Hello All! Newly Diagnosed Newbie Here!
Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: Archived Topics
Forum Description: Archived Topics
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=3590
Printed Date: Mar 26 2026 at 11:24pm
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com
Topic: Hello All! Newly Diagnosed Newbie Here!
Posted By: HoneyDawn
Subject: Hello All! Newly Diagnosed Newbie Here!
Date Posted: May 05 2009 at 2:46pm
|
I am a Triple Negative Grade Three BC girl. Had a clean mammo five months ago, found a lump six weeks ago, had a biopsy, and here I am.
Frankly, I had never heard of TNBC until my diagnosis. As I am sure many of you have already experienced, my whole world was cleaved in half upon diagnosis.
I'm one of those people who did everything right. Ate right, exercised, didn't smoke/drink, great weight, minimal prescribed drug usage,
etc. etc. And then...surprise!
Had the bilat MRI and will have presurgery tests this week.
My proposed course of action at this point is lumpectomy and port insertion at the end of the month, followed by a course of chemo and then radiation. My current oncologist (whom I really like) is very hopeful that I caught the sucker in time before lymph node infiltration. I will also be consulting at one of the best cancer centers in the US over the next week, for second opinions/ideas/etc.
I am very blessed to have a wonderful husband who has wonderful insurace. The support I have received from my immediate community and the medical folk in my orbit has been phenomanal and humbling. Who knew there was so much kindness from strangers? This disease is certainly an icebreaker
 Just want to say I am very grateful for this forum.
|
Replies:
Posted By: Nancy
Date Posted: May 05 2009 at 3:56pm
|
Hi HoneyDawn,
Gee, does this post sound familiar! Clean mammo and then you find a lump? These TNBC tumors are aggresive suckers aren't they?
 Not too many women have heard of TNBC, as the word apparently is still not out there in the community. However, considering that there were only about 150 members when I joined in July of 2007 for my daughter Lori, and now well over 1800, that is so hard to believe. My daughter Lori just turned 47, and may I ask your age? It sounds as though you are going to have a wonderful support system when you are going through treatments, and Honey, you will definitely need that. Do you have a family history of cancer, or breast cancer?
Honey, your lifestyle mirrors that of my daughter Lori's, and then as you say...surprise! She asks not why me but how me! Lori's stats are at the bottom of my post, but she was misdiagnosed as having a cyst, and then had to have another surgery for a mastectomy. Lori had surgery at Magee Women's Hospital in Pittsburgh, and chemo and rads here in Altoona where we live. You are so very wise to have a second opinion, and Lori had three, just to be certain. May I ask where you will be receiving treatments?
Well, since I have already sent you a private message, I will be waiting to hear from you so that I can email you the information that I have. Please keep us posted as to what you find out after you appointments. We are here for you every day.
 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: May 05 2009 at 5:50pm
|
Hi we are grateful to have you join us.
There doesn't seem to be any rhyme or reason to this disease. I'm so sorry you've been diagnosed but it is good to hear those around you are being supportive, that will make such a difference.
Keep us updated on how you are doing, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: HoneyDawn
Date Posted: May 06 2009 at 12:12pm
Hi Pam, Thanks for the warm welcome. Y'all can be sure I'll be reading and posting on this forum.  Though no one can ever prepare for this experience, I at least know now I have a community that will help me understand it.
Namaste and Peace
|
Posted By: HoneyDawn
Date Posted: May 06 2009 at 12:47pm
|
Dear Nancy, First, let me say that your daughter Lori is very blessed to have a strong, loving mother in her corner. What a wonderful relationship for both of you, to share in the healing experience together.
I am in my early 50s, happily with my husband for over 30 years. Cancer in my family: paternal grandpa/prostate, but died of a heart attack; brother, bladder cancer, but died of a heart attack; first cousin on mom's side, breast cancer (not TN) but is in remission; mother, meslothemioma but still alive and kicking at 81.
My oncologist traced my family tree and told me that it just doesn't add up...that my cancer just doesn't seem to be a family thing, at least in these past two generations. I just drew the lucky number, if you will.
I was sorry to read of your daughter's misdiagnosis. Scary stuff! but happy to learn she is on the right track now.
I am in the south and will be going to H. Lee Moffitt for my second opinion, which is #16 on the US World and News Report of Best Hospitals for Cancer. If I need a third opinion, my next choice is Anderson in Houston, which is rated #1.
AT this point in time, I am uncertain as to where I will be receiving the treatments, as I just received my diagnosis on 4/30/09. At that time, my breast surgeon had only two path reports in, and was sure I had the kind of cancer that could use Herceptin (forgive me, I am still learning ). When I saw my oncologist yesterday, she was able to give me the full path reports; hence my complete diagnosis of TNBC, grade three.
I live in a small town and all my drs are at least an hour away, so I am still considering how I will approach treatment. We are hoping for a stage one diagnosis with no lymph node infiltration (isn't everyone
 ?) after surgery, but we all know it could be something completely different, so I am researching and learning and considering and learning some more.My journey went like this: Feeling very tired since the autumn of 08. Had clean mammo 10/21/08. Feeling like there was something wrong--no, KNEW there was something wrong, but I, ummm, couldn't put my finger on it (figuratively speaking), if you know what I mean. My spirit felt different, my life force felt different. During my monthly breast exam in the shower, I found the lump. It was March 12, 2009, less than FIVE months after my clean mammo.
I KNEW THEN. I knew. I knew. But not this kind.
Score one for women's intuition.
Send me any and all info. I am deeply appreciative of your kind response.
Namaste and Peace
|
Posted By: kathy 1223
Date Posted: May 06 2009 at 3:48pm
| hello all, i would like to introudce my self, i'm new to the board, and nancy is trying to help me, she is a sweetheart, i had a lumpectomy in feb, i'm going for chemo now, had 2 treatments and 2 more to go, kathy |
Posted By: HoneyDawn
Date Posted: May 06 2009 at 3:50pm
|
Hi Kathy, I am a major newbie myself, but I would like to say Welcome to this very special club.
How is your chemo going? What kind of "cocktail" are you having?
HoneyDawn
|
Posted By: SagePatientAdvocates
Date Posted: May 06 2009 at 4:03pm
|
Dear HoneyDawn,
Welcome...I am new as well... Have your doctors spoken to you about genetic counseling/testing? There was a study recently that recommended that women with early-onset triple-negative breast cancer be tested for the BRCA1+ gene mutation. My daughter was told to have a lumpectomy also and not advised about genetic counseling/testing...turns out she is BRCA1+ as I am I (she inherited it from me)... please ask your medical advisors about it..the best person to speak to on all this is a Certified Genetic Counselor... there are many women on this site who are BRCA1+ and it may have important implications for your treatment strategy.. 85% of BRCA1+ young women have TNBC. good luck to you, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: kathy 1223
Date Posted: May 06 2009 at 4:11pm
| thanks dawn for the welcome. the first chemo wasn't that bad , but the second one had me down for a week, the cocktail i'm getting is tax, forgive me i don't remember how to spell it, |
Posted By: Nancy
Date Posted: May 06 2009 at 4:26pm
|
Kathy,
What you are getting is either Taxotere or Taxol. Is that correct? You are only receiving 4 treatments? Tell us more about your diagnosis. What was the size of you tumor, what is in your pathology report? Tell us your age...if you don't mind sharing that, and do you have a good support system at home?
Lori had ACT...Adriamyicin, Cytoxan and Taxotere. She had all 3 every 3 weeks for 6 treatments and then 28 radiations. I forgot to send you a list of the abbreviations, so wil email that to you also. It helps when the women talk about treatments and chemos, and are abbreviating many things.
The chemo tips should help you tremendously, and don't forget to print them out.
So...welcome and you are now in good hands with these amazing women and men!!
 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: kathy 1223
Date Posted: May 06 2009 at 4:50pm
| nancy i'm getting taxotere. every 3 weeks 2 more treatments to go. i'm 61 years old, my tumor was 2.5 i lost my husband in oct of 2008 thought i wasn't going to get thru this with out him, but i have a big family that have been with me every steep of the way, my mom is 85 years old and still taking care of me, i'm glad i found this board everyone to to be so supportive, |
Posted By: Nancy
Date Posted: May 06 2009 at 5:07pm
|
Oh Kathy,
I am so sorry for your loss, and I cannot even begin to imagine how you have coped with losing your husband and then all that comes with a diagnosis of breast cancer. Your mom must be very very special and a very strong woman. I am so glad that you have a great family and that they have been there for you.
Is the Taxotere all that you are getting for chemo? Most women have other chemo drugs with that, considering the size of your tumor. May I ask where you go for treatments? Lori went to Magee Women's Hospital in Pittsburgh for her surgeries, and then here in Altoona for chemo and rads, only because the medical oncologist and the radiology oncologist agreed with those in Pittsburgh.
If you have any questions, please just post and everyone will reply. I am really glad that you found us, and give your mom a big hug for me, and tell her I know all that she is feeling for you.
