Vagina cancer

Affected by vagina cancer or VAIN (a pre-cancerous condition)? Join this group to share experiences and ask questions to people who understand what you're going through.

Recurrent Vaginal Cancer

Jp1223
Posted by

Hello everyone. I am 51yrs old, and was diagnosed 3 weeks ago with recurrent vaginal cancer, after having checks done for post- menopausal spotting. I never in a million years though it would be the cancer back. I was first diagnosed almost 7yrs ago, and went through chemo & radiotherapy, in remission for 6yrs and discharged from Oncology in Jan 2017. I know this time will be surgery, but after biopsies & a PET scan over 10 days ago I am still waiting to hear. I contracted an infection after the biopsy and saw my gp 2 days ago, they have a copy of the PET scan results so asked if I wanted to know. I agreed, and to my relief it looks like it hasn't spread out with my vagina, but they are doing more histology tests before calling me back in. Is this normal to keep me in the dark so long? The first time it seemed to be so quick getting treatment. I am - naturally - looking up surgery for the cancer, and they go from partial Vaginectomy to total pelvic externation, which at my age is very scary! The tumour is in my lower vagina, but the damage caused by the original treatment is excessive - scarring, skin looks like I have a tropical disease down there, tightening and shortening to about 5cm inside my vagina (I did get dialators, but hated using them, then I fractured my femur giving me major issues finally having a total hip replacement 3yrs ago - my partner of 16yrs left me and using them was the last thing on my mind) What will surgery leave behind? I am single now, but would like to think I'm not too old to meet someone. I am self -employed, so have spent the last few weeks trying to get organised for when I inevitably will need to go off sick, and have told family & friends. I haven't however told my children (15 & 11), how can I tell them when I don't have any solid information? They will have questions I can't answer, and too young to understand why I don't have them ( I am struggling myself!) It breaks my heart knowing I am keeping it from them when other, less important, people know. Fortunately I am well, just really tired but I think that's a combination of the infection and mental draining, so don't think they suspect anything and I have got all my letters etc hidden in my bedroom. I am planning to tell them as soon as I get more information, but will be doing it on my own this time so dreading that. I wrote a diary last time, have decided to restart it putting down my feelings etc etc, but if anyone can offer any advise on telling the kids, how they felt after similar diagnosis I would be very grateful. I signed up to Sober October before all this came about, and decided to still go ahead with it, so got a big night out tonight, just hope I can stay awake! Anyway, thank you everyone for reading my very long message. 

Louisemaroc
Posted by

Hi can't really answer your questions as I am new  to this myself but sending you my best wishes. I hope you can find the right words for your children maybe they can give you strength to get through this. 

Seeanndeann
Posted by

Hello there, I’m so sorry to hear of your cancer returning after getting the all clear after the first time. 

I haven’t got cancer myself but my mum has just been diagnosed with vaginal cancer on Friday just gone, she has got a PET scan on Wednesday 3rd Oct (tomorrow) and they’ve already planned for her to come in for the results on Monday 8th Oct. she had cervical cancer 23 years ago when I was just 13 years old and I remember her telling me about it. I remember getting a lump in my throat and thinking she was going to die because all I knew was that cancer kills people. I think you’re right in waiting to get more information before you tell your children as they will want to ask questions so it would be better for both of you if you have some answears. My mum is 63 and also single and had been since cervical cancer she has the same problem internally with a small space in her vagina. 

I hipe you you have a trusted friend who is there to support you through this, im my mums as im now in my 30’s .

i felt I had to reply as I was once that teenager with a mum who had cancer, I just wanted to know if she was going to live. 

Also one one other thing my mums dr said she won’t be offered chemo or radiotherapy!!!!! I don’t know why this is so I’m armed with questions for tomorrow’s visit.

i wish you well, you beat it once and you can do it again. Xxx

Arla
Posted by

Hi Jp,

I hope you don't mind me popping my head in from the womb group, I picked up your post from the main page and just wanted to point you in the direction of this information from Macmillan about talking to kids about cancer:

https://www.macmillan.org.uk/information-and-support/coping/talking-about-cancer/talking-to-children 

Waiting on results is always a stressful time, hopefully you won't have much longer to wait before the hospital see you, you could give them a call and a nudge to ask when you will hear your treatment plan. If you want to speak to a medic before then you can call the helpline and ask to speak to a nurse on 0808 808 0000 or contact the eve appeal, they have a gynaecologist nurse specialist who I hear great things about, their contact information can be found at:

https://eveappeal.org.uk/supporting-you/ask-eve/ 

Lots and lots of love 

xxx

Jp1223
Posted by

Hi. Thank you, I saw the surgeon yesterday and was told my only curative option is a posterior pelvic exenteration, leaving me with a stoma from my bowel, and the unlikely possibility of vaginal reconstruction. I will be having surgery in about 5 weeks as it's my son's birthday beginning of Nov, so don't want to be in hospital for that. It's a long op, 7-10 day stay in hospital, and 4-6 months recovery. Sounds like hell, but I will get through it. Am planning to tell the kids on Sunday. The nurse at the clinic was lovely, very helpful but in a practical as well as medical way, she gave me a copy of the booklet you linked. 

So, now got a few weeks to set things up and get ready for the op, will keep me busy! Self-employed too so got all the financial side to sort! 

