How quick it's all happened & mixed emotions

Hi Trish263

I am from a different forum but just want to reassure you if you ever need any reassurance about a stoma the bowel forum are great at helping answer any questions .

Also we have a helpline 0808 808 0000 and they would be more than happy to chat through the emotional impact . Bowel cancer has teamed up with Bupa for six counselling sessions if you feel that would be helpful .

It’s a lot to go through and even if it’s not for now they are available for the future .

Hope a plan starts to come together for you soon .

Take care ,

Court 

Hi Trish236

I also have VIN and AIN /PAIN... High grade 3...

Last operation was November 2020, I was also told about a possible stomabag because he was operating so close to the sphincter muscles, he said its not 100 percent but a possibility if I damage the sphincter this may happen.. Thankfully the operation went well enough not to damage anything, so hopefully this gives u some hope of it being a possibility.. Try to think of urself more than others, it's all about u at this time, I hope everything goes well for u.. 

Hi Trish

I’m really sorry to see what you’re going through-I understand it must be really difficult for you. I don’t have this cancer but I have had cervical cancer, and what I wanted to say to you is that I’ve lost my bladder, rectum and my vagina to this, so I have two bags, and hopefully therefore some understanding of how this might feel for you.  All of this does have a massive impact, but what I did want to try and reassure you about if I can, is that you can still have a really good quality of life, if any of this is what has to happen. 

I was prepared to anything to get rid of my cancer, so despite losing everything in my pelvis I went ahead with the surgery as it was my only chance to stay alive. I can never have sex again, but I saw it as a small price to pay to live. I watched other women say sex was more important to them, but they’re not here now to have sex. 

I understand you want to know what’s going to happen, and the waiting is awful, so I hope you find out what the plan is soon and wish you all the best. Losing parts of yourself which are fundamental to being a woman is hard, so I feel you. 

Sarah xx

Hi Trish263,

I can see you have lots of caring and helpful replies, but I just wanted to say that I have had VIN3 and vulval cancer and am happy to chat if that would help. I didn’t have chemo or radiotherapy, just an operation to remove the affected area, so I have very little knowledge when it comes to chemo and radiotherapy. I do appreciate the frustration with everyone asking for updates  though and with the stress and upset cancer brings. 

Take care,

Hi vulval cancer warrior.  I've just been diagnosed with vulval cancer by my Dermatologist and referred to gynaecologist.  I'd be really interested to hear your story of you wouldn't mind.  Did you have Erosive Lichen Planus as this was my original diagnosis but Dermatologist worried about a particular lesion so had biopsy.  Thank you x

Thank you all so much for replies i really appreciate it. Got to call oncology on Tue for an update on my appointment. Just getting more  uncomfortable at the moment xx

Hi Sarah

Been to oncology today. They are going to try chemo to see if they can shrink it a bit but he told me he sure its in the bowel as well so looks like I will be joining you in the full works.

Got to stay strong and yes you are right I can live a normal life once I get used to the adjustments. Thanks for the reply xx

Hi Trish

I’m sorry to hear that. Mine wasn’t in my bowel, but I had bad radiotherapy damage there so told them to take it while they were in there doing everything else. It is massive surgery and a tough recovery but I’ve never regretted it once. Keep us posted on how things go and I’m here to help with support if I can. 

Sarah xx

Hi Sandyann,

I am very happy to share my story 

I developed an itch many years ago, but it became worse in March 2020. Due to COVID I wasn’t  seen by my GP until September 2020. She believed  that I had lichen planus and sent me to a dermatologist for a biopsy. I was finally seen by the dermatologist in November 2020 and she agreed that I needed a biopsy. I had my biopsy in December 2020 and it came back as VIN3. I had surgery in February 2021 to remove the VIN, however the biopsy came back as squamous cell carcinoma (cancer). I’ve since had further surgery to widen my margins and to remove and test a lymph node from each side. Thankfully this all came back clear! 

I never did find out whether I had lichen planus! The first doctor said there was no comment, but it’s likely I do have it, but the second doctor said it is likely it was caused by the virus. 

If you have any questions at all then please do ask away. I’m very happy to share any knowledge I have 

Take care, 

Hi Vulval cancer warrior.  Thank you for sharing your story.  My GP was treating me in December for itchiness and soreness in the vulval area. She was a bit concerned about an erosion on my labia minora which wasn't responding to treatment . In January she referred me to 2 week wait dermatology clinic where I was seen end of January.  The dermatologist diagnosed erosive Lichen Planus and referred me for biopsy which I had on 12 February.  She rang me last Thursday and said it was a squamous cell carcinoma and she was referring me to the multi-disciplinary team for assessment and operation.  I'm still waiting to hear from them but due to see my Dermatologist tomorrow.

I'm finding all this a bit scarey but am also impatient to find out what's going on and what they can do. It's very comforting to read yours and other women's stories. I will gladly come back to you with any questions thank you xcx