Mastectomy advice needed....

It's a very personal decision but I am also 43, Stage IIb, and triple positive but negative on any genetic components. I opted for BMX. Fortunately, my tumor was up near the axilla so they could do a total skin-sparing MX and I got to keep my nipples. The BS did make it very clear initially that she felt chemo, LX and rads would have been fine and BMX wasn't necessary but after I made my decision, she was very respectful of it.

So I did chemo and BMX and didn't need rads. It has given me comfort knowing that I've done everything I could to fight this beast and prevent its rerun. Now only time will tell.

Hope this helps!

Bekah

Hi edwsmom, you've already made your decision It's what your gut's been telling you. I once heard a dr say there are 2 kinds of women with BC ... those who just want both breasts gone and those who will fight to keep 'em.

But truly, you need to be sure. You need to find out what's out there for reconstruction options if you go that route or what life could be like with no breasts what-so-ever.

Should you choose to keep your breasts, what will monitoring be like? How often will you be checked? Can you deal with that?

I chose PBM when I was high risk. It turned out my cancer was found then. I know appearance-wise, I have a great rack. But I do miss the feeling (I can feel touch to the skin but not nipples). Once in a great while, I'll think, "I would do anything to have my breasts back," but then I see my son doing well in school and in sports. I see what I could very well have missed, and having natural boobies is nothing compared to seeing my son grow up.

Cancer is so cruel, but you can take the lead here. Whatever choice you make will be the absolute right one for you. You have the power

Best of luck!

edwsmom

Such a hard decision you are facing. I have shared my story on the Chemo thread. I think the concern I would have is the "unknown primary" Does your BS have a strategy as to getting clear margins on this? For example if you had a mastectomy they would analyze the whole breast? How would they find clear margins with a lumpectomy?

I am just not familiar with this kind of cancer in the breast. I also have PALB2 and the research is still developing as is the case with BRIP1. That being said you still are on the young side so that factors in as well.

I originally really wanted to save my breasts. I couldn't because my right breast was full of DCIS ..In surgery they found out I had two IDC tumors that did not show up on Mamograms or with a stereotactic biopsy. I did not have a MRI so I Can't say if that would have showed the IDC.

I think some MO's see a younger lady and tend to suggest a BMX and an OO because they want to be overcautious. It is a huge commitment and a lot to face. I very much considered doing Lupron for six months before deciding on an OO. There are many women that the side effects of Menopause are just too hard to to deal with and the Lupron is reversible. It doesn't prevent ovarian cancer though.

BMX vs uni and things I considered when I was facing this:

I think if your original BS has strong credentials and is committed to getting clean margins then she will understand your decision and allow/perform a BMX so please don't let that worry you. Both surgeons will honor your decision if they are professional as I am sure they are.

There has been an influx of women( especiallly young women choosing BMX) I think many breast surgeons are aware of that and it may just be hospital policy to discourage bilateral when unilateral is just fine.

I actually went with a BS in my cancer team and went outside of my team for a plastic surgeon. There was no hard feelings and they had worked together in the past and worked well together for my treatment. The Plastic Surgeon on my team did not do the nipple reconstruction that I wanted and also was only a year out of med school. that did not inspire me with confidence.

An important thing to ask everyone is radiation and reconstruction. Its important to get an idea what your timeline would be with node involvement. Also would you do implant surgery or wait until everything healed and radiation then start the process( both have merits). Then there is the whole question of doing other reconstruction options using your own body fat etc. You live in a large metro area so you have access to very skilled PS and a lot of options. Its hard to be in this position but I had a close BS friend remind me that I am the customer and I needed to be strong and advocate to get the best results for myself. She also told me that just because a surgeon says something can't be done doesn't mean it can't. It just means it is not their specialty.

If you do both at once it is easier to have both breasts match but the down side is you have very little sensation in your breasts and none in your new nipples. With only going on one side you would still have feeling in your other breast which may be very important to you. Also Many women really want to keep their breast. In my case I didn't want to remove one breast and have a large lump out of the other one. In the beginning If I had the choice I would have tried to save both breasts and my nipples.

Also I doubt the recovery is that different for a single vs a double Mastectomy but emotionally it might be very hard. I can say that I was pretty sad to see my chest with just lumps in it after surgery. I still miss my breasts. It is so hard to come to terms with. I have read there is an amazing tattoo expert for nipples in Baltimore. Lots of women here go there and maybe it isn't too far for you. I am on the other side of the country.

About the GENE unfortunately for me my MO feels they are 10-20 years from getting the data I would need to make the decision with all factors known. This is especially true for the OO. It is a stinky situation to be in.

It might be a good idea to record your doctors appts so you can go back over the information. It is so hard to remember everything. I use boldbeast recorder on my cell phone.

Sorry to throw so much information at you. I am looking back at having to make that decision and found it very hard. If you need someone to talk to on the phone and share your ideas with and just listen or hear what their experience is then please pm me. I can send you my phone number.

Whatever you decide will be a good decision. You are just trying to think things through and understand what your choices are. Your doctors and surgeons will honor and respect that or they are not the right doctors.

I do understand how hard it is to have doctors disagree on treatment. I was just dumbfounded when the gyno MO recommended that I have an OO. It was largely because of the GENE not the breast cancer. Another Gyno MO had a different opinion that we don't know enough about PALB2 yet. Then my BC MO was mixed. He very much wanted to put me on Arimidex but was ok with Lupron or OO. These are decisions are very very tough.