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Lumpectomy/rads or bilateral mastectomy BRCA1 mutation positive - so torn

jthomps24
Posts: 1
Joined: Mar 2014

Hello everyone, this is my first time on this discussion board, but considering I have been going over this decision for a week, additional perspectives would be great right now. 

I was diagnosed at 38 years old with TNBC 0/0 lymph nodes positive (good) but with BRCA1 gene mutation (bad).  I found out I had cancer when I was pregnant and currently have a healthy 5 month old baby girl.  Luckily I am a professor and have been on medical leave and I don't have to return to work until late August.  My mother is willing to help me out with the baby either way.  But I am sooooo torn.  Part of me wants to have the lumpectomy/radiation for now and make sure this cancer is taken care of with no recurrences elsewhere in the body that I have to do deal with.  I also am not ready for the extreme measure of cutting off my breasts and reconstruction and the recovery time it takes ( I would use my body tissue for reconstruction if I went the bilateral mastectomy route).  

But the BRCA1 gene mutation is throwing a monkey wrench in everything.  I would easily choose a lumpectomy with rads in a heartbeat if it wasn't for the bRCA1 gene mutation.  With the mutation gene, my oncologist recommends double mastectomy because of the 50% chance cancer can come back in my lifetime since I am so young.  But there is the 50% chance it won't come back.  I don't mind the surveillance because my mind doesn't think it will come back again, but I don't want to take the chance since I have two children that I want to see grow up.  I should have told my oncologist about a study I just read that showed survival rates among breast cancer survivors and their development of contralateral breast cancer depending on whether they had a unilateral or bilateral mastectomy. The thing is, there were fewer women who had bilateral mastectomies who developed breast cancer again, but some DID develop breast cancer again after 10-20 years of followup.  

My husband is as torn as I am (he is a butt man) so all fat would come from post-pregnancy tummy.  

Reading this board has helped me decide one thing.  Since I am in Chicago I should take advantage of the great cancer centers here.  I will get second opinions at Northwestern University and Univ of Chicago, and the Block Cancer Center.  I'm currently at the UIC CAncer Center and they go by what the latest cancer research suggests.  

Please share your stories and experiences with me. 

Thank you in advance.

Beth J
Posts: 2
Joined: Mar 2014

I just had a bilateral mastectomy for a DCIS in one breast. I am BRCA negative and I was lucky that my 6cm DCIS was truly non-invasive. I had no choice about the single mastectomy as about 1/4 of my breast was involved, but I opted for the double for a few reasons. My cancer was negative for hormone receptors and they didn't test the HER2 because it was non-invasive. I had a Comedo Carcinoma that was very aggressive (loved the all CAPS "unfavorable" on my pathology report) and also I had Paget's Disease of the nipple. 14% of women have a 2nd primary cancer over 25 years. Women who had the cancer factors I had have an even higher risk. My mother has had 2 primary cancers in 8 years. The fact that you had cancer once increases your risk. I am 45 and I figure in the next 30 years my risk for a 2nd cancer is pretty good and I would frankly like to only go through this once. I realize the mastectomy only reduces risk, but there are other things like diet and exercise that can lower risk further so that is my plan. Before my surgery (on Valentine's Day 2014, great plan that) I thought I would do reconstruction but now post surgery I am not sure. It's not so bad and I find that it doesn't really bother me. I go out without prosthetics and figure what other peoplethink of my lack of breasts is their problem. I was a big girl before (DD) so this is abig change for me. Ultimately I decided that my breasts for my life was a fair exchange. Wishing you the best of luck - it is a tough decision - I found that after the surgery was done it was much easier to adjust. 

 

Best, 

Beth

joannstar
Posts: 347
Joined: Nov 2010

I was diagnosed 8/2010, Stage 1, Grade 3, no nodes (at age 57). I had 2 lumpectomies (2nd to get clean margin), 6 rounds of T/C and 33 rads. Because of TN, onc strongly suggested the Chemo. Got tested for the BRCA gene after I completed treatment because the insurance finally said they would pay. Tested negative.  He had told me before test results came back, that if I was positive, we would discuss a double mastectomy and hysterectomy.

Now onc wants me to test again because they've identified another gene (3rd one in the same family). I'll see if insurance will cover.

Hard decision...good luck.

Hugs,

JoAnn

 

 

 

 

tufi000's picture
tufi000
Posts: 437
Joined: Jun 2005

My niece by marriage was 38 when DX for BC and had a double mastectomy and the rest.  After they found she had BRCA gene issue from her dad she also went for the hysterectomy. She didn't think twice about it.  Has a wonderful family and wanted to see them grown.

