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4/21/2017 8:46am
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Replies: 8

Hi everyone. Just wanted to share my story so far with melanoma. I noticed a spot on my shoulder in about 2005. After mentioning it many times to my dr. And being told it was nothing it started changing more rapidly in 2013. At which point Dr still said it was nothing and saw no point to refer me to dermatologist. By 2014 I had met my out of pocket max for insurance and although my dr. Said the spot was still nothing she agreed to refer me to dermatologist (even though he will not understand why she sent me). As soon as dermatologist walked in he said it looked like melanoma and called in his colleague to confirm. They immediately did a punch biopsy with a most likely I would be back diagnosis. Sure enough in a few days I was called back in to talk with them. It was melanoma and a removal was scheduled. Resulting in a 5 inch scar down my shoulder. I was told it was just under the cut off depth for lymph node testing and proceeded with routine skin checks as only follow up. In January 2017 my armpit near the original site started to fill strange. By February I noticed a hard lymph node and went to my dr. (I had changed primary dr.s at this point) he said we could just wait and see but when I mentioned the melanoma I had previously had (he had forgotten?) He said we could still wait or do a surgical biopsy. I chose biopsy. It came back positive for melanoma. Now I have stage 3 and an oncologist. I meet with a different dr. On Monday to schedule a complete right axillary lymph node removal then either immunotherapy or a clinical trial. Haven't decided which yet. So I'm finding out how much I have to be my own advocate. I know the dr.s I have had are good and defiantly mean well but if I hadn't continued to push I hate to think of where I would have been at this point.

jennunicorn - (4/21/2017 - 1:15pm)

So sorry you've gone through this. I was misdiagnosed by my primary doctor who also did not refer me to a dermatologist. Having been on an HMO plan, I relied on her for referrals, but also fully trusted her as my doctor and believed her when she told me it was something else. Mine grew much quicker, it showed up in Feb 2015, got misdiagnosed May 2015, then October 2015 finally saw a derm for a different issue and at the same time the derm saw the spot and had it biopsied that day. Found out I was stage 3b in November 2015. A year later progressed to 3C. It sucks we had to learn the hard way how badly we need to advocate for ourselves. Hope this forum can be of help to you as it has been to me. 

All the best,

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

Fen - (4/21/2017 - 3:34pm)

I am sorry you're here - especially sorry since your dr. mis-diagnosed.  Important question, though - where are you being treated?  It is crucial that you see a melanoma specialist not just a regular oncologist.  You can find one from the MRFs website.  

Best of luck and keep us updated.


Welcome to the club. All of us have gone thru this progression. I suggest you consult with a melonoma specialist who can advise you after genetic testing what is the best course. There are many choices today and it depends on how your melonoma responde to what treatment.

Shaneswife - (4/21/2017 - 11:50pm)

Sorry you've joined the club. Wow all these people misdiagnosed. My husband was as well. He had a 37mm mole with all the abcde signs and the doctor managed to do 3 biopsies incorrectly. He was finally sent to a derm when the mole was the size of a child's fist. Derm said it should of been removed anything measuring more than 6mm should be taken off as a precaution. 



BillMFl - (4/22/2017 - 4:15pm)

I truely hate this kind of story. You did the right thing multiple times expressing concern. It is a shame your PPO did not refer you promptly. This is a problem with the present status of health care which tries to control cost while increasing patient risk.  Patients need to be more insistant and stand up for themselves even if it means seeing a Derm out of pocket. You deserved much better. I wish you the best and am glad that you are receiving proper care now. Get referals to the best Melanoma treatment center near you. Don't be shy and be your own advocate. Learn as much as you can as fast as you can. Share what you are told on here and you will get lots of good advice from folks in similar treatment plans.

Sophietx - (4/22/2017 - 6:16pm)

I don't understand. Are these doctors plain stupid? I was going to "well known" dermatologist for 5 years for well visits in our small town. I had a "black mole" on my chest the whole time. Non of my other moles looked like this one. This one completely stood out. The dermatologist never questioned my mole. I even remember asking her why she is done so quickly and that annoyed her. After each visit she was trying o sell me Botox. Well, luckily my breast cancer surgeon during screening noticed it right away. And wanted me to have it checked out by the hospital dermatologist. And it was Melanoma in situ... 

Anonymous - (4/22/2017 - 6:42pm)

Unfortunately a lot of dermatologists these days are more into esthetic dermatology like botox and chemical peels.. making people beautiful instead of the most important part of their job, to catch skin cancer early. So frustrating that we can't trust all doctors, we can only trust ourselves and our intuitions and force doctors to listen to us when we feel something isn't right. So very glad yours was caught early even after being ignored by a dermatologist. 

Nicky - (4/30/2017 - 7:52am)

Hi there, sorry for your diagnosis.  You are right to be your own advocate and question and fight for your survival. It's a lesson I learnt 17 years ago when I was first diagnosed with Stage III melanoma.  It has kept me in good stead and has helped me survive two more melanomas.  I wish you all the best in your journey.