Patient Advocacy Project

[Becky]

First I will start out that all is well. I had a regular follow up with my radiation onc today (not the greatest of ideas when it is your birthday but... it got me out of work early!!!)

Anyway, I know most of you remember about 2-3 months back I had a lump in my other breast that ended up being a cyst. My left breast had dcis diagnosed when I was diagnosed with my cancer. The only reason the "girls" are still around is that I had a duel "lumpectomy - biopsy" and had clean margins so once it was done, I was done. When the time came for radiation, naturally the invasive side was radiated but the small highly hormone positive/her2 negative dcis was not. My radiation onc, onc and a consult from the Univ of PA said that wide excision, small (3mm) low grade, no necrosis dcis didn't need it. However, after I began getting more and more involved with my care, I found study after study saying that no dcis is too small for radiation. I could go on and on but I won't. What's done is done for me. I went over the cyst thing with the radiation onc and he freaked - he said "it didn't have any treatment except excision". I didn't tell him that today was my birthday but did say that that was his and others decision, not mine and I really didn't want to rehash that now. Needless to say, he wants to stay on a 6 month schedule to catch anything that could happen early (chances are actually low).

Anyway, my thought is - how does the Her2 Support Group help women (regardless of pathology) know what they should do. I got 2 opinions but still there were 2003 and 2004 studies stating radiation halves the recurrence rate of dcis (got rads in early 2005 - for my size and pathology characteristics it is only 8% for me). How do you make sure everyone knows what they should be doing and what is right? Not just for radiation but for chemo, surgery etc. Isn't there something we can do?

I was placated by my rad onc in that he said, well - if you get another cancer, then you can still keep your breast and have a lumpectomy and radiation - yeah, right (like I would keep them after having cancer 3 times).

All I am saying is that I feel very educated but you aren't in the beginning. Any ideas on outreach to help women going through each step. Maybe a checklist and questions on every aspect you can think of. Our group has contacts at many of the drug companies and perhaps after coming up with a good list, they can take it from there and publish it (even as their own) so it gets out there. I don't mind taking the project on, but I want all of your imput. Let me know what you think and what we can do.