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