Bleeding 3.5 years in remission

Hi Ladies, looking for some of you experiences please. I was diagnosed 1b2 in December 2015, started treatment Feb and ended March. Treatment was 6 chemo, 25 radio and 4 brachy. All has been well so far until last night. I went to the toilet and when I wiped, there was blood, not a lot but never had any before. I looked down the pan and noticed two tiny clots. I use my dilators three times a week and all of fine with that however sex is only once or twice a year as I just can’t relax or enjoy it anymore. Has anyone had this before and it not been recurrence? All experiences welcome whether good or bad. Just need to hear from others that this has happened to. I’ll be calling my oncologist on Tuesday to try to get an emergency appointment but it’s a long time until Tuesday. Thanks x

Hi

I'm 2.5 years NED and I had a bleed about 3 months ago: fresh red blood on the loo paper after a pee. It was about 2am and I spent the rest of the night thinking the worst.  

I got an emergency Oncology appointment within a few days, still bleeding albeit to a lesser extent.  The Oncologist did an examination but said he couldn't be sure whether the bleeding was coming from my bladder/urethra or vagina (it wasn't bowel/rectal bleeding).  He latched on to the fact that I self-catheterise (that's another story) and suggested I had injured my urethra (I think I'd have known if that was the case)

I'm celibate and hadn't used my dilator for several days before the bleed but I personally think it was a bleed from my vagina. The CNS suggested that maybe some of my vaginal blood vessels are a bit fragile: ?my age ?late effects of radiotherapy.  I was advised to use a vaginal moisturiser (as opposed to a lubricant) regularly, to help improve the condition of my vagina and urethra. The CNS explained that vaginal lubricants are more suitable whilst using dilators or during sex.

Ironically, on account of another problem, I'd had an mri scan just one month before my bleed. On the basis of the scan results and vaginal palpation the Oncologist said there was no evidence of recurrence.

My bleeding cleared up shortly after the Oncology appointment, but I'm to flag it up if it happens again.

Best Wishes

xx

 

Two things of note for perspective. 1) Recurrence of 1B is rare. 2) Recurrence is usually within two years. So it is actually statistically unlikely that this is cancer.

But I had the same symptoms after more than twenty years and it proved to be a new vaginal tumour. So it's essential you get it checked out. I had to really fight my way to diagnosis as it was such a minor symptom but it was worth it as I am still alive and well. So make sure you get checked out as it's almost certainly  likely to be nothing and if it is something, it's treatable. 

Karen x 

Thanks Ladies, I’m trying to keep it off my mind but I’m sure you’ll agree, that’s way harder than it sounds! Holiday weekend here this weekend so will have to bide my time until the Oncologist is back on Tuesday, to try for an emergency appointment x

Hi ladies

I managed to get an appointment with go who put a referral in at my oncologist however she tested my urine which was clear plus I had an internal too. All looked ‘perfectly healthy’ to my gp but I’ve now had cramps since Tuesday night which has continued my worries. Oncology appointment next Wednesday, fingers crossed everything’s ok. I’ll update once I’ve been. 

 

Px

I’m 3 years out of treatments and I still bleed after sex and dialator use. I think some of us will just always bleed a little? Doc always checks of course to make sure everything is still normal. 

Hi nm

I know that it can be normal to some but sex is few and far between these days and I’ve always been okay after dilator use, this is what’s worrying me so much. I haven’t have any more bleeding but still have the lover abdomen pain, which is worrying me more now! Never ending story it seems :(

x