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: kathy 1223
Date Posted: May 06 2009 at 5:18pm
nancy yes my mom to me is thebest, i had my surgey in robert woods in nj, i'm getting my chemo in toms river, im getting two drugs for the chemo but my mind is blank, after the chemo i will go for radation for 5 weeks, i have a brother that lives in town and he takes me for my treatments, so i am thankful to have a great family to get me thru this,  kathy
|
Posted By: HoneyDawn
Date Posted: May 06 2009 at 5:50pm
| Hi Steve, When I am at Moffitt, I will talk with the drs there about it, also when I see my locals again. It is great to find a man here who is caring and compassionate. Many thanks! |
Posted By: HoneyDawn
Date Posted: May 06 2009 at 5:57pm
|
Kathy, SOOOOOOO sorry for the loss of your husband. Please accept my deepest sympathies. Really glad to know, sweetie, that you have a supportive family and your 85 yr old mamma is still taking care of you. She sounds fabulous! Once a mom, always a mom! Also blessings on your brother, too.
You sound like such a brave woman, I am glad we signed up together, so I can learn from you. I've heard about "chemo brain" (seems to be a common ailment) from other breast cancer survivors.
My onc suggested that if I do have stage one, grade three TNBC, that she may want to use TC. All I can do now is research and learn, won't know anything until my surgery. But your experiences are helping me understand.
|
Posted By: SagePatientAdvocates
Date Posted: May 06 2009 at 7:59pm
|
Dear Kathy,
I am sooooooo very sorry about your loss...I am afraid I have no brilliant words just my very sincere condolences... Dear HoneyDawn, Please try to speak to your docs at Moffit and get an appt. if you can with Rebecca Sutphen...she is a knowledgeable Certified Genetic Counselor at Moffitt.. there will also be a conference in Orlando May 15,16 that you might find interesting...if you see Rebeccca soon you can ask her about it. If you and your husband would like to come I think you would learn a lot about BRCA (which hopefully you don't have) but also the women who will be there have been through everything under the sun and I think may be helpful to you, no matter what.. if you would like to send me a PM I will respond and give you my phone number and I will be at the conference and would be happy to meet you (and your husband) and introduce you to some wonderful folks..Rebecca will be at the conference, as well.. all the best, Steve p.s. thank you for your kind words.. ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: kathy 1223
Date Posted: May 07 2009 at 3:26am
| thanks dawn, yes i get chemo brain a lot, i had lobular carcinoma cancer, i had a lumpectomy in feb, i have 2 more chemo to go, than radation for 5 weeks, there was cancer on my mom side of the family, also my dads sister had bc, nice meeting you, kathy1223 |
Posted By: kathy 1223
Date Posted: May 07 2009 at 3:28am
| thanks steve. nice of you to respond, really glad i found this board, kathy1223 |
Posted By: HoneyDawn
Date Posted: May 07 2009 at 3:57am
| Steve, I can't figure out how to private message you, lol. Can you private message me and then I can respond? Many thanks, HoneyDawn |
Posted By: SagePatientAdvocates
Date Posted: May 07 2009 at 5:36am
|
Hi HoneyDawn,
I just sent you a private message...you should be able to reply and then press send..or just call me.. I sent you my phone number and also my emails address all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: minniemouse
Date Posted: May 07 2009 at 5:54am
|
Hi Steve,
Is the conference in Orlando just on BRCA? (I am negative brca 1/2) or will there be info on tnbc also?
I'm getting combo of cytoxan and taxotere. Just started 30 mg of glutamine a day for side effects of taxotere, fyi. It's supposed to help the severe back aches, etc. Anyone have success with it?
minnie ------------- dx 02/09 @62;lumpectomy 3/24/09; 1.5cm; node neg; stg I/gr I; BRCA 1/2 neg 2 rnds Taxotere/Cytoxan; 2 rnds A/C (after lung react to tax); 33 rads. |
Posted By: SagePatientAdvocates
Date Posted: May 07 2009 at 6:59am
|
Hi minniemouse,
Good luck with your treatments..I hope you feel better soon. I will send you a PM with the info on the conference.... The main focus of the conference is for women who are BRCA+ and/or at high-risk for breast/ovarian cancer. One of the authors, Dr. Steve Narod, of the study I posted about previously will be presenting at the conference. I will put the link and abstract here again and maybe Pam/Nancy can make it "hot". I know that Dr. Narod is an expert on BRCA. I do not know if he is an expert on TNBC. Everything at this conference above is geared to laypeople and many of the women there are BRCA1+ and have had or have TNBC. I think 85% of BRCA1+ women who have breast cancer have TNBC. The Narod study of TNBC women who didn't qualify for BRCA testing but nevertheless 11% of them tested positive. I think it is absolutely imperative that TNBC women are informed of the link between BRCA(especially BRCA1) and TNBC..from reading a lot of posts here, certainly many women have tested...I assume (always dangerous to do) most of them have a profound family history pf breast/ovarian cancer but many do not mention it and perhaps have not been informed. Also, many physicians, still, unfortunately, have not heard of BRCA and if they have they do not know that it can be passed from a father, with no cancer, to his child...who then gets TNBC cancer as was the case with my 36 year old daughter. I will be going to another conference that will definitely cover TNBC that will be in Orlando May 29-June 2. I will be going as part of an Advocacy training program because I want to become more knowledgeable about cancer. It is the American Society of Clinical Oncologists annual meeting and it will be very technical from what I have been told...I have to do a lot of reading and attend webinars before and it sounds like it will be particularly intense. My main mission in going is to find out more about TNBC and also prostate cancer. In fact I will post what I find out from some of the sessions here if it's o.k. with Pam/Nancy. Narod group study- http://www.ncbi.nlm.nih.gov/pubmed/19298662?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum BMC Cancer. 2009 Mar 19;9:86. Links The prevalence of BRCA1 mutations among young women with triple-negative breast cancer. Young SR, Pilarski RT, Donenberg T, Shapiro C, Hammond LS, Miller J, Brooks KA, Cohen S, Tenenholz B, Desai D, Zandvakili I, Royer R, Li S, Narod SA. Women's College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada. sryoung37@aol.com BACKGROUND: Molecular screening for BRCA1 and BRCA2 mutations is now an established component of risk evaluation and management of familial breast cancer. Features of hereditary breast cancer include an early age-of-onset and over-representation of the 'triple-negative' phenotype (negative for estrogen-receptor, progesterone-receptor and HER2). The decision to offer genetic testing to a breast cancer patient is usually based on her family history, but in the absence of a family history of cancer, some women may qualify for testing based on the age-of-onset and/or the pathologic features of the breast cancer. METHODS: We studied 54 women who were diagnosed with high-grade, triple-negative invasive breast cancer at or before age 40. These women were selected for study because they had little or no family history of breast or ovarian cancer and they did not qualify for genetic testing using conventional family history criteria. BRCA1 screening was performed using a combination of fluorescent multiplexed-PCR analysis, BRCA1 exon-13 6 kb duplication screening, the protein truncation test (PTT) and fluorescent multiplexed denaturing gradient gel electrophoresis (DGGE). All coding exons of BRCA1 were screened. The two large exons of BRCA2 were also screened using PTT. All mutations were confirmed with direct sequencing. RESULTS: Five deleterious BRCA1 mutations and one deleterious BRCA2 mutation were identified in the 54 patients with early-onset, triple-negative breast cancer (11%). CONCLUSION: Women with early-onset triple-negative breast cancer are candidates for genetic testing for BRCA1, even in the absence of a family history of breast or ovarian cancer. ........................... the ASCO meeting http://www.asco.org/ASCOv2/Meetings/ASCO+Annual+Meeting ................. all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: susied
Date Posted: May 07 2009 at 8:19am
|
Since I found out my "news" it seems like there are so many more newbies....makes me sad but glad we all have somewhere to come and vent and compare notes. I will have my MRI on MOnday and from there at this point, depending on staging there will be chemo then some kind of surgery (surgeon) he isn't making a decision until after MRI results are in.......
I was also sure something was wrong but having smoked for years before I quit 8 years ago, I thought and really expected lung CA...how shocked was I to discover the lump (in the shower) and then to get a TN diagnosis!!!!
Being 1 on America's 60+ uninsured I am dependent on the State of NJ and charity care to see me thru....lucky for me one of our metropolitan areas best Breast surgeon is my surgeon & I have full faith in he and the onc group also affiliated with the hospital where I will be treated.....otherwise I would be in limbo with no where to turn....they have been wonderful to me.
