Vulvar cancer

Hi and welcome to the online community

I have not had vulval cancer but noticed that your post had gone unanswered. This information tells you what to expect from a biopsy. Having any form of biopsy is stressful but the doctor will do everything possible to make you feel comfortable about the experience.

If you want to talk to someone to find out more information in advance you could give the Macmillan Support Line a call on 0808 808 0000. It's free to call and staffed by a team of experienced nurse specialists who can talk you through the treatment. They are available from 9am to 8pm Monday to Friday.

Wishing you all the best

x

Fathi, I am so sorry to hear you are going through this and it can seem very scary at the sound of the words biopsy. On this site you will find so many caring women who are ready to help and share experiences that will hopefully help you. The thing to always keep in mind though, is sometimes things may be nothing, sometimes they may be something serious but only you know your own body so remember no one is exactly the same and many have different experiences and outcomes.

I am from the United States so sometimes the terminology can be a bit different. Sometimes from what I've read in the UK the doctors diagnose the itch as thrush and I don't know if it is the same as lichen sclerosis but that is what I hear the extreme vulvar itch as here. It is treated mostly here with clobetasol steroid and if used a lot it can cause the skin to tear and create fissures which are like tears in the skin. It's like a catch 22, you need the steroid to fight the itching but it can also cause thinning of the skin and make it tear easily. 

Do you have a follow up appointment scheduled? 

Lisa

Hi Fathi

I just wanted to reassure you about having s biopsy. I’ve had VIN3 twice now and each time I had a biopsy with wide local excisions. I’ve been clear for 2 years now and have regular 6 monthly check ups. It’s uncomfortable  for a few weeks afterwards, I needed a couple of weeks off work. But the relief that it’s gone is worth it I promise. If you have any questions please ask x

Hi Lisa, was wondering how you are doing these days?  Are you still in pain with your medication?  My vulva is starting to burn like mad now, the tumors have blistered and its very painful, i have been offered 5 goes at radio for the pain, did you have this? Im not sure whether to have it i don't want to be in anymore pain.  Its so debilitating this disease and the area it is in. 

Paula

Paula, I am so sorry you are in so much pain. You are right, it is so debilitating and changes you inside and out. Do you think the you are dealing with VIN or Lichen Sclerosis? Have you tried slathering on Aquaphor or would you be able to get a burn salve? (I'm allergic to the burn salve but it helps so many people). 

Are they talking 5 weeks of radiation or 5 radiation treatments? I know radiation works for so many people; maybe if it's only 5 treatments it would be worth a shot...but if it's 5-weeks I'd really think about it. I don't know if I'd ever try it again; it was horrible for me. The first three weeks were ok but then it went downhill from there. Drinking all the water you have to to protect your bladder did nothing for me and my bladder ended up with horrid tissue damage because of the radiation. 

I am in constant pain. Doctors here are so afraid to prescribe meds because of addiction. I happen to not be able to take many pain meds because they make me sick or rev me right up. Right now I have a pain med I take once per month when I get my suprapubic catheter changed out otherwise I use motrin and tylenol every three to four hours until I am better. I also have to take a relaxer to calm me otherwise my mind takes over my pain. 

My pain consists of pelvic pain like knives jabbing up my vagina area, phantom pain in my urethra and clitoris area that is gone. Nerve pain is the worse and it affects me daily. I probably am at a 4 on a pain scale of 1-10 every day. What do the doctors say about your blisters? They can't just leave you like that. Please let me know what you are doing for pain?

Take care, 
Lisa

Hi Lisa your pain sounds awful do you managed to lead a normal life?  I don't want t be stuck indoors (which i could easily do) so im trying cannabis medication to try and shrink the tumors im on a trial.  My consultant does not know about the blisters yet, im using licodane and instigell which helps temporarily.  I had my supra pubic catheter out last year i would rather be incontinent, as i do have a bit of control. I had 5 weeks of radio which totally messed my insides up, ive had part urethra removed which constantly spasms so i feel like i want to pee all the time.  I have 2 tumors in the vaginal passage which are grade 1 squamous cell carcinoma, they are heading towards the rectum this is what has blistered.  The pain can be so intense, then it goes for a few hours.  I can go to the hospital anytime, im not sure what to expect with 5 single blasts of low dose radio its supposed to help with pain.  If this is true i will try and manage a bit longer as its the last resort before i go  onto morphine, that will be the end of me i hate the stuff.

Hugs

Paula x

Paula, I feel so bad for you. Knowing that it is heading to your rectum is awful. Basically my doc says that's the next place it will probably go for me too or my reconstructed vagina. 

