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

  • Hi Annabel

    How are you feeling? I hope your surgery went as well as could be expected? Glad you feel well enough to visit us

    I'm doing OK, up and down days, as to be expected I guess. Just want to get my surgery over and done with now, They said that I would be in for +- 4 days on the first surgery, not sure how long for the 2nd? (I think they mentioned about 4 days for that one too).

    Please let me know how you are etc and thank you for thinking of me considering you should be resting!!! look forward to chatting and hope you are OK. xxx

  • Hi Poppy

    Thank you, I plan to take my ipad lol.....hopefully we can chat whilst i am in hospital! Surgery is Tuesday, although I wish it were Monday, just want to get it all going now. Hope you are ok and thanks for your thoughts.

    I have a question so please ladies if you can answer, much appreciated. Can SCC be present in more than one area of the vulva? I am not sure if it is my mind but I seem to be developing an itch elsewhere (up towards the clitoris) not painful urinating, skin appears fine but i am 'aware' of this sensation. (I am currently on my period so not sure if this has something to do with it?) comes and goes, not there 24/7, does not wake me up etc...panicking though

    Sigh....

    xxx

  • Hi shazza

    Yes I am fine thank you. Sorry I got the day wrong, I wish it was Monday for you too, it will soon be here though and will soon be over with. Sorry I can't help you with your question, I honestly don't know but I think the mind can play tricks sometimes and until you have your op you will think and feel all sorts, it's only natural to feel like that, you visualise this horrible illness spreading everywhere but one of the pieces of information that I was givien was that this type of cancer is very slow growing, that was one consolation so please do try not to worry,and I know it's easier said than done but you need to try and stay as stress free as possible to help you, if you can ,phone your nurse for reassurance , that is why she is there. Will be thinking of your hubby as it will be very hard for him too, waiting.... I think I mentioned that my surgeon told me straight after my op that he didnt see any more signs of cancer although obviously biopsies were still done but it was very reassuring to hear that and I am sure it helped with my recovery .

    I will be here to chat whenever you need to xx

  • Hi Poppy

    I think I am slowly losing the plot LOL, Yes, I think it is quite possible that once your recieve the diagnosis you all of a sudeen feel sick and senses are heightened so everything is wrong all of a sudden!!  I did read somewhere that it is possible but a very small percentage of people diagnosed present with multiple scc. I will mention it to the surgeon though as there really is not much I can do about it now considering how close Tuesday is Hubby is coping well and I think he too just wants to get the surgery done and start the treatments. He is going to keep himself busy buy doing some DIY whilst I am out of the house so I am sure he will be able to relieve some stress when he knocks the walls down I will ask my surgeon prior to surgery to let me know after his opinion and how it went, scary thought if they find anything else though...but I will have to face it regardless. I wish I could put all you ladies in my overnight bag and take you with me LOL!!!!

    Hope you are keeping well Poppy and managing to get your feet up! xxx 

  • Hi Shazza,

    I don't know about vulval itching but the moment I was told I had cancer I got all sorts of aches and pains. The days before I had nothing.  The oncology nurse said that was very normal. Well I am glad I am normal at something LOL. I think you are just going through that period of hightened awareness. One of my best friends suggested we play words on facebook. That has been brilliant for me, I now play my daughter ,my friend and my husband who is in the other room. How sad are we?, but I don't care. I shall watch out for you when you come back online and if you fancy a game contact me through the moderaters, will let you have email etc. All the best

    Annabel.xxxxx

  • Hi Annabel

    Yes online words sounds like a great idea! I will ask the moderators to connect us via email etc. I will no doubt be following suit in texting / messaging kids / hubby in next room, ha ha ha.

    Chat soon and hope your recovery goes well. xxx

  • Hello Annabel and Shazza40,

    How nice that you have so much in common and want to talk and play online words in private!

    We do have a private messaging facility which would enable you to communicate  privately with each other. All you and Annabel have to do is to request it-  If you would like to be able to send private messages,  please follow the instructions described here or just let me know and I will set it up for you. You can find out more about how to use private messaging in  our Cancer Chat tips here.

    Best wishes,

    Lucie, Cancer Chat Moderator

  • HI Lucie

    Many Thanks for your assistance, please could you set it up for me.Thank you

    Regards

    Shazza

  • Hello shazza,

    No problem I've now set it up for you! You won't be able to send a private message to Annabel until she herself requests it. So Annabel would you like it too?

    Lucie

  • Thanks Lucie, I shall wait for Annabel to respond. Much appreciated xx