Radiotherapy support

My results were on every letter from my hospital at the top on the right hand side. They continue to be on all correspondence. 

My actual post op results were done in a phone call from the surgeon. 

Might be worth emailing your CNS. I have never heard about correspondence being set to silent. 

Hi there I wonder if anyone is suffering from very painful hip and knee joints after just completing chemo and about to finish brachy at UCLH?  I finished my chemo on 8 July?

Thank you I will. Have had no correspondence since the discharge letter from the op apart from 1 appointment letter.

I had joint pain during and after chemo for a while. Its not uncommon with Paclitaxel. Best thing to do is to mention it to your CNS. 

Hi MarmiteFan59 (although I cant believe you actually like Marmite ), I am currently in your position. Before total hysterectomy I was told grade 1a slow growing but after 1b aggressive. It was a bit of a shock to learn they now want to give me adjuvant treatment of 25 x radiotherapy and 2 x brachytherapy (like you). I’m really concerned about all the radiotherapy long term side effects, especially hairline hip fractures due to bone thinning and making my sacroiliac arthritis worse. My treatment starts September. Can you tell me if you had/are having any problems?

 Before a total hysterectomy I was told I had a grade 1a slow growing but after it was actually grade 1b aggressive. It was a bit of a shock to learn they now want to give me adjuvant treatment of 25 x radiotherapy and 2 x brachytherapy (like you). I’m really concerned about all the radiotherapy long term side effects, especially hairline hip fractures due to bone thinning and making my sacroiliac arthritis worse. My treatment starts September. Can you tell me if you had/are having any problems?

Hi Jayess, yes indeed I love Marmite! Haha. And I am a bit like Marmite myself too! I’m thinking you may mean stage 1b rather than grade, as grades are usually in whole numbers without letters. Do you know what grade/type your cancer was? And just a quick question to clarify - do you already have any bone thinning, eg osteopenia or osteoporosis? Has your sacroiliac already been diagnosed with a scan or by symptoms? 

Sorry my hand doesn’t write what my brain is thinking. It was discovered to be a 1b, grade 3, endometrial cancer. No bone thinning diagnosed. I have 2 hip replacements and when they were checked by X-ray it was noted I had arthritis to the sacroiliac joints. I’m 74 and have arthritis in my foot and thumbs (X-ray) but nothing has been suggested. I presume I must have arthritis in more areas . I don’t take medication for it.   I walk (more like stroll) with a friend about 3 miles 3-4 times a week. 

Hi

I didn't know mine was aggressive before the post op results so I can appreciate it can be a bit of a shock. 

Aggressive normally means a grade 3 cancer and there are different types. Mine was carcinoma sarcoma but there are others such as serous, clear cell etc. The presence of any LVSI can also be important. 

With a grade 3 cancer the chances of recurrence can be higher and even at a low stage (1b is considered low stage and contained) adjuvant treatment is normally recommended. 

It is understandable to be concerned about the longer term effects but it is easier to prevent a recurrence than to treat one. 

I am almost 3 years post treatment now. I had chemotherapy and external radiotherapy. I was told that I did not need brachytherapy as no cancer cells were found in my cervix. 

I do have some long term effects from both treatments however I do not regret having the treatments. Without the treatment I feel it is likely that I would have had a recurrence by now.

With something like arthritis and the risk of hip fractures it is not something I know much about.

You could give the Support Line a call and talk about it to one of the nurses. 

Its a hard decision to make- I would perhaps write a list of questions.

So something like - Is it possible for radiotherapy to make arthritis worse?

 Will it lead to bone thinning?

Does arthritis mean that hairline fractures are more likely?

What are my chances of a recurrence without treatment vs recurrence chance with treatment?

For me the most important thing was to avoid recurrence. What is most important to you- to avoid the cancer coming back or to prevent the chance of it making your arthritis worse?

How likely is it that this would actually happen? If your cancer did come back because you did not do the radiotherapy, would it be treatable and if so would it be curative. What would the likely treatment be?

These are the sort of things that I would be thinking/asking about.

With both treatment I was given a long list of potential side effects- some serious. However I did not get many of them. 

I wish you well whatever you decide. If there is anything else you want to ask about please do so.

Jane

I've fairly recently (April-May 2025) had a course of 27 external radiotherapy and 2 brachytherapy. I had some bowel issues (urgency, frequency and consistency)  during the treatment period and for a few weeks afterwards and was very tired for a few weeks afterwards but feel pretty much back to normal now and so far I've not experienced any longer term side-effects. I do have arthritis in my knees (which I'm not having any treatment for) but not aware of any simialr problems in the pelvic area.