My mum has small cell lung cancer and is going to have radiotherapy and possibly brain radiotherapy. Anybody know any experience with this

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

11 Replies

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  • Hi Kelly, so sorry to readyour sad news of your mum.

    Small cell lung cancer is a dreadful cancerous disease and spreads fast . My mum had this last year but unfortunately it was too late for her. For your mum having lupus as well as this cancer is a difficult choice i would have to question and ask the advice of the professionals.

    I tnink personally the radiotherapy taking upon risks because you can control lupus with affects of of other medication like pred and immunesuppresants. Cancer spreads quick and i would want to control this first if it was me. I am NOT a dr or professional. Your mum wont have much quality of life but at least you will have her a bit longer. Once the cancer hits the brain then only then its all over.

    I am sorry i cannot offer you the answer but someone on here might.

    I am sending you ((big hugs))

  • Thank you for replying and kind words xx

  • Hi Kelly. I'm so sorry that you and your mum are having to go through this. I feel very strongly that you need more information from the oncologist and a rheumatologist who should be in discussion with each other. If you have the consultant's email address, you should be able to contact him very quickly.

    Small cell cancer can be aggressive but it is sensitive to treatment so do stay positive. My elderly father was treated aggressively for bowel cancer last year whilst also being battered by RA and Sjogrens with, coincidentally, 2 broken legs & head injury, courtesy of a speeding driver in his village. He seemed sooo frail but he's through and out the other side, enjoying life and planning a holiday in Venice in June! Your mum is lucky to have you alongside. Please keep us updated on how treatment goes. Love and hugs to you both xx

  • Thank you for replying and I will be taking your advice and getting oncology and rumy involved :) thank you xx

  • I am a 73 year old male with Full Blown Lupus and small cell lung cancer, diagnosed March 2016. Had Chemo with no problem followed by radiotherapy covering my chest area. Radiotherapy was a real problem area as my Oncology Prof. could find no reliable data re. Lupus patient having Radiotherapy, the decision to go ahead was mine and I had nor real ill-effects other than a sore throat and a bit of a rash on my back.

    Have had 2 brain scans,both clear. Now on my 2nd session of Chemo. which is a rather more aggressive form; there is another form of even more aggressive chemo. which my Prof. felt too risky for me with Lupus - any negative consequences likely to be permanent. Despite all this I have manged 3 overseas hols. in past 14 months. I ave never had to stop or vary my range of Lupus meds.

    You will find Oncology are best placed to make all the judgement calls with Rhuemy very much taking a back seat. Hope all this helps. Thoughts with you and your Mum.

    Gordon PR

  • Hiya thank you so much for you replay. May I ask are you having cranial radiotherapy on your brain or has it been in talks, if so what was the experience of that risks wise?

    I really do appreciate you reply, your experience is so helpful and I hope all is well

    Thanks kelly

  • No I did not have cranial radiotherapy. If you Mum is going down this route it must mean they have identified 'C' growth or indicators there, a great shame. Sorry for not being more helpful.

  • They said her scan on brain was clear and that's it's to prevent it spreading to the brain if it came back, that's why cranial has been offered on the brain.

    You have defiantly been very helpful

    Thank you

  • Hello Kellymw, I wish I could be more precise, but can only relate my story. After breast cancer I was advised very strongly by my oncologist & specialist from The Royal Marsden that radiotherapy was not recommended post surgery, as I would probably be in much more trouble .My oncologist had researched this with The Royal Marsden & that was the decision. I was & am accepting of this as they explained with my autoimmune problems the cure would be much worse than the disease. It is so important to remember every patient is an individual & needs assessed as such. You are a very caring daughter, who wants the best possible outcome for your mum. Have you spoken in depth to medical professionals & the oncologists who are aware of autoimmune diseases? How did the chemo go? Have they discussed how things might be if the chest area alone was treated, as, at this stage the brain is clear. It must be so difficult for you to watch your dear mum dealing with the situation & likewise her for you. She may have her own thoughts. Just when one aspect of the treatment is completed it is heartbreaking that more decisions have to be made. I am so sorry that this is all I can offer you, sorry for not being able to be more helpful. My thoughts are with you & your mum.

    Peace & Love Pixiewixie xx

  • Thank you for replying,

    Her chemo wenthe okay, she is currently trying in hospital being treated for neuteopenic sepsis but we always catch it early so she always just feels a little unwell. We are hoping to speak to someone at some point about this device is ion because why would you Risk brain radiotherapy on your brain which could cause you to have a stroke and dementia when there brain is clear as of now. It's just so unfair on her :( am just trying to help the best I can.

    Thanks again for replying your experiences helps:)

  • Dear Kellymw I do hope your poor mum feels a bit better very soon & her neutropenic sepsis is dealt with very quickly. You are a very loving daughter who cares so much about your mum. Do you think that perhaps you have already answered your question when you say 'Why would you risk radiotherapy .... when the brain is clear now". This is a very important factor. I understand what you are saying & that would also be my thought. There is no easy answer & my thoughts are with you & your mum. I am sorry if you feel I have spoken out of turn. I am thinking of you & hoping you get all the advice you need. Take care xx Pixiewixie

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