Lots of luck....more later,
Carole
|
Posted By: trip2
Date Posted: May 07 2009 at 4:23pm
|
Steve this is so exciting to see you will be going to these conferences. Oh my my the information will be everywhere, you lucky man! We would love to hear anything that you would like to pass along. We love news. I would like to know how you feel about women or men posting their BRCA status in forums online. I hear that it is not a good idea? I have previously posted this info in the Resource Section, very important for all tri negs to read because they may all need to be tested if they fit the criteria. Someone could be the first to learn they have the mutation in the family if I understand my reading correctly.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: SagePatientAdvocates
Date Posted: May 07 2009 at 5:51pm
|
Hi Pam,
I will be happy to post whatever I can that seems pertinent... Unfortunately, I believe it is still unwise to post your BRCA status online if the information can be traced back to you because although GINA now protects you regarding health care discrimination, life insurance companies can still discriminate against folks who are BRCA+. I have so many health issues (especially diabetes, AFIB) that I can't get life insurance anyway, anymore....so I post my status and I speak at events under my name. It is more important to me to get the word out than be anonymous. I totally understand, though, that many don't want to be open about their status..and also many folks want their cancer experiences to be private...I was at a conference last year and a woman came up to me from Australia. "I have been reading everything you wrote for the last three years and I have not posted and will never but I wanted to say thank you." I saw that she had just written "Guest" on her name-tag...so everyone handles things differently and I feel that it is so incredibly sad that many in our community have to "hide" but things are better I feel with GINA. Also, there is a good book out "Pretty is What Changes" by a lovely woman, Jessica Quellar, writing under her own name to get the word out..also a documentary "In the Family" again by a wonderful woman, Joanna Rudnick, again telling the story under her own name. Both of them feel that "knowledge is power", as do I. I personally feel it is very important to let your heath care provider (especially if you understand their coverage..which admittedly can be a maze) know that you are BRCA+ as it can make a huge difference in your surveillance protocol. But once you do, you may jeopardize your life insurance coverage..But, I believe, once you have cancer you will have difficulty getting decent life insurance anyway. My daughter was told to not even apply. Back to surveillance- it has been shown that MRIs sometimes catch tumors at an earlier Stage particularly in younger women with dense breasts...Since so many younger BRCA1+ women are at risk for early-onset triple-negative breast cancer an insurance company may pay for a breast MRI which hopefully will find a cancer at an earlier, more curable Stage thereby saving the insurance company money if the cancer is found at a more advanced Stage. I do not believe the tests are paid for by insurance companies based on a altruistic feeling about women...it is all about the money, in my opinion. An insurance company who might refuse to pay for an MRI under "normal" circumstance may pay for it if they know there is a BRCA+ woman involved. and yes MRIs can be problematic with so many false positives...nevertheless it seems the large cancer centers in this country are moving towards MRIs as the first surveillance tool with high-risk women...particularly younger women.. Pam, again I must thank you for everything you are doing for the TNBC community...I hope you are feeling a bit better.. all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: melissa in JPN
Date Posted: May 07 2009 at 8:58pm
|
Thank you so much for this website.
I had surgery 3 years ago in Japan (stage 2a, lymph x1) and got chemo (AC x 4). 3 years later, my cancer moved to my right lung (x 1) and lymph node (x 2), march 09. so I will have Taxotere from next Monday. I am really afraid about...."Is Taxotere effective for my situation (return of cancer for TNBC?)?" I would like to know the latest way what kind of chemo in the US for my situation. As far as I know , I can not get the latest way here in Japan because of "drug lag". thanks for reading big hug Melissa |
Posted By: Sunris
Date Posted: May 08 2009 at 9:18am
|
Love the idea of you getting another opinion. I currently have your same diagnosis ( no suspected node involvement) and am going to a very popular cancer center in Houston :) (notice how I didn't use the name?)..haha.... My treatment plan is 3 months chemo ( paclitaxel) then 3 more months FAC ....THEN surgery...
chemo first allows for the shrinkage of the tumor/tumors and for immediately beginning to kill cells. I have had 6 treatments of Taxol ( paclitaxel) so far ( out of 12 treatments) and the size has already shrunk ALOT....which will leave me most likely at an advantage for a lumpectomy vs mastectomy....Hey, not sure about you, but I'm all about keeping my own "natural" boobies :) Certainly not saying the opinion you have received is a bad one, but I just didnt care for the idea of you having an instant mastectomy then chemo, unless of course there is more info I am unaware of that would call for this action...None the less....We will come through this girl!! Peace & love , Dawn |
Posted By: trip2
Date Posted: May 08 2009 at 6:32pm
|
Hello Melissa in JPN, it is so nice to have you join our forum although I very sorry to see you've been diagnosed.
OH and now your lung and lymph mode, well you can do it, get rid of this nasty stuff. I do know Taxotere is a tough cookie.
Melissa post in the recurrence, Metastasis forum section. There will be more women there who have had c come back and be more knowledgeable about what is going on.
Keep us posted and I will look forward to your post in the mets section.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: May 08 2009 at 6:52pm
|
Steve you do know that what you said regarding mri's and how the insurance companies could save themselves some money in the long run is opening a can of worms don't you?
Boy there are alot of things they could do, absolutely baffles me. Where they could save money in the long run and of course help a person out (think they forgot that part) needing a scan of some type, no no they refuse. What nonsense and we can't hardly make it w/o them.
I too have enjoyed your input into this forum Steve and appreciate your time and information. You are always a fascinating read.
The legs are still a bit cranky but we are working on it, have a check-up Monday. Thank you for asking! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: SagePatientAdvocates
Date Posted: May 08 2009 at 8:20pm
|
good luck on Monday, Pam...
enjoy your w/e thanks for the kind words..much appreciated.. all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: SagePatientAdvocates
Date Posted: May 08 2009 at 8:26pm
|
Dear Dawn,
I have posted, several times, a recent study indicating that early-onset triple-negative women should consider testing for the BRCA mutation. Have your doctors (I assume at MD A.......) talked to you about this link and suggested you meet with a Certified Genetic Counselor? I believe they have a high risk hospital at that excellent institute.. please ask them about it if it hasn't been discussed...the time you are doing neoadjuvant chemo might enable you to test.. good luck to you.. all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: melissa in JPN
Date Posted: May 09 2009 at 4:19am
|
Hi! Dawn.
Thank you for your kind message. I'm asking third opinion to the Hospital in Houston.(maybe same of your's ) 
I will let you know my situation after my first chemo. thank you. hugs to you Melissa |
Posted By: melissa in JPN
Date Posted: May 09 2009 at 4:32am
|
Hi! Pam
Thank you so much. Actually I try to go "Metastsis forum section" many times but failed. 
So I'm happy if you could tell me how to go there in detail... I'm very happy to be here with you. big hug Melissa |
Posted By: SagePatientAdvocates
Date Posted: May 09 2009 at 6:42am
|
Dear Melissa,
I am new here but I will try to help you on the top of the posts in the middle there is something called TNBCF forums...click on that and you will see a page with the different forums scrolling down you will see "TNBC Metastasis/Recurrence Users" Forum Topics Posts Last Post TNBC Forums Welcome New Members A place to introduce yourself to our community 556 7468 Today at 6:32am By melissa in JPN TNBC Talk (11 Viewing) TNBC Talk 1923 16584 Today at 7:54am By mainsailset TNBC Polls & Surveys A place to ask questions and survey the community 102 1176 Yesterday at 4:32pm By susied Remembering Nancy Block Zenna (1 Viewing) A place for the community to honor the foundation's founder. 1 9 15 Apr 2009 at 8:47pm By partner to one TNBC Metastasis/Recurrence Users (3 Viewing) As you requested, here is a new Mets forum 240 2815 Yesterday at 9:19pm By gerriesue TNBC NEWS, RESOURCES & TIPS Please look here for the latest articles, tips and resources. ............................ I am not a medical professional/doctor but I feel that M.D. Anderson Hospital (which consistently is ranked as the number one cancer hospital in the U.S.) in Houston is a VERY important facility for second/third opinions. They are set-up in a very professional way to do this. I was there a year ago with a dear friend (age 42) who had colon cancer and their opinion was different than his doctor in Las Vegas. He followed their advice and is doing well..One of the most difficult things for a patient is when you have conflicting advice and have to choose especially if your original doctor does not agree and makes you feel bad for even thinking about it. I don't know the customs in Japan but in Hong Kong (my daughter-in-law's parents are Hong Kong Chinese) if you go to another doctor for a second opinion you may actually lose the first..it's an awful system. Stay strong, please, and see what M.D. Anderson(if that's the place) has to say. I wish you the best of luck as you fight... all the best, Steve p.s. the other thing that is important is that M.D. Anderson is always doing a lot of clinical trials on new drugs and that may help you as well.. Melissa, there are no guarantees in all of this but I think you owe it to yourself to try to be your own advocate..seek different advice (from excellent sources) and then decide on a plan. ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: babs
Date Posted: May 09 2009 at 6:48am
|
Honey Dawn, Want to wish you the best of luck. I have just finished 3 weeks ago with my treatment, (both chemo and radiation). I am trying to be very positive about my future with this cancer. You will meet some of the best people on your journey know you are not alone. Keep your head up and stay positive it is important, YOU CAN DO THIS!
