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Scared_ Suspected Vulvar Melanoma_ Please Help

Forums Cutaneous Melanoma Community Scared_ Suspected Vulvar Melanoma_ Please Help

  • Post
    wildpoppy
    Participant

    Hello and thank you for reading

    4 days ago I found some blood whilst wiping after a pee… Only a thumbnail's worth. As I was on my way to work and late, I had a quick look, thought I saw a kind of soft bump and red pin prick.

    Later that day (under self investigation!) I couldn't really find what I had seen earlier that day, the pimple thing. However, I did find a patch of 'pigmentation' /mole/freckle thing on the inner crease of my labia (minor) Sorry if this is too much info…but I am so scared :-(

    So, this 'freckle' is about 3mm irregular looking, kind of banana shaped maybe? but not clear enough for me to see… doesn't seem raised at all… no evidence of bleeding either.

    Kind of grey/blackish looking. Diificult to see in mirror myself. I have a couple of grey patch markings also on the opposite side that are not so dark.

    I made an appointment to see docs. I went today, and she is referring me immediately. I am in UK, and they have fast forwarded me to specialist under suspected vulvar melanoma :-(((

    I have been reading up on it all, trying to be 'sensible'… But the prognosis for these things looks grim. There is limited information available, and what I CAN find, ugh… It doesn't look good….Mucosal melanoma has a poor prognosis? 

    I am 44, one 10 year old boy who is my life, and I cant stop worrying. I have had many heath complaints in last few years (Celiac, Graves) and I guess the last few years have been tough.

    If anyone has any advice, or knows anything that might help… Sincerely would appreciate :-( Thank you

     

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  • Replies
      Cindyco
      Participant

      Hi, my mom was diagnosed with anal mucosal melanoma in October 2016. She was Stage III at the time, now Stage IV.  Being diagnosed was the worst, with all the waiting and the fear.  Mucosal melanoma is scary and aggressive, and you'll want to have them expedite all the tests so that you can get treatment as soon as possible.  If it's early stage and removable, get it removed ASAP.  They will probably start you on one of the immunotherapies after that.  There are people who caught it early and have been NED for a long time. 

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        wildpoppy
        Participant

        Thanks Cindy, I am sorry about your mum… Yes, the fear is dreadful… I find myself forgetting for a moment or two then suddenly I remember and the shock hits me like a train all over again. When you say there are people that have caught it early and have been NED for a long time, how long is that? I have not been able to find many people that are NED for more than 1-2 years without a reoccurence :-( awful… Hope your mum is fighting this thing, how is she?

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        Plpaulina86
        Participant
        I was wandering what happened to that black spot behind your knee?

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      stevenallenschwartz
      Participant

      There are many new therapies that treat Stage 4 melonoma. The good news is you found it; now you can treat it!

       

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        wildpoppy
        Participant

        My understanding is that mucosal is much worse than cutaneous? is that correct?  thanks for replying :-)

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      debwray
      Participant

      In the UK you prob will be referred first of all to dermatology. They might do biopsy but after that you will be refered to nearest skin cancer specialist p!astic surgeon for wide excision and possible sentinel lymph node biopsy….you might want to consider a second opinion and travelling further to one of our centers of excellence /research like Leeds, the Marsden, London, the Christie, Manchester, etc etc Here they will deal with only melanoma and have easier access to newer drugs via trials and experience.

      This is a difficult time  before diagnosis and a treatment plan is put in place. Push to get the appointments asap. Complain and ask for cancellations if need be.There is no certainty about Melanoma at this stage… Try and save your anxiety for the certainties and get a copy of the path report from any biopsy.

      Nothing is certain as things stand..

      Deb

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        becky15
        Participant

        Look up angiokeratoma fordyce vulva. These appear along the lines of small veins in the labia region and are harmless. I panicked when I had one bleed slightly. Hope that this is the explanation.

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        wildpoppy
        Participant

        Thankyou… I have just had a look, but it doesn't really look like what I have, and mine is just one (would you just get one of those things? the pictures I saw showed many)…

        Mine looks almost under the skin?… although it IS near some veins… but its flat from what I can tell… and looks darker than the other veins I can see… I don't know… Can you get broken capillaries under skin down there? Thank you for replying… :-) Kimmy

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        wildpoppy
        Participant

