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!