|
Posted By: Donna Zukowski
Date Posted: May 09 2009 at 9:00am
|
Hello Honeydew Newbie. I see you are from BC. I am from Kelowna, BC and was diagnosed with state 2a tnbc March 10/09. This is when the biopsy was done. I also had a normal mammogram in Nov 08 and found an enlarged lymph node early Feb 09. Now I see my mammogram showed dense breasts which is much higher risk for cancer especially as I am 53. All I got was a report that said come back in 2 years. I came to MD Anderson on Mar 5/09 and started chemo on Mar 13/09. 12 weeks of taxol to be followed by 4 cycles of FAC every 3 weeks, then surgery and if anything positive radiation. After 7 weekly treatments of taxol the breast tumor shrank by 47%. I do not know if this is great or not but glad it is at least responding. It started out at 1.7 cm. It was impossible to feel the lump in the breast and even the docs here could not feel it so they have said the lymph node may be what saved my life. I only hope and pray that it is not spread to multiple lymph nodes but there is no way of telling until after surgery. They said here that by doing chemo first they can tell if the tumor is responding. If it was not they would switch me to a different chemo. I will be here in Houston until June 5th and then traveling back and forth after that. I am very interested in the conferences you are talking about Steve? Do you know if there are any clinical trials for post treatment tnbc to prevent recurrence?? Donna |
Posted By: Nancy
Date Posted: May 09 2009 at 10:09am
|
Steve,
Thank you so much for helping Melissa. I had sent her a pm last night, but did not get on to check my email until late today, and have since sent her a list of names of all the women with lung mets and the chemo, and the directions for the site, and now I posted a thread for her in the mets forum. I sent her the link for where I posted. I know that the women there will respond.
The doctors have told her that they will give Taxol this time, so perhaps she can get some help here to make a more informed decision.
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: May 09 2009 at 6:24pm
|
Hi Babs and welcome to our forum, it is so nice to have you join although not so good you have to deal with cancer.
It is good to read you've completed your treatments.
Thanks so much for the great support to Honey Dawn, you are so right, hold that head up! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: May 09 2009 at 6:31pm
|
Hello Donna,
http://clinicaltrials.gov/ - http://clinicaltrials.gov/
http://www.cancer.gov/ClinicalTrials/ - http://www.cancer.gov/ClinicalTrials/
http://www.nlm.nih.gov/medlineplus/clinicaltrials.html - http://www.nlm.nih.gov/medlineplus/clinicaltrials.html
Here are 3 places you can go to look up trials that might interest you. There are many good places, these are just 3 to get you started.
You want to make sure your source is a good one.
Good luck and let us know if you find something interesting. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: SagePatientAdvocates
Date Posted: May 09 2009 at 6:46pm
|
Dear Donna,
keeping track of clinical trials is a daunting task even for a breast oncologist/researcher (I know several who are swamped trying to keep up) and as a layperson I am about a million miles away from a professional's perspective but I am ineptly trying to make headway and be a bit more knowledgeable about things...I am particularly interested in the BRCA mutation and TNBC. Pam has given you some very good links and I have two more to add- www.breastcancertrials.org. (there is a lengthy registration process but hang in there it is an excellent site). http://ww5.komen.org/BreastCancer/ClinicalTrials.html Unfortunately, from my experience, it is necessary to become one's advocate and it can be a draining process. All I can tell you is that Pam is fabulous and I will try my best, as well, to be informative.. In the meantime, my prayers are with you as you fight the fight. You are doing so at an excellent facility.. all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Suzanne
Date Posted: May 09 2009 at 6:59pm
|
Minnie, this is way off the subject but...
I noticed that you posted that your cancer was grade 1. You are the first person I have seen who had grade 1 TNBC. I rarely even see grade 2. Anyway, did your doctors talk to you about that being unusual for TNBC? Did they give you the information as to how they decided yours was grade 1?
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: Donna Zukowski
Date Posted: May 09 2009 at 7:51pm
|
Thank you so much Steve and Pam. I will look at these sites. TNBC is very worrisome and it seems they do not have treatment post chemo/surgery/radiation to prevent reoccurrence. I have been told even if we get rid of it with this 9 month treatment plan there is still a 30% chance of reoccurrence. Is this the data you are familiar with? I am hoping the odds are not so bleak. But if there are any clinical trials I think this is the best hope we can find something to better our odds or women in the future who get this diagnosis. Donna |
Posted By: SagePatientAdvocates
Date Posted: May 09 2009 at 8:20pm
|
Dear Donna,
TNBC is very difficult BUT I want to tell you that my daughter, in August, will be 5 years out from her surgery and actually she walked around, for 3 months, with a tender lump in her left breast that several doctors told her not to worry about "because cancer doesn't hurt." Obviously awful advice but in fact, in my mind (but not statistically on her chart), she is 5 years out because she had her cancer, undiagnosed, since at least May 2004. Also, I wonder how long her cancer was DCIS, undetected as she was told to wait until she was 40 to have a mammogram, also lousy advice. BRCA1+ women should start self breast exams at 18 and clinical breast exams at age 25. It is possible she is already a 6 or 7 year survivor. She is NED, fit but has been advised to continue an aggressive surveillance program..By the way her tumor was 75% invasive and we pray the 4 months of AC+TAXOL she received has done its thing..we have been told that the first five years are important.. her situation is also different than many women on this board because we are BRCA1+ (and many here are not....but also many have not been tested) so my daughter first had a quadrantectomy, then found out she was BRCA1+, then had a PBM and then a LAVH/BSO. Whether or not she would of had a recurrence or a new primary in her contralateral breast is of course, basically unknown at this point...also her SNB showed no lymph node involvement which is helpful. so yes, TNBC can be scary but I believe there is extensive research going on...some of it funded by a TNBCF-Komen grant and I am helpful that in years to come there will be more efficacious treatments and hopefully further down the road, a cure.. for now, it is what it is, and yes it is scary but I think you should try to focus on the positive. I have seen, time and time again, women really do well who have very positive attitudes..I am not trying to minimize the seriousness of this but I believe a positive attitude really helps.. wishing you good luck and I promise to try my best to be informative and it goes without saying that Pam and many others here will be as well..I believe TNBCF is a marvelous resource. We will help educate each other. all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Donna Zukowski
Date Posted: May 10 2009 at 2:12am
|
Steve all that I have read is the first two years post is the highest risk for reoccurrence. I too did not have good advice from a GP. But it did motivate me to get myself to MD Anderson days after diagnosis. I am tolerating the taxol pretty well, no idea how I will do with FAC. I am in the medical profession and I still did not pick this up until it was in the lymph nodes. But also glad that lymph node flagged it for me. I will ask for a BRCA1 test but I do not think I am eligible as I am the only one in my family who has breast cancer. My mom had a slow growing endometrial cancer in her 70's. I am hearing a very familiar story on these foums. Women who are fit, do not smoke or drink, eat healthy and no risk factors getting tnbc. This is me as well. So there is something that turns these cells on. I am positive most days, have taken a leave from work and am working on my Masters. So far my brain is doing ok on this and I will keep going. Thank you for your replies as it truly is helpful. Also wishing your daughter all the best. So if one tests positive for the BRCA1 this then gives them information to have prophylactic preventative surgeries. Are there any trials with any medications that can turn this gene off?? Donna |
Posted By: melissa in JPN
Date Posted: May 10 2009 at 3:09am
|
Dear Steve
Thank you very much for telling me great stories. In my case my current hospital is one of the best cancer hospital in Japan. This used to be my second-opinion hospital (taking second/third opinion is normal thing in Japan these days) and I am still wondering if I should change again. From tomorrow I start to take chemo for 3 months but I seriously think to get "3rd"opinion from MD Anderson as well. MD Anderson seems to be the best in the US,especially for my situation. Thanks a lot. Let's keep in touch. If I will have further questions, I maybe ask you again. big hug to you Melissa |
Posted By: minniemouse
Date Posted: May 10 2009 at 6:21am
|
Suzanne,
I was wondering if my Grade 1 was as unusual as I thought. My onc decided to call it Grade 2, because it was one point below that grade (5 of 9 on Nottingham Histological Score). My tumor also was well differentiated. Now I wish I had had another lab retest the biopsy.
minnie ------------- dx 02/09 @62;lumpectomy 3/24/09; 1.5cm; node neg; stg I/gr I; BRCA 1/2 neg 2 rnds Taxotere/Cytoxan; 2 rnds A/C (after lung react to tax); 33 rads. |
Posted By: Suzanne
Date Posted: May 10 2009 at 8:54am
|
Minnie, I just found an old poll on this site about TNBC grade. Four women (3%) said they were grade 1. Eleven (9%) indicated they were grade 2, while the majority, 106 ladies (88%), said they were grade 3. However, some people confuse stage and grade, so I still am not sure that the 3% for grade 1 is really correct. The "grade 1" women did not post any details, so it is impossible to tell if they really were grade 1. In any case, grade 1 appears to be rare within the TNBC group.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: trip2
Date Posted: May 10 2009 at 11:47am
|
Donna, if your mother had cancer than you do have a familial history so speaking with a genetic counselor is very important. I have read that there have been women being the first to show with a brca 1/2 mutation.
