Welcome to Cancer Chat Amaya although I'm sorry about your diagnosis.
I've had a quick look through the forum and found that [@Lifeworm] was diagnosed with vulval cancer last month so hopefully they will pop by when they can and let you know how they're getting on.
We also have some information about vulval cancer on our website but if you'd like to have a chat with one of our cancer nurses about this you can contact them on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.
I know this must all be rather scary at the moment but our community are here for you and will do what they can to support you on your journey.
Hi I was diagnosed with stage 4 vulva cancer in December they operated in February as it was very advanced i then had a 6 week gap then radiotherapy and chemo as mine was advanced we are a rare group and as I was under 50 it is even more unusual here to help if I can trust the docs they are fab dont be embarrassed and stay positive ive just been told no signs of active cancer so !!
Hi hope you are well. I am getting operation on Tuesday. They have been very quick as I was only diagnosed a month ago. Not sure of what stage I’m at as they intend to remove 1 suspicious lymph node from my groin. Depending on the results of that will determine rest of my treatment. Did you have your lymph nodes removed! How were you after the operation?im dreading it
Yes I had all my right side lymph nodes groin and lower abdominal removed but honestly the docs and nurses couldn't have been nicer or kinder I am a stubborn woman and refused to sit around moping so was up and about pretty quickly (following advice as much as possible).
I have been left with lymphodema in my right leg ( not everyone gets that ) but lymphodema nurses have now given me special stocking to wear ( not sexy ones lol) and that has really helped . My best advice is listen to your body if you are tired rest if not get up get moving gently I think fresh air and gentle exercise are great for healing body and mind dont dwell on the negative its so easy to sit and think of all the bad that could happen I have found take what comes and deal with each thing day by day is easier dont let cancer be your life its just an awful part of it that can be beaten !!! Look to all the other things around you that make you smile and keep those in your mind instead
Thankyou so much . I am very positive and you’re right the doctors and nurses have been brilliant. I think because of covid just now you feel a bit alone. I have been my sisters full time carer( she has lung cancer) for the last 18 months and I was able to be with her through out her treatment. I think the closer to Tuesday I’m getting the more sorry for myself I feel. Lol. I’ve been on my own in isolation for 2 wks. Don’t think mentally that has helped. Then I have to take myself to hospital no visitors. Rereading this I think the covid is what has me feeling low. Im so glad to hear that you were at stage 4 and are doing well now. Were you able to go back to work?
Yes as I had my surgery just before covid hit hard and had chemo etc through full lockdown I do understand it can be lonely but talk to people laugh as much as you can watch stupid happy films listen to uplifting music etc I went back to work in August, I won't say I'm not tired after an 8 hour day but its worth it human contact is important as is having something else apart from cancer to think about do you have someone to help with your sister while you have treatment ?
She is going to stay with another sister. My daughter is going to come and help me for a couple of wks. She has a 9 year old daughter who I absolutely adore . She will also be here and I’m sure will help my recovery. Do you find it embarrassing when asked where your cancer is? Someone asked me at the hospital when I was there for scan... I told her I had cervical cancerI laughed my head off when I was told the vulva specialist was coming to see me. Thang god someone thought it interseresting enough to specialise in it
I do still find it a bit weird as no one has ever heard of vulva cancer ! There isn't a specialist in it at my hospital but my gynecologist and the two plastic surgeons I had do my op were amazing I tend to say the truth to women and same as you if its a bloke purely because I think people need to know it does exist !! Glad you will have support and someone to laugh with