There are bladder spasm meds you could ask for the spasms and they help immensely. I am stuck with my suprapubic catheter for life or at least another 8-months cancer free before we can talk about an illial conduit. I don't have my urethra anymore and my cancer metastasized to my bladder so 1/2 of my bladder had to be removed and SPC placed. The radiation did so much damage to what was left of my bladder and all of my tissue down there that ALL of my plastic surgery from my 'flap' taken from my Left thigh including muscle, tissue and tendons split open because of the radiation and I had to have my wounds packed three times per day for 6 months, and 5 1/2 wks out of surgery while being packed my bladder ruptured so the urine was coming out of all of those wounds and my vagina. It got to the point I was wearing depends and POISE super pads (10)/day! I finally had to have two nephrostemy tubes put in my kidneys to divert the urine out directly to my kidneys instead of bladder for three months but thank God it healed.

I had lead a semi-normal life for about 9 years but the past two years now have put me down. I went back to work after chemo and radiation for 4 hours a day, 3 days a week until last December when I had two surgeries preparing for my last one in January this year. My lymphedema is what really bothered me, that and nerve pain. Now, I am pretty disabled, I have to use a cane, I sleep about 3 hour naps per day, I need help getting into vehicles when my legs burn, go numb or get too heavy I can't lift them. BUT I am here! I am ALIVE and able to spend time with my family. I am just as busy keeping track of all my families meds, doctoring, paying billls and accompanying my parents to their Dr apts.

I don't want to be a downer because if 5-treatments is going to help you I'd jump on it. It's the 5-wk radiation that was horrible. You are right lidocaine only works for a short time. Do you use the canibas salve? I am so proud you; you keep going on and fighting!!!

Love, Lisa

Lisa you shouldn't feel bad for me, you have been through so  much as well, i think we are both brave warriors!  When i think of the years that have passed and all the surgeries i do wonder sometimes what was all that for, then i look at my grandchildrens faces and realise thats why im here to see them grow up. Anyway im sorry to hear about the lymphedema my legs are not too bad as long as i rest them every couple of hours.  I don't sleep well my mind is chattering i do  have sleeping pills but do not like the hangover next day.  I am going to try the salve but being so sore im a bit wary, i usually take cannabis orally under the tongue. It has taken all the stress away, not so much the pain but ive only just started using it.  Do you wear compression stockings, i don't anymore cant stand them either.  God Lisa and your bladder problems its so unfair.  Iv tried bladder spasm meds, they don't work as its the urethra and scarring what is spasming. I too spend loads on depends!!! 

Maybe next week i will call my nurse and ask about the radio, im just hoping the cannabis will do the trick.

Thanks Lisa you keep  fighting as well.

Hugs

Paula x

My uncles have asked me to try the cannabis and maybe it would help with my pain but I am not ready to try that yet. My last Mayo Clinic apt was last week and my urology oncologist told me I'm maxed out on my bladder spasm meds but wants me to try valium. I've never tried that before and I asked if xanax would help because I sometimes take that and he said yes. So I may try that when the spasms come back in the afternoon. I know every single day when my body has had enough, I just need to listen. 

I tried the compression socks that went clear up to my groin and it hurt way too much with all of my scar tissue especially after all of my plastic surgery down there to get skin and muscle from my leg. Plus I have this goofy reynaulds syndrome and it doesn't like to be compressed. I do have a lymphedema machine but don't use it too much because it helps with the swelling but hurts my SP catheter. 

I don't sleep much either, I am up past midnight most nights, last night it was 2:30am. I hate where my mind goes and can't stop the thinking as well. I take melatonin 10mg to try to help along with my anxiety meds at night and when I do finally fall to sleep I am up every hour rolling over but I wake myself up because with my SPC I have to be so careful with my tubing. 

My husband was pretty ticked when I didn't have a PET scan this time because I usually get one every 3 months. My gyne oncologist said that was a definite slip on her offices part and I'd be sure to have one in January. My husband is so worried that if they find something in Jan he will be ticked!!

Of all things, last night as I was typing this I ended up with blood and clots in my catheter tube and over night bag. So I am picking up where I left off last night with typing this message. I ended up going in to local doctor office today and I have a UTI, elevated BP, sore back pain, pelvic pain, fever, and feel nauseated....so Dr. gave me a shot of antibiotic and sent me home with one too. Hoping it clears up fast.

Thanks, Lisa

Hi Lisa, i hope your feeling a bit better now, i had the same thing happen to me when i had the SP, it was frightening at the time, my mind was going overtime. Compression hurts me too now so i don't wear them. Are you taking anti depressants? I am.   Ive had Valium before its quite sedating but gives me a hangover effect the next day. Ive been on to my nurse today and told them about the pain, ive got an appointment next week where we are going to talk more about short course of radiotherapy. Im going to increase the cannabis to see if that helps.

Paula x