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Vulvar melanoma symptoms? Petrified :-(

wildpoppydancing
Posts: 2
Joined: Apr 2017

Hello everyone

Recently went to docs ad I had a show of blood (about a thumbnail or so) from my vulva area after wiping. 

On examination, she found a few pigmentation patches, 2 of which she said didn't look sinister. The 3rd is situated in the crease of labia, and resembles a couple of flat pigmented dots with a dark patch around it, (almost looks boomerang) in total no bigger than 4mm... Flat, pigmented, almost look as though they are under skin?... Not particularly itching me, no pain... To my eyes I cannot see any ulceration, but I don't know whether that is obvious to the naked eye?? I've spent hours with a hand mirror, and I just feel so desperate. Had lots of health probs in the last 5 yers (celiac, Graves), this has floored me.

So doctor has rushed me through urgently for Vulvar melanoma... I'm seeing Gyn in a couple of days, but I just cant stop crying. I am petrified, I have a little boy, I am 43. It seems the prognosis (according to dr google) for this cancer is not good?... 

I was wondering what anybodys experience of symptoms/pigment patches were like before dx? 

Just trying to get my head around this, I have spent HOURS on google, found the statistics etc and I guess I just feel super lonely... Hubby isn't much for emotional support, so I'm on my own... Any help greatly appreciated, thank you so much <3

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2354
Joined: Mar 2013

wildpoppy, first let  me say I did not have vulvar melanoma, I am a visitor from the Uterine board.  

Easier to say than do, but try to take a breath.  This is overwhelming and I think most people can relate to the fear of it all.  But Dr. Google is not a good doctor.  I am going to guess vulvar melanoma is pretty rare so any information out there is probably OLD.  As a dear friend of mine always said, "You are a statistic of one" so ignore the online statistics. 

Make sure you are working with a GYNECOLOGIC ONCOLOGIST.  They specialize in cancer of the female reproductive system and take additional training.  This is first and foremost.  They are going to make a plan on how to treat you.  

You are not alone.  Some of the gyn cancer women check on the various boards - Ovarian, Gyn, Uterine, etc...and see who needs a shoulder.  Please be sure to come back and let us know what is said and what the plan is.  There really are some AWESOME women here - we will catch you when you fall.

wildpoppydancing
Posts: 2
Joined: Apr 2017

Thank you so much for replying

I'm in a dark place today, my boy is so sweet, I just couldn't bear leaving him, he has no one else (my hubby not real father, not happy marriage) :-(

I will do what you suggest re Gyn Oncologist... I am not sure of the system here in UK. Yes, I know you are right re google, I just havent been able to help myself! I haven't had a dx yet, but the Doc did a good job of scaring me with her referral, but I guess its good that shedid, don't get me wrong... (thats why I wondering about other peoples symptoms etc) ...

I am paying to see a local dermatologist tomo, who specializes in skin cancer, whilst I wait for Gyn appt. 

Thank you again for your kindness <3

Kacsalley
Posts: 6
Joined: May 2017

Found lots of information out there about vulvar cancer at Am Ca Society and Mayo.com. I read everything as I had 2 weeks before my surgery. Glad I read it all, but was still not prepared for the mutilation ( or so it seemed) to me. Getting used to the New Normal. Statistics are good for us that catch it early. 

Kacsalley
Posts: 6
Joined: May 2017

Feel like a freak when I saw what was done, but I am alive! Now to just heal the Sentinel node cysts that are happening. Not getting much help from my oncologist, thinking of seeing my primary About the tennis ball sized lt side. Rt side only golf ball and not draining like the other which has 2 holes. Doc said I am progressing as expected! ??? Really?  Tennis ball sized? Anyways thought I would toss this out to you. But prognosis is good! 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2354
Joined: Mar 2013

wildpoppy, please let us know what your dx is and what the game plan is.

Kacsalley
Posts: 6
Joined: May 2017

had something like ingrown hair. Just had it removed as biopsy said cancer. I freaked too!! Just got results from surgery and doc got it all in that one area. Still freak out as I don't get much help from doc or nurses as it is rare cancer and surgery. Keep positive!  I am looked down there and panicked, but have months to wait for swelling to go down. But I am Alive!  Lots of positive feedback on internet about surviving vulvar ca if that is really what u have. U R not alone! I felt alone, but am finding more people just like

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2354
Joined: Mar 2013

Kacsalley, I was surprised how long it took for swelling to go down.  Holy crap!  I posted to your other comment, but you are working with a gynecologic oncologist correct?  Keeping positive is hard, but take it a day at a time.  

