I still have not managed to meet another person online or otherwise with Apocrine breast cancer, but the really good news is that I am here without recurrence 3 years after diagnosis. The Apocrine cancer was also Triple Negative. With Triple Negative the chances of recurrence drop to that of other breast cancers after about 3 years. As there are few statistics on Apocrine breast cancer I will be posting every time I have a mammo. Hopefully this will give someone else with Apocrine encouragement. I prefer to think of having had an unusual breast cancer rather than a rare one as it sounds a lot less alarming.
Yep, it's a lonely place when you have a rare breast cancer. Off you go to Google it. Diagnosis: better, the same, worse. Take your pick.The reason for that is that when there are so few cases the statistics are based on the very few cases that are seen at hospitals and these can be over a number of years. I found myself in less of a lonely place by making contact with rare cancer groups even if they are based abroad.
A rare cancer can be an alarming diagnosis, but I'm still here with no recurrence and its been over 18 months despite being told "it's not a good cancer" (I'm triple negative as well).
I had expected to have made contact with someone in the world, but think the benign breast condition Apocrine Metaplasia and Apocrine Breast Cancer have been clerically statistically merged. It may be that some rare breast cancer patients don't naturally go online. The worse situation could be that those with rare breast cancers just give up - don't, we're out there.