you do, if you do get cancer, the odds of it being aggressive and/or metastasizing are higher than then average run of the mill cancer, no matter how early you catch it.
Yes, they are researching. PARP inhibitors appear promising, but everyone I know who has done the clinical trial has had success for a bit and then recurred.
At this point, the only way to extend life with aggressive mets is to try to make it chronic (they haven't done that yet). Once it's chronic, then we can pray for a cure. Until then, we with mets tend not to live long enough to wait for the research, which is coming way to slowly. (Not the researcher's fault; they are woefully underfunded.)
The saving grace about testing even after you've had cancer is that you can monitor more closely and hopefully catch it early (I caught it early and it still spread), but as important, your children can catch it BEFORE. I started out advocating for previvors to do surveillance and keep their breasts, but knowing what chemo can do to the body, I now support previvors in having the surgeries, the only way they can reduce their risk to BELOW that of the general population. 87% down to 2-3% ain't bad.
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: hshapira
Date Posted: Oct 18 2008 at 6:28am
|
Have you seen this study? For the first time I feel a bit optimistic
Reported October 13, 2008 Inherited Breast Cancer and Red Wine (Ivanhoe Newswire) -- A new study reveals a common thread between inherited breast cancer and red wine. Investigators from the National Institutes of Health looked for the method by which mutations in tumor suppressor genes such as BRCA-1 lead to breast cancer. They found the normal form of BRCA-1 helps maintain the expression of a protein called SIRT1. SIRT1 in turn inhibits the expression of Survivin, an apoptosis inhibitor suspected of maintaining tumors and helping them grow. However, when BRCA-1 is mutated, SIRT1 levels drop, allowing Survivin to increase. The researchers found resveratrol, a key component of red wine and grapes, strongly inhibits the growth of BRCA-1 mutant tumors in both cultured cells and animal models. The compound wards off the cancers by enhancing the activities of SIRT1, thus reducing the expression of the cancer booster, Survivin. “Resveratrol may serve as an excellent compound for targeted therapy for BRCA1 associated breast cancers,” study author Dr. Chu-Xia Deng was quoted as saying. SOURCE: Molecular Cell, published online October 9, 2008 Inherited Breast Cancer and Red Wine ------------- dx 4/05 6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
Posted By: CarynRose
Date Posted: Oct 18 2008 at 6:58am
|
Woo-Hoo!! Let's start poppin' the corks!! Red wine all around!!
If nothing else, we'll feel real good!!
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: Ronda
Date Posted: Oct 18 2008 at 9:11am
|
Hi Sbb123,
I just read up on this thread and thought I'd throw my 2 cents in the disscussion.
I too am a BRCA1 from my father's side. I have only met two family member's on my father's side of the family, him and his sister, my aunt who had breast cancer at 37.
Even though I knew I had an aunt with breast cancer, it never occured to me that I was at risk because cancer was not part of my paradigm.
Strangely, at 44, I felt I was going to get breast cancer and I knew where. I started seeing doctors 6 months before a palpable lump could be felt. I had clear ultra sounds and mamograms in the area six months prior, with the exceptin of a teeny tiny cyst that could be seen. By the time the lump showed it grew quickly to a 2 1/2 centimeter. I sensed it was genetic and though the counselor doubted me she tested and I was right.
My 35 year old sister is a health nut, she could easily be on the cover of any health magazine, not an once of body fat....the healthiest person I know. We are half sister's, we have the same father. I called her and told her about the gene, but she felt her lifestyle was such that cancer couldn't possibly find it's way to her. Then she found a lump. It was in the same location as mine and my aunt's. I was jumping up and down telling her to get biopsied. They did a mammogram and said it was a cyst. I was jumping up and down saying they can't tell with a mammogram, to have a biopsy or in the very least an MRI. They gave her an ultra sound and schelduled her 6 weeks out for a lumpectomy on her "cyst" just in case.
3 months from when she first felt her lump the doctors, who knew she could be a BRCA 1, finally got around to removing her 2 1/2 centimeter triple negative tumor. She will be finishing her last round of chemo on Monday.
The bottom line is this:
Yes you can choose not to proceed with prophylactic mastectomy,
BUT you have to rely on doctors to find the next one early. Statistically these things grow sooooo quickly BRCA's have a good chance of spread before they find the second one in time. There is a higher mortality in these second cancers in BRCA's.
AND you shouldn't under estimate what chemo and radiation does to the body. With mastectomies you can often avoid radiation. The first treatments are not so bad, but I feel we have one shot to get it right.
