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!

I worked with a wonderful woman who had exactly this. Is there no chance of removing it surgically? I would want the most aggressive treatment possible in your shoes. I’m so sorry you are going though this.

All the very best to you.

Sorry you find yourself in this situation
what is the plan, do you have a date to see an oncologist?

I have a friend currently undergoing cancer treatment and after a bit of a bumpy start she has a great oncologist and seems reasonably happy and confident (as far as she can be) with the treatment plan. The not knowing what’s going to happen is the worst of it by far.

I have to have my vulvalooked at every 6 months because I have lichen sclerosis which can apparently turn malignant. Interestingly it is in the exact place that I had an episiotomy many years ago. I’ve also had HPV colposcopy and cryosurgery in the past. But have not had malignancies so I can only imagine what you’re going through op.

i hope you get to meet with an oncologist soon so that you can get a clear idea of what is ahead for you. I hope that you make a full recovery very soon

I'm sorry to hear of this.
I do have experience of pelvic radiotherapy but it was for endometrial cancer so not sure that relating my experience would help, especially, as a PP says, indivduals can respond to the same treatment in very different ways.

FYI in case you haven't already found it, there is a dedicated 'Vulval cancer' forum over on the 'Online community' part of the MacMillan website.
Vulva cancer forum | Macmillan Online Community

I have nothing useful to add but didnt want to read and run.. Good luck to you. Xx

Sorry to see you here, I have head and neck cancer, primary tumor was my tonsil and spread to lymph nodes. Like you it's squamous cell carcinoma and caused by HPV.
I did start down the surgical route like you as they removed the tonsil and did the biopsy at the same time, that was the start of July and I believe it was early August until I saw an oncologist, I primarily saw my ENT consultant and surgeon. Once I saw the oncologist things moved quite quickly with a referral for fertility preservation prior to starting chemo and radiotherapy.
I finished both end of October and am at the waiting stage to see if it worked.

The stage you're at is horrific, there is so much unknowns and that's scary. I found once the chemo and radiotherapy started I felt much calmer because something was happening.
There's a thread Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment and everyone there is lovely and been a huge support to me. You'd be more than welcome to join us, hopefully someone has experience with vulva cancer, but at the very least you can talk, share your emotions and anger at this incredibly twatty hand of cards you've been dealt

Thank you for this. I have already had a look and joined the forum but that particular thread is not very active so not much current information at the moment.

Thank you all for your supportive comments.

to answer some questions, originally they thought it would be surgical because I went for reconstruction due to the scar causing pain. Once cancer was diagnosed and the oncology surgeon had a look she was probably looking much closer for the location and unfortunately there is not a clean 10mm of healthy skin before it reaches the anus hence ruling out surgery first. I believe the plan is to hit it with targeted radiotherapy with chemo to ensure the cells are primed to respond. Hopefully that will shrink the tumour and if there is anything left then they will look to surgery. Whilst I understand that surgery is gold standard I have to admit I am actually pleased to be going this route first. There are a lot of moving and working parts in the groin region and I would prefer not to have things such as labias, clitoris etc removed which is potentially the case with surgery. The scans show no cancer in the anus, vaginal canal or cervix for now and is on the perineum region only so I am really hoping the radiotherapy will knock back the tumour to either fully kill it or to shrink it enough for safe removal. In truth even if they do clear the cancer I may well need surgery to repair the fucked scar anyway but that is a long way down the road I fear. Also with me having cancer in the lymph node too it feels that I would always have needed RT and Chemo anyway.

i have not had any direct contact yet with the oncologist which is super frustrating. I haven’t been left without contact by any means and I know they have been having the weekly mdt meetings to discuss my case. Now I am done with all scans and the LLETZ procedure on my cervix there is nothing else holding up progression except the wheels of administration so next week I plan to start making a lot of phone calls. The NHS so far have been excellent and my surgical consultant is actually my hero so I don’t really have any complaints.

naturally I am terrified but I have, for now, let go of the ‘I am going to die imminently’ fear. Now my main fears relate to after effects such as potential lymphoedema in the legs, shrinking and tightening of the vaginal canal, painful sex, rapid early onset of menopause and responding to treatment and the pain. I am very afraid of the pain.

hand hold from me op. I had ViN3 about 10 years ago and luckily was able to have it surgically removed. It took a while from biopsy to seeming the oncologist, maybe about 2 months if I remember correctly, but once I had contact with him, it was all dealt with really quickly.

