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 shazza...

    I'm fairly new here myself. Sorry to hear about you diagnosis. I'm not familiar with your own situation but I'm sure someone on here will be able to offer you some advice and specific information.

    It's a worrying time that's for sure.

    Telling family is tough but I reassured my daughter by being positive and explaining that treatment for cancer is so much better than it was years ago.

    Everyone goes into shock and panics. It's normal. I've told my daughter that she can ask me anything. Doesn't matter if she thinks its a silly question or if she thinks it will upset me. So she knows everything she wants to know.  She's 15 and its an awkward age nearly an adult but still my baby!

    I still cry when I need to I'm not super woman. And my daughter is very open about her feelings. Sometimes i get so wrapped up in my own stuff I forget that she is worrying too.

    Oh telling your mum is never going to be easy. If she knows you are getting your head around it and getting support from everyone then

    I think that might help. Good luck.

    Will be thinking of you tomorrow. Sharon xxx

  • Hi Sharon

    Thanks so much for your reply and advice. Sleepless night as to be expected I guess and very nervous as to what the next few hours hold. I will hold off telling family and friends until I know more about my situation and treatment plan. It's reassuring that people like yourself are here and willing to chat and offer advice and share their own experiences. Thank You

    How long have you been dealing with your situation?

    Thanks for your kind thoughts and will provide update later today I hope xx

  • Hi All

    Well today was quite difficult to say the least...I had my appointment with the Gyn and outcome being they suspect that there is still some carcincoma remaining. Plan of action is to remove a wider area, perform a skin graft to maintain functionality and try to keep things looking pretty down there ...4 weeks later they will remove all of the lymph nodes in the groin area. On pulpitation of the nodes it appears nothing out of the ordinary could be felt...I guess this does not mean that it has not spread but I am hoping that it is a good sign?? The removal of the nodes is being treated as precautionary, rather safe than sorry I guess....The nodes will be biopsied on removal and further treatment will no doubt be based on this outcome. It is likely that I will also receive radiation treatment after the surgery and the area has healed sufficiently for this to be done. The logic with this is that radiation damages the skin and therefore if radiation alone was done first and it is not succsessful surgery thereafter would be more complicated and problematic. One concern they do have is how close to my rectum this area is and I can only hope and pray that it has not spread there also..

    Could anyone share with me their experiences of lymph node removal in the groin area as well as radiation treatments and what to expect?

    The other thing I would be interested in looking into is boosting my immune system and complimenting my treatments with natural remedies and cancer fighting foods / herbs etc..anyone else been down this road?

    I am trying to stay positive but i feel emotionally, mentally and physically exhausted already!! It was hard to watch my husband break down and sob today. We have decided not to mention the C word to the kids, the surgeon felt this conversation is a bit premature as he is hopeful that we can deal with this.

    Thank you for listening xxx

  • Hello shazza40,

    Thanks for updating us on how today went. I am sorry to hear it was difficult; you do seem to have a very supportive and sensitive husband and I hope that you will also find some comfort in talking to others here who can truly understand you.

    I thought I should also stress how important it is to inform the consultant who is looking after you about any supplements you are taking even if they are herbs or natural remedies as these can sometimes interfere with your treatment. We have some information about alternative and  complimentary medicines on our website at this link.

    Very best wishes,

    Lucie, Cancer Chat Moderator

  • Hi Lucie

    Thanks so much for your kind words, my husband is an amazing person and i am so fortunate to have him in my life. It's hard to see someone you love hurting and I will be there for him too, he is as much a part of the process as I am and we so often forget how our partners are feeling and coping?

    In respect to alternative treatments, I totally agree that it has to be done in conjunction with your medical team, I only take a daily Vit C (1000mg) and multi vitamin (which my pre op nurse is aware of) and my thoughts on this was more to cancer fighting food groups to include in my diet. I have read that certain foods are reccomended whilst having treatments (spinach, broccolli etc) and some are not (white breads, sugars etc). I will certainly look at the link you have included, I guess I just want to get my boxing gloves on and try to help myself too.