        Thank you Deb, that was very informative… Yes, I would definately get 2 nd opinions etc… and trevelling wouldn't be a problem… I have an appt in Gyn dept on Wednesday, am desperately scared. I guess you are right about 'no certainty'… I have tried doing sensible research, to inform mysef, but it IS all doom and gloom on Dr Google… Mucosal Melanoma seems to have such a poor prognosis, and I haven't managed to find many people that have gone beyond 12-24 months without reoccurance etc… I wonder how everyone copes with the fear and stress, its floored me :-( thank you for you kindness and replying… Am hanging on your words 'there is no certainty'…  Thanks again, Kimmy

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        CHD
        Participant

        Hi Kimmy,

        I am 4 years out from a stage 1-2 vulvar mucosal melanoma diagnosis with clear scans (hooray!), and there is another poster here who is more than 4 years out from a stage 3.  There are a lot of new treatments out there and one of the most important factors, after an actual diagnosis, is to see a melanoma specialist, preferably at a top treatment center.

        At this point, though, I have to say another possibility is of a vulvar varicose vein.  It is best to be on the safe side and I am glad you are getting good medical care!  But there are still quite a few other possibilities.  Fingers crossed that it will turn out to be benign!

        Wishing you the best!  You are not diagnosed until you are diagnosed.  Everything else is speculation and worry.  Worry is challenging, I am the first one to agree, but remember, it is not grounds to panic.  Wait til you have a diagnosis (or not); before that, it is a waste of perfectly good peace of mind. : )

        Cheri

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        wildpoppy
        Participant

        Thank you so much for your reply <3

        I'm crying now, I don't know why, probably the stress of it all, probably because today I am working from home, and using every opportunity to take pictures of this 'patch' to try and see it properly. 

        Thank you for your lovely reply, I am SO pleased to hear of your success. Sincerely wonderful. 

        I guess you are right, about not worrying until diagnosed, I think as I have had so many other heath issues that its just getting on top of me. May I ask what your symptoms were? Did you have a patch/bump/mole? Was it very big? I just don't seem to fit into any catergory as what I have looks like an area of light pigmentation (3-4mm) with 2-3 small dots that almost make a boomerang shape… Then of course unexplained bleeding.

        May I ask what treatment you did, and did you do any alternative healing? Like diet etc?

        Again, thank you so much for your time and kindness, may you stay healed forever 

        Kimmy

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        wildpoppy
        Participant

        Thank you so much for your reply <3

        I'm crying now, I don't know why, probably the stress of it all, probably because today I am working from home, and using every opportunity to take pictures of this 'patch' to try and see it properly. 

        Thank you for your lovely reply, I am SO pleased to hear of your success. Sincerely wonderful. 

        I guess you are right, about not worrying until diagnosed, I think as I have had so many other heath issues that its just getting on top of me. May I ask what your symptoms were? Did you have a patch/bump/mole? Was it very big? I just don't seem to fit into any catergory as what I have looks like an area of light pigmentation (3-4mm) with 2-3 small dots that almost make a boomerang shape… Then of course unexplained bleeding.

        May I ask what treatment you did, and did you do any alternative healing? Like diet etc?

        Again, thank you so much for your time and kindness, may you stay healed forever 

        Kimmy

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      casagrayson
      Participant

      Aw, Kimmy!  Please don't let the stress eat away at you.  I've had multiple instances of small drops of blood and it always turned out to be nothing.  Chances are that there is no correlation between that and the pigmentation that you see.  Do whatever you need to do to relax until you have your appointment.  Let us know.

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        wildpoppy
        Participant

        Thanks Susan… for your kind words  <3

        Am just about to update

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      wildpoppy
      Participant

      UPDATE:

      Went to dermatologist this morning (having hardly slept all week, and cried most of yesterday)…

      I turned up like a zombie to be honest, numb with fear.

      So after examination, she said that it is definately pigmentation (and not vein)… She said that it needs biopsying tomorrow at Gyn, but that at worst it would be an early melanoma.

      She did say that it could still just be a freckle, but that it had a white area in it. Apparently she thinks that the blood did NOT come from this, and must have come from somewhere else. 

      I should've have asked questions… But I don't know what happened, I sat nodding dumbly like an idiot :-( too scared to breathe. 

      Could anyone here tell me what an early melanoma would mean? Would it impact the treatment? Also, how reliable are dermatologists (she said she had never seen a vulvar melanoma!!)… And on another site, I was told to make sure I see Gyn Oncologist to make sure… Any ideas???

      Would greatly, sincerely be greatful for any pointers or help, I feel so stupid now, as I am home with so many questions… I tried calling her, she finished for the day?!