Laura2051
Posts: 34
Joined: Aug 2016

This month is the 1 year anniversary of my surgery to remove my cancerous clitoris and all the cancerous lymph nodes in my groin. I am alive and doing well, considering all things. July 26th is my actual anniversary of the surgery. Sisters, you can get through this! I had 32 radiations and 6 chemos- finished last October. I hate the phrase "new normal". I just live day to day trying to be positive and thankful for the extra time I have on this earth with my loved ones.

Wildpoppy and Kacsalley I will be glad to pray for you and help you in any way I can. I was 53 last year, 10 years older than you Wildpoppy but still young enough to struggle through the emotions of my particular, rare cancer.  Who gets cancer of the clitoris? Less than 4% of all gynological cancers...I should be so rare! Well what I have learned is that the mind is very powerful. As you think your body responds in kind. Pray, Believe you will be well, be thankful for all the little things. Walk or excercise in some way everyday.  I like what No time said about being the statistic of 1. Do what you can to be as healthy in every way you can. Forgive others, forgive yourself, eat healthy, think good thoughts. Live a life of love and believe that you are not alone in this. God is with you.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2354
Joined: Mar 2013

Laura, thank you so much for coming back and letting us CELEBRATE with you!  The ladies who find themselves diagnosed with this cancer need to hear from you so please be sure to check in and look for those needing your help.  As for your last few sentences, it brought a smile to my face.  I look forward to hearing any more anniversaries from you.  

JLDubbs
Posts: 3
Joined: Jul 2017

Laura2051, may I ask what hospital you were treated at? Do you have any swelling from the multiple node removal? I saw a response by someone on another thread asking about treatment centers, and the person replied "a specialty treatment center". What does that mean for rare cancers? 

I posted this on another thread, but haven't recieved any replies. I hope a double-post is okay.

Hello!

My 77 y/o Mother was finally Dx in December 2015 (by a dermatolgist, her GYN didn't know what to do with her). She had a radical vulvectomy the following January and post-op complcations kept her in the hospital and in rehab for 6-7 months. We saught 2 lawyers, both didn't want to take her case. "She didn't die" and "It's complicated in NJ" was what we heard. Unfortunately the cancer spread to the nearest node, so we prepared her for surgery by building her up (through Complimentary & Integrative medicine). Node removal was on 12/20/2016 and radiation & chemo began late January 2017. She complained of hip/leg pain starting sometime in Febuary, and after getting whisked off to "Pain Management" and 2 ER visits, they finally did an MRI of her pelvis & spine which showed a small tumor in the bone of her hip socket. She completed her 2nd round of radiation this past Wednesday. Her Oncologist, in my opinion has no idea what to do and is pretty laxed in her treatment, never mind not thinking OUTSIDE the box. Thank you for creating this thread on a seemingly ignored rare cancer. 

I created a Go Fund Me account last year to help with the costs of alternative treatments and I go into many more details about her journey there. Should you like to read more about it: https://www.gofundme.com/2j4b37w

(I am in no way trying to solicit donations, here. Telling the story over and over in verbal and written form has just gotten tiring). 

Any advice or survivors here? Thanks for listening. 

Warmly,

Jamie

Laura2051
Posts: 34
Joined: Aug 2016

JLDubbs, sorry just getting back to you. I was treated at a hospital in Montana, where I live, It has a cancer center associated with Mayo Clinic. The Cancer Centers of America I have heard are good and they are located throughout the country. I have a friend who went to Cancer Centers of America and she has a rare cancer and thought that they were very good there. My brother-in-law currently is battling bladder cancer and he went to Mayo Clinic and was impressed. My advice is to get another opinion, especially if you think your Mom's Oncologist is lax.  I hope this helps. Keep me posted. Hang in there. Love and hugs, Laura

JLDubbs
Posts: 3
Joined: Jul 2017

Laura, 

I am in love with Montana, I spent some time there last August and can't wait to get back. 

We met with my Mom's oncologist last Wednesday, and she gave us the "there's nothing more we can do within these walls" speech. Since she is recovering from radiation, we are taking it one day at a time. The Mayo Clinic is fantastic and I hadn't thought of that. Thanks so much for the suggestion. I will look into it ASAP! 

love and hugs back,

Jamie

stellareporter's picture
stellareporter
Posts: 6
Joined: Jul 2017

Hi thee!  Today is my first day on this board.  I am 47.  I went for my yearly pap in November and my GYN saw something she didn't like and did a punch biopsy.  That was NOT FUN!  She called a few days later with a cancer diagnosis and a referral to a GYN onologist.  I went for my appointment and they scheduled a partial vulvectomy.  Part of the outer labia wa removed.  ALl the margins were clear and recovered pretty well and went on with my life.  Went for my 6 month checkup with the oncologist and she saw something again.  Did another punch biopsy, this time of the clitoris.  This was definitely one of the most painful things I've ever been through!  The shot to "numb" it brought tears instantly.  Anyway, just got a call and it is cancer.  I have an appointment a week from tomorrow to talk about my options.  I'm really scared that it's going to have to be a full vulvectomy.  Has anyone on here been through this?  Please Help set my mind at ease and let me know it's going to be okay!  I've been divorced and single for a long time, started dating a wonderful man a year ago and then this happens....