PLUS you will live in the shadow of this disease always.
I went to the young survival conference in February of this year where a women, whose family was used to discover the BRCA 1 gene, spoke. She came from a big family and saw death all around her. The audience was filled with gratitude. A young women stood up and with tears in her eyes, said "Thank you! Because of you my and my sister will live, where our mother and aunt's did not. We both had prophylactic surgeries before the cancer even showed up, and we will live because of you." Not a dry eye in the place.
After learning I had genetic breast cancer in 2007 I chose to have a prophylactic mastectomy and am currently recovering from my reconstructive surgery and prophylactic hysterectomy. The breast cancer drama took 1 1/2 years from my life, and god willing, that's all.
My sister had a prophylactic mastectomy and will be making her decision regarding an oopherectomy after her chemo treatment.
We are all soooooo blessed to have these choices to make, and when making yours, please do not under estimate the aggressiveness of triple negative tumors. There is some logic in not handling, smashing, testing, radiating breasts that are known to be unable to repair cell mutations (that can be caused by injury), this is why observation for BRCA's makes no sense to me.
We are statistics in a horse race to these doctors who advise us, but what we really are is mothers, sisters, aunt's, and grandma's. Make sure you look at this very carefully before you decide. With the uncertainty of insurances these days you don't know what options you will have the next time you ride this ride.
Ronda
P.S. The hysterectomy was a cake walk, and my new boobs are way better than the old ones!
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: hshapira
Date Posted: Oct 18 2008 at 9:22am
|
Nancy
Your mail box is full. Here is the information you wanted regarding BRCA1 and Wine. The article ' http://www.molecule.org/content/article/fulltext?uid=PIIS1097276508006564 - Interplay among BRCA1, SIRT1, and Survivin durnig BRCA1- Associated Tumorigenesis ' appeared at the Journal for Cell Biology. That page also has a link to the PDF file. Hanna ------------- dx 4/05 6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
Posted By: hshapira
Date Posted: Oct 18 2008 at 9:31am
|
I too, got the BRCA1 mutation from my father. Since there are are only two females I have known on his side that grew to adulthood history was not indicative for a test. His first cousin died of BC at age 34. His sister, now 74, is OK. However, my father has the virulent form of Prostate Cancer, his brother and two uncles died of Colon cancer. My tumors were aggressive, triple negative and I had my first biopsy at 16.5 I was convinced it was BRCA1 and non of the doctors believed I was. After ten months of reading I got convinced I had to had the test - it WAS positive for BRCA1.
Our gut feeling can be many times right on the mark. Hanna ------------- dx 4/05 6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
Posted By: cg---
Date Posted: Oct 18 2008 at 11:37am
|
Thank you for sharing your family story Ronda....I was truly moved and had no idea that even after BRCA was identified it still took jumping up and down to get appropriate investigations!
Since I do not know my BRCA status - in Canada it could take years to see a geneticist I must share my story of a co-worker.
In the mid 70s, I worked with a woman who had had prophylactic mastectomies way before it was even considered routinely as a treatment management. Her whole family was German on both sides and no other intermarriage of nationalities. Her grandmother, mother, all her aunts, her sisters, all developed breast cancer at a young age 30s and early 40s...my co-worker was in her 20s after her two daughters were born she had mastectomies, hysterectomy and bilateral salpingo-oophorectomy. Through the 20 years I worked with her...she had to have new implants only. She retired from the hospital. That woman is a grandmother today. I see her walking when I am out walking my dog.
Her daughters will be doing the same (except now they can get better looking breast implants).
I fought to get radiation after mastectomy for a possible 5% increased survival suggested on meta-analysis....BUT, to cut the risk by 87%-90% by having prophylactic surgery is what I would consider hitting the life lottery...and what could possibly have more value than a long life filled that might even have a few grandchildren in it!
I told the surgeon when he told me "they don't grow back!" ...that I was not defined by a mound of breast tissue..and there was a whole lot more to the person I am than what went into my WonderBra. I still feel the same 18 months later!