I cried when my dr told me he was retiring as he looked after me so well.

Hey lovely,

no experience of vulva cancer but I can help with the pelvic radiation. I did 25 rounds of pelvic radiation three years ago for cervical cancer. I don’t have an ill effects (at the moment). It’s hard going and puts you straight into the surgical menopause which is no walk in the park. Everything appears to be working as it should though.

i did cisplatin chemo (no hair loss) I’ve not suffered from lymphoedema, I think the key is to try and keep active during treatment.

the worst part is the waiting around for them to give you a treatment plan, it’s the worst part of the whole thing.

wishing you all the best.

Hello. I'm so sorry you're going through this 💐. I've no advice on the medical front myself, but The Eve Appeal are a fantastic charity specialising in gynae cancers. I've done charity events for them in the recent past. Please get in touch with them for support.

There’s a small private FB group for vulval cancer, UK only, which is important as US groups have different parameters. I’ve had enormous help from a similarly organised group for a different rare ( but not rare enough) cancer.
Don’t hesitate to see if the group may be able to offer you informed support.
All the best.

This is so useful to hear, thank you Jade. It’s hard to find info about pelvic radiation and a lot of what I read is pretty scary. I’m trying to build myself up beforehand with vitamin D, probiotics and just general better living but ultimately I just don’t know how I will react.

thank you for sharing your experience.

I did have a look at the Eve website but honestly I don’t find it very helpful. A lot of it seems geared towards prevention and smear tests etc. The stories on there from women with vulva cancer were terrifying and sent me into a total tailspin. I may have another look once my own treatment is underway though.

I may have a look once fb to see if I can find it. Thank you

as a general update, still no word from oncologists and no idea about treatment. The tumour itself is becoming more painful and itchy and I am just oh so keen to start getting rid of this thing.

@waitingforthedaffodils no problem, any questions I’m happy to answer anything.

there doesn’t seem to be much info out there about it. I took magnesium and Vitamin D as was recommended by my oncologist. I actually managed to work through it, it was a bit of a slog towards the end though. Everyone is different though.

radiation itself only lasts about 10/15 mins, absolutely zero pain at all. There was lots of waiting around though so take books/kindle/chargers etc.

hope you manage to see the oncologist soon and get things underway ASAP.

As I said in my earlier post, I have had pelvic radiotherapy, although for adjuvant endometrial cancer (intially treated via surgery) rather than vulval cancer, so my experience may be slightly different, especially as I'm post-menopausal, but this is what I found.

I had 27 external radiotherapy treatments and 2 of brachytherapy. The treatment itself was painless but took an awful lot of time out of the day, especially as I live an hours journey away from the hospital. I'm retired so luckily did not have to worry about missing time off work etc.

The first step was to have a couple of initial CT scans (first with bladder empty and then having drunk a certain amount of water) the results of which they radiologists used to work out the exact treatment. I got given several pinpoint tattoos at this stage so that I could be positioned exactly the same for each treatment. The planning took a couple of weeks before I could begin the radiotherapy itself, which was every weekday, with weekends off.

After arrival each day I had to wait for the nod to first empty my bladder and then drink a fixed 500ml amount of water and wait for it to work it;s way through so that my bladder had the same amount of fluid for each treatment - they checked bladder fullness with an ultrasound as the first stage of the process and if you are still too empty then you wait a bit longer or drink a bit more. If too full ,then you have to try to pee a certain amount out or start over again. Once your bladder is the right fullness then they'll position you on the radiotherapy table lining up the tattoos - the radiographers sometimes have to manhandle you a bit to get you in exactly the right position but they were very professional and courteous.

