Scared of what is to come

Hi

I was diagnosed with Vulva cancer last October at 36. Like yourself mine is HPV related. I also have AIN 3 but this hasn't been treated yet. I had a total vulvectomy in February to remove the cancer and also widespread VIN 3. I then had my groin lymph nodes removed in April as the cancer had spread to them. I finished radiotherapy and chemotherapy at the end of August.

It is apparently a rare type of cancer, especially in women our age. I also found that when people ask about which cancer I have most people don't know where or what the Vulva is! (Particularly men)

If you have any questions or just want to chat please feel free to message me. 

XxX

Thank you for telling me your story, I do find it hard to try and explain to people when they ask what cancer I have it feels embarrassing if I'm honest, I have ain 3 on my vulva and same on my anal as well as they have found cancer on my anal, thank fully mine has not spread to my lymph nodes and they can contain what they have found at the moment. Which they said they will keep an eye on doing mapping biospys in surgery and remove when needed. I just feel like I don't know when this will end.... such a weird weird feeling x 

I am 58 and just been diagnosed  with vulva cancer , I have to go to hospital  on Monday to dicuss treatment, I am so scared. I suffer from agrophobia and panic attacks . And this is making it so hard. Help

Hi. I am recovering from vulval cancer. I had an op 3 weeks ago to have it removed. I was terrified but it's not as bad as you expect it to be. I had lymph nodes removed too both sides. I'm not feeling too bad to be honest. Ask questions beforehand. You will be OK. 

Hiya Lynnh,  what stage was your mine is 3 , I have had biospsies done and up to now they think its only in the one place, How long was you in hospital for? they are talking of taking out my lymph nodes to. I am so scared xx

Hi. Consultant thought it was stage 3. Lymph node results came back fine even though consultant said they were enlarged. I only had cancer in my vulva. I was in hospital for a week. 

I have no pain at all but I am struggling a bit with lymphodema. I do find that a bit hard but otherwise I am OK. 

Hi

I had stage 3c vulva cancer. I also had my lymph nodes removed from both sides of my groin. I was in hospital for 10 days and on bed rest for the first 6 days as I had a reconstruction after the total vulvectomy.

I was scared too but the hospital staff really looked after me and explained everything really well. My pain was well managed.

Lynnh's advice is really good....make sure you ask questions if you're not sure about something. Maybe write some down before you go as it can be a lot to take in and you might forget what you wanted to ask.

Xx

Did you struggle with lymphoedema? I am scheduled to get full lymph node removal and am very nervous for lymphoedema and nerve pain. I cant find anywhere the prevalence of this sadly. Looking for some real people

Hi

No ...not yet anyway. I was told that the chance of me getting lymphoedema was 50% but since the end of my treatment almost 2 years ago I've been okay. I make sure to moisturise my legs well and I use an electric shaver instead of a razor blade to reduce the risk of cuts. I also try and sit with my feet raised if possible. I don't have any nerve pain at the moment but I am very numb at the top of my thighs. Let me know if you have any other questions.... I'm happy to chat and answer them. Xx

Hi, Im 57 and had surgery in November 2023 where my lymph nodes on both legs were removed. My left side were enlarged and therefore the nerves were damaged and my thigh is numb half way down and I have a slight weakness in that leg when walking so I now use a stick. I’ve suffered with slight lymphoedema in the left leg which I have a pressure stocking to wear at night whilst sleeping. I go to Lymph chair yoga which I feel helps so that maybe something you could try. I should do exercises to help reduce swelling but I’m terrible at remembering to do these things.