Connie
|
Posted By: NancyJane
Date Posted: Oct 18 2008 at 12:55pm
|
Ronda:
Thank you so much for your post. Your family story is so compelling. Also, it is great to hear how well you are doing post-surgery. By the way, your inbox is full
 ! Much love, ------------- 41yr dx 7/25/08 Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08 T2 grd 3, N0, TN IDC BRCA1+ ACx4,Tx12 10/08-3/09 prophylactic hyst, ooph,mast & one-step recon 3/30/09 |
Posted By: Ronda
Date Posted: Oct 18 2008 at 1:03pm
|
Hi Connie,
Your sooo right regarding "save the breast" mentality. I have to admit before this drama, I felt the same way. Knowing what I know now, I think we triple negatives ARE the gals who benefit the most from prophylactic surgeries. Even if you are testing BRCA negative there are many who believe Triple neg is genetic, we just haven't discovered the other genes yet. With this in mind we need to remember WE ARE GIVEN THE SAME STATS AS OTHER BC'S WHEN DECIDING TREATMENT IF WE ARE BRCA UNKNOWN OR BRCA NEGATIVE.
If anyone knows of Non BRCA triple neg stats, please post them. Until we insist on gene testing, the undiscovered BRCA's in our midst will continue to influence all triple neg stats.
It's good to see survivors in our midst, isn't it??.....very reassuring!
It's only been a year and a half since this all started and I'm feeling pretty darn good. Now if I can get through the other year and a half with no surprises, I'll be in good shape (I hope!).
Ronda ------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: DeeDee
Date Posted: Oct 18 2008 at 3:16pm
|
I just realized that I left out an important part of the uncertainty about trying to get the BRCA test regarding my three daughters. Their paternal grandmother had breast cancer at the age of 47 -- who knows what kind -- and she lived another 17 years cancer free until she died from a stroke. Her sister (who is now 98) had breast cancer sometime (?) but never talked about it and now doesn't remember when. Her two sons don't remember either. If she had only had a daughter, I'm sure we would know. Anyway, I worry about having the test, being BRAC- and my daughters thinking they don't have to worry as much.
Thanks to all for sharing their stories. ------------- dx Nov.7, 2007 Lumpectomy Nov 15, 2007 1.05cm. stage 1 grade 2 sentinel lymph nodes neg. chemo AC 4 treatments 30 rads ended April 2008 |
Posted By: Nancy
Date Posted: Oct 18 2008 at 4:12pm
|
Hanna,
Thank you so much for the links and I didn't realize my inbox was full! I will post the link now.
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: Oct 18 2008 at 4:22pm
|
Hanna,
Can you please tell me how to locate the article on BRCA and wine. I looked through the initial link, and can't find it.
Thanks,
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: hshapira
Date Posted: Oct 18 2008 at 4:48pm
|
http://www.molecule.org/content/article/fulltext?uid=PIIS1097276508006564
http://www.molecule.org/content/article/fulltext?uid=PIIS1097276508006564 - http://www.molecule.org/content/article/fulltext?uid=PIIS1097276508006564 ------------- dx 4/05 6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
Posted By: trip2
Date Posted: Oct 19 2008 at 8:43am
|
Sometimes I wonder why I did not test earlier, say after my first diagnosis in 12/02 but though I brought it up to a nurse there wasn't anything said, I wasn't online researching and let it all slide. Shame on me.
Last year my oldest daughter was diagnosed in January, me again in February and then I got the test thru the encouragement of my sister and daughter. I was positive as was both of my daughters for the same mutation.
I had mixed feelings at first about my 21 yr old carrying this knowledge with her while she is working and trying to get thru college, begin a career as so many are doing. But I realize it is best that she know for her own health and well being. Knowing she is brca1 positive tells her she needs to be vigilant and begin doctor observation soon. She is empowered now and hopefully it will save her life.
I wonder if I had tested earlier if I could have prevented my oldest daughter being diagnosed but I cannot change the past. This has really taken hold in the last few years and thank heavens we have the knowledge now and support, encouragement for family members, loved ones, a support group to find out what we can to possibly help change the future of one of us or a loved one. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Ronda
Date Posted: Oct 20 2008 at 10:31am
|
Hey NancyJane, Just cleared my box!!!
Hey Pam, No shame for my dear friend Pammy, the would of, should of, could ofs haunt every one of us in their own way. We are laying the ground work to help women survive this by voicing our regrets, but never shame. You are the coolest person on the planet to me and we need you here.
My 25 year old has mixed feelings about being tested, she is a bit superstitious and doesn't want to put the cancer trip into her mind set, if you know what I mean. I have a feeling she doesn't have the gene, she's alot like my mother, but I will be offering to test her for piece of mind.
By the way YOU MUST RESEARCH CO Q 10 ENZYME AND
L-CARNITINE FOR CHF!!!! I WILL SEND YOU SOME IF YOU WANT ME TO...PM ME !!!! Smack! Big kisses and a warm welcome back Dear Pam!!!! ------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: trip2
Date Posted: Oct 20 2008 at 11:20am
|
Ronda my dear, Thank you so much, I will look into these items you suggested.
