Wednesday, May 9, 2012

Managing your diagnosis

I was talking with a friend last week. She was diagnosed with breast cancer about the same time I was and was scheduled for the same sort of treatment. But she was allergic to chemo and never completed more than her first dose but she did have radiation.

A month or so ago she was throwing up blood and all sorts of nasty other issues. After several trips to the ER and numerous medical (mis)adventures, it turns out she has an ulcer which was irritating her her yet undiscovered stomach cancer causing it to bleed. She then had a bone scan and found all kinds of shadows and was then going to have some more medical (mis)adventures to find out what spread where - how fun. Now she is in that wonderful land of 'holy crap-more-cancer-what-do-we-do-I-need-staging-and-a-treatment-protocol'.

Next week the rest of us who were in the same 'introduction to breast cancer support group' are getting together to find out what's going on before she leaves for her two week vacation in Bermuda (and we are all jealous about that part). When she returns from vacation she gets to start whatever chemo and other fun stuff that is lined up.

She is facing a not very fun diagnosis with a smile. But we were talking about what she wants to know from her doctors and when. She has told her doctors she doesn't want to be told anything unless her daughter is there. We also talked about how this is the time to take charge and tell the doctors what to tell her and what not to.She gets to be the one to tell her doctors what they can tell her and when.

We were educated by our first diagnoses and now we can tell our doctors how we are co-managing our treatment instead of the doctor getting to take the single lead. It is unfortunate that we get to this state but once we enter that oncology department the second time, we are going to be in charge.

1 comment:

Nancy's Point said...

Yes, it's terribly sad to have to re-enter the oncology department for another round. I'm sorry about your friend. You're so right, we need to be in charge as much as possible. This is the topic of my latest post. It's intimidating sometimes, but necessary.