Ongoing bleeding and pain 8 months post treatment

Hi Louise, 

im just a little behind you in all this, I finished my treatment in April 22, had my second 3 month check up in September still have bleeding in my mucus  as had a stoma, still have pain, but while waiting on my result, I had a big bleed lots of bright blood and clots one day which really worried me cos it felt like it was when diagnosed, went to see the colorectal surgeon and had check and said it was haemorrhoids, I did go for a sigmoidscopy, however due to it hurting to much they couldn’t do it, so still waiting to have another one done.

My result came back all clear and in remission however iv noticed that I go through times where the pain seems to ease for a few days then the pain and pressure gets worse again I’m sure it’s normal but if I’m supposed to be clear why am I still in pain and all I can put it down to is the radiotherapy, I hope others on her will put our minds a rest 

take care

Laura

Hello Louise

When you speak to your oncologist tell him exactly what is happening; make a list, it is so easy to forget some detail.  Not that I think there is anything wrong, but to put your mind to rest.  I frequently have bleeding if I strain or pass a hard stool, and it is very difficult to know what I should attribute all the new aches and pains I now have.  I think that all our bodies change after radiotherapy, some more than others.  My knees and hips ache and I am always getting peculiar twinges in my stomach.  I had a sharp pain when I leaned against the worktop and it dug in where I imagine my tumour (or the scar tissue) is.  Unfortunately I think all this goes with the radiotherapy territory but it certainly doesn't help peace of mind!

Please come back and let us know how you get on.

Irene xx

Will do. Xxx

thak you Laura will update once I get my call back. Xxxx

Hi 1996  sorry to here you're having these issues. I'm much further along out of treatment (3 years) and I have had bleeding on/off when having a bowel movement, ongoing strange sensations/pain at the site of the tumour and pains in the hips and sciatica.  I am currently 'no evidence of disease'. It's unfortunate that the radiotherapy aggravates the internal skin and because it's concentrated most at the site of the tumour that's where ongoing issues occur. This makes us worry that the cancer is back.  Even now, I have the pain every now and again at the tumour site and have moments of 'it's back' feelings but it's just that the nerve endings are damaged there and the skin is incredibly sensitive.  There's also the inevitable narrowing (stenosis) of the anus post-treatment and this can  cause bleeding when passing a bowel movement.  My Oncologist told me not to worry about bleeding  when going to the toilet so long as it was not heavy and prolonged. I would always say though, for anyone worried about any changes, to do what you have done and run this past your treating team.

I have been diagnosed with osteoporosis in my hips, my Oncologist thinks this has been contributed to due to the radiation and the earlier than normal menopause due to the treatment. You may want to just ask your Oncologist about your hip issues as this may be a possibility for the cause of your pain.

Anyway, I hope your Oncologist calls you back very soon and puts your mind at rest.  Bev x 

Hi Louise (1996),

I’m sorry to hear you’re experiencing a few issues at the moment. My first advice would be to seek some professional advice from either your surgeon or oncologist which you’ve already done. Secondly… I’m pretty lucky that I came through treatment quite well & recovered fairly quickly but at 4.5 years post treatment I still have some residual symptoms, these include bilateral sciatica, occasional tenderness at the place my tumour was, some anal stenosis & occasional bleeding when having a bowel movement, I also have hip pain although I’ve just had another hip X-ray that says there’s been minimal changes since 2018! I’ve now been referred to Muscularskeletal (MSK) for some intensive physiotherapy, I have wondered if this ‘hip pain’ may be muscular. These symptoms seem really commonplace following our particular treatment but you were wise to chase up your doctors for some reassurance. I hope your discomfort resolves really soon. 

Nicola 

I read all the comments and I think most of you reside in the UK. In America, anal cancer is never treated with a diverting colostomy, just chemo (5FU & cisplatinum) and radiation,  I received 5200 rads to the pelvis. I have no idea if I have anal stenosis, but I do have bleeding occasionally and I do have a large hemorrhoid. It only happens if I let my stools get too large and rocky. It’s been difficult getting my bowels to be soft. I get a warning of cramping in my left abdomen and then have about 30 seconds to get to the loo or it’s in my pants!  And we won’t talk about diarrhea, it takes me about 2 hours to clean everything up, me, rugs, etc. I wear depends like pants that I buy from Amazon 24 hours a day!

 
I recently had a biopsy under anesthesia which was negative for cancer and the surgeon said “everything looked great!  I think you do need a second look to make sure there is no iffy tissue anywhere that could be cancer. I think doing a sigmoidoscopy under anesthesia would resolve the issue of not getting a procedure done due to pain. Here in the US that’s not a problem. It would certainly help you know that the bleeding is not a recurrence!

As an aside I don’t think here or in the UK that the long term effects of pelvic radiation are looked at or addressed at all. Lots of women suffer from vaginal stenosis and problems with orgasm due to the radiation. I finally discussed this with my radiation oncologist and they are trying to find a “pelvic floor PT” here in Las Vegas to send me too. This would also help fecal incontinence, as I believe the muscles got fried during all that radiation.  I would be interested in hearing about the men as I obviously only have the female perspective. 

I’m not complaining, as of August my PET scan and anal bx were negative and for now I’m considered cancer free. I was Stage 4 at diagnosis, so I’m grateful.  I should tell you that I’m a semi-retired internist MD. Being a patient was a real eye opener. If I had had this experience earlier in my career, I know I could have been a better doctor for my patients!

Hello Louise, 

How are you? I’ve only just seen this as like you I’ve not been on here so much but you’ve not been far from my thoughts! If you have seen me you’ll have seen I’ve been the same as you, a few niggles! 

Hope you’re feeling better and addressed some of the issues. It’s a juggling act finding the things that work isn’t it! One day I’m constipated and the next I can’t leave the house. 

Do update us when you get this or direct message me. 

Sending much love (look how far we’ve come!! ️) 

PPR xx