You are right, we can't look back, wouldn't accomplish a thing.
Even though it seems we have ions to go before this gets straightened
out things are so much better than they were even 5 yrs ago. I feel like we are pioneers in the search for answers.
Things are definitely changing for the better. Ms. Ronda, I want you to know I had my D test done a few weeks ago and will learn next week where I sit.
You sweet Ronda is the pioneer riding thru town on her white horse announcing for all to get their D tested! You've certainly straightened us up and we thank you very much for that.
 Smack back at ya! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Sbb123
Date Posted: Oct 20 2008 at 2:36pm
|
Hey all! I want to thank everyone for all their stories and personal triumphs as well as research info. I made an important decision over the weekend. I have had a rough time with the chemo. Unfortunately I am really sensitive to medication (another inherited family trait besides the BRCA 1!!!). I still have 2 more A/C treatments and I am dreading them!
I decided I am going to opt for the bilateral. i just can not go through the possibility of chemo!
I never thought I would get here so fast. Quite frankly I think my husband is relieved.
I still have to get through the rest of chemo but at least I know what I am going to do.
-SBB123
|
Posted By: hshapira
Date Posted: Oct 20 2008 at 3:12pm
|
It took me time to make the decision. I have never looked back. It gave me peace of mind and the results are great.
Much luck to you. Hanna ------------- dx 4/05 6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
Posted By: Nancy
Date Posted: Oct 20 2008 at 4:49pm
|
SBB123,
Sweetheart....I can now breathe!!!!!!!!!!!!
I was so worried about you, and was so glad when the other gals kept posting to you. I am just the mother of a dearly loved 46 year old child dx with TNBC, but they were giving you advice from the heart.
We will all be here for you for the last 2 chemos and for the surgery. Now...if you really want good advice before and after the surgery....not just some doctor telling you what to expect, unless they have had bilateral mastectomies....and I am not saying that sarcastically, as there are some female surgeons who have had mastectomies.........just do not leave this site!!!
These gals are experts SBB, and they will tell you what to do, what to expect.
Lori has said that she will never go through chemo ever again in her life! She too is allergic to many many meds, and even though she worked through the chemo, we will never truly know what she was feeling. Her dear body, suffered, I know it did.
Much love and many 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: Ronda
Date Posted: Oct 20 2008 at 5:31pm
|
Hey Sbb123,
Try to find Sea Bands for nausea, they are wrist band that use accupressure for nausea, they are miraculous. Wear them during and 4-5 days after chemo, I needed no nausea meds because of these cool little things!. Also be sure to drink lots of water! You want to pee alot, especially at night!
Way to go on your decision!!! Now you get to decide on your reconstruct. options. All the gals here will help!
All the best!
Ronda ------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: CarynRose
Date Posted: Oct 20 2008 at 5:59pm
|
Sbb123,
I'm very relieved that you are opting for preventative surgery. It's hard to know how chemo will be until you are going through it, but once you are in it, options for making sure you never have to go through it again appear much more real.
When you are ready, you may want to check out a book by Kathy Steligo called The Breast Reconstruction Guidebook. You will learn a lot about all the different reconstruction types available to you. I know so many women who have had PBM's and are thrilled with their results.
I truly wish it weren't too late for me, but I'm happy that it's not for you.
Very 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: Sbb123
Date Posted: Oct 21 2008 at 2:53am
|
Thank you all for your continued support!
-Caryn thanks for the book suggestion-I will definetley read up!
All of you have been invaluable thus far!
Rhonda-thaks for info about the sea bands-I have been using both those and a special watch a friend purchased for me. They work okay-but it is the headache I can not seem to shake!
Knowing that i just have to getthrough two more treatments of "the red devil" (The A in A/C) helps.
I look forward to the day when all this is a mere memory!
-To all of you currently going through all of this stuff as well-this too shall pass!
SBB123
|
Posted By: Nancy
Date Posted: Oct 21 2008 at 7:14am
|
SBB123,
For at least 4-5 days after chemo, Lori slept in a recliner. That was a tip from someone here on the site, and is one I passed on to Lori on #2 chemo. That recliner stayed in the bedroom until after chemo #6.
That did help to alleviate the headaches. There is something about lying down flat on the bed after the chemo which "produced' the headache. However, to this day, Lori still cannot lie flat on the bed, as it gives her a headache. Lori also had Taxotere along with the AC, 6 times.
