Radiotherapy

[jamesroybuck]

Hello ; I've posted on this previously ; I thought I would try again , in the hope some members might see it this time that may have missed it last time : I have long standing APS and SLE and am about to embark on radiotherapy treatment for Prostate Cancer. Does anyone have any knowledge or opinions on radiotherapy treatment for people with APS / SLE ; secial precautions ; exacerbations ; side effects ; etc.

[MEGS53]

Hi

I have Ehlers Danlos Syndrome, not lupus, but present with similar symptoms.

I had a long course of radiotherapy after a lumpectomy following breast cancer. My experience was extreme fatigue, even worse than usual 😬, and I developed a nasty abscess under a back molar which took a long time to resolve. I was told I was immunosuppressed after the radiotherapy.

This was just my experience and it hopefully won’t happen to you, but take it easy and be sure to rest up afterwards. Recovery will probs take longer than you think.

Hope all goes well 🤗🤗🤗🤗

[jamesroybuck in reply to MEGS53]

Thankyou for taking the time to reply. Keep well.

[MEGS53 in reply to jamesroybuck]

same to you.

Not many men on this site hence lack of response.

Take care 🤗🤗🤗

[Debbie_kinsey Administrator LUPUS UK]

Hi Jamesroybuck

There's a little research which suggests that some people with SLE can have more side effects or toxicity from radiotherapy, but that it doesn't necessarily mean people with SLE shouldn't have radiotherapy. And how likely you are to experience more side effects depends on how severely your lupus affects you, whether you also have lupus nephritis, etc. Unfortunately I couldn't find much research about APS and radiotherapy. Your oncologist and rheumatologist should be taking your diagnoses into consideration when they recommend what and how much treatment you should have.

It would be worth talking to your rheumatologist and oncologist about any concerns you have, as they will be able to advise you on your specific case, and reassure you about any additional monitoring or precautions they are taking if they are needed.

Take care

Debbie

[jamesroybuck in reply to Debbie_kinsey]

Thanks Debbie for taking the time to reply

[C-aches]

Hi James, I have had a course of radiotherapy following surgery for breast cancer, and I have SLE. I completely understand your anxiety when faced with a situation that is beyond our control. All I wanted to say is that the side effects will be different for each person, I found the first few sessions were a piece of cake. I ended up with sore skin and slight blistering, but nothing unbearable. I too found that the exhaustion was cumulative but managed to keep working part time until the treatment finished when I took 2 weeks holiday to recover and slept a lot. You will have an amazing team in the radiotherapy department who will look after you and can give lots of practical advice about skin care and so on. I am now 10 years cancer free! I wish you every success with your treatment - stay positive! 👍

[jamesroybuck in reply to C-aches]

Thank you so much for taking the time to reply. I place a high value on anecdotal info. from people who have been there. Keep Well

[Pms1888]

Hi James

Sorry for my late response. I too went through Radiotherapy after being diagnosed with breast cancer. As I have Lupus/Sjogrens the radiotherapy consultant was reluctant to put me forward for radiotherapy due to the possibility of fibrosis of my lungs. However after a meeting with my rheumatologist it was agreed that the current health situation should take priority over what may or may not happen in years to come. I too agreed as my lupus affects my limbs, and not my lungs. My Sjogrens causes dry eyes, mouth and nose. I also sometimes get a rash and dry itchy skin.

My radiotherapy (15 sessions) went well. Like others my skin did turn red and itchy but only on the last few sessions. I used creams and it wasn’t really an issue at all. The fatigue started about a week after my last session and wasn’t too bad at all. I suppose I was comparing it to how I felt during chemotherapy which was much worse. Again I agree with the others, each patient is different and you should get the advice/opinion of your rheumatologist. For me it was a no brainer, I went for it as it was giving me the best chance of survival and keeping the breast cancer from coming back. I wish you the best of luck and I hope you get the best treatment possible, the radiotherapy staff will give you the best advice possible.

Good luck

Paula

[jamesroybuck in reply to Pms1888]

Hello Paula , thank you so much for taking the time to reply and I'm pleased to hear that your treatment went well. My main concerns with embarking on Radiotherapy are the possible complications with SLE / APS / Warfarin.The part that really concerns me is that when I put these concerns to the radiologist and consultants they all assure me that there will be no problems and yet when I research this on line there is no meaningful research to be found; so it makes me wonder where they are getting their information from to be able to offer me such strong reassurance of no problems. Once again thanks for the reply and keep well. X James

[Pms1888 in reply to jamesroybuck]

Hi James, I suppose the fact they are saying there should be no significant problems, is better than mine where they said it could potentially lead to fibrosis of the lungs. Given that I had to deal with Stage 3 Breast cancer I decided to go with it. If in years to come it causes me a problem then I’ll deal with that when and if it comes.

It’s a really difficult decision to make but it was one that I really had to go with.

I hope your treatment goes well.

Best wishes

Paula

[jamesroybuck in reply to Pms1888]

Thanks Paula ; I'm around fifty fifty on whether to have the treament or not at the moment ; I'm not particular religious but some divine advice would be good. Take care.

James

[Pms1888 in reply to jamesroybuck]

Good luck to you James and yes take any advice you can get, divine or otherwise. 👍