DOUBLE MASTECTOMY or NOT?

Along with this CDH-1 mutation giving me an 83% chance of diffuse gastric cancer, it also gives me a 42% chance of lobular breast cancer.  (the same cancer my maternal grandmother had)

I had my mammogram and ultrasound yesterday afternoon.  All turned out well.  The lymph node that was enlarged at my MRI and we biopsied that came back as nothing is STILL enlarged, but doesn’t seem like it has grown at all.  We are just going to keep our eye on it since it hasn’t really changed.  I go back in May for my next MRI.

Just like with the stomach, I do have the option to do a prophylactic double mastectomy.  I’m just not sure I want to or am ready to go down that road.  I have a TON more research to do before I even decide.  If I choose to NOT do that, I always have the option of monitoring with the mammogram and MRI every 6 months.   I feel like every time I’m in the doctors office and this gets brought up, I become emotional.  I know mind wise, I am definitely not ready for this.  Maybe in time I will be just like I was with my stomach.  We will see!  I did get a ton of my questions answered which surely helped.

I asked about a preventative hormone blocking mediation which can reduce the risk of breast cancer.  My doctor said that there is something I could take to do this.  HOWEVER, because it is a hormone blocker, it would send me into menopause.  She wasn’t sure that at age 31, she wanted me to go that route just yet.  If I didn’t mind that piece of it, she said we could.  Nah…I think I’m good.

With stomach cancer, if I waited until/if I got it, I only had a 4% chance of survival.  So, I asked if I waited until/if I got breast cancer, what would my chance of survival be.  I didn’t get a definitive percentage, but was told that since I am being screened every 6 months, if they found something, they could act quickly and usually it would still be in the early stages just because of how often I would be in for screenings.  My doctor, also, stated that even if I have a double mastectomy, it doesn’t completely change my fate.  I would still have a 4% chance of breast cancer WITH the mastectomy if I ditched my nipples and a 5% chance if I did nipple sparing surgery.  So, it goes from 42% down to 5%ish…is that enough for me to do it when I can do screenings every 6 months?  That’s the question I need to think on.

Just like with our family’s type of stomach cancer, lobular breast cancer has signet ring cells.  So, I asked if I would be able to feel a lump or anything IF I ended up getting it since in the stomach it doesn’t form a mass.  She said unlike other breast cancer, this one forms linear and not necessarily mass like.  However, she said I would still be able to feel a lump.  At least I can be on top of it that way!

Last question I had was in regards to being seen by a breast doctor here in Bismarck or Mayo.  She said either would be fine and up to me.  If I decided to have nipple sparing surgery, she would for sure send me to Mayo as they are better at that kind of stuff there.  If not, I could surely do it here.  Knowing the experience I have had at Mayo and the AMAZING doctors that are down there, it’s a no brainer I’d go there.  I’m just not 100% sure WHAT I want to do.  I still have another 3 months before I can do any kind of surgery, anyway, due to me having to be 6 months post total gastrectomy before any other surgery can occur.  I doubt in the next 3 months I’ll have decided even, BUT…at least I got some REALLY good information yesterday for me to ponder!