Anyone BRCA1+ and TNBC and did NOT get BMX?

HappyDay17

Hi all - my mom was diagnosed with TNBC (stage 1, 1.8 cm, no lymph node involvement) in August of last year at age 65.  At the time of her lumpectomy in her right breast (8/30/13) we didn't know her BRCA status.  Post-surgery, we got back the results, which surprised all of her doctors, that she was BRCA1+.  She recently finished chemo (CMF, 8 treatments, three weeks apart) and is currently trying to decide whether to proceed with radiation therapy on her right breast or just get a bilateral mastecomy.  Her risk of recurrence in either breast right now is 40% and if she decides to have RT on the right breast, it would be reduced by an uncertain percentage (since all the reliable studies on radiation therapy don't have targeted data on TNBC populations) and her left breast risk would remain at 40%.  Is there anyone out there who is BRCA1+ and TNBC and did NOT do a BMX?  The more we read about radiation therapy and the potential for error, etc., the more my mom is leaning towards a BMX, despite her relatively advanced age.

Thanks everyone for reading and thanks in advance for your thoughts/feedback.

BayouBabe

You might want to place this post on the FORCE website as well.  www.facingourrisk.org  Good luck in your search for info.

HappyDay17

Thanks BayouBabe, I just posted on FORCE.  

momof2doxies

HappyDay…Glad you are being an informed source and support for your mom. Last August, 2013 I was diagnosed with a second primary tumor in my right breast. This means that it was the second diagnosis of breast cancer (first was August 2012), and the tumor was completely different. I was tested for BRAC 1&2 and found negative. I elected a double mastectomy and I am glad I did. Here are my reasons…1) I had already had cancer in both breasts 2) radiation has to be given if there is only a lumpectomy and radiation does do damage to the skin…it also is a one time only thing, you cannot receive radiation again to that area 3) radiation often causes too much damage to the skin that would allow for gel implants, if a mastectomy reconstruction is desired.

I had a double mastectomy and had tissue expanders put in…then after a few weeks of saline fills, I went back in for the exchange. The TE were removed and the implants placed. I had absolutely no pain or discomfort when the implants were put in and minimal discomfort from the mastectomy. If your mom goes with a mastectomy and reconstruction, she gets the skills of a plastic surgeon…and believe me the PS leaves minimal scars.

In my opinion, your mom has conquered the worst part…chemo. Hope I have helped, without being pushy. I will be 61 this year and am looking forward to not being diagnosed with BC again for my birthday. Best wishes to you mom.

HappyDay17

Thank you very much, momof2doxies, for sharing and for your support.  Your email was very informative and helpful.

It's great that you didn't have any discomfort w/your reconstruction.  I've heard many reports of women feeling very cold with implants but it sounds like you didn't have that at all?

Best,

HappyDay

theatregal

I was diagnosed with TNBC in April 2013.Between TNBC and being half Ashkenazi Jew I had genetic testing and found out I am BRCA 1+. The tumor was only 15 mm and stage 0-1, but with TNBC, you are grade 3. I received my first round of dose dense cytoxin and taxotere about a week later. Within a week I was dying in the hospital with double pneumonia.  They were sure they were going to lose me. I remember nothing except the most bone wrenching pain that I have ever been through and two weeks of hallucinations. I still have terrible side effects almost a year later from the chemo.  It seems I'm allergic.  The Oncologist said no more Chemo, even if the cancer decides to pay another visit. Once they were sure I wasn't going to lose all ability to breathe and become unconscious again, I had a lumpectomy and one lymph node biopsied.  It took them 3 hours that fine August day to find where the tumor had been. They finally found the clip that the pathologist had placed near the tumor after the first biopsy. The cancer was gone and my lymph node was clear. I told my Doctors that if they did anything else to me, that they probably would kill me, so I passed on the radiation and they said groovy. The hospital already knows I have a slam dunk malpractice suit just waiting to happen, but I feel so incredibly awful almost a year out, I doubt I have the energy to bother. The staff overdosed me on pain killers and other meds my first night there. I've never been to the hospital except to be born, give birth, and visit people who get sick. I guess since I was in perfect health for 55 years, I had to really make an impression my first time at bat.

I always land on my feet......Hopefully my luck will hold.  Skip radiation!

Best of luck to your Mom!