So we really have to be careful and get that counseling.
Check out http://www.facingourrisk.org - http://www.facingourrisk.org .
A fabulous website full of information on hereditary cancer and a wonderful forum full of people who will do their best to help answer your questions.
Our Steve works in that forum and does a beautiful job as he does here. We are lucky he found us!
Also if you look at the top there is a link called Resources. Click on that and a drop down box will appear, click on clinical trials. These will be specificately for TNBC. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: minniemouse
Date Posted: May 10 2009 at 11:53am
|
Suzanne,
My doc was very clear that both stage and grade were 1. It's definitely rare, though, so that's why I'd feel more comfortable with a second opinion on biopsy.
This information adds to our discussion: Just found online an NCI Breast Cancer Trial in 2008 that studied 145 women with tnbc.
11 of the 145 were low grade, of which only one had cancer spread in lymph nodes.
23 were moderate grade, also with low rate of metastasis.
the rest were high grade.
You could probably google this report; Seemed to be numerous reports on it.
minnie ------------- dx 02/09 @62;lumpectomy 3/24/09; 1.5cm; node neg; stg I/gr I; BRCA 1/2 neg 2 rnds Taxotere/Cytoxan; 2 rnds A/C (after lung react to tax); 33 rads. |
Posted By: trip2
Date Posted: May 10 2009 at 11:59am
|
Donna I have no idea personally if there are trials out there trying to learn how to turn these mutations off, possibly there are? You need to look at these websites you've been given and possibly play with your words in the search box to come up some trials that interest you. There are soooo many clinical trials one can read your eyes will cross. They are looking for what chemo will work against these mutations such as cisplatin Steve mentioned in his study he recently posted.
The BRCA mutations may not be affected by taxanes. All of this has to be figured out and it looks as if in the (I hope) near future it will be part of normal testing at time of dianosis so that they can use the chemotherapy that will work best.
I was reading about this yesterday and was surprised at how long they have been studying this and what chemotherapy works or doesn't work. And yes it poses many questions to us who have one of these mutations, how's come they are not using this information now? What's the holdup?
So if you learn you have a mutation than it is important information for you, your family members, your children because this mutation is passed down from either mother or father so your children and siblings would definitely need to know.
Alot of the studies I read regarding TNBC coming back show the first 3 yrs are our highest risk, it drops some, levels a bit and then declines down farther. But, it never hits bottom on the charts that I see so high vigilence is important for all of us.
Learn your body, do your breast exams, go to your regular check-ups, if you have any problem that lasts around 2 weeks and doesn't go away call your Onc's office and get in to see them.
That is about it for us. But you have to remember there are alot of gals who have joined our forum over time who have alot of years behind them so don't dispair. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: May 10 2009 at 12:21pm
|
Hi Melissa in JPN, what kind of chemotherapy will you be starting tomorrow? I certainly hope your day goes smoothly for you.
Hope you will keep us updated on how you are doing. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: May 10 2009 at 12:28pm
|
Hi Steve,
Thank you so much for the two good links. I will put them in the Resource section. I believe the breastcancertrials.org site is in there but will put them both in none the less.
I had a laptop quit on me just a few months ago and lost alot of my resources so again thanks! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Donna Zukowski
Date Posted: May 10 2009 at 12:37pm
|
Thank you Pam for this information. I will ask if I can get tested. My sister is asking as well. This has all been quite overwhelming emotionally. I am not sure when the huge ache inside dissipates. Or when 5 minutes of the day goes by that one is not living, thinking and breathing this diagnosis. I think the chemo makes one quite emotionally labile as well. Donna Stage 2a TNBC Dx Mar 3/09 |
Posted By: SagePatientAdvocates
Date Posted: May 10 2009 at 12:46pm
|
Dear Donna,
I think Pam's idea to meet with a Certified Genetic Counselor(CGC) is an excellent one. I would not get tested for "just" BRCA1...While 85% if BRCA1 women have TNBC when they have breast cancer a much lower percentage of BRCA2 women also have TNBC. I do not know the exact percentage but several BRCA2+ women have reported on the FORCE board that they had TNBC as well. A "family history" can be tricky. In my daughter's case, I was the carrier but so far (I hope) I am cancer-free. Theoretically I could have inherited the mutation from my dad and then if he did not have cancer you would have to look to his parents...The CGCs I have spoke to clearly feel that I got the mutation from my mother...she and her sister were both dx with breast cancer at 41 and their mother passed from ovarian cancer at 47. So I think it is important to especially pay attention to any early-onset TNBC and speak to a Certified Genetic Counselor. I would also print out the Narod group study abstract as even a CGC may not be aware(this study was published only two months ago..so good chance many have not seen it). The important thing is also to make sure you see a BRCA savvy CGC. From my experience, some are not just like some doctors are not. It is hard to be your own advocate, but at times, it's essential. I am going to try to speak to Dr. Narod at the FORCE conference next weekend and see if he has any additional thoughts about TNBC..I also want to understand from him what "early-onset" means to him..Is it age 35, 40, 45? of course, I will post only whatever I can (often doctors do not want to be directly quoted). I know the n (54) in this study is small. Nevertheless I feel it is very important. Anecdotally (as the researchers like to say) I have seen the vast majority of BRCA1+ women who have had breast cancer have it as TNBC. The reverse does not seem to be true. The majority of TNBC women are not BRCA1+ but the only way to know for sure is to test. I also realize the test can be very expensive, unless you are getting tested for the "Ashkenazi panel" as my family was..and that is still expensive. But, in my view, the knowledge can be life-saving. A BRCA1+ woman has a 85% chance of getting breast cancer in her lifetime and is at very substantial risk of getting cancer in her contralateral breast and is also at separate 45% risk of getting ovarian cancer, often early-onset. 80% of the time the ovarian cancer is only detected as Stage III/IV which is a giant headache. In short it is a miserable mutation for women to have and it is important, in my view, to try to establish if you have it. You ignore BRCA positive mutation only at your own peril. ................................... BMC Cancer. 2009 Mar 19;9:86. Links The prevalence of BRCA1 mutations among young women with triple-negative breast cancer. Young SR, Pilarski RT, Donenberg T, Shapiro C, Hammond LS, Miller J, Brooks KA, Cohen S, Tenenholz B, Desai D, Zandvakili I, Royer R, Li S, Narod SA. Women's College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada. sryoung37@aol.com BACKGROUND: Molecular screening for BRCA1 and BRCA2 mutations is now an established component of risk evaluation and management of familial breast cancer. Features of hereditary breast cancer include an early age-of-onset and over-representation of the 'triple-negative' phenotype (negative for estrogen-receptor, progesterone-receptor and HER2). The decision to offer genetic testing to a breast cancer patient is usually based on her family history, but in the absence of a family history of cancer, some women may qualify for testing based on the age-of-onset and/or the pathologic features of the breast cancer. METHODS: We studied 54 women who were diagnosed with high-grade, triple-negative invasive breast cancer at or before age 40. These women were selected for study because they had little or no family history of breast or ovarian cancer and they did not qualify for genetic testing using conventional family history criteria. BRCA1 screening was performed using a combination of fluorescent multiplexed-PCR analysis, BRCA1 exon-13 6 kb duplication screening, the protein truncation test (PTT) and fluorescent multiplexed denaturing gradient gel electrophoresis (DGGE). All coding exons of BRCA1 were screened. The two large exons of BRCA2 were also screened using PTT. All mutations were confirmed with direct sequencing. RESULTS: Five deleterious BRCA1 mutations and one deleterious BRCA2 mutation were identified in the 54 patients with early-onset, triple-negative breast cancer (11%). CONCLUSION: Women with early-onset triple-negative breast cancer are candidates for genetic testing for BRCA1, even in the absence of a family history of breast or ovarian cancer. PMID: 19298662 [PubMed - in process] ........................ good luck to you.. all the best, Steve p.s. being a BRCA1+ male also means you are at increased risk for a number of cancers from what I have been told...prostate, breast, colon, pancreatic...A BRCA2+ male is at even greater risk for some of these cancer but in both cases the risks are generally much lower than a woman's. But, it can still be lethal and surveillance needs to be done. ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Suzanne
Date Posted: May 10 2009 at 12:54pm
|
Minnie, I tried to find the 2008 NCI trial that you mentioned but had no luck. Would you happen to have a link or trial title?
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: trip2
Date Posted: May 10 2009 at 1:10pm
|
Donna when one is diagnosed it is sooo overwhelming. So many important issues to make decisions about. Seems like it should be the opposite way but it isn't so hence the nightmare.
Many of us take a mild sedative for one thing. Lots of deep breaths you need and try as best as you can to focus on one day at a time or an hour if must be. No one knows what will be down the road for you so throw that worry in the trash for now.
Things eventually fall into place but the first part is extremely hard to deal with, so we lean on sedatives to help us stay calm.
