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September 18, 2013 at 10:03 pm #21583ellowjotParticipant
Hello there –
I’m not overjoyed to be here, but I’m so glad you’re all here!
I’m 52 and I was diagnosed with melanoma about 3 weeks ago when a suspicious mole on my shoulder blade was biopsied. It’s my second melanoma, the first being .76 mm and on my calf about 10 years ago (removed with clean margins and nothing further done).
Here are the deets on the latest melanoma: 1.22 mm thick, non-ulcerated, vertical growth phase, nodular, mitotic rate 5, anatomic level IV. I had a wide local excision (WLE) sentinel node biopsy (SLNB) on Sept. 5th whereby two small axillary nodes were removed. I went through ten days of waiting hell until the final pathology report came back negative for melanoma in both the WLE and the SLNB. Yay!
However…. I hate to look a gift horse in the mouth, but I want a second pathology opinion to be certain I’m really Stage I and not Stage III. I’ve become a bit of a walking encyclopedia on melanoma and learned that interpretation of histological samples and the actual techniques used to prepare them can vary from one institution to another (see
http://europepmc.org/abstract/MED/23860116). My final pathology report does not indicate which immunohistochemical tests were even conducted (it just says “according to protocol”). And I know that Stage I probably means no further treatment but Stage III might mean complete lymph node removal and a year of interferon.
Unfortunately, I have Kaiser HMO but fortunately I live near UCSF. I’m hoping to get a second opinion paid for by Kaiser on the pathology from Dr. Adil Daud’s pathologist (the receptionist wouldn’t give me their name for some reason). My Kaiser surgeon is sending my to a Kaiser oncologist on Friday and I’m going to ask for this. It seems entirely reasonable since:
1. melanoma is fatal and correct staging in critical in determining next steps;
2. Kaiser has no melanoma expert (Dr. Gailani was it and he’s gone); and
3. there are no national standards for pathology procedures on SNLB’s so a true second opinion really needs to come from outside Kaiser.
My questions for you all are:
1. Any advice for how to get Kaiser to pay for the second pathology opinion? I’ve heard it’s worse than pulling teeth….
2. If I am in fact Stage IB, should Kaiser be doing any further in my case? PET/CAT scan? Honestly, I don’t trust them after I was denied my first routine colonoscopy at the age of 50… I had to switch doctor’s to make that happen
EllowSeptember 19, 2013 at 12:04 pm #62538Catherine PooleKeymaster
I understand the insurance issues. Doesn’t seem like it should be such a fight. I would possibly avoid the fight and pay out of pocket to Dr. Mihm’s group to examine the slides (all slides from original path to SLNB) This melanoma sounds higher risk of course than your first. I would also try to get into a clinical trial. Here is Dr. Mihm’s contact info and you should ask for their form to fill out: Martin C. Mihm Jr., M.D., F.A.C.P.
Cambridge, MA 02142
Or call his assistant: Rolanda
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