      Thank you to everyone that posted and helped me, you are all kind souls

      Wishing everyone healed

      Kimmy

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        casagrayson
        Participant

        An early melanoma would be a superficial lesion that stayed in the very top level of the skin.  The only treatment for this type of melanoma is excision … they take it off, and you are done!  No scans, no radation, nothing.  So the fact that she said this should give you great comfort!!  If this *did* turn out to be anything other than an in-situ or Stage 1 melanoma, though, I would encourage a melanoma specialist over a gynocological oncologist.  Melanoma treatments are very different from other cancer treatments, and the changes in the field are coming fast and furious, so you need someone who deal in this every day.  But until you get the biopsy results, there's nothing more to be done.  Deep breaths!!

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        wildpoppy
        Participant

        Thank you Susan for taking time to reply again…

        Thank you for the explanation, I guess it has slightly calmed me down… But like you say, until there is a biopsy, no one can say…its a small ish lesion apparently, at 3x4mm ( I have no idea what is considered small or large??)… I see what you mean about a melanoma specialist, and yes, completely agree… Although I will go to my Gyn appt tomo and see what happens. So even if it was Mucosal, they would not treat a stage 1 or in situ?? Even though mucosal so much more aggrassive? I have read so may stories of persons with stage 1 having a mole excised, then it coming back 5-10 years later as a stage 4.

        Its so scary. It happened to a friends ex wife, stage 1 to stage 4 (8 years later), it metastisized to her brain and unfortunately she passed last year :-(

        Deep breaths here I come!!

        You've been a real support to me, thank you sincerely

        Kimmy

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        casagrayson
        Participant

        There might be something different about mucosal melanoma … but given the location this could very well be cutaneous … IF it is melanoma at all!  One step at a time.  Also, stay away from internet sites.  Most all of the information out there (especially about prognosis) is very outdated and won't make you feel any better.  This is one of the few sites that you can count on updated treatment information.

         

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        Amyem
        Participant
        Hi jimmy
        In a similar situation to what you were and hoping you could update us on how you’re doing now?

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      CHD
      Participant

      Hi Kimmy,

      So glad you will be having the biopsy today to get an answer!

      As far as some of the questions you asked me, mine was a superficial spreading melanoma.  It was 2-3 cm (fairly large), on the inner labia and across just below the clitoral region.  It had been growing for quite some time before I noticed it, and I only noticed it because it began to itch.  Unlike nodular, superficial spreading is a flat, surface lesion that can grow for years horizontally before it begins to grow vertically. It is only vertical growth that makes melanoma dangerous; that is when it is able to reach the levels beneath the skin containing blood and lymph, which is the way melanoma spreads.  That is why in situ (strictly on the surface) and stage 1 have better prognoses associated with them.

      Mine looked very typical for an SSM.  It was very deeply pigmented, much more deeply than the other areas of dark gray pigmentation at other places in that area.  When I say deeply pigmented, I mean like splotches of oil paint on a palette before they are blended, so blackest black, bright white, deep gray, rust brown.  Even after having grown to 2-3 cm, it was still only around 1 mm deep and I was staged between stage 1 and 2.

      I had it excised, and they also did bilateral sentinel lymph node biopsies.  Mucosal melanoma is more aggressive and that is why I recommend seeing a melanoma specialist to plan your surgery.  I don't know whether the lymph node biopsy is recommended for mucosal melanoma lesions regardless of stage, or if it is only done under certain conditions.  I am not an expert and can only speak from my own experience of course.  I actually knew none of this when I was diagnosed.  My melanoma was removed by a local GYN oncology surgeon who did the lymph node biopsies because there was a question of whether my melanoma showed signs of regression.  That is a whole other story.  But because it is mucosal, it does require closer followup, though there is no other treatment available or needed that I know of.  Not unless you reach stage 3 (lymph node involvement) do you start on a systemic treatment, to the best of my understanding.

      All of that is, of course, assuming you had mucosal melanoma!  Right now, happily, there is a chance you may have a benign skin discoloration, and I will be hoping that for you! : )  If not, I am here and always happy to talk.

      Best wishes to you!

      Cheri

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        Joannxbuc
        Participant

        hoping only great news for you!–I started at Stage IIB and now am Stge IV vulvar melanoma and while I am having some immunotherapy treatment and it is going OK (some bad side effects at moment), I wanted to let you know that a number of GYN mucosal melanomas are BRAF mutation positive (although the standard oncologists impression seems to be otherwise). A BRAF mutation is the most common I believe and opens up a wide number of treatment options–if someday you do end up down the road. My oncologist said to my husband and I (although we do shake our heads about this), that in many ways this is the best time ever to have metatastic melanoma. And, there are many of us to talk to and listen and share anytime. Best, JoAnn

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