BRCA1 Positive (Triple Negative)

RubyBaby · May 2008

RubyBaby · May 2008

I am newly diagnosed with BC, the same disease that took my sister's life at young age. I have < 2cm tumor and at least one malignant axillary lymph node. Earlier, my surgeon gave me options of lumpectomy and mastectomy. However, now that the genetic test result came in, he recommends double mastectomy and removal of ovarian, which is very overwhelming to me. I am also still young, and would like to take care of my existing BC first with lumpectomy, followed by radiation, chemo, and then, remove the other breast and ovarian on the line of my life (still near future, but not right now). When you have the bad gene, the solution always has to be removing them all at once just as soon as possible? I would like to hear from anyone who have gone through the similar situation. Also, please kindly advise if you know any medical expert of heredity BC in NYC who I can count on. Thank you for your insight.

twink · May 2008

I wish I had good advice for you ruby. My cancer was triple negative but I haven't been tested for BRCA yet and I have no family history of so am probably negative. I have seen mention of this website for BRCA+ women: http://www.brca.com/ I hope you get help there.

snowyday · May 2008

Wow thats a tough line your doctor is taking, I'm triple negative had a lumpectomy followed by chemo then rads. My margins were/are bad so I'd be asking abou the location of the tumour is it right on the chest wall or is it on the out portion. And get a second opinion. I'm sorry for your diagnosis. My sister's name is Ruby.

Big Hugs, Pearl

tos · May 2008

My daughter was 39 last year and was diagnosed with multi-focal tumors, one triple neg and the other one was er+. Seven nodes were positive. She had a single mastectomy and then treatments.

She also tested and has the same brca1 mutation that I have so when her treatments were finished she went on to have a mastectomy on the other side and her ovaries removed and is now finishing up reconstruction.

You might consider a second opinion. These things don't always have to be done at once but everyone is different and I don't know all about your particular situation.

I would also suggest you go to http://www.facingourrisk.org

They have excellent information on brca's and surgeries etc.,.

Best wishes to you,

smithlme · May 2008

Twink,

Thanks for the great web site. I am currently awaiting my results for BRCA testing. Hopefully, I'll have them on June 2.

Ruby,

I'm so sorry for the overwhelming amount of information you've received. None of these decisions are easy and we each have to get our facts and go with our "gut" instincts. Each diagnosis is as different as we are, and so are the recommendations and treatment. Some days I wish I had a crystal ball to show me the way!

Last March I was diagnosed with IDC and, because of my family history, I chose to have a Mastectomy. This was followed by DD AC and Taxol. I attempted TRAM flap recon in January, but due to poor blood flow, it failed and I lost the flap and muscle. This past March, I was diagnosed with a new primary of DCIS. Again, I chose another Mastectomy. Hindsight is 20/20, but I was the one who ultimately chose what I did.

Since my first Cancer was a triple negative, my family history and my recent diagnosis, I have chosen to have genetic testing. If I test positive for BRCA1 or 2, my genetic counselor has recommended a total hysterectomy, and I agree. I have 4 kids and 2 1/2 (due in Sept) grandchildren to keep as educated as possible about Cancer. It's a scary thing we'ra all dealing with, but my kids know this is something we all need answers to...

Linda

CalGal · May 2008

Hi Ruby -

Let me speak from experience ... I focus on going forward, since I can't change the decisions I made based on what I knew then ... but I try to share what I've learned with others so they can make a more informed decision. Not to scare you, but my situation may ...

I had a family history of bc (but didn't know that pre-menopausal bc and bi-lateral bc were indicators of a likely BRCA mutation), which my mom had. Her bc battle ran from age 46-59. My maternal grandma was dx'd at age 47, but she died in 2005 at 93 unrelated to bc. I thought mamm's (from age 25) and bse's would be enough ...

In 9/04, I was dx'd with bc, invasive on the L, DCIS on the right, triple negative. Quite frankly, I was thrilled that I had the option of a bi-lat lumpectomy (rather than a mast or bi-lat mast) and SNB. My invasive tumor was also 2 cm. I was an "older" first-time newlywed wanting kids ... and when my SNB was all clear, that clinched it, I chose rad'tn and not chemo.

And let me add, which I consider an unfortunate secret, is that while bc USUALLY spreads first to the lymph nodes (before an organ or the bones), it doesn't always ... and can ALSO SPREAD VIA THE BLOOD (and one can have clear nodes!)

In 12/05, I found a lump (later it became obvious that it was missed on a 10/05 mamm). Again, I asked for a CT scan ... and finally got it and more than I feared ... mets to the liver and the "incidental find" of likely kidney cancer. OMG ... Absolutely devastating ...

It wasn't until AFTER my recurr bc and mets dx, that I took the genetic test and found out I was positive for one of the BRCA1 mutations. While I did some trip neg research on my initial dx, it wasn't until my recurr & mets dx that I really dedicated myself to research and being an advocate for my health care.

