OK, I think I ought to share how it ‘goes’?

August 17, 2007 at 1:07 pm

In my case, 1+1/2+ years after my CIDP onset, the ‘lump’ was found. Because my neuropathy was mainly sensory, afterwards, until it was ‘out’ I never could feel or find that LUMP!
I was lucky in that I called ALL my docs: from neurologist to dermatologist and asked each about WHO they would recommend for surgery, reconstruction and for f/u oncology. Each doc [ten of them who care for me-I’ve now a few more?] gave me 3-5 names each – of which 4 names came out top rated. Then I crossed off those who weren’t in my category of PPO’s in my plan. THEN I went on the ‘web’ and researched the dickens out of each of them! I found a surgeon who does nothing but BC surgeries, a plastic surgeon in the same office to do reconstruction and an Ocon/Hematologist to do the follow up. The last wasn’t a ‘Star’ on all the referrals, but the Hemat…part I felt would be useful given the immune issues. I was right on all fronts!
After the ‘standard mammogram’, there came a more particular ‘sonogram’. Then the Biopsy, then a ‘Pet Scan’ [I’ve a family history of cancers, all different for each person {JOY?!}] then the ‘surgery’ with lymph node biopsies and an ‘oncotype test’ to help assess whether chemo or rads would be needed. I escaped that latter part.
IMPORTANT HERE is that the PET and Onco tests are still considered by some insurances as ‘experimental’ tho many do cover them. In my case they did, but I received calls from both parent ‘companies’ asking IF I needed financial assistance…These calls came during the insurance ‘pre-approval’ processes. While I was ‘covered’, it’s a comfort to know that those who really need it aren’t left out.
The Oncotype test occurs after the surgical biopsy initial results are in. They take about 3 weeks-they are very LONG weeks indeed! But they do determine what your ‘odds’ are given certain hormone types that are variable given an ‘affinity?’ to cancers in the future or not. That all determines what future therapies such as chemo, radiation etc. and the types and natures of ‘after surgery therapies’ one gets.
I was very, truly lucky! I got surgery and went straight to the ‘after-surgery’ stuff.
I have to say tho, that going thru this whole Cancer diagnosis, all I ever met were professionals who KNEW their jobs and DID them WELL! Far different for most who start out with the ‘numb toes’! So the whole cancer ‘thing’ was easier than the CIDP ‘thing’ because a] Folks knew what to do; b] how to do it; and lastly just went and did what needed to be done! No mushing around!
I promise to be here for you whenever you need. It’s scary in ever so many ways! All of those WHAT-IF’s and IF-ONLY’s start to haunt you. Do not let them!
I hope this helps you and others understand the ‘processes’ that go on during the diagnoses and treatments.