Best wishes to you and keep asking those questions, lean on us that is why we are here.
 ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: May 10 2009 at 1:17pm
|
Suzanne, you can go here and have a look see, you might find it.
http://www.cancer.gov/clinicaltrials/search/ - http://www.cancer.gov/clinicaltrials/search/ ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: minniemouse
Date Posted: May 10 2009 at 1:29pm
|
Suzanne,
One site referring to this study is http://www.hopkinsbreastcenter.org/artemis/200805/16.html - www.hopkinsbreastcenter.org/artemis/200805/16.html
i also found reference to it on http://www.physorg.com/news127138663 - www.physorg.com/news127138663
------------- dx 02/09 @62;lumpectomy 3/24/09; 1.5cm; node neg; stg I/gr I; BRCA 1/2 neg 2 rnds Taxotere/Cytoxan; 2 rnds A/C (after lung react to tax); 33 rads. |
Posted By: Nancy
Date Posted: May 10 2009 at 2:24pm
|
Suzanne,
Is this the trial to which you were referring? Two links.
Nancy
http://www.cancer.gov/clinicaltrials/results/breast - http://www.cancer.gov/clinicaltrials/results/breast
http://www.bio-medicine.org/medicine-technology-1/NCI-Funded-Clinical-Trial-to-Study-Treatment-of-Breast-Cancer-Using-Cryoablation-3359-2/ - http://www.bio-medicine.org/medicine-technology-1/NCI-Funded-Clinical-Trial-to-Study-Treatment-of-Breast-Cancer-Using-Cryoablation-3359-2/
------------- 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: Suzanne
Date Posted: May 10 2009 at 2:35pm
|
Thanks. I found the press release. The info. on grades of TNBC and association with mets came from a study, not a trial, in 2008 from New York University. If anyone ever finds the full study, I would love to read it. Everything I saw just showed the basic press release. I even looked under the physician's name but couldn't find the full study there either.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: Donna Zukowski
Date Posted: May 10 2009 at 2:43pm
|
Thx Pam. Yes I do have sleeping pills and would not sleep without them. I have a couple of big decisions re surgery coming up. Might even be facing a mastectomy a week before our son's wedding. This after all the chemo seems daunting in what kind of shape I will be in. How does one even pick out a dress to wear. So life goes on even when your world is turned upside down. I am drawing on every ounce of resources I have to stay positive but I really think the chemo does a number on your emotions as well. I'll turn this day around; just been a tough one. Donna |
Posted By: Sunris
Date Posted: May 10 2009 at 3:23pm
|
Hi Donna,
Sounds as if you are in good hands!! I also go to M.D. Anderson ( Fortunately I live in Houston area) . Your treatment schedule sounds identical to mine. I've rather gathered that it is the "standard" from also talking to other women at the Mays Clinic...I've had 6 treatments of 12 of the Taxol so far and my tumor is also shrinking ( started out at 4.0 cm. ) Still unsure regarding node involvement. They will do sentinal biopsy prior to surgery once I have completed all of my chemo. Hang in there !! |
Posted By: Sunris
Date Posted: May 10 2009 at 3:30pm
|
Hi Steve,
I have actually already met with the Genetic Counselor and have already submitted my blood for testing. They said it would take approx. 2 weeks to get the results. Obviously I'm hoping for a negative, most especially since I have 2 daughters. I knew that a big portion of TN are BRCA+, but did not realize it was anywhere near 85%. WOW! Thanks for looking out for me ! DX 3-09-09 / Stage 2-3 /4.0cm/Grade 3 |
Posted By: SagePatientAdvocates
Date Posted: May 10 2009 at 4:44pm
|
Dear Sunris,
I wish you good luck with your testing... Let me clarify...85% of young BRCA1+ women who have breast cancer have TNBC. 85% of women who have TNBC are not BRCA1+. I do not know if there are statistics regarding TNBC and the % of women who are BRCA1+. I doubt if there are any reliable figures on this because so many TNBC women are not advised to have genetic counseling/testing. Dear Suzanne, I will be meeting with a genetic counselor from NYU later this week..if you give me the name of the study(or author) regarding TNBC and mets I will try to get a copy from her and post the details.. all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Suzanne
Date Posted: May 10 2009 at 7:15pm
|
Steve, thanks for your offer to find out more about the study on TNBC grades and relation to lymph node mets. The study was done by Dr. Cecilia Mercado, NYU School of Medicine, and was presented to the ARRS (American Roentgen Ray Society) on April 14, 2008.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: Donna Zukowski
Date Posted: May 11 2009 at 2:47am
|
Hello Sunris. It does sound like we are on exactly the same course here. I have just done my 8th Taxol. There was 46% shrinkage after 7 treatments. I have treatments on Fridays and am going to a few of the education things at Anderson. How are you finding the taxol?? Also have you been consulted to a surgeon? I have debated going to the support group on Thurs. Have you tried this?? Donna |
Posted By: Sunris
Date Posted: May 11 2009 at 2:45pm
|
Hi Donna,
My treatments are on Thursdays and I have had 6 already. This week will be # 7. So far, honestly, It has been rather smooth sailing. I have had extremely minimal nausea, no vomitting, but have had some lower extremity swelling ( very manageable) , and some upper GI upset....Oh, and of course hair loss ....grrrr!!!!! I have not tried any of those classes you speak of but mainly because I am also still working full time. On my last visit she (Dr. Green) did feel as if the tumor is shrinking just based on "hands on exam"....I have actually had a surgical consult with Dr. Lucci ( he was great!) I will have another bone scan June 1, and another ultrasound , CT of the chest, and uhh...something else...lol on June 25 to check progress. Do you live in Houston area ? |
Posted By: susied
Date Posted: May 11 2009 at 2:47pm
|
I finally got a copy of my mammo, ultrasound & biopsy reports.....nothing the surgeon hadn't told me really except I have a question.....(dumb question #1 coming up......) what does "Ki" mean...and the numbers that what is good and bad that follow it???
MRI was ok....I only felt like I was suffocating once and it did go faster than I thought......the 2 hr window they quoted me was almost right when you factored in reception, registration, positioning , IV insertion & the MRI itself.....
Thanks,
Carole (susied)
|
Posted By: Sunris
Date Posted: May 11 2009 at 3:06pm
| Ki ? Something to do with an antigen used during the testing ? |
Posted By: Donna Zukowski
Date Posted: May 11 2009 at 3:53pm
|
Hello Sunris. I see Dr. Lucci on June 1st. We are going to fly back and forth once I start the FAC on June 4th. Was it Dr. Lucci who ordered another bone scan, CT etc.? How long after you finish FAC do they expect to do surgery and any idea what kind you will have?? I have no idea at this point. Also do not have any more bone scans etc. unless it is Dr. Lucci who will be ordering that. Donna |
Posted By: trip2
Date Posted: May 11 2009 at 4:04pm
|
Your ki 67 number on your pathology report tells how fast the cells are growing and dividing on your tumor. Anything over 20 is considered aggressive and the higher the more aggressive.
http://breastcancer.about.com/od/tumormarkers/f/ki67.htm - http://breastcancer.about.com/od/tumormarkers/f/ki67.htm ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: susied
Date Posted: May 11 2009 at 5:06pm
|
Wish I could say thanks and mean it....mine is very high.......65%
guess I am in for a bumpy, bumpy ride.......now I;m scared.....
susied
 |
Posted By: trip2
Date Posted: May 11 2009 at 5:39pm
|
Hi Susie, honey don't let it worry you, just make sure you get your treatments and you should be fine. Mine was 87% last time and there have been several woman post with much higher numbers than yours.
It will be ok, you will see. There are many factors they look at when they figure your treatment plans.
Please don't be scared, you have alot of people here that want to support you thru this difficult time. Wrong choice of words, it might not be difficult at all. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: susied
Date Posted: May 11 2009 at 5:49pm
|
Thank you, thank you thank you, I am already out of my mind with nerves and worry and when I learned that number and what it meant, I figured I was headed for the little plot up the hill sooner than I ever thought.........
I thought I was doing ok...even the MRI was ok, but this sent me to a new level of panic.........I had read with ladies at #3 or 9 and here I am in the 60's........had no idea what to think......
It makes the waiting for MRI results a little less stressful (I think) and a glass of wine will not hurt!!!
Thanks again,
susied
|
Posted By: Donna Zukowski
Date Posted: May 11 2009 at 6:40pm
|
Hi Susied. My ki 67 was 70. The oncologist said the more rapidly dividing it is the harder the chemo hits them. That was helpful for me to hear especially once you get started. Is chemo in the plan for you?? Donna |
Posted By: susied
Date Posted: May 11 2009 at 7:31pm
|
Yes, as far as I know at this point.....chemo before any other procedure whether it be lumpectomy, mastectomy or double mast depending on MRI results, staging etc..........my surgeon is a firm believer in killing any stragglers as he calls it.......