 

shamayim's picture
shamayim
Posts: 19
Joined: Aug 2015

stellareporter,

I had a different kind of cancer, but know all of it is scary and tough to go through.  I did it mostly alone.  I could write a book on my trials and tribulations of divorce, finding new love and then getting anal cancer, going broke, losing health insurance, dealing with an aging parent, and finally a massive almost fatal heart attack.  I was told I'd need a heart transplant as I laid in ICU on a heart pump machine wondering what just happened to my life!  I had just celebrated a year anniversary being cancer free.  All I know is that you can survive just about anything and you are not alone.  Whenever I feel sorry for myself or I am scared, I know that I can do this.  I too was crushed after finding a new, wonderful, exciting partner only to have anal cancer affect my vagina so badly, that the intimacy I once enjoyed has changed forever.  There are always new ways for intimacy and love and all you can do is try your heart out and not give up no matter what.  I dont have all the answers and if you are religious you know prayer does help.  Take it one day at a time.  I have manged to go from a person who needed a heart transplant to one that has recovered better than anyone ever expected.  Just dont give up! 

chrissymae39's picture
chrissymae39
Posts: 17
Joined: Aug 2017

Hi Stellareporter,  are you still checking in on this disccusion board? How did your appointment go this summer?  how are you doing now?  Hope all is well.

chrissymae39's picture
chrissymae39
Posts: 17
Joined: Aug 2017

Stellareporter I am new to the board.  My diagnosis of Vulvar cancer came at the end of July.  I had a partial vulvectomy on September 7th the tumor was removed clear margins lymph nodes on right side all clear 11 lymph nodes removed from left side 1 was positive for the cancer.  Doctor is not recommending radiation at this point in time instead we wait and watch and monitor things closely.  The hope is all cancer gone the unknown of course is what keeps me up at night and in a panic during the day.  I can't offer you encouragement as I struggle with that myself but I can offer friendship and an ear to vent to.  your last post is from the end of July please let us know how you are doing now and what treatment if any you recieved and how you are doing and feeling.

Rebel26
Posts: 1
Joined: Feb 2018

Found a sore, white patch of skin on the inner vulva/vagina and was told it was probably thinning skin.  I am 59 and have suffered awful menopause for 8 years now, miserable hot flashes every time I move, cause throwing up, migraines, etc. Little sleep and just seem to work. So, when I was told the spot  was most likely thinning skin, I thought just add it to the other miserable pile of aging! 3 months later cream didn't work, back I go for a stronger cream which burned like hell since the spot has now some open wound area so urinating was SO not  fun! Back I  go and this time for a punch biopsy. Invasive skin cancer.  Of COURSE it is because it is rare and as some of you have said not much research in the area. Over to a surgeon and he feels it  has been caught early  and we should  go for  a partial vuvectomy. He says  since I want this  over and done with we should  possibly remove sentinel lymph nodes. OK. Then, we think about more discuss with 2 pathologists and another surgeon and another larger biopsy yesterday and now I am scheduled for  the  partial vulvectomy this  Friday at 7 a.m.  I  can't seem to find out much about  after care which is a major concern since I  live alone with a cat.  The doctor staff say the hospital will tell me so I am clueless about what to expect for after care, how to clean, what to use, what to have on hand, how long until I can sit/lay, etc.  Crazy!  I  don't want to read too much on various websites and have tried to stay on ones I find would have more accurate information.  I don't think anyone would have better info than all of you.   I  know  we are all different and my surgeon seems like a friendly, competent guy.  Course, I don't trust many medical personell from past experience but never anything as serious as this!  I was happy when it was decided not to  remove nodes due to an already current issue  I have from menopause  of swelling especially in my legs.  And, being overweight the recovery would have been even more difficult.  I  am a bit dismayed now reading that some of you  had reoccurence even after having nodes removed.  I guess all we can do is be as informed as possible and ask many questions along the way and pray we come through it!  Course, I only  found this site today and I am goiing in Friday a.m. but if you can even tell me if I should have tons of plastic to lay on, tons of  ice for  I guess swelling, tons of gauze or pads to do whatever!  Thank you to any and all who  respond and I wish all  of you well and positive prayers!

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