I won't get into my treatments, but I did get to NED and stay there for 13 months!

During that time, I was looking into a bi-lat mast and recon (despite being told the "horse has left the barn". The absolute top source of info is the book "The Breast Reconstruction Guidebook, Issues & Answers from Research to Recovery" by Kathy Steligo. It's available thru the FORCE (Facing Our Risk of Cancer Empowered) website (www.facingourrisk.org) which was mentioned by galnok above. Read it first and then have some consults with breast surgeons and plastic surgeons.

The book is outstanding and goes over what to expect with lumpectomies and mastectomies. It also gives great info on ALL of the recon methods. You have to figure out which recon method works best for you - as most plastic surgeons have a preferred recon method (which works best for them)!

Also, IMO, after my research and 3 opinions with ps's is that 1) cosmetic results are better with bi-lat mast & recon done at the same time; and 2) radiation damages the skin and makes implants a lot more risky (which was my preferred option).

I'll never know if I had had bi-lat mast's and chemo instead of bi-lat lump's and rad'tn if I would be in the mets situation I am now ... I ate healthy, exercised my entire adult life (after being an athletic kid and teen), etc ... and now realize that with the genetic mutation, it's really on a molecular level ... and that I had a 1 in 5 chance of bc by age 40 and a 80% chance of bc by age 80 (unlike the regular population who has a 1 in 8 chance of bc by age 80).

Also, I still have my ovaries. My recurr & mets dx was two weeks after my first pregnancy ended in a miscarriage ... I never got my periods back ... As for the chemopause/menopause, with ovaries, our bodies produce some estrogen. W/o the ovaries, there is NO estrogen ... and as women with bc (even if trip neg), most onc's won't give you any kind of hormone replacement therapy. I want to hang on to my ovaries as long as possible ... If I didn't have mets, I might have a different view ...

Although my mother had a 13 year battle vs bc, when it went beyond her lungs to her liver, she passed in about a year. So, when I got my liver mets dx, quite frankly, I thought I was a goner ... and didn't look into fertility options ... In hindsight, I wished I would have banked some fertilized eggs ... So, just in case, you should consider your fertility options before you start treatment.

Best to you with your difficult decisions,

CalGal

msthanglila · June 2008

In October 1999 I had a hysterectomy due to endometriosis and the left ovary and tube were left in to produce hormones. In January 2008 I was diagnosed with infiltrating ductal carcinoma, triple negative, in the left breast with lymph node carcinoma in the left axilla. I had a lumpectomy and the affected lymph nodes removed the same month. Between January and March I had several CT, Ultrasound, and MRI's done to see if any mets had taken place. The results were negative for mets although the cancer had spread to lymph nodes in the center of my chest and up into my neck on my left side. Because my mother died of breast cancer (both breast were removed but not at the same time, she also had uterine cancer) at age 33 in 1974, I had the BRCA tests done. I tested positive for the BRCA1 gene in late April 2008. I am 44 years old. I decided to have the bi-lateral, prophylatic surgery (right breast and sole ovary removed). I did not do the recon because my doctor said it would be too much surgery for me due to my large breasts. The surgery took place May 27 and on May 31 I received results one out of 10 left axilla nodes was positive for cancer, no residual cancer in affected left breast and that my ovary and tube contained cancer that was not spread by the breast cancer. The cancer is primary ovarian cancer. I am glad I did the prophylactic surgery because I would never had known about the ovarian cancer if I hadn't. I have undergone 4 rounds of chemo to address the breast cancer and was supposed to undergo 4 more rounds after the mastectomy, but now I have to undergo surgery to stage the ovarian cancer although the ovary and tube have been removed, the cancer still could have spread. I will undergo chemo eventually to address both breast and ovarian cancer.

I did the prophylactic surgery because after everything I went through with my first dx of breast cancer, I would not want to repeat. Having the BRCA1 or BRCA2 gene puts you at high risk for recurrence or metastisis. The surgery was piece of mind for me.

laurie711 · June 2008

I never usually get on the discussion board, but I have been scanning it lately and have realized that their are some really good suggestions with from people that have had the same kind of bc that I do.

In response to your comment, I was diagnosed with bc in early 2004 (age 40) , early stage II, 2cm tumor with no lymp node involvement. I originally decided to have a lumpectomy vs. mastectomy eventhough my grandmother, aunt and stepsister (who got diagnosed 4 months before me at age 31) all had bc. My grandmother passed at 56 (1978) and my aunt, her daughter passed at 38 (1988). When I first was diagnosed it was so overwhelming I really didn't know what I was doing or wanted to do.

