Diagnosed Today - Vulvar Squamous Cell Carcincoma

Hi all, I today receievd an unexpected (Well I was hoping it wasn't) diagnosis of Vulvar Squamous Cell Carcincoma Stage 1B. I am numb at the moment (wine is helping :0)) and am trying to prepare myself for the road ahead. I am 40 years old, married with 3 kids aged 21, 16 and 7 and although I am trying to be positive I can't help thinking that the road ahead is going to be rocky. I am seeing an Onc Gyn tomorrow and I understand further tests and surgery will follow. I presented with what was suspected as HPV warty lesions and removed surgically 5 weeks ago. Histology of biposy received today shows good margin around area removed hower my Gyns advice is remove a wider area. He cannot confirm that it has not spread beyond. Advice is to have further surgery to remove a wider area and to check lymp nodes. I am quite surprised at how little information or support is available for this type of cancer so I would love to hear from anyone who has been in my boat. I of course would love to offer support to anyone going through any type of cancer, I am a little tearful but I am determined to do what I have to to beat this, educate people, especially my daughters(and son!) and i truly believe that knowledge is power and with the right positive support we can all learn, support each other, educate others and achieve something regardless of our long term prognosis.

My mind at the minute is very much with how to tell my elderly Mom, family and friends and decided to wait until after my appointment tomorrow before making this decision. This is a toughy!! Any advice?

Thanks for reading

  • Thinking of you Shazza and praying that all has gone well. xxxxxAnnabel.

  • Hi ladies, just a quick hello from hospital lol...surgery went well, surgeon positive so lymph nodes to go yet but feeling a lot better and more positive about outcome. Very little discomfort due to surgery, so feeling quite good! Miss all our chats lol so just to say hello and hope to be home tomorrow when I can write some more. Hope you are all well and thanks for being there, I am so lucky to of met all of you lovely people! Hugs..xx

  • Hi shazza,

    That is great news, so good to hear from you, have been thinking about you lots, good that the surgeon is so positive, makes you feel so much better, they see so many cases and know what they are looking for. Great that you are feeling so good too so hopefully you will be home tomorrow, take care of you and let us know how you're recovery is coming along xx

  • Hi Shazza,

    Thats great news that you've had it done and you've little discomfort. Hope you get home tomorrow before more snow arrives. Big hugs and more chats when you've settled in at home.

    Annabel.

  • Hello....I am new to this site. I may not post often, I don't know if it helps talking in this type of forum.

    I was diagnosed on Dec 18 with early stage of squamous cell cancer, but when I saw my oncologist on Jan 15, she said it was not Stage 1.

    So, 3 days ago, I had a radical hemi vulvectomy with both lymphnodes removed.

    I was in the hospital for 2 nights and am now home. I walked inside the house today to the distance of approximately .60km!

    Next step is waiting to see if they got enough margins with the incision.

    Trying not to go on the Internet too much because, quite frankly, most of the sites freak me out!

    Blessings to All...

  • Hi ladies

    Seen surgeon this morning and will be home today still a way to go as need to wait for biopsy results to make sure margins are clear and 4 weeks till lymph nodes surgery and of course further waiting for results. Feeling much better and more positive and I could not of come this far without the support and care of the people on this forum. Positive vibes, hello, thanks for chatting, I really do feel that a problem shared is a problem halved it has been one of the scariest times in my life and my journey is only beginning but I truly believe that my journey so far would of been a lot harder had I tried to do this on my own. There is a lot of positive information on the Internet BUT there is also a lot of negative and I too was googling like mad to try to find out more and it scared the living day lights out of me so I too would say limit what you read, you are not a statistic, you are an individual and with the right support and medical team anything is possible. I agree, the waiting is the hardest part but try and stay positive and do chat to the ladies here as the support and sharing is what keeps you sane! Xxx

  • Hi ladies I would love to hear how you are all getting on, I am having investigations at the moment and there isn't much reassuring information out there I can find 

    natalie x

     

  • Hi Natalie

     

    i am here today as I too will be having investigations done.  How are you getting on? Have you had a diagnosis yet? 

     

    I am 32, pretty scared to be honest.  I have young children and although I don't actually know what it is, my dr is referring me as an urgent case for cancer testing. X

     

     

  • Hi Sarah,

    sorry I have just seen this msg. I had a biopsy and the results came back as "HPV changes" my dr isn't worried, she will keep an eye on it, she says hpv often clears on its own. I still occasionally have discomfort down there, it's really sensitive skin so things aren't completely sorted.

    how did you get on? Xx