Secondary vaginal cancer

Hi Hted and welcome to the group.

I can see of course that you’re very anxious-I think any sign of bleeding after a gynaecological cancer can make us feel like that. However, you don’t appear to have any other symptoms of vaginal cancer so there may be a very straightforward explanation from seeing some blood, other than cancer.

You’ve had quite a lot of radiation sessions, and this can cause thinning of the skin as your CNS explained. You don’t mention how old you are, but being menopausal might be having also be having the effect of making your skin in that area dry and more prone thinning and slight bleeding when using the dilators. Effects from radiotherapy can present themselves a long time after treatment has finished.

The first thing for your consultant to do will be examine you before there is any thought of a biopsy being needed. It might be clear to your doctor from an examination what the issue is and it might be very straightforward it terms of treatment, depending on what is seen.

I have had a somewhat similar experience in that I originally had cervical cancer which had grown into my vagina which was neither a primary vaginal cancer nor a secondary cancer but simply my cervical cancer which had grown there. I had 32 sessions of radiotherapy and I was post menopausal at the time, so I do recognise what you are saying as I also had slight bleeding from using the dilators.

At the moment, I think it’s too early to imagine either a recurrence of your original cancer or a new secondary cancer in the vagina. Once your doctor has seen you he or she would make a decision on whether a biopsy would be needed so I think you need to sit tight for now and wait till you’re examined. 

It’s hard to wait while you are feeling anxious, but try not to second guess what might be going on if you can. I hope you’ll be seen soon to put your mind at rest and that you’ll let us know how you get on. 

Sarah xx

Thank you so much for replying. 

I made a typo, I actually had 25 sessions of external radiotherapy!

I am nearly 73 .

My appointment is next Tuesday,  so not too long to wait. 

I'm feeling very nervous about using the dilator again and so think I will wait until after the appointment!

Ah, that’s ok-it’s still quite a lot of radiotherapy to go through in addition to the brachytherapy. There won’t be a problem in holding off using the dilator for now until you speak to the consultant-I quite understand, and I did the same! You’ve been using the dilator for a long time now, so have done well to persevere with it. A short break from it will not be harmful after all this time of regular use. 

Hopefully it’s a simple thing like thinning of the skin being post menopausal-it’s very common for that to happen and there will be an easy answer if that’s the case.  However, I hope you come back and let us know, and if you need any further support that is here for you too.

Sarah xx

Thank you again, and I will update you once I've been seen. (Praying for a good outcome)

Hi, hope you don't mind me hopping on your post but I'm in an almost identical position. Finished my brachy, 25 radio, chemo last August. Had slight pink showing on the tissue when wiped in the last few weeks, then when used dilator last week more  blood. Reported it to gynae nurses, they offered me a cancellation appointment the next day with the consultant who did all my original lletz.she examined me, but due to hurting couldnt do biopsy then and there, so she booked me in on Tuesday to do a biopsy under general anesthetic. I'm so scared of them finding it's returned. My kids are only 8 and 12. She did say she was doing the biopsy to err on the side of caution as because i have so much scaring, she couldn't tell if any issues, hence the biopsy. I'm trying to tell myself she is just being thorough, but my mind is running away with the worry :-(  

Have you had any other symptoms? Discharge etc?

Hi. Firstly apologies gor the late reply.  I am do sorry to hear you are going through this nightmare too. I totally understand your anxiety, ots draining, isn't it?  I have only had one episode of pinkish blood after dilating last Friday.  I've been too scared to try again! I have no other symptoms like discharge. I am seeing the consultant on Tuesday and  you will be very much in my thoughts then too. It does sound as though it could be your scar tissue causing the bleeding,  

The nurse said if they feel a biopsy is needed I would likely go to a different clinic.  I will be praying for us both to have good results so we can get back to living our lives without this constant fear.

I tell myself they are ruling anything untoward out, not ruling it in!

My very best wishes to you. Heather. 

Hi BobbiG and welcome to our group.

i’m sorry to read you are also concerned about some symptoms you’ve been having. I can’t see any detail on your profile from your situation up to now, so it may be worthwhile adding some information there so other ladies have an understanding of where you are. You have talked about having a LLETZ and chemo, radio and brachytherapy so did you have cervical cancer? Or did you have vaginal cancer? 

The biopsy will be easier for you under general anaesthetic-I had this done and it was very straightforward and didn’t take long. It’s always best to get this checked because it can be very difficult to tell scar tissue from something something more concerning. But your consultant will be erring on the side of caution, so please try not to be worrying too much just yet. 

I hope you’ll come back to let us know how you get on, and there will be support in the group for you if you do have a further diagnosis.

Sarah xx

Thank you for your reply Heather. Good luck with your consultant on Tuesday. I will keep you updated on how. Things go after my biopsy.

Thank you Sarah, I will update my profile. I had high grade CIN3, then total hysterectomy and lots of LLETZ / biopsies in between. Then in May last year at checkup, they found cancer in the top of vagina near the vault, (i think the CIN3 just moved down after my hysterectomy)  Then i started all my treatment including brachy. Im at 9 months post treatment now. Trying to keep myself busy but keep coming back to 'what if'. The consultant did reassure me it was because she was being cautious rather than she was concerned, so I'm really hoping & praying all is well and that it's just thinning skin / late effects.  Also, just remembered, before she even began the examination she said she would likely take a biopsy then and there (but then found she couldn't on the day as it was uncomfortable for me). Will update again after Tuesday. Thank you for replying x

Hi BobbiG 

Thank you-I understand more where you are now having had CIN3 and all you have had done, I think. As I mentioned to Heather, mine was cervical cancer, and was never vaginal cancer, even though mine was growing into the vaginal wall, as vaginal cancer and cervical cancer are not the same thing-mine was originally identified from my biopsy at diagnosis as cervical cancer, and so was always cervical cancer no matter where it moved to afterwards. 

I think it’s really difficult not to think “what if”, and I know I have been guilty of that at times myself over the past years, but I am getting much better at not thinking that way now. It just makes things more difficult trying to second guess stuff, and it ends up causing you much more worry.

At least you don’t have long to wait until the biopsy is done and then you’ll know one way or the other. It’s better for your consultant to be cautious and then if there is anything found, it has been identified quickly. Hopefully there might be another reason for your bleeding though. All the best for good results!

Sarah xx