The first part of the treatment was a CT scan to make sure that your bowels are also empty - if not then they'd stop at that point and ask you to empty your bowel (they can prescribe an enema if it's a recurring problem). When and if they're happy with the CT scan then they'll go ahead with the radiotherapy treatment itself. They are only allowed to do two CT scans per day so if they are not happy with how full your bowel a second time then you just have to go home without treatment and they'll add another treatment on to the end of your schedule. That only happened to me once but there were several long days where it was a case of having to restart filling my bladder etc....

Side effects were minimal for the first couple of weeks but then had increasing diarrhea, which my CNS (Cancer Nurse Specialist) prescribed tablets for, which helped. I had a weekly review with her to discuss any side effects etc. I was also given cream to treat any skin problems resulting from the treatment, but didn't find I needed to use it.

The diarrhea continued for a few weeks after the end of the treatment and gradually got better. I was very tired afterwards, worst at around ten days after the treatment finished, but have no lasting after effects from the treatment six months on. The CNS gave a dilator to use every few weeks to prevent scarring etc of the vagina. The bad news for me is that a follow up scan showed that there was still cancer present in my pelvic lymph nodes, so I'm currently having hormone therapy (a daily tablet) to control it, but actually feel perfectly ok.

I hope this helps - as I said in my earlier post, different people can react very differently to the same treatment, so other peoples experiences may differ from mine.

Thank you for this post as well. Seeing your stories makes it less scary and helps me get my head round what to expect. I’m sorry the treatment wasn’t fully successful. It’s amazing that they are treating it with hormones. I don’t know enough about my
cancer to know if it is affected by hormones in the same way. I do know it is in one of my lymph nodes. My primary tumour is external
on the perineal area so I wonder if I will need strict empty bowels or not. I have read differing stories about bowel monitoring. Another question for the oncologists I think.

Biopsy of my cancer after surgery apparently showed that it was hormone dependent, so as I'm post-menopausal I'm taking a tablet called Letrozole (more commonly used in the treatment of breast cancer) which lowers the amount of oestrogen and so fingers crossed will reduce the lesions or stop them growing.

If the radiotherapy plan doesn't need you to have bowels and / or bladder at a particular level it will certainly make the sessions a lot quicker and straight forward.

Hi OP, was thinking of your thread yesterday as I had a biopsy done in the same area, and came on to see how you were doing. I hope you've had some contact with the oncologist and progress on treatment in the last month

Just found this thread again. Since original post I have seen the oncologist and am now currently undergoing chemotherapy (cisplatin) weekly for five weeks along with radiotherapy Monday to Friday for 32 sessions. I have just had the third chemo and am a third of the way through radiotherapy. It is tough and draining but I am slowly marking each day off. Would love to hear from others that had intensive chemoradiotherapy as I am still very nervous of the late stage side effects

Hi OP. Can I ask, over the years was it constantly painful/itchy or did iy come and go? And was it a flat area or a lump?
I hope you’re doing well through chemo ❤️

Hi @waitingforthedaffodils

I've had the same for cervical cancer, same chemo and radiation.

chemo was fine, no hair loss with that one but my already thin hair became more thin.

radiation was completely painless but a bit of a faff.

long term effects, complete loss of dignity! I think my bladder has maybe shrunk a bit. I have a bit of lower back pain due to Brachytherapy (I don’t think you have this?) but everything seems to be working as it should, I’m over three years out now.

any questions feel free to PM me.

wishing you all the best it’s a tough regime.

It’s really hard to remember clearly now as it has been something I lived with for so long. I think it was always a little ‘lumpy’ with scar tissue as it wasn’t a neat healing tear. It was always prone to ‘catching’ when on period or during sex in which case it might be sore for a couple of days. But on the whole it wasn’t a big deal. It’s only I. The last few months before I got it checked where I would say the pain became more significant and then it was often itchy and sore.