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I'm mew and post to rare cancers but despratly need support for my vulvar cancer/melanoma

chish0001
Posts: 5
Joined: Jan 2010

Somebody PLEAE help me. I went through this 4 years ago and had NO support, thinking I was the only one and could not find anyone out there like me, now I'm doing it again, is there anyone out there that can help?? I have my second surgery on the 15th of Febuary

JR1949
Posts: 230
Joined: Jun 2009

My wife had a mole removed in 1991 which was malignant melanoma and has been vigilant and faithfully returning for annual checkups and xrays. June 2009 the xray was suspicious and after MRI, PET scan, CT scan and biopsy she was diagnosed with stage 4 melanoma with 2 tumors on her lung and one on esophagus. She has undergone 2 rounds of IL2 chemotherapy and last CT scan revealed 1 tumor gone, one almost gone and one reduced 75%. She returns to the hospital on the 15th of February for another round of chemotherapy.

I know this is not the same kind of melanoma, but just want to tell you there is hope. Keep a positive attitude and pray. This is what we have done. We have friends and family praying for us and I truly believe in the power of prayer.

Hope your surgery next week goes well and results are good.

jsesch
Posts: 5
Joined: Jul 2009

Have you posted on melanoma.org's site?

mh1229
Posts: 22
Joined: May 2010

I was diagnosed in January. Not at all what the gyn thought it was. I had just had a baby and thought it was some wierd hormonal by-product.
I have had 3 surgeries to get ride of "it". 1st one was not too bad, done in the office with a local. 7mm vulvar melanoma. Next came a simple vulvectomy, still not clear margins with another 2mm found. I made the mistake of looking and completely traumatized myself. Next came vulvectomy and another 1.5mm but clear margins. I waited 2 weeks to look. Still rough. So, it has been hell. I am 31 and this has been a nightmare.
I hope your surgery went well and I would love to hear from you. I ended up in stage 3 and am still healing physically and emotionally.
Melanie

mh1229
Posts: 22
Joined: May 2010

I hope your surgery and recovery went well. I too have been diagnosed with vulvar melanoma, Stage 3. I have had 3 surgeries for clear margins, a SNB and WLE. I am now physically healed and doing adjuvant therapy.

Miriam52
Posts: 1
Joined: Apr 2018

My gynecologist discovered a mole at my well checkup yetserday. First time seeing this doctor as I had moved. No one ever noticed it before. It is about four by two millimeters and dark blackish - very hard to find or see. Wonder if previous doctors missed it - did not know I should have been lookiong myself. I am 65 years old and freaked out about this.Was not expecting to hear this. I would like to have it removed. She suggested removing it but also said I could wait a while and see if it changes. I am afraid to just let it stay there and would rather have it removed and evaluated in the lab. It appears flat and edges do not seem to be irregular but really hard to see.  I called her today to say i would like to schedule the procedure to remove it (no one called me back yet)... but now I am wondering if it is better to have the gynecologist remove it or perhaps go to a cancer center like Fox Chase Hospita lor U Penn - I live in Philly area... and start with one of those people from the gitgo. Very scared and unsettled.. Appreciate any help or feedback. 

cloverspirit
Posts: 9
Joined: Mar 2018

Does your gynecoloist seem comfortable explaining the biopsy? My guess is she'll treat you better than a stranger at the hospital. It's an area she's familiar with, and as long as she is familiar with the procedure, it will go smoothly. In my experience, convincing a doctor that the biopsy is needed is half the battle in getting it done.

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