Lobular breast cancer and the CDH1
mutation......still not sure WHAT to do. Hear me out....and I'm open
to thoughts and/or opinions....
With this crazy mutation I have, it
increases my risk of lobular breast cancer by about 50%. My breast
surgeon said that there are two main types of breast cancer- ductile
breast cancer and lobular breast cancer. He said of the two, he would
NEVER want lobular as it's fast moving/aggressive and hard to find
(similar to hereditary diffuse gastric cancer). Unlike the stomach,
if I choose to have a prophylactic double mastectomy, there is still
a small chance of breast cancer. (With a total gastrectomy, you have
a 0% chance of stomach cancer after the surgery.) For most patients
who have a mastectomy, their risk changes to about 1-2%. Since the
mutation doesn't go away with a mastectomy, my odds would be a little
higher- about 3-9% chance even after surgery. Also, they suggest
that if you have a double mastectomy, you do non-nipple sparing
surgery. Keeping those nipples increases your risk even more and
often times, they die off after surgery and/or have no feeling and
are numb anyway. WITH that 3-9% risk, if you DO get lobular breast
cancer, it's often times too late and has already attached itself to
another organ or place in the body. He did say that it is much
easier to detect breast cancer when you keep your breasts than with
little to no breast tissue left after a double mastectomy. My
surgeon, also, said that in his 11 years of doing these surgeries
(and he does anywhere from 80-100/year), he has NEVER done a
prophylactic double mastectomy and had a patient end up getting
cancer and of the ones who have had a mastectomy due to cancer, less
than a handful have had a re-occurrence of breast cancer. If I
choose to go the route of a double mastectomy, I wouldn't have to
ever do another MRI or mammogram, again- also, no more paying my
deductible and coinsurance every year for those scans. A mammogram
detects lobular breast cancer about 75-80% of the time and an MRI
detects it 90-95% of the time.
I have NOT met with a plastic surgeon,
yet, but plan to go and get their thoughts, opinions, and options.
What I can say is that I thought
meeting with the breast surgeon would give me this big ah-ha moment
and much more clarity. It did the complete opposite!!! I may have
to, literally, write down my list of pros and cons!!! This may wait
until AFTER I see the plastic surgeon, though, as I think that will
alter my thoughts quite a bit, too! Ugh