    Thanks again Lucie, it is really appreciated to have people take the time to read and respond to posts, even if just to say a hello. It'snice to know there is a support system in the form of this forum.

    Regards

    Shazza

  • Big hug from me Shazza will be thinking of you and watching your progress.Annabel.

  • Thank You Annabel, and to you

  • Hello again

    Just popped in before I go to bed to see how things went.  Oh it sounds like you've had a lot to get your head round. Your hubby sounds like a real nice guy. And I think you've been given some sensible advice about breaking the news to the kids. You'll find the right moment soon enough.

    You were asking about radiotherapy treatment but to be honest everyone I've spoke to has different experiences so don't listen to all the horror stories.

    I've got rectal cancer. In my 3rd week of 6 at the moment if chemo and radiotherapy. I'm doing a clinical trial with a cream called Gutlife. I know what a lovely name eh lol. There's  me and another woman using it. She's further ahead with her radiotherapy and so far her skin has remained pretty healthy. Apparently it stops the skin cells from breaking down. So I'm hoping I get the good results that she's having. Radiotherapy is very quick and painless. Nearer the end if the treatment some people experience symptoms of something along the lines of sunburn. So becoz I'm getting the old nether regions treated its a bit delicate down there do they've given me this cream to try.

    My diet is the complete opposite to yours so I can't advise you on that. I've to stay clear if fruit veg high fibre etc. the one time in my life I get told not to eat healthy and all I'm managing to eat is jelly ha ha 

    Sending you lots of luv and hugs... Take care huni.  Sharon. xoxo

  • Hi Sharon63

    Thanks for the info, I think I can be my own worst enemy in trying to obtain toooo much info lol...I am learning to take information via the internet with a pinch of salt hard as it is...I guess each experience is individual and just to have some knowledge of what to expect is better than not knowing at all especially if you are a 'ponderer' like me. I really hope you have some success with your treatment, you sound so positive and a sense of humour to boot! Please let me know how you are getting on, it is just such a relief to be able to chat to people going through similar. I am trying to stay light hearted as I know my diagnosis so far could be a lot worse and for that I am truly thankful. The things our bits have to go through hey!! I can do Jelly lol...I may even consider adding a dash of Vodka lol......

    My hubby is wonderful and bless him, he is trying to be strong, but alas we all have our limits and in a way I am glad that he broke down today as this is a way for our minds and bodies to release stress so as hard as it was to see, I think he felt better after. He felt really positive about the team that we met who will be doing the surgery and offering support so that was also comforting. We try to be as open as possible with our kids but the surgeon seemed really positive as to achieveing a good outcome and thinks we should just hang on as this can be so distressing to kids especially teenagers. He did say that it is up to us as to whether we want to tell them,  Hubby and I have decided that until i get told otherwise we have to be positive that my treatment outcome is good and if we can spare them the upset and pain and uncertainty for now especially as my eldest is in her last 6 months of Uni and doing exams and my other daughter is doing GCSE's, (already stressful times for both of them) so I guess we have to ensure that they also get the support they need especially in dealing with their own stresses, Life is hard enough at their age without me adding to their lot..

    Thanks again for writing and chat soon, xxx

  • Hi All

    needing to vent..........feeling very stressed, worried, down today, I think the reality of everything is hitting home, starting to think all sorts and wondering if this ache or that ache or this itch or that itch is something to be concerned about. Feeling very stressed over my surgeries, mainly the removel of the lymph nodes, this seems like such a drastic surgery?? Wondering now if this is a secondary cancer or primary area, not yet had my smear done (about 10 months over due due to dealing with this issue) worrying over that now as I am wondering if there is a link between cervical cancers and vulvar cancers,  I have one of these am I likely to have the other?? having read some personal stories on the net (granted some were many years ago and science has come on leaps and bounds) but surgeries were similar and I feel even more desperate now...I have left a message for my assigned nurse to ring me as I need to ask all these questions so I hope she rings sooner rather than later...what a day to day is going to be!!