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vulvar cancer/melanoma

Posts: 5
Joined: Jan 2010

I am a 49 yr olf mother of 4 grown chilldren and 24 grandkids, I am not ready to die!! Aprox 7-8 years ago I had a small 1mm bump on my vulva, went to the doctor to be told it was a clogged pore (no biggy)so they removed it with something that reminded me of a apple correr, boy that hurt! The doctor wasnt empressed with my "clogged pore" and didnt bother with following up with the pathology on it, then four years later I had another one almost the same place come up... I wasnt concerned, it was just a "clogged pore" but it looked just like that first one adn acted just l;ike it... it didnt look grose but it itched like crazy, I went to a different doctor who basically felt the same way of it was no big dealand he was going to remove it in the office just like the first one, I winned and was complaining that it hurt the first time and the doctor agreed to go ahead and do it in the hospital as outpatient, two days later they called saying the doctor wanted to see me that day to discuss my surgery, even though I had a appointment in a week to remove stitches, Well I found out I had vulvar cancer/melanoma and was referred to a specialist, I had a radical partial vulvectomy, which they removed everything up from the urithia up to the pubic bone, and deep to the bone, Ok, that was 4 years ago again now, and now I have a large mass on my pubic bone, I had a CT scan done and found out it is melanoma again, the other day I had a Pet scan done and tommorrow I have my pre-op, HOPEFULLY they will be able to help me. Last time I went through all this and tried to find support and could never find anyone... I thought I was all alone out there and the only support group the cancer support place where I live could hook me up with was breast cancer. I REALY am needing some support, and any info anyone can help me with. Thank you and stay healthy, Cheryl

CarrWilson's picture
Posts: 112
Joined: Feb 2010

Hi Cheryl,

I am sorry you are not finding others with your type of ca. I do know that is is probably not as rare as you think. I am one of the breast ca sisters, but I feel some of the same emotions. I am 49 years old and not ready to die either. Think as positive as you can, cry when you need to and keep checking CSN, there is bound to be someone in the same situation as you.

I would also ask my MD, and the hospital in my area about support groups.

This is what I found when I googled.


Best of Luck to beat this beast!

Posts: 1
Joined: Apr 2010

I am starting the same process as you have been going through. I'm 26 years old and just had a para tube cyst? (they thought it was a simple ovarian cyst but it wasn't) removed and the biopsy from the out side they took (there was a small bump that they wanted to take a better look came back high grade 3?.) I'm not really all together sure about what everything thing means but I am now the patient of an oncologist. I have found a lot about this from UK websites. It seems to be more exposed in the UK.I saw a lot of support groups and Vulva Cancer boards. I hope this helps some that you know you're not alone! I'm sorry I am at the start of all this so I don't have much else to say.

Posts: 3
Joined: Jul 2011

i just found a lump in my vagina and i was wondering if you had yours removed? i have had melanoma in the past. anyone out there, please contact me. i am so worried!

Posts: 1
Joined: Jun 2012

In the same boat !!!! I have heard some good things about interferon Being used for Vulver cancer !!!! Please ask your doctor about it .
Great feed back in the UK !!!! If chemo is advised look into penguin cold caps if you want to keep your hair

katenraj's picture
Posts: 18
Joined: Aug 2012

Hi Cheryl
I am responding to your post as I am new to this site. I posted last week but have not heard from anyone. I understand how you must feel. I had Stage 11 Vulvar Ca...squamous cell carcinoma. I could not have surgery as it was too intertwined with the rectal area. So I have just finished 25 radiation treatments and chemo. Finally starting to feel norman. MRI to be done in Sept. 2012. I am praying they got it all.

I hope you finally found someone talk to. I too am frustrated. there is so much support for breast cancer. I did find a Support group at a hospital for Gyne cancer that was nice to meet these ladies. They had ovarian cancers, and one had vulvar. It was nice to talk with her.
I hope you are feeling better by now and living a peaceful pain free life.
Wishing you the best

Posts: 2
Joined: May 2017

Hi katenraj. Are you still around since you mentionsed treatments in Sept. 2012 and it is now May 2017???  I have the exact same rare cancer.  

Shan420's picture
Posts: 2
Joined: Jul 2017

Hi I've had the same cancer as you. I was diagnosed in 2013 and didn't have insurance until July of 2014. I ended up having a modified radical vulvectomy.  And they ended up taking alto more tissue than they originally planned. Then those biopsies from surgery came back with an area to close to anal tissue for more surgery. So I did 30 external radiation treatments to that area and to lymph nodes in my groin as precautionary measures. I have been cancer free since Jan 15. So shoot away with any questions I might be able to answer.

Posts: 1
Joined: Jan 2013

hiya i have not been diagnosed with any cancer but im worried to death that i may have it. At 16 years of age (2005) i was diagnosed with Renal Failure (kidney failure) becuase of this i have to have yearly smear tests. My very first smear test came back showing abnormal cells. I didnt recieve any treatment, but had to have repeat smears every 6 months.Luckily aftet my 3rd repeat smear test the results came back normal. That was almost 2 years ago.. i have since had 3 reminder letter but have ignored them...im petrafied of smears, they are so uncomfortable and im so scared the results eill come back abormal again... Any way 2 years ago i found a tiny lump and was refered to a GYNO and was told i had the HPV virus..  un like alot of lucky prople who have never developed a wart, i do have alot of fler ups... now this is not my worry.... my worry is i might o jave vulvar cancer.  On  febuary last year i have birth to a beautilful baby boy, although he was 6 weeks early he was fine and i was fine although pregnancy did flear up the warts. It was during my first period that i started with a terrible arritable itch on the inner lips of my virgina.. ot was agony and lasted for a good week or so,  the skin was raw from continuious itching and had turned white and flaky. i went to the doctors and was given a steriod cream as he thought it was a raction from the sanitarty towel i had used... unfortunatly almost 8 months last i still suffer this terrible itch...  ot never goed away, out of 7 days i will have roughly 4 days of continuious itching and  3 days being normal... i say normal although the area doesnt itch it is extremly sore, a bit like iv got tiny fragments of glass under then skin... its really despressing me... i know i need to go to he doctors but im so scared... over the past few months alot of things have happend... iv had knocks on the door twice from cancer supporters.. iv recieved 3 smear test reminders and last week a tv program did a piece of cirvicalcancer.... its like somthing is telling me to go and get looked at....  are thesr typical signs of vulvar cancer...please help me :) thanx sam

Posts: 181
Joined: Jan 2009

I am so sorry for all that you have been through, but if you know that something doesn't feel right with your body, you really need to express this to a doctor. The severe itching you describe is indicative of some problem with the vulvar area..not neccessarily cancer, but something is not right. Please call tomorrow to have a doctor examine you, I understand being scared, but being scared and doing nothing is not going to help you. It is okay to be scared, it can give you motivation to face whatever you have to.

I have had vulvar cancer(adenocarcinoma-very rare) since 2008, I've had 2 metastes from it, so I know what I am talking about. You need to have someone listen to you and address your concerns. Knowledge is power.

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