Small cell lung cancer patients with lupus and possible while brain radiotherapy

Hi all

My mum was diagnosed with small cell lung cancer and just finished her 4 cycles of chemo. Today we had a consultation to speak about radiotherapy but as she may have lupus ( tests keep coming back as positive and negative ) the consultant said that because small cell lung cancer usually spreads to the brain, he would offer radiotherapy to the whole of the brain as a preventative measure. However because she is question mark lupus, he said that the side affect could affect her more than the average person and could cause all these horrible side effects such as a strokesurge, dementia ect. I was wondering if anyone had any experience with whole brain radiotherapy and what's it like and what side effects happened and if any one with lupus has gone ahead and had it done and what was the outcome?

My mum has a week decide what to do, she is going ahead with the radiotherapy on the lung but with the brain shes unsure weather it will be worth it?.

Does she take the brain radiotherapy and potentially decrease her quality of life just to prevent the cancer going to her brain a little longer? Or would it work all together?

Or does she refuse for it to possibly come back and spread to the brain but her quality of life is fine in between and deal with the cancer if it happenes?

So many questions not many answers

Thank you for reading

6 Replies

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  • I dont think anyone can really say one way or the other. My daughter in law has lupus (SLE) and has to have chemo for breast cancer very soon. No radiotherapy offered.

    Not an easy decision to make and l feel for your dear mum. It's made more difficult by not really having a lupus diagnosis.

    I wish your mum well and you too. Can the doctors not be more helpful? Xxxxx

  • Thank you for taking the time to reply. I think I may get on to the doctors to get a proper diagnosis on the lupus. It's such a shock for her to have to decide about the brain radiotherapy with these possible side affects in mind :( I just don't know what to say or do.

    It really has put her down and this is for her life, how do you make that decision. The consultant said that if she didn't have lupus he would 100 percent recommend the brain radiotherapy, so I guess he's wary about the side affects to.

    I will defiantly take it up with the doctors and try to get some answers to help he make this very important decision.

    Thank you for replying :)

  • I really do wish your mum well Kellymw and you too. Xxx

  • What a very difficult decision. My heart goes out to you all. Lots of love and support.

    K xx

  • Thank kelly you so much xx

  • Hi, what a terrible dilemma for your mum and only a week to decide AND get that final diagnosis.

    I can only suggest you put the same post on the Healthunlocked Lupus site as well - I think you click on 'Your Communities' above to find it. Both sites will have a help line to ring for medical people to talk to - here it's: 03000 555030 it could be the same for the Lupus site.

    My dear mum had lung cancer, mastestacised from a small bowel cancer years before. It also got to her brain and she did agree to have radiotherapy to the brain as she was so find of life, however, on the day to go she just couldn't face it and changed her mind. She was 83.

    My last paragraph won't help you at all I'm sure. There was no lupus involved. I think mum thought long and hard and decided she'd had a brilliant life. Whenever she asked me what I thought I always said if it were me I'd go for quality of life over length a she always said she felt the same.

    Wishing you and your mum all the very best, especially with getting that diagnosis ASAP. Peege

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