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Thread: New to all of this

  1. #1
    Newbie New User
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    New to all of this

    Iím generally a fit, healthy and active woman and so when I had my recent PAP test, I didnít expect to be told by the nurse that I had something suspicious on my vulva and should see a doctor. I went home and with mirror in hand I tried to see what the nurse had seen. My skin around the inner labia and across the perineum had translucent white patches but they were so vague, even my husband hadnít noticed them.

    The doctor didnít think it was anything to be worried about but got me a Gyn appointment within two weeks. I had three punch biopsies taken and again was told that it probably wasnít anything to worry about. The biopsies showed up Lichen sclerosus and VIN III to each biopsy (all taken in different places).

    My gynecologist has told me I will need a partial vulvectomy and depending on his findings, may need some lymph glands removing. Iím having surgery next Wednesday. Yesterday I had an ultra-sound on my womb and my doctor called me at 9pm last night to tell me I will need my womb further investigating during surgery.

    I donít think its hit me yet. Iíve read lots of info on what I have and the procedure Iím about to go through but I donít know how much is being taken away or how scarred and horrendous Iíll look after.

    Unlike other women with this condition, Iíve had no itching, no bleeding, no lumps, bumps or warts. Iíve never had any symptoms of Lichen sclerosus
    but I have had symptoms of Linchen Planus. Iíve just always been reassured that the little paper type cuts on my skin are nothing to worry about. Turns out this condition which remained undiagnosed since my teens, is the very thing that has led to VINIII

    Anyway, fingers crossed the beast will be well and truly eliminated next Wed and I'll come home with a vulva that still resembles female bits!

    I'm not scared, I'm just a bit annoyed with myself.

  2. #2
    Moderator Top User jorola's Avatar
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    May 2014
    Location
    Alberta
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    Hello,

    First off, I am sorry for your diagnosis and to welcome you to the club no one wants to be a part of. Please don't be annoyed at yourself. The jury still seems to be out on the cause of Linchen Planus and if it leads to cancer or did your doctor advise you differently? Either way, hind sight and all that. It is good you are researching what is to come but please be careful of what sites you are using. The internet can be a very useful too but Dr. Google himself is not a very encouraging fellow.

    Are they planing other treatment after your surgery such as chemo or radiation? Or are they just first wanting to do the surgery and go from there? The one thing is that your treatment is moving along quite quickly which is good.

    Please keep us posted on how you are doing. For now I am leaving your post in the general area until I Speak to the other moderators to see where area you best fit under.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto

  3. #3
    Newbie New User
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    Jun 2016
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    Thank you Jarola. It would be good to know where I fit in.

    My gynecologist explained that the test for both LS and LP is the same one and although it will always come back as a positive for LS, that doesn't mean it isn't LP. We talked about the paper cuts I often get on the crease between where my legs join my body and he said it sounds very much like its LP and not LS. I was the one who looked it up on google and read that it does put you at a higher risk of squamous cell carcinoma. I understand your warnings about google but the one thing google has given me is half a dozen prudent questions I will be asking the registrar before my surgery next week.

    As long as its in situ, there will be no chemo or radiation.... Fingers crossed.

  4. #4
    Senior User
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    Aug 2015
    Posts
    108
    Hi, I just wanted to extend my support. I hope all goes well next Wednesday. It is very good that your doctors are moving quickly. My cancer diagnosis, staging, and treatment happened really quickly and because I didn't have any reason to suspect I had cancer, I felt kind of blindsighted. On the flip side, I didn't have much time to dwell on what could have been. We had to act fast. It sounds like you are staying calm and rational, and preparing your questions for the docs- all good things. Fingers crossed that you won't need chemo/radiation but if it does come to that, know that you can get through it. I did. Wishing you the best.

  5. #5
    Senior User
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    Jan 2014
    Location
    Colorado
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    Hi DemolitionRed,

    I don't know much about lichen, but I have had 3 vulvectomies in the past 3 years. One was for 1 mm deep melanoma on the right and described as a radical vulvectomy, two were partial, with the third partial vulvectomy being for in situ melanoma. In my case, the 2 partial vulvectomies, the second for in situ melanoma, were both on the left and removed very little and left that side of my anatomy looking very much like the original. Hopefully, that will be the the case for you too!

    It sounds like at this point your diagnosis is precancerous with surface-level abnormal cells, if I understand it right, and the doctor is not yet sure whether you will need lymph nodes tested. If you do, in my case the lymph node biopsy incision was not deforming at all, just a bit longer of an incision than I expected. I actually had one on each side and they have healed very well.

    At any rate, I hope this applies to your situation and may be a bit helpful! My understanding is radical vulvectomy is not done for in situ processes, and with partial vulvectomy hopefully you will come out looking much like you did when you went in. That was my experience anyway. Hoping it will be yours too! But please don't be shy about asking your surgeon what the cosmetic result will be. If you are having the vulvectomy on one side or the other, like I did, you may notice a bit of unevenness, but again, if it is partial, the unevenness may be minimal.

    I will keep my fingers crossed for you that it is in situ and there is no lymph node involvement or uterine involvement!

    I hope you will keep us updated on how you do, and will be thinking of you Wednesday.

    BTW, I, too, was mad at myself for not noticing a growing vulvar melanoma until it had gotten to be 2 x 3 cm! My husband did not notice it either, but to me that just shows how hard these things can be to notice. In fact, even with a deeply pigmented melanoma that large, when I first went to see my GYN in a panic, legs in stirrups, ugh, he had to ask me where it was!! That is how hidden things can be in that region. So don't feel too bad. I still feel bad for not going in for regular annual exams, but then I remember the nurse practitioner telling me that married females do not need exams more than every 2 years. Being one to avoid those exams at all costs, I had gone 3 years when I discovered the cancer. No point in beating ourselves up. It is such a strange place to get cancer in the first place!! If it hadn't started to itch, which is common with melanoma as it advances, I am not sure when I would have finally noticed it! At any rate, I am so glad you caught yours at what seems an early enough stage to be in situ! I will be hoping that turns out to be the case at surgery!

    Best of luck to you!

    Cheri
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016

  6. #6
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Location
    Alberta
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    Oh yes Red by all means research. Sorry did not mean to sound like I was saying NOT to. Just make sure you are using good sites and not Joe's site lol. There are many of those out there and are now designed to look like they are affiliated with more reputable site like the Mayo Clinic etc. I can tell you are using you head so you will be fine. The internet has opened our world to so much knowledge. I agree with you too in that it helps one come up with questions to ask that you may never thought of before!

    Best of luck!

    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto

 

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