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
Written by
Kellymw
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My darling wife was diagnosed with Rheumotoid Arthritis 34 years ago this diagnosis was changed to Lupus 6 years ago. She is due her Sixth Chemotherapy Cycle today, no Chest Radiotherapy but Cranial Radiotherapy in 3 or 4 weeks. Everything thing I have read says that it was one time thought Lupus sufferers were more at risk but recent research shows The possible side effects is no worse on Lupus sufferers than anyone else.
But there are possible side effects, like some memory loss which to be honest is a symptom of Lupus, which in my humble view is possibly where the original thinking on Cranial Radiotherapy and Lupus came from.
So far because she has Lupus she has dealt with the Chemotheraphy very well and research is presently going on as too the possibility of using a Lupus Antibody to destroy cancer cells.
I find Cancer Research UK to be far and above the best website to visit to check out for information.
I guess at the end of the day we have to make a decision based on our individual circumstances and the ages of our loved ones and lessor of two evils.
I'm sure the Roy Castle Team will give you some sound advice.
As you say it's not an easy and straightforward decision to make, so all I can advise is to discuss things more with your Mum and your Oncologist and the Lung Nurse, and weigh up the Pros and Cons.
All the best to you and your mum, I hope everything goes well her treatment and everything turns out for the best whatever you decide.
Thank you so much for your reply, it's such a difficult decision for my mum to make, she has had 4 chemotherapy cycles and has been in hospital with 3. She has delta with it very well and she has never had a problem with her white cells dropping. She has had infections and developed sepsis due to bacteria growing in a hickman line she had put in. The way the consultant came across discussing radiotherapy to the brain, he didn't want to say go for it as she has lupus and the side affects could be greater but if she had it done he would lower the dose. If she didn't have lupus he would say yes to it straight away. Although she is having radiotherapy on her chest close to the gullet, there is a little nodual the the top left of the lung and he is wary of doing that aswell because she has lupus.this nodual has shrunk in size with the chemo and although they don't know it's cancerous. It would be better to have that zapped to but he's wary of side effects. My mum does have fibromyalgia but it's hit and miss with lupus. I think a discussion with her rumy consultant is needed.
Please keep my updated on your wife and I hope all goes well
Hello Kellymw, I am sorry to hear that your mum has been diagnosed with small cell lung cancer, the decision to have whole brain radiotherapy will be difficult, discuss the options with your oncologist and ask the opinion of the medical team involved in treating your mums lupus. I have added a link below to the cancer research website which gives you some information on prophylactic cranial irradiation. The lung cancer specialist nurse will have access to your mums medical records and she will also be able to give you information and support you.
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