Jp1223
Posted by

Hi. Thank you, I have a big group of friends who have offered to set up a rota if needs be to help out, it brings tears to my eyes to know they care that much. I also have my family, who don't live close, but will travel to help out. I found out yesterday that the only curative option is a posterior pelvic exenteration, leaving me with a stoma from my bowel - it all sounds very scary, but it is as it is. I will tell the kids on Sunday -'I am sure the thought of mummy with no bum hole will be funny to my 10yr old son, and that will probably lift me a bit. Have got a few weeks before surgery to get prepared, and I know it sounds stupid in the circumstances, but have got tickets to see my 30yr long crush, Rick Astley soon so have got that to look forward to. 

I hope your mum gets better results than me, but she is very lucky to have you to support her and it will mean do much to her. 

X

Seeanndeann
Posted by

Hi Jp,

Im sorry that you’ve got to have such a big operation. My

mum too has got to have her bowl removed and also her bladder if she can have the operation. Which is our best hope as if it’s spread there is nothing that can be done. We get results Monday so fingers crossed.

You seem to have a good attitude towards it all which is what gets you through as well as the support from friends and family which I’m so pleased to hear you have around you. Looking at the stoma  bags they are very discrete now and can even be hidden under a swimsuit but I’m sure you’ve checked all of that out. 

I hope all all goes well telling your children and all the luck in the world for your operation. You sound like an organised and strong independent woman so you will get through this part of your journey and continue on as the woman you are but even stronger.

take care

xxx

Jp1223
Posted by

Well, a month down the line and after more tests & examinations I now have to have a total pelvic exenteration. Not because the cancer has spread, but because the previous radiotherapy left so much damage internally the surgeons are concerned that after this op it will be very difficult for the already scared tissue to reheal, thus leaving me incontinent for the rest of my life. Further surgery could be done to try to correct it but then it's even more scared tissue. So, it has been recommended I loose my bladder as well. Scary considering the tumour is only 2cm. Anyway, I signed the consent from to have it done on 20th Nov - which seems ages away, and am now trying to get ready for Christmas a month early because I will be in hospital up to 3 weeks. Has anyone had the total exenteration done for other Gynae cancers? If so, how did you cope with it all? 

Kuma
Posted by

Hi, JP

I also had vaginal cancer stage1 in 2014. I have been ok and had no problem since then, but struggling with VIN(pre cancer on my vulva) for a couple of years. I also had damage(nerve damage in my vagina) and severe dryness from radiation.

I hope your surgery is going well, and please keep us posted.

Kuma

mommawig
Posted by

Hi

I have just been told I will have to have posterior exenteration  for my recurrent womb cancer and I wondered how you were getting on.

Are you coping??

Shelley2012
Posted by

Hi JP

When I had my MRI before the brachubrachyt I was told there was 2cm left, I'll be looking at the same surgery as you if there's any left.

I really hope that you're healing well both physically and mentally, if you have any words of wisdom for someone who is possibly going to go through this, feel free to share, fore warned is fare armed 

Ive got a 6 year old, I'm.just going to tell him I'm really special that's why I have to have the bags! He's too young to understand about cancer and I don't want to give him too much information.

Big hugs Shelley xx

Jp1223
Posted by

Hi Shelley,

Well, I finally had my op after a few 'issues ' and due to a couple of problems after the op I was in hospital almost 5 weeks, then back in a week later for a few more days. They had to do a VRam flap in the end too, so I now have a scar from under my left boob down to my pelvis (68 clips were removed), 2 stones and a big wedge of skin & muscle from my abdomen to patch up the gap left 'down below'. I had drains due to internal urine leaks but all while I was in hospital so all dealt with quickly. My stomach took 13 days to start working after the operation so I was  on a TPN feed for a while. I then got a blocked bowel (why I had to return to hospital) However, I am home now, and although still a bit uncomfortable sitting & lying down I am getting stronger everyday and even did a bit of gardening this afternoon (while no one was looking, and it wore me out...) I get tired easily, but it has been confirmed that the cancer has been totally removed. 

The bags - well, I admit I don't like them, but getting used to them. Had a few issues with the urostomy bag leaking, but with the help from my lovely stoma nurse it seems to be sorted now. My kids know they are there, but don't really get 'involved' and I have to cover my night bag before my son will come into my bedroom. I have joined the local Urostomy Association and have had some very good advice from them - if you are comfortable doing that I would recommend it. Also, get as much advise from your stoma nurse as possible, you can also get advice & free samples from many of the manufacturers. With regards to the colostomy, it is a very strange feeling pooping through the stoma, and my fears about smell are unfounded but it's not as bad as I imagined. Take your time getting used to changing them both if you are able, I spend almost an hour every morning - showering, changing, massaging cream into my abdominal scar and then finally getting dressed. But it makes me feel less stressed and more able to face the world.

One thing I have massive issues about is the fact that I am single and now not only have 2 stomas but also no vagina (and highly unlikely to ever get one reconstructed). Despite what everyone keeps telling me, I doubt very much there are many men out there who wouldn't be put off by that, and how do you tell someone anyway?? 

HOwever,  I am  alive and my kids still have their mum - that's the main thing just now. I wish you all the best with whatever they advise you will need - I won't lie and say it's easy, but it's manageable, and once you are through the actual operation things can only get better. Why don't you start a diary and when you are better you can see how far you've come? 

Take care

Jane x