One year post treatment - how I am feeling

Hi Scotslass

I hope you do not mind me replying as my cancer was endometrial but I did have some of the same treatment as you. 

My hysterectomy was in April 2022, I then had chemo and then pelvic radiotherapy. 

I understand that the side effects of treatment can be tough to manage. I have neuropathy from the chemo and my bladder and bowel have never returned to normal since the radiotherapy.

I would also liken my effects to IBS. It's not great but I do try and manage it day to day. Dietary changes have helped me but its taken a year to find out what I can and can not eat and to feel confident to go out and do things. Dairy and fibre seem to be a big trigger for me. I am also now lactose intolerant. 

I haven't put on weight, in fact have lost a fair bit but I think that is having the restricted diet and trying to eat at regular times. I also walk daily. I find the only thing that helps the IBS type symptoms is to have a really regular routine, eating, toilet, exercise. Once a come off the routine then things flare up again. 

I found PRDA helpful, it may be worth having a look. Pelvic Radiation Disease Association (prda.org.uk)

I have managed to use the dilators regularly but I suppose in a way I resent them. It's just a reminder along with everything else of what cancer has done. For me the treatment side effects will always be a reminder. 

With the tiredness, I found it was a good year until it improved. My consultant said chemo can affect you for a good couple of years. I still occasionally have to have a lie down if I do too much. 

I am sorry to hear of your cancer journey and the lasting side effects of the treatment. It took me a long while to start to feel better and it was very much little steps.

I will pop a link to some more info that may help.

After treatment | Macmillan Cancer Support

This is a link to a blog I wrote a year after my treatment finished. Sometimes it helps to feel that you are not alone in how you feel after cancer. 

Life One Year Later- Jane’s story - Macmillan Online Community

Hope this helps a bit.

Jane

I really feel for you and am in a similar position after radiotherapy and bracytherapy for inoperable vaginal cancer with spread to pelvic floor.

It's awful and really gets you down doesnt it? The fantastic recovery of some cancer survivors with their marathons and mountain climbing also makes you feel inadequate when just getting out of bed is an effort!

The worst thing is that 3 months post treatment everything improved but has now gone severely backwards to the point they did further biopsies ,suspecting recurrance. 

Now they say no recurrance and apart from a referral to the late effects clinic I feel on my own with the pain, incontinence and fatigue. I feel at 55 that I have lost myself and can no longer do the sports I enjoyed and feel very alone and very down

Hi. I am terribly sorry you are going through this. I have had both anal and rectal cancer, so I am very familiar with post radiation symptoms. Not fun!  May I please ask why they initially thought you were having a recurrence?  My anal cancer extended into my vagina so I am monitored every six months. I was just in for my vaginal exam and a 7 mm polyp-like structure was found. It’s small and could be scar tissue but the dr took a biopsy. Have you experienced nodules similar to this that were found to be benign? Thank you so much for your response. 

Hello AnnN123

It's so hard isn't it? So painful to have a poo now! 

I had such a worsening of symptoms 7 months post radiotherapy and brachytherapy that they thought the lump that had appeared was a recurrance- they did an EUA as said MRI finds it difficult to tell difference between scar tissue and cancer recurrance.  It's vagina cancer - primary adenocarcinoma. By time of diagnosis (fobbed off a few times) had spread to pelvic floor so no op just chemoradio and brachytherapy.  

Life doesn't seem the same afterwards - but have had referral to late effects clinic - imagine they are very busy so hope the wait isn't too long. 

I do hope your nodule is benign. Its such a worry isn't it? You have to force yourself not to think about it all sometimes. My cancer was most probably due to HPV. 

I am sending a virtual hug - really hard going through all this for us all - this is such a tremendously supportive place to be xx

Holy cow yes!  Everything is painful. I am so glad to hear that you have not had a recurrence and that your biopsies were clear. Did they find concerning areas in the vagina after treatment—is that why they biopsies?  My dr found a “polypoid structure” that could either be scar tissue, a polyp or a a recurrence. 

The late effects clinic will help. There are some conservative measures that have worked for me. I use Imodium a lot and that helps with urgency. I think time is a great healer, too. You are still early (even at 7 mos post) in the recovery stage. Keep hope and a big hug to you, too. I really appreciate you responding xx

Hi Ann - they did an investigation under anaesthetic and the report said there  was a 3x4cm ulcerative lesion on the right vaginal wall  with induration around the ulcer suggestive of recurrence of the vaginal wall malignancy  - so on reading that I kind of expected the worst so was relieved when the biopsy came back OK and they told me it was radiotherapy skin changes.

Yes I am looking forward to getting advice at the late effects clinic. I have kept having infections due to the open ulcers I guess so have had oral and topical antibiotics - the gyne consultant has also prescribed pv estrogen which I am doing religiously. A few of the lovely ladies on here say that has really helped.

The tiredness isn't helped by the frequent trips to pee at night . I think my bladder is the size of a walnut after the radiotherapy! 

It's good to talk Ann - please take care of yourself