HappyDay17

Dear All,

Thank you again for your advice and support.  I wanted to update everyone on my mom.  She decided to do a BMX and BSO in the same surgery and think about reconstruction later (leaning toward not having any reconstruction).  She had surgery last week.  Doctors said surgeries went smoothly but she ended up having awful purple bruising all down her right side (where she had a lumpectomy).  The bruise still seems to be spreading but they say this is to be expected due to gravity.  The shocker today is that the pathology reports came back and they found an 8 mm triple negative in her right breast even though her mammograms and ultrasounds taken about a month ago had come out totally clean.  Apparently this new tumor was located very near the original lumpectomy incision site.  The clean margins from that surgery were 2 mm so this was a real shock for us.  We can't tell whether this is an independently new recurrence or whether this is an outgrowth from microscopic cancer cells that somehow got left behind from the lumpectomy that she had last August.  Also not sure if this means that her CMF treatment was a total waste of time and grief.  We now need to meet with the oncologist again to determine next steps...if anyone has any insight on recurrences of TNBC in such a short time frame and best next steps, I am all ears.

Thanks and good luck to you all.

HD17

Farmgal

Glad your Mom made that decision. Had my first occurrence triple negative, BRCA-1, almost three years ago, good results was ready to be declared almost cured, when it reared it's ugly head again. This time stage IV to liver and bone with little forewarning. Very aggressive!!  I went light on the surgery and just had left breast and ten lymph nodes, ovaries later. In hind site I wish I had said take anything you want! Our vanity and our dislike of surgery is not a good enough reason to warrant a death sentence. So far I took doses of doxorubicin and and have continued with navelbine with good results. I know this is temporary so just preparing for the next step. Kudos to your Mom for being so brave!

theatregal

See my answer above. I am BRCA+ and had TNBC.  I had a 15 mm. tumor in my left breast in April 2013. I was supposed to have 6-8 rounds of dose dense Cytoxan and Taxotere before surgery. Within days of my first and only dose, I was taken by ambulance with 105 degree fever, double pneumonia, and unbearable pain as if someone was taking a sledgehammer to my legs, spine, and arms.  It also felt as if someone was pulling out my ribs in the front and back of my body with pliers. Plus, I was hallucinating for 2 weeks and so they had to tie me to the bed in an ice blanket to keep me from taking out the nurses and doctors AND to keep me from pulling everything in and on my body out and off my body. I stopped breathing and died twice. They had to resuscitate me twice and told my friends that I most likely wasn't leaving the hospital, except in a box. I survived. Three months later I had a lumpectomy and a lymph node biopsy. Node and tissue from lumpectomy were clear with clear 10 mm margins.  The research says that TNBC rarely returns to the original site where it began. Why expose myself to radiation and MORE side effects, if the chances of it returning to where it originally was are slim?

My side effects from that ONE dose of Chemo are terrible and are keeping me from doing most of the things I love.  I am completely alone and rarely get out of my house because of pain I am unable to drive.  I cannot to walk for more than 10 minutes without excruciating pain.  I have severe peripheral neuropathy and ridiculous Chemo Brain. I used to be extremely active, social. I was a fitness trainer and Personal Chef.  I was very involved in community theater as a dancer, actress, and singer.  I love to walk, hike, weight train, entertain, camp, garden, etc. So far, I can do a little gardening.  The doctors don't know when or if the side effects from the chemo will subside. All of my friends and family say it's too disturbing to see me like this, so I am alone most of the time. The nurses in the hospital warned me that this is all too common.

 I had many x-rays, CT scans, etc. several years before I was diagnosed with TNBC, because I had experimental Spinal Surgery for Severe Spinal Stenosis. For all I know that may have been what turned on the mutation that knocked out my BRCA 1 genes causing them to not do their job....suppress cancer. So, I opted to skip radiation and my Oncologist and surgeon completely support my decision.  There is no RULE or LAW that says one must have radiation after a lumpectomy! They just discovered the BRCA 1 and 2 genes and the most common mutations in the early 1990s. They learn new things about them all of the time. We get one BRCA1 and one BRCA 2 gene from each parent. My Dad was Ashkenazi Jewish and carried a BRCA 1 mutation which he passed down to me.  Something else knocked out the 2 that I received from Mom. Everyone's circumstances are different. Everyone has to do their research, work with their doctor and make the best decisions for themselves about their treatment that they can.

Good Luck!