Newly diagnosed with cancer of the vulvar

Hi Jo

I was diagnosed with stage 3c Vulva cancer last October. I had a total vulvectomy, reconstruction and a Sentinel lymph node biopsy in February. The lymph node biopsy showed that the cancer had spread so I had all my groin lymph nodes removed in April.

I finished my 5th session of chemotherapy last Thursday and I'm nearly at the end of 25 radiotherapy sessions.

I was diagnosed with HPV some years ago....I have always had pre-cancerous changes on my cervix, which also spread to the wall of my vagina. I've had numerous biopsies over the years on these areas which always show high grade changes. 

I also have AIN 3 around my back passage which I will need an operation on at some point in the future. This is making me quite nervous because I keep thinking what if it's developing into anal cancer whilst I'm getting treatment for my vulva cancer?

I'm really surprised that they did your biopsies under local anaesthetic!! That must have been super painful! 

If you have any questions or just want to chat about what you're going through please feel free to message me.

XxX

Hi Jo,

So sorry you are going through all this. I was diagnosed with Stage 3c Vulvar cancer last year. It also had split off and I had a tumor in my groin that had to be surgically removed actually just a year ago. I had a pretty large growth on the side of my vagina and some spots inside my libia. My Dr originally wanted to surgically remove them but sge had another colleague look at it and he was against it because it was too close to my anus. I ended up having 7 chemo and 37 radiation treatments so I understand the pain! They actually put me on a liw dose fentanyl patch that helped a lot! You may want to ask about that. 
Happy to report that the growths and spots are completely gone and I had my PET scan in June and I am currently cancer free. 
There is hope! If you are not comfortable in what they are telling you ir what they want to do, please please get a second opinion. 
pretty sure mine derived from HPV as well. 

Hope this brings you some insight and hope!

Adriane 

Hi Pharm tech, I too have the HPV virus, which can also contribute to anal cancer, but my cancer gynaecologist said they were definitely NOT related???
Having my 3 biopsies done under local anaesthetic was the most painful thing I have ever experience, especially as they were injecting the anaesthetic into what was an open wound that looked like an ulcer, a very hard, painful solid lump and raised thick weeping areas of skin. 3 continuous days of labour was easier!!
Can I ask what stage 3c cancer is and what AIN 3 is? Considering I have been fighting cancer already I know sod all about the terminology; nothing like that was ever explained to me.I feel such a fool to be in this situation once again and yet be so ignorant.

If you could keep me updated on your journey I would be so grateful…..it’s just so reassuring to talk to someone who is going through the same thing.

Please feel free to ask me anything 

Jo x

Morning BeeStrong,

Thank you for replying to my post. Another lady said that she had stage 3c cancer, but I have no knowledge about stages…..pretty silly seeing as I have had treatment for cancer before…..but these are things that have never been explained to me. 
Trying to find out any reliable information about vulvar cancer is pretty impossible to find. I would love to hear more about your journey if you are willing to share it.

You sound like a very positive person. I wish you well,

Jo x

Hi CraftyJo

I have put in the link from Macmillan which describes the staging of vulval cancer for you.

I’m surprised to see that you were told there is no link between hpv and anal cancer. Having a cancer caused by hpv myself, I’ve always been under the impression it was a significant factor in anal cancer too. 

AIN  describes pre cancerous cells in the anus, and 3 describes the level of abnormality of the cells, with 3 being the most abnormal. 

https://www.macmillan.org.uk/cancer-information-and-support/vulval-cancer/stages#staging_of_vulval_cancer

Sarah xx

Hi Sarah

I always thought this too with HPV....I'm coming towards the end of vulva cancer treatment but I have AIN3 and thought this was caused by the same virus. 

Hi Pharm tech

It absolutely is in my understanding, just like CIN (pre cancerous cells in the cervix) is caused by hpv. 

Sarah xx

Mine all started with CIN, then VAIN and finally VIN & AIN. My body just won't seem to shift this virus.

You've been through so much! You sound like an amazingly strong person. Xx

Sometimes I felt strong, sometimes I was weak, curled up crying with pain. But always I had that spark of determination just to get through it all…just a day at a time, sometimes an hour at a time. I just did what I had to do, and didn’t ask too many questions! 

Coming up to 4 years since my original diagnosis it seems sometimes like it’s all a nightmare in the distant past. Other times my ptsd reminds me it was very real. I do feel very blessed and lucky to be here still, so I want to make the most of it while I can! 

Sarah xx

I don’t understand what CIN and VAIN are, or the other two. I certainly don’t feel strong, in fact I feel like I can’t cope with fighting another cancer again. Does that make sense?