There is a list of books on the TNBC News, Resources and Tips forum, last page, and all are from the gals here on the site. The after surgery tips are there also.
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: Oct 21 2008 at 1:02pm
|
Congratulations SBB123, it feels better once we've made a decision and it's a hard one.
Consider yourself half way thru and you can do this. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Sbb123
Date Posted: Oct 21 2008 at 2:43pm
|
Once again thanks for all the great suggestions and support!
Incidentally I told my brother today about my decision (he is an oncologist specializing in hematology) he too was relieved.
You are all awesome! Thank you!!!
SBB123
|
Posted By: hshapira
Date Posted: Oct 31 2008 at 6:05pm
|
All
Although I did not fit the guidelines for genetic testing when I was first diagnosed (only one female survived to adulthood in dad's family) I was convinced I had the mutation. The clues multi focal triple negative 4 of 6 were grade 3. When the results came in everyone was shocked. I was in some way relieved because I felt that this knowledge BRCA1 would provide a better focus in my treatment. Everyone - my doctors, my cousins who are doctors was adamant I should not put the second mastectomy off. I waited three months and the pathology result was that had I waited just a bit longer I probably would have had to endure another chemotherapy cycle. I had reconstruction - doesn't look bad. A bonus is the fact that I no longer need to wear a bra. I know that the surgery did not eliminate the risk of another breast cancer but it certainly reduced it by 95% and that gives me some peace of mind. I am, too, a professional woman and have my own business. Chemo took quite a toll specifically because of fatigue and chemo brain. But I doing really well now and probably with a much better appreciation for life and joy with every moment. It really DOES GET BETTER. Hanna ------------- dx 4/05 6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
Posted By: victoriag
Date Posted: Oct 31 2008 at 10:56pm
|
I was advised as recently as 3 weeks ago not to consume alot of alcohol with the BRCA 1 gene, certainly no more than 1 glass/day. However, the articles I have read in the past 2 weeks seem to indicate that recent studies show that the resveratol in red wine "may serve as an excellent compound for targeted therapy for BRCA 1 associated breast cancers..." I am confused - are they making a distinction between red wine and alcohol? I AM VERY CONFUSED
See "Inherited Breast Cancer and Red Wine" Reported 10/13/2008published by Cell Press in the October 10th issue of the journal Molecular Cell and also identified in Research at the National Institute of Health ("Grapes, Red Wine to Fight Breast Cancer) (sorry I do not have the url's but you can Google the articles. |
Posted By: hshapira
Date Posted: Nov 01 2008 at 3:43am
|
Resveratrol is found in the skin of red grapes and is a constituent of red wine. ------------- dx 4/05 6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
Posted By: krisa
Date Posted: Nov 01 2008 at 2:10pm
|
Suzanne, I never thought to ask about how bloody my tumor was-I will have to go look and see what the report says...what exactly would the path report say indicating "bloody"?
Chemo is scary until you get into it and then you know the drill and what to expect and figure (as I did while in the infusion room) that if these much older people sitting in the strato- loungers next to me could do it, I could too.
The will to live is very strong.
|
Posted By: suzannek
Date Posted: Nov 02 2008 at 4:06am
|
Hi Krisa
I asked my surgeon about how bloody my tumor was. I had read that alot of VEGF (factor that promotes angiogenisis-blood supply to the tumor) is not good and that aside from outright measuring it, it could be estimated my the capilliary density of the tumor. My tumor wasn't especially bloody according to the surgeon so that's some comfort. Avastin, that some of you are on, targets VEGF.
Last week I had my 2nd surgery to clean up 'bad margins' and to deal with a huge swatch of micro-calcs. Lots of tissue was removed and now my breast is lop-sided and much smaller but the good news-no cancer was seen at all. Next step-first meeting with an oncologist tomorrow to discuss chemo to start when my wounds heal.
So compared to most people on this site, I am a 'newbie'. I do appreciate your combined comfort and knowledge. I do keep a blog as some of you on this site do. If any of you want to know what this TNBcer is going through-especially newbies newer than me and we seem to keep popping up- see http://suzannekesten2.blogspot.com/ - http://suzannekesten2.blogspot.com/ and if any of you are bloggers, which BTW is a good way to sort your feelings and inform your distant friends and you are willing to share, please put your urls here.
Sue ------------- Sue Age 56 Stage 2A, no nodes 3 cm, TNBC,Grade 3 Lumps removed 10-07-08, 10-27-08 nodes clean: Began chemo 12-2-08 4xAC, 4xT dose dense 3 weeks radiation http://suzannekesten2.blogspot.com/ |