Anyway, in early 2004 I had my lumpectomy, followed by six months of chemo and 7 weeks of radiation. During my treatment, my sister tested positive for the BRCA1 gene. I knew that I would also probably test positive, but I decided not to have the test until I was almost finished withi my treatment. At the end of 2004, I tested positive for the BRCA1 Gene. It was very devastating even though I was expecting it. I have a 10 year (7yrs old at the time) daughter and also a son who I am very worried about because of this.

Fortunately I have a wonderful husband who wanted me to get everything possible done that I could to prevent any cancer coming back. In February 2005 I first had a complete histerectomy, since this gene can also cause ovarion cancer. A few months later, May, 2005 I had a complete mastectomy with reconstruction at the same time and in August of 2006 I had a minor readjustment to my implants.

Now it is already the middle of 2008 and I am doing wonderful. I feel good and knock on wood I am cancer free. I plan on being here to watch my kids grow up and their kids grow up. If down the road any cancer comes back I will have no regrets that I did not do everything possible that I could to stop it. I plan on being here for a very long time. I hope this info helps. Good Luck.

outnumbered · October 2008

I have absolutely no history of breast cancer that I know of. I was diagnosed June 24 this year with BC and because I am only 40 and I am askenazi jewish background I was tested. Well as it turned out I was BRCA1 positive. I was told that I have a small number of women in my family so that could be why there is no history. My Mother has been tested and we are waiting for the results. My guess is that it will come back negative, My father is an only child, and his father was an only child. I am thinking that would explain the lack of a family history.

I had already decided on a bilateral mastectomy because I could not see going thru MRIs every 6 months waiting for a recurrence. Once I got my BRCA results, I felt secure in my decision. Had the mastectomy in August and I have expanders. I expect my exchange for silicone implants in Novemeber or December. No nodes, so no chemo is expected (I get my final 2nd opinion on that on Tuesday)

Now I am faced with a decision regarding my ovaries. Initially, I though, no brainer. I have 3 kids, I dont want anymore, why would I want to risk ovarian cancer? Well I have been researching and now I am petrified. I already have premenopausal osteoporosis. I have a strong family history of cardio vascular issues/death, and I have already been told no hormone replacement for me because of the BC (even tho triple neg).

I am also full of fear for my daughter. I have boys too and if affects them, but more so my daughter. She is 12. My husband jokes that both his girls are getting breasts. I know we won't test her (or the boys) for the BRCA mutation until they are in their leter teens, or early 20's. There was a special on PBS last evening on BRCA. I could only watch 10 minutes of it tho.

I do not know what I will decide. I will just pray that the answer comes.

smiedf · February 2010

I understand how you must feel. I had my bilateral mastectomies with reconstruction, then the prophylactic total hyst. I believe strongly that it will save my life!!! I do m, and like anyone would wonder if I did the right thing. I am yound and miss my ovaries. Early bone loss, surgical and chemo induced menopause really stinks. I just know how horrible it would be if I were to ever again be told I have cancer. Ovarian cancer is so hard to detect early. Regret is a hard thing to live with. I just pray that you will find your way and peace of mind. My daughter was tested and carries the gene from me as well. Seems like you just do all you can and know in your heart it is for the best. I am a nurse and have been doing some research with some docs, and on my own regarding estrogen replacement. Mainly working with my ob/gyn oncologist. Studies have shown that low dose estrogen only (not combo) in negative breast cancers would not increase our risk for new or recurrent breast cancersbe Have more details, but for now still investigating, but seriously considering due to my age. Obviously will not do anything to jeopardize or undo all the surgical prevention I have already gone through. Its a tough choice for all of us, all the way around. Good luck.

LISAMG · February 2010

Rubybaby,

I am so sorry you have a reason for being here, but you will find lots of support. I also STRONGLY recommend you seek assistance from the only organization available for hereditary BC/OVCA , www.facingourrisk.org , as previously mentioned by others. Visit the messageboards where you will meet many women in your shoes, both previvors and survivors. Explore the articles/journal forum for lots of up-to-date research findings. We also have a local NYC Outreach support group with fabulous coordinators who can provide contacts for you and regular meetings/events. I can also point you to several studies with TNBC.

There is much we do not know about basal or triple negative Breast cancers. However, with young women this is often very aggressive with high rates for recurrence and/or a new primary, especially with BRCA 1 carriers. Your surgeon seems very proactive & may have your best interest in mind, especially knowing you had a sister with early age onset aggressive BC too. Any other BC/OVCA in your family? Have you spoken with a certified genetic counselor about your results?? They are the best professionals available to you for guidance. Gather all the facts/opinions and decide what is best for you. I also have some physician recommendations and/or genetic counselors in NYC if you like, both for hereditary breast and ovarian care. Send me a PM anytime and I would be happy to share my experiences with you. Deep breaths, we are here for you!

Hugs,

Lisa

BRCA1 Positive (Triple Negative)

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