You have all made me feel much better....think I will sleep tonight instead of rambling around the house......worrying isn;'t going to get me anywhere but exhausted and I guess I should be thinking about conserving my strength for what is next...problem is I thought I had a prettty good handle on it.....not so much I guess.
Thanks again....I needed to hear that kind of info
susied
|
Posted By: SagePatientAdvocates
Date Posted: May 11 2009 at 10:45pm
|
Suzanne, just emailed my contact at NYU...will try my best
take care Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Sunris
Date Posted: May 12 2009 at 2:21pm
|
No, Donna...Dr. Lucci did not order those tests....Dr. Green did. Why should I not have any more tests unless Dr. Lucci orders them ?
My expected path will be finish the FAC, then take a couple weeks off , then have surgery. Not sure still at this point whether that will be Lumpectomy or Mastectomy ( certainly hoping for lumpectomy) ! |
Posted By: SagePatientAdvocates
Date Posted: May 12 2009 at 4:03pm
|
"Hi Steve,
Seems like this was an abstract presented at this meeting and may not have been written up as a full paper. But, I was able to find the abstract…. 059. Does Histologic Grade Correlate with Nodal Status in Triple-Negative Breast Carcinoma? Vieira, C.*; Mercado, C.; Guth, A.; Moy, L.; Toth, H.; Cangiarella, J. New York University School of Medicine, New York, NY Objective: Recent studies have suggested that triple-negative breast cancers have a more aggressive clinical course than other forms of breast carcinoma. The purpose of this study is to determine if differences in histologic grade translate to differences in nodal status among the triple negative breast cancers. Materials and Methods: The records of 130 women diagnosed with triple-negative breast cancer defined as those with estrogen receptor negative, progesterone receptor negative and HER2neu negative were identified and reviewed retrospectively. The mean patient age was 61 years (range, 28 to 95 years). The histopathologic grade of the tumors was correlated with nodal status at presentation. Results: Histopathologic analysis showed 5 well-differentiated (3.8%), 13 moderately-differentiated (10%), and 112 undifferentiated (86.2%) triple-negative breast cancers. 127 patients underwent sentinel lymph node procedure and/or axillary lymph node dissection.Of these, 36 had axillary lymph node metastasis (28.3%). No patients with well-differentiated carcinoma had evidence of axillary metastasis. Only 2 patients (15.4%) with moderately-differentiated carcinoma had axillary metastasis compared with 30 patients (26.8%) with undifferentiated carcinoma. Conclusion: In our cohort of patients, triple-negative breast carcinomas were found to be predominantly histologically undifferentiated (86.2%). Histologic grade was a significant predictor of axillary metastasis in triple negative breast cancer patients. I emailed Dr. Mercado to see if possibly it was published, but I am not able to find it. I’ll let you know when I hear back…" Suzanne, hope the above helps all the best. Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Donna Zukowski
Date Posted: May 12 2009 at 5:29pm
|
Dear Sunris. I have not seen a surgeon yet and was mostly curious about whether they order a bunch more tests in addition to what the oncologist orders. I am also wondering how long after chemo finishes that one can expect to have surgery. Mainly because my son is getting married one month after I finish chemo and possibly I will have surgery before the wedding. I have no idea until I see the surgeon. So I have lots of unanswered questions. But will find out soon. Donna |
Posted By: Sunris
Date Posted: May 13 2009 at 2:56pm
|
Donna,
Dr. Lucci spoke of surgery occurring approx. 4 weeks after receiving the last dose of FAC. I'm going to guess this is standard. If you have special requests, I'm sure he can delay it a week so you can attend your son's wedding. Oh, and he did not order any additional tests at all. |
Posted By: Donna Zukowski
Date Posted: May 14 2009 at 3:02am
|
Hi Sunris. Thank you for this as it helps in my mind as I think about what I might wear for this wedding. I might just fly back here the day after the wedding if that is what works out. They get married on Sept 6th and my last FAC is Aug 7th. I am wondering if anyone works while they are getting FAC and how that goes?? I know it affects everyone individually. Are you planning to continue working Sunris? I took a leave from work and am working on my Masters which has gone ok so far. But I have to do a 2 week practicum right after I get my first dose of FAC. I guess I am about to find out how it all goes. Donna |
Posted By: Nancy
Date Posted: May 14 2009 at 7:17am
|
Donna,
Lori had ACT and with the exception of Friday, the day of chemo and the following Monday and Tuesday, worked all through her chemo and rads. She teaches second grade, and I really do not know how she did it, but she did. Lori had just been offered the position about a month before she was dx, so she really felt she had to do this.
Lori did always make sure that she had all her lesson plans done before the day of chemo, and anything else which required her to use the computer, as her vision was so blurred and it made her nauseated to get on the computer, or to even watch TV. She very seldom watches TV, so that was not a big deal.
You will have to play this by ear as to your practicum, and you might do very well. Pehaps doing as Lori did as to any computer work might help.
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: Donna Zukowski
Date Posted: May 14 2009 at 8:01am
|
Thank you Nancy. This is quite helpful. I will be having chemo on Thurs and start the practicum the following Tues. for 2 weeks so will be done before I get the 2nd cycle of FAC. I am presently on taxol and doing ok. I am also not working and just doing Masters courses so I am sure this helps. I do have to get back to work though. I am a Registered Nurse so will be looking at this soon. Donna |
Posted By: HoneyDawn
Date Posted: May 14 2009 at 1:20pm
|
Hi Donna, Hope you are doing OK at Anderson. My second consult has been at Moffitt, since I am in Florida, but if things look really bad, I am reserving Anderson for my third choice. How are you doing? I am not ignoring you, I am just so overwhelmed with all this stuff.
How are you doing? |
Posted By: Donna Zukowski
Date Posted: May 16 2009 at 3:25am
|
Hello HoneyDawn. It sounds like you caught things early. I sure wish I could have felt the lump before finding the enlarged lymph node. The docs her at Anderson could not feel it in the breast either. I just had my 10th out of 12 doses of taxol. I had a nasty rash on my head that I managed to clear up with tea tree oil in the morning, Vit E oil at night and benadryl ointment plus a Benadryl tablet at bedtime. The rash can be quite common and it is this regime that completely cleared it up for me. Next up was nasty blisters on my feet so bad they were threatenng my ability to walk. I like to get out for a 5 km walk daily. So nightly epsom salt and Vit E oil soaks have pretty much cleared them up. This week has been GI. Feels like my whole GI tract is raw and nauseated. Took Zofran and it worked somewhat. Anyways I am worried about the FAC I start on June 4th and the GI side effects. So anyone that has any tips that could help me. I already am taking a prescription antacid nexium. Yes HoneyDawn this is unbelievably overwhelming. I was diagnosed Feb 27th (lymph node came back positive) and then an MRI on Mar 3rd showed it in the left breast 1.6 cm. I found the enlarged lymph node in the shower. My GP in Canada told me there was no rush as it is already in the lymph node. She did not send my referral in to the cancer centre where I live for 9 days. I was emotionally a wreck so came down here to Anderson. Started chemo on Mar 13th. I have 3 adult sons. One of them is holding the fort down in Canada and my husband came with me. Another son grads June 18th so we are aiming to get to that. So are you ahving surgery first? This much be coming up soon for you then?? Donna |
Posted By: Donna Zukowski
Date Posted: May 16 2009 at 3:31am
|
By the way at this point I am stage 2a TNBC grade 3, 1.6 cm. 1 pos. lymph node for sure. CT, bone scan, MRI all came back ok. We don't know how many lymph nodes however. Plan is 12 weekly Taxol, 4 cycles of FAC, surgery (either lumpectomy or mastectomy) and removal of lymph nodes. Radiation if there is anything showing positive at the time of surgery. So I pray the chemo clears it all by the time of surgery. Donna |
Posted By: Judy g
Date Posted: May 16 2009 at 8:57am
|
Hello all,
My name is Judy I am 49 and was diagnosed with Stage II TNBC in April.
I have had a lumpectomy and had lymph nodes removed and 1 out of 7 had cancer.
This lump was 3.6 cm and kind of just came out of no where. After having it removed along with 2 benign cysts, I ended up in the hospital 4 days later with what we still have not clearly identified, but was most likely c-def (sp?) I was also the recipient of a bladder infection, so the two antibiotics gave me an infection in my intestines. I also have ulcerative colitis, so I get a little more bang for my buck so to speak :)
I am having my port put in on Monday 5-18 and start Chemo on Tuesday 5-19.
When my husband and I sat down with the Oncologist, she explained everything, wrote it down for us, and we left thinking we knew what was going on and we are completely overwhelmed which I am sure is the norm. So what I know is this:...I'm doing AC x 4 T x 6 (I think is Taxol)
the AC is 1x ev 3 weeks, I am guessing this is 4 cycles then the taxol 1 x a week for 6 weeks....then something called dexclense for 2 weeks, not sure if that's in between or with or what. Then radiation. I know when we see her on Tuesday we will ask again, but this is all pretty confusing.
