Vulva cancer Stage 3 Squamous Cell Carcinoma

[waitingforthedaffodils]

hi. I wasn’t sure whether to post here or not. It feels almost like a heavy admission to be on a cancer forum you know? But then I remembered the support I have found on this and other forums when I have been in need and also I want people to know my story as a warning and to recognise the symptoms so here goes

i am 44 with DP of 20+ years and DD1 (19) and DD2 (15). I have been on Mumsnet since my babies were born but name changed several times and changed for this post especially. My story is rather unique and vulva cancer rare for my age so if I am identifiable I don’t want it connecting to other stories I have posted!

Following the birth of DD2 who came fast without pain relief save for gas and air I have a perineal tear. I refused stitches at the time as I was exhausted, emotional and desperate not to be touched anymore. I had no numbing and was afraid of being injected. Not a wise choice at all but there we go. I can’t go back and talk to 30 year old me.

The injury didn’t heal particularly well. It was lumpy and bumpy and occasionally I would catch the skin lip and it would hurt. But never debilitating or particularly bad and it didn’t stop any vital functions so I just lived with it. Over the course of years it is just one of those things I have always thought I really should have gone back for that at the time.

in recent months however I noticed changes. Really really gradual but it became itchy and sore. I don’t really know how to explain this but a) I have never heard of vulva cancer. b) I didn’t ‘look’ at it c) it was so so gradual but eventually I thought I want to go and get it checked to see if there is anything they can do to surgically fix it. I felt so ashamed and stupid that day.

Anyway, I saw a wonderful lady that day. She sent me away with some cream first and also immediately booked a return appt for the following week for fear I wouldn’t come back. I went back a week later and she immediately referred me on the 2ww pathway for seeing a gynaecologist. Her words were ‘I don’t think it is vulva cancer as you have had it so long and you are very young but you need it sorting as it is painful so let’s push this pathway’.

Saw gynae consultant who took a biopsy and also my cervical smear that was LONG OVER DUE. He was lovely. He was a surgeon and said he fully believed we could fix/reconstruct and ‘I don’t think it is cancer but there is a little darkening at the edges so I will just take biopsy to be sure’

then my smear results come back too so high grade abnormalities (VIN3? I can’t remember). Appt to attend Hospital and as I sit on the chair where I am fully prepared to refuse colposcopy under local having had it years before she tells me the other biopsy results are in and I have vulva cancer.

so my world falls apart and here is where we are now. I have Stage 3 squamous Cell carcinoma (yes a type of skin cancer) on the vulva which is likely from HPV for which I am also positive. I had high grade abnormal cells on the cervix which could lead to cervical cancer.

i have had CT, PET and MRI scans. I have no secondary cancer seen elsewhere but do have cancer in one lymph node in the groin (inguinal area?)

this week I had a LLETZ procedure under general anaesthetic to remove the abnormal cells from the cervix. They will be tested for cancer. I don’t know if it will make much difference either way as all scans showed no cancer there right now so if positive very early stages and will be captured by the course of chemo and radiotherapy.

They cannot remove the tumour which is 3cm as it is too close to the anus and there is no healthy margin to connect to so I have to have chemo and radiotherapy first.

Up to now the hospital have been amazing but I still haven’t spoken to any of the oncologists because I came in through the surgical pathway. It is frustrating because I just want to understand how I am moving forward. What does treatment look like? What are the side effects? I believe pelvic radiation can be quite damaging on the reproductive system, bowls and vaginal canal. I want to talk to someone about that. Friends and family have been wonderful but none of them ever heard of this type of cancer either.

anyway there is so much more I could say but I went on long enough. If you read this far thank you so much. If you have experiences you can share please do. But mostly thanks for giving me a place to ramble!

This is really good to read. Did you have external radiotherapy as well as brachytherapy? Did you not have any painful or burning skin? This is something I am dreading. I have a little pain now but I am expecting much worse. It’s reassuring to hear your after effects are relatively minor as well. The stuff I have read would have me belong am going to lose all bodily functions!

Yep did 25 external pelvic radiation. No I had no skin soreness or burning (they will give you cream for it if you do though) lost a fair bit of pubic hair though.

it is hard going, I was shattered towards the end but that was partly my own fault for working.

I think people only post on the forums when they are having issues, nobody will post to say they are doing fine. Some people have a really bad time of it.

just keep drinking all the water the Cisplatin/radiotherapy can be brutal on the kidneys and bladder. I think staying fairly active helped as well.

Keep ticking the appointments off, that really helped me.

really hope it goes as well as it can.

Just wrote a whole response to this and went to edit after preview and it disappeared. Rage! Anyway?’c very reassuring reply thank you and gives me optimism. My tumour is external so the strongest rays are targeted at perineum where the tumour is. This is limiting my physical activity as any friction causes bleeding, weeping and subsequent pain. That’s the actual cancer so the radiotherapy which initially improved the issue has now started to make it more sore and sting as it breaks down the cancer and the skin breaks down a bit too. I have creams which I use religiously. I will definitely have burning and soreness but I am hoping it doesn’t become debilitating. Honestly proper to treatment I was already in some pretty bad pain so actually things have improved. Nausea not bad but I do have some stomach grumbles, loose stools etc. None of it fun.

I am tired already but again not as exhausted as I thought I would be. I expected to be almost bed bound with wet chemo but that is definitely not the case (though naps have been had). You might be insane for working through it though. I’ve been signed off for 3 months and I expect I may have to extend that though only because I will likely need some kind of surgery after all this to repair the scar tissue and original wound and remove anything that’s left.

Another one who has had pelvic radiotherapy and cisplatin followed by brachytherapy (cervical)

It is knackering - I had to do the bladder holding and an enema every time and tbh that was the worst bit - the frustration when your bladder wasn't full enough/was too full.

Other than the tiredness, the only side effects I had was developing a DVT which was deemed to be caused by either the chemo or the cancer itself. I think that's pretty uncommon though, my oncologist certainly thought it was. My skin got a little tanned but never sore, although they have cream if that is the case.

My bowels and bladder still function fine, and I have a normal sex life - although it's certainly a bit more snug down there!

It put me into menopause which has been fine, I'm on hrt to protect my heart and bones and so far as I can tell, I think it's perhaps easier going straight to menopause then it is to go through peri.

It's no-ones idea of a barrel of laughs, and it is so so intense but the one plus side is that it's relatively quick and the days do tick off. I remember how daunting that list of appointments was when I first got it.

The first two weeks post treatment I was absolutely bone tired - be prepared to feel worse for a short while post treatment. By four to six weeks I was back at around 80% - 90% of where I was before. Three years on I'm maybe 95%, and I suspect that 5% may be gone forever, but I'm here, healthy (touch wood) and fully living life.

I hope your treatment goes well. Remember a lot of what you read online is because people are having a tough time of it and are not necessarily representative - kind of like the relationship board on here!

@waitingforthedaffodils it’s a gruelling regime and it sounds like your doing amazingly well. If your struggling with the soreness then definitely mention it, they might have something up their sleeve.

I remember not being able to trust a fart for a good while. I struggled with appetite towards the end and anything spicy was a definite no.

wishing you all the best with it.