Carolyn08
Posts: 1
Joined: Mar 2014

My opinion is - I was diagonosed with TNBC at 40.  Lumpetomy is first thing offered and sound really great with getting on with life, but I didnt want to do radiation.  I decided to do my own research.  What I found after reading facts and tons of discussion room writings was the women who had lumpetomies seem to have recurrence time and time again.  Therefore I choose a double mastectomy.  Doctors have to present what the medical world indicates not always what they really believe or would do themselves.

corey50
Posts: 73
Joined: Feb 2009

that women with lumpectomies and radiation have more recurrences. As a matter of fact, in certain instances, and everybodies situation is different (and certainly being BRCA positive is a special situation), lumpectomy with radiation has just as good an outcome as a mastectomy. Also, I would not make any decisions or base opinions by what you read on "discussion room writings" because unfortunately people end up posting only the bad outcomes.

RozHopkins
Posts: 462
Joined: Dec 2010

Very hard decision to make.

 

i really didn't have an option as had Infiltrating Lobular in both sides, this one usually is in both and not caught with mammos (I had one every year for 12 years).  So double masectomy.  To be honest I am glad I did knowing what I now know.  I may be cynical but I feel better taking them both away.  You still can have a return of cancer it isn't always the end of it sadly.  Was BRCA negative but do not trust the results as knowledge of gene mutations is changing all the time and my mum had three different types of breast cancer then on to lung.

 

it won't be if you have a little one to look after.  You will need help.  Good luck with your decision. 

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

My history - I am now 49 years old:

2000 - dx TNBC 0/0 nodes L breast at the age of 35 had lumpectomy & chemoradiotherapy - no genetic test done but my mother had ovca same time (she died in 2001) 

2010 - dx ovca stage 11c grade 2 (bilateral) radical hysterectomy etc etc 18 weeks dose dense taxol/carbo - genetic testing done BRCA1

following this my doc moved my breast check ups from yearly to 6 monthly & I started to seriously think about prophylactic mastectomy. However DCIS picked up on MRI L breast (behind nipple & not palpable or visible on mammo or o/sound!) in Sept 2013 so underwent bilateral mastectomy with DIEP flap recon in Oct 2013.  I now have a washboard flat stomach and lovely pert boobies! The surgery was nowhere near as horrendous as I thought and I had a quick recovery - driving after 2 1/2 weeks back at work after 3.     Minimal post op pain & good scars - will have nipple recon etc at a later date cos I'm sick of the site of docs & hospitals for now!! 

Hope this has been informative for you. 

 

Michelle

corey50
Posts: 73
Joined: Feb 2009

I am truly sorry that you have to make this unbearably hard decision, but you are an intelligent person who has done her homework and I'm sure you will make the decision that is right for you and your family. My situation is different from yours, I was dx with er/pr+ stage 1 IDC, so had a lumpectomy, with chemo and radiation. I have not had the genetic testing.

If you want my opinion I would have the lumpectomy now to at least remove the cancer they know is there and give yourself some time to think about the option of a future mastectomy (from what I understand, and don't take my word for it, you can even have radiation now and still have a mastectomy in the future). I know this would be two surgeries and of course going thru rads when if you had the mastectomy you wouldn't have to, but if you're truly on the fence about what to do, at least it gives you time to think. Get a second or even a third opinion from one of the hospitals that you mentioned. You didn't mention if you've had any other imaging testing like a breast MRI, this usually will help you and your doctor make a decision, based on if anything else is found.

Good luck to you. And congratulations on your baby!

birdwhisperer
Posts: 1
Joined: May 2014

Hi jhomps24 -

The bottom line is, it is a personal decision - something you will make based on your diagnosis and circumstances. I wish that science and medicine could tell us more about which specific mutations in the BRCA universe tend to have better outcomes, etc. 

Having a breast cancer diagnosis was shocking enough (mine was discovered through imaging). I was scheduled to have a lumpectomy; about a week and a half before surgery, I was told I was BRCA1 positive.  Not what I was expecting.  I had waited over a month and a half from diagnosis to have surgery (partly due to second opinion, fear and, being in the middle of the summer, doctors, etc. on vacation), and just could not switch gears and do a double mastectomy at that time.   I hope I do not have to go down that road.  I was diagnosed with early, aggressive, genetic cancer - 1a; triple negative.  I decided to stay with my original plan and had a lumpectomy, chemo and radiation.  I am currently happy just to be.  (Because of the triple negative cancer, I was told I needed to have chemo whether or not I had a double mastectomy.)  

My first six month follow up is about a month away (you have to wait five or six months from the end of radiation) so we will see how things look then.  I am actually a year past when I had my first suspicious mamo, and closing in on a year since my official diagnosis.  I was so freaked out when the double mastectomy conversation came up, that I cried in a variety of doctors' offices.  The decision is very personal.  A female oncologist ran through all of the statistics with me; she said, regarding a double mastectomy, I could always make that decision later; it was better to move forward and treat the current cancer vs. waiting because I could not make the decision.  She told me if I went with the lumpectomy, etc. I have to assume the risk, be as informed as possible, and keep up with screening.  On a positive note - I swim with four women (three have had cancer; two have had breast cancer).  One of them is BRCA1 positive, 17 years out from diagnosis following a lumpectomy, chemo and raditation; she has not had a recurrance or second primary.  I hope things go as well for me.  Again, these decisions are very personal.  I wish you the best of luck and peace of mind with whatever you decide.   

 

 

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