Lumpectomy vs mastectomy/ BRCA gene

Scaredmama35

Lumpectomy vs mastectomy/ BRCA gene

Scaredmama35

Hello all! I am newly diagnosed with stage 1 grade 1 BC. I am currently set to have a lumpectomy on Aug. 8th. I should receive tomorrow if I am ER pos/ HER neg... Which my dr believes I will be. However today I met with a genetic counselor and did my blood sample to find out if I have the BRCA 1/2 gene mutation. ( I am 35 with only a history of one aunt with breast cancer) we decided to go ahead and look at all the gene mutations... So I guess I ended up doing a " panel" of gene mutation studies. I apologize bc I don't know the actual name of the test, bc I was just diagnosed on Monday and I tend to just go through periods of blanking out when these dr's are talking to me! Thank God my husband comes with me. 

Anyway I guess I have some questions that I am wondering if anyone has experience with. Say this comes back positive for the BRCA gene mutation, I don't know if I am ready to get a double mastectomy right this second in my life. I have three young kids, I makes living by babysitting teachers kids... So I start work again end if August. My husband is also a teacher. Crazy how I am handed this horrible diagnosis and all I truly worry about is money. If I don't work, I don't get paid. So, although my goal is that this comes back negative and I can just have the lumpectomy, I have to prepare myself that it might not and then I have to think about a mastectomy that means a longer recovery time. 

So here I sit and 1000 things are running through my mind. In my mind I am thinking if this comes back positive that I still do the lumpectomy and radiation if needed and then keep getting checked regularly and having a mastectomy maybe at the end of next  school year. Do people do this? Am I getting myself all worked up for something I don't even know yet? Ugh... So many things are thrown at you at the very beginning that I feel so overwhelmed! Thank you in advance! 

lintrollerderby

Hi and welcome. I was one of the people who responded to you yesterday and gave you the best case scenario of your tumor phenotype. 

If you're positive for a mutation, you don't have to have a mastectomy yet or at all. But, if you do think you'd want a mastectomy with reconstruction in the future, radiation will make that more difficult. Not impossible, but it gives you a higher rate of implant failure, or capsular contracture. 

Know that having a BRCA mutation is very rare. Obviously, it can and does happen to women (I am one), but just keep in mind that your chances are very good to not have one. The earlier-onset breast cancers tend (but not always, there are no certainties) to be BRCA1 related. And BRCA1 cancers are 75-80% of the time Triple Negative. So, your tumor pathology (if it is ER+/PR+) gives you a better chance of not having a BRCA1 mutation. However, BRCA2 is more associated with hormone-positive breast cancer. The good news is BRCA2 is even more rare than BRCA1. It is estimated that only half of one percent (0.5%) of the American population have a BRCA1 mutation and a quarter of one percent (0.25%) have a BRCA2 mutation. Now, that means someone has to be in the small statistic, and it could be you. However, the odds are greatly in your favor that you were just unlucky and developed a sporadic case of breast cancer for an unknown reason.

IllinoisNative

I was 36 when I was diagnosed.  I tested positive for the BRCA 2 gene.  I opted for the lumpectomy, chemo, radiation route.  I did not want a mastectomy and I didn't need one.  The gene just tells you the likelihood of getting cancer.  You already have it.

I chose a lumpectomy for a variety of reasons...even with a mastectomy, I would have needed chemo, financial reasons, recovery time for healing is faster/easier, the fact that I would NEVER have feeling in my breasts with a mastectomy, a mastectomy vs lumpectomy/radiation have the same survival rates, and I viewed pictures of mastectomy reconstructions and was horrified.  I found out the goal of mastectomy was to get you looking normal IN clothes not out of them.

If I needed a mastectomy, I would have had it.  But with my tumor, grade, clean margins, stage, etc., I didn't need one.  It's a very personal decision.  Good luck.

lintrollerderby

IllinoisNative: I couldn't agree more that it's a very personal decision. Some women with BRCA mutations opt to never have risk-reducing surgeries, and that's perfectly ok. I have yet to do mine because I found out about my BRCA1 mutation after treatment ended. I will have both the BMX and the BSO, but I'm not mentally prepared yet for either. I was diagnosed in 2011 at age 34.

I want to clarify a couple of points from your post. And please understand that although it may appear from my post that I am pro-surgery, I am not. I am pro-whatever-the-individual-decides; however, I really wanted to put some info here for either you or other BRCA+ women who may read this in the future. Yes, you already had cancer, but it's not that your mastectomy was needed for that cancer diagnosis, it's that a BMX would significantly reduce (to approximately 5%, or less than the risk faced by non mutation carriers) of a future breast cancer. Those of us with mutations are at great risk of a second, unrelated breast cancer. So while both you and I were not in the position of needing mastectomy as treatment for our first (and hopefully only!) breast cancer diagnosis, mastectomy came up for you because of your mutation status. With regards to survival being the same for BMX as LX+Rads, that is true for non mutation carriers. It only applies to us BRCA mutation carriers ONLY as it relates to our first breast cancer diagnosis. BRCA mutation carriers treated with breast conserving therapy are at significant risk of death from a new primary breast cancer. One study shows a 48% reduction in death among BRCA carriers who chose BMX over breast conserving therapy (BCT). BRCA-related breast cancers are known to be swift-growing as most are Grade 3, even those that are not Triple Negative. The chances of getting a totally new (not a recurrence) breast cancer that emerges and spreads before being noticed is a major risk for BRCA+ women.

There is also some evidence that for unknown reasons, BRCA mutation carriers are more sensitive to radiation in a negative way than the average person. I declined rads against medical advice (before I knew about my BRCA status), because chemo was so difficult for me. After I learned I was positive, my whole team said I dodged a bullet with regards to the radiation making reconstruction more difficult, but mainly because radiation can lead to loss of heterozygosity in the wild-type (good copy) of our BRCA gene. We only have our good copy to perform DNA damage repair, and are thought to develop cancer when we lose heterozygosity of the good one. 

Lastly, many women have had BMX with a very nice cosmetic result. My daughter (who inherited my mutation) is one of them and I've seen it first-hand. 

If, knowing that BMX does increase survival in our population, one still chooses not to have one, that's perfectly ok. The same goes with knowing that the mastectomy was to address future cancers, not necessarily the one that began the process. I believe we each have to make our own decisions, but I'm a firm believer in making an informed decision with all of the info. 

Best of luck.