I have been reading a little, not too much because I don't want to overwhelm myself with too much info and then just freak out. I found this site yesterday and have found all to be pretty positive, and helpful, so thank you in advance! ------------- Judy dx 4/09 lumpectomy 4/24 4.5cm node positive; stage 2 A/C, Taxol, Radiation Brain Met, 6 cm 5-28-10 (surgery) Gamma Knife: July'10,August'10, Sept.'10 WBR, October 10 (x15) |
Posted By: Donna Zukowski
Date Posted: May 16 2009 at 1:09pm
|
HI Judy. Yes it is alot to put together especially when you are living it. Please let me know how things go with your AC next week. I wonder what the dexclense is?? Is this a type of chemo. There are so many different combos and kinds that women seem to go on with breast cancer. I keep a piece of paper by my computer and when I think of a question jot it down for when I next see the oncologist. Did you find the lump yourself?? I am wishing you all the best Judy next week. Donna |
Posted By: Suzanne
Date Posted: May 16 2009 at 2:14pm
|
Judy, I have a feeling what you thought was "dexclense" really is "dose dense", meaning chemo every other week. If your oncologist suggested AC every three weeks, you might ask about getting dose dense instead. Dose dense has been found to be more effective than treatment every three weeks. The Taxol you mentioned is usually given every week for 12 weeks or every other week for fewer treatments. I think both methods are thought to be equally effective.
It really is hard to keep everything straight. Good luck.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: Judy g
Date Posted: May 16 2009 at 3:12pm
|
Hi Donna,
yes I found the lump myself, it was 4.5 cm. right on the front above my nipple, right breast. Just kinda came outta nowhere.
I still have my period and that month my breast was really sore, and I felt it, thought it was a cyst, and waited for it to go away but it didn't. I went to the Dr. and she sent me off for a diagnostic mamogram and ultra sound.
I opted not to have the needle biopsy as we knew it was big, so i had it removed, and then a week and a half later I had a lumpectomy and lymph node disection.
So now I await Monday and Tuesday and I will see how it goes.
thank you !
Judy ------------- Judy dx 4/09 lumpectomy 4/24 4.5cm node positive; stage 2 A/C, Taxol, Radiation Brain Met, 6 cm 5-28-10 (surgery) Gamma Knife: July'10,August'10, Sept.'10 WBR, October 10 (x15) |
Posted By: Judy g
Date Posted: May 16 2009 at 3:15pm
|
I know this sounds crazy, but i had to correct myself as my husband was reading this and said my lump was 4.5cm not 3.6 as i orignally thought, not that it matters but wanted to make the correction :) ------------- Judy dx 4/09 lumpectomy 4/24 4.5cm node positive; stage 2 A/C, Taxol, Radiation Brain Met, 6 cm 5-28-10 (surgery) Gamma Knife: July'10,August'10, Sept.'10 WBR, October 10 (x15) |
Posted By: Donna Zukowski
Date Posted: May 16 2009 at 5:41pm
|
Hi Judy. I was diagnosed 1-2 months before you (Feb 27th the lymph node biopsy was positive and we knew just not where it was). In some ways getting on the chemo was a relief because you know it is searching out any stray cancer cells. Every time I get it I imagine it tracking down those cells and knocking them out. The taxol has been not too bad. It is only after the 10th dose that I have been getting challening GI side effects. I do not know what the FAC will do but have been told it is harder on you but also harder on the cancer cells. It is the best we have. Sounds like you will get the AC part of FAC. Every person is individual and seems to get something different depending which oncologist you are going to. What amazes me is how fast it does come up. The same thing happened with me except it was the lymph node. Donna |
Posted By: Judy g
Date Posted: May 17 2009 at 4:06pm
|
Hi Donna,
thank you for answering. I am just trying to keep an open mind and not really think too much about the chemo, I am trying to stay positive and I like the idea of thinking that it tracks down those cells.
I can't help feeling like everything in my life will now completely change and I guess the unknown part of how I react to all of this is what is causing me the most fear.
I think once I get the port and then the first dose of chemo I will have a better sense of things and be able to figure it out for the most part.
thank you again! ------------- Judy dx 4/09 lumpectomy 4/24 4.5cm node positive; stage 2 A/C, Taxol, Radiation Brain Met, 6 cm 5-28-10 (surgery) Gamma Knife: July'10,August'10, Sept.'10 WBR, October 10 (x15) |
Posted By: trip2
Date Posted: May 17 2009 at 7:34pm
|
Hello Judy Q and welcome.
I hope next week goes smoothly as possible for you.
You seem to have a pretty good grip on this thing and yes once you begin your treatments you will fall into a sort of routine.
In the News, Rescource & Tips section of the forum you will find lots of information for those newly diagnosed and beginning treatment. Also many tips from members of this forum on how to get along during treatment and radiation if you are having that.
Best wishes and keep in touch, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Donna Zukowski
Date Posted: May 18 2009 at 3:05am
|
Everything in my life has changed but much of it is because I have changed. Some of it is good as I never could say no, loved to volunteer etc. So I was juggling so much and loved doing so. I think once I get through the treatment process I will look at everything and be a different person and that will be the main reason my life will look different. I too have too many fears to think about the future just yet. I have been told this eases off but not when you are in the thick of it. I hope it all goes well for you today and tomorrow. You are taking things one step at a time already and this was the advice I got. Donna |
Posted By: minniemouse
Date Posted: May 18 2009 at 3:49am
|
I have to jump in. I've spent the last few days comforted by the posts I read on this blog. It makes me feel so much less alone. I'm achy and tired after second round of chemo and not up to doing much more than short walks.
I, too, was someone who juggled many balls and kept taking on more. I love being in the thick of things, hosting gatherings, attending professional conferences, taking care of family and friends. Now people take care of me. They do it beautifully, my husband and friends, but I feel isolated from my world. I know many of you can relate.
Yesterday, my 89-year-old mom, who must use a walker and reside in assisted living and who relies on me for almost everything else, came up with an idea for "helping" me -- she could stay with me, keep me company, if my husband wanted to spend the day fishing or whatever. It touched my heart, it was so sweet, even if it was impractical. And it made me feel sad that my Mom can't take care of me the way moms yearn to do.
Thanks to all of you who tend this site and offer your wisdom and experience, and blessings to all of you who are on this journey too.
minnie
------------- dx 02/09 @62;lumpectomy 3/24/09; 1.5cm; node neg; stg I/gr I; BRCA 1/2 neg 2 rnds Taxotere/Cytoxan; 2 rnds A/C (after lung react to tax); 33 rads. |
Posted By: Donna Zukowski
Date Posted: May 18 2009 at 4:09am
|
Hi Minnnie. What a wonderful story about your mom. I can imagine what is going on in her heart. When you talk about being in the thick of things the day I was suppose to get my biospy results of the lymph node I had found I was suppose to go on this big Canada wide nursing conference. I debated back and forth thinking the results could be benign, trying to talk myself out of thinking the worst etc. Thank goodness I did not go as I was not prepared at all for the emotional blow about to come. Minnie where are you at in your chemo rounds? How are you doing and are you managing to work? I start FAC the beginning of June and have to decide whether to just take time off work and apply for the benefits to cover me and just think of going back to work in the fall after surgery. I know some people work. Probably an individual thing. My job is management and I am so focused on myself it is hard to imagine doing my job. It has been the self care that has kept me going day to day. Donna dx Feb 27/09 stage 2a TNBC 1.7 cm 12 weekly Taxol (on 10th) 4 -3 weekly FAC then surgery then radiation is anything pos at surgery |
Posted By: minniemouse
Date Posted: May 18 2009 at 4:28am
|
Donna,
I just finished round 2 of 6 rounds of taxotere and cytoxan, to be followed by radiation (I can't recall how long a rest they give me between the two, but i recall being told it might be november when i'm finally done.)
And of course, we know "done" has limited meaning here.
A few years ago, I took early retirement as a journalist -- a smart move on my part considering the death spiral of the industry. I began writing a book, with which I am almost 2/3 done. But this all has taken so much out of me emotionally and physically that it's hard to continue. And I haven't been participating in any of the writing activities and critiques that kept me going. I am so lucky in many ways. I have a supportive husband and good health insurance. I am in awe of those who keep working during this. I would be missing one week of three of work for sure.
minnie
------------- dx 02/09 @62;lumpectomy 3/24/09; 1.5cm; node neg; stg I/gr I; BRCA 1/2 neg 2 rnds Taxotere/Cytoxan; 2 rnds A/C (after lung react to tax); 33 rads. |
Posted By: Donna Zukowski
Date Posted: May 18 2009 at 4:36am
|
Hi Minnie. I believe if I have radiation it will be after I heal from surgery. No idea what kind of surgery yet but may have some idea after seeing the surgeon on June 1st. I am guessing Oct I may be finished and yes I hear what you mean by "done". Amazing re writing a book. I am working on a Masters. I have no idea how much of it I will keep going and am continuing right now. We'll see. Donna |