mastectomy or lumpectomy?

Fari - neither my sister nor I were told about those tests either until after the fact. Our mother had BC in her late 60s and that was in the late 1980s. She had a MX. She had decided ahead of time to have one once it was confirmed she had BC. No lymph node involvement. However, that was a long time ago and there weren't a lot of options available like there are now. My sister was asked after her MX if she wanted to take the test. She doesn't have any children but there are a number of nieces and nephews. She said no. I wasn't asked I just heard about the test. I have 3 granddaughters and 1 step granddaughter. Naturally 3 of them are high risk because of me. Not sure whether my daughter will have the test or not or her daughters.

Your Dr should have told you. We need to be armed with all the information available so we can choose what's best for us. It's our life not their's.

Given you lost your mother because of BC, and I'm so sorry about that, I think I would have the test. My mom died 10 years ago but not from BC. At least you would know. Had that information been available to me beforehand I might have opted for a MX but instead chose a lumpectomy because I had IDC Stage 1a, Grade 1 and my tumor was small. I will be 5 years out in August; my sister is a year behind me. She had ILC. She had one breast removed.

However, we also all have to be our own advocates. Don't rely solely on what the Dr tells you. We all had to learn to do our own homework. This forum is very helpful. It's been my lifeline from the onset.

Good luck and keep the faith and keep us posted.

Diane

There is a lot, a LOT of cancer on both sides of my family. I had two different tests, one for the more common gene mutations like BRCA 1 & BRCA 2, and the other was a 32 gene panel which included many of the very rare genetic mutations. I turned up positive for not one, but TWO rare gene mutations. As a result I ended up with bilateral mastectomies instead of my lumpectomy, as had been planned.

I'm really glad that I had the testing done. I have a 22 year old daughter and a 29 year old son. They were both tested for the gene mutations that I have. My son was negative for both, but my daughter was positive for both. Obviously, this was devastating for me, as much as it was for her. My daughter has said on several occasions that she feels doomed. This makes me very sad. But as I told her, she is fortunate to know. Had I known before I had breast cancer I might have made different decisions and I certainly would have had better surveillance. I am taking her to the breast doctor next week so they can come up with a plan for following her breast health

Francis, I started with lumpectomy because my cancer was small and hormone receptive. Only after the lumpectomy did we find out that I was actually PR negative which is more aggressive cancer. About that same time we found out about the gene mutations. At that point, my MO strongly recommended that I have chemotherapy and bilateral mastectomies due to the high risk of recurrence. When she sent me to the GYN the decision was made that I also need a total hysterectomy, due to family history and the gene mutations. Since that is preventative, I'll probably have that done in the late fall.

Had I known all this prior to the initial LX I would have made the decIson for BMX right out of the gate. But it is what it is. I have not been happy with this BMX but I am satisfied that I have done absolutely everything to ward off recurrence.

Fari, you'd have to ask your MO whether waiting several months is a good idea in your case. By the time we found out my gene mutations, my lumpectomy and re-excision were behind me. I *could* have had the BMX right after that, but I needed to start chemo and the MO wasn't willing to wait until I was all healed up from the BMX to start that business. Indeed, a good idea, because it's been 15 WEEKS and the wound is still not completely healed. So, I had chemo from Oct-Dec 2015, then the BMX in Feb 2016. The MO felt that since I had the BMX, I would not need radiation, so there's some small comfort.

Fari95,

If your lymph nodes were clear they will not be removed on purpose. During a BMX though, some nodes come out with the breast tissue because they are scattered throughout the tissue.I had large breasts, and 10 nodes were removed during my BMX. All nodes that are removed (even "accidentally") will be tested; mine were all negative thank goodness.

Edited for typo.