Is this right? Can anyone help me

[Eileenmc63]

I was diagnosed with lupus a year and a half ago. I took a bad turn last year where it affected the brain, very scary time but okay now. I have been diagnosed with lung and throat cancer and doctors has said I will not get radiotherapy treatment because of the Lupus. I feel they are giving up on me without even trying anything. Is this right?

[Bellaflowe]

Hi there.

I don’t think we’ve spoken before, so I’ll say hi and introduce myself first. I’m Suzy and I’ve had lupus for 17 years, so I usually answer the questions people have on symptoms, side effects or different drugs, as I’ve taken most of them over the years! 😊

I noticed your message, however, and I just wanted to reach out, almost as if I’m holding your hand. What a horrible time you’ve been through. You must be so exhausted and confused about what’s happening. I wish I could offer you an answer on your question. Do you mind me asking what age you are? Please don’t answer if that’s too personal, I just wondered whether your age has something to do with you not getting radiotherapy. Has your doctor offered you a different treatment or told you how advanced your cancer is? It is very unlikely that your doctor would just give up on you. Have you just been diagnosed and if so, are they doing more tests to see how advanced the cancer is first? I know I’ve asked a lot of questions, it’s just to get an idea of the situation you’re in right now.

What I do understand and can absolutely relate to is lupus and neurological lupus, which I was diagnosed with 5 years ago. I understand how horrible it is and how, to this day, my life is still nowhere near back to normal. I am actually going in to hospital tomorrow to have moles removed that my specialist suspects are cancerous. However, lupus or cancer, I am here if you need to talk anytime. Even if you just want to talk about the weather or favourite books - I’m here. Also, don’t hesitate to call your doctor and ask more questions about this. It might make you feel more at ease. I always tell people that they should never care about being a ‘nuisance’. Keep calling until you have your answers.

Peace and light to you. Hugs.

Suzy x

[Eileenmc63 in reply to Bellaflowe]

Hi there thanks so much for your message it was really kind of you to reply. You asked my age I am 55, I was told Lupus lies in your body from maybe at the age of 20s before it flares up. If this is true I already received chemotherapy, radiotherapy and herceptin in 2011-2013 for breast cancer and I was fine after that. I don't see what they're problem is now, I have appointments on the 13th & 19th February so I feel I will really need to argue my case with them. I will keep you updated thank you x

[Loopyloo43]

Hi Eileen I do hope one of your Drs can give you proper answers to your questions which I feel you need to put your mind at rest. I can only think this is a dreadful time for you. I often wondered about this with having lupus. Myself with it being a auto immune issue and that radio therapy makes the normal immune system break down and suseptable to infections so it would be a double whammy this is what I would think if it was for me I do hope get the help and treatmentbyou need . Thinking of you 🤗 Sandra

[Eileenmc63 in reply to Loopyloo43]

Hi thanks so much for replying to me. If this is true you can't get treatment through cancer then why did they give me radiotherapy, chemotherapy and herceptin in 2011-2013 for breast cancer? When I was told that Lupus lies dormant in your body when your in your 20s it shows itself later on in life so I must have had it during this time wouldn't you think?

[misty14]

Hi eileenmo

So sorry to read of your cancer diagnosis!. You've had a very worrying time with your health and it's awful your facing more. As to your radiotherapy question you need to ask your doctors because there might be a good reason for no radiotherapy and there not giving up on you. There going to have to juggle cancer treatment with your lupus treatment( you don't say what drug your on for lupus) which can be tricky!. Do keep us posted how you get on. Best of luckX

[Eileenmc63 in reply to misty14]

Hi thanks so much for replying to me. At the moment I am on hydroxychloroquine and permanent steroids but I was taken off mycophenolate because made me very listless and tired. I had two sessions of intravenous treatment, everything just seems to be on hold at the moment because of this cancer treatment.. Or lack of it should I say. Thanks again x

[misty14 in reply to Eileenmc63]

Hi Eileen

I've just read your other reply and I do know thru other people that you can only have radiotherapy once!. You really do need to ask your doctors and ideally your oncologist and Rheumy should work together to come up with best treatment plan for you. Are you due to see either of them?. I'm so sorry what has happened to you you must be worried sick. Funnily enough I had to come off Myco after taking it for years and am now on permanent steroids like you. What dose are you on?. I'm stuck on 7.5mg as can't reduce further but my Rheumy's want me to. Anyway, all the best and keep us posted how you get on. I'm sure it will be sorted out soon. Sending you a cyber hug too. Take careX

[Eileenmc63 in reply to misty14]

Thanks for your information, I am only on 5mg of steroids a day as I was putting on far too much weight haha. I am not due to see any of them except from the lung specialist and throat specialist at the momemt so far x

[misty14 in reply to Eileenmc63]

You've done really well to get to 5 mg Eileen , the safer daily dose!. I've never managed it yet and do agree it's hard with the weight problems!. Good luck with those appts, hope they go well. X

[PMRpro]

I'm so sorry about your diagnosis - you really do seem to have drawn more than your fair share of short straws. All I can offer is virtual hugs coming your way.

This might be interesting - and worth asking WHY they are ruling out r/t:

hss.edu/conditions_lupus-ra...

Hard as it is to face, sometimes r/t and chemotherapy aren't appropriate, it very much depends on the type of tumour, where it is and the speed at which they are growing. If it isn't going to have an effect on the cancer then it may be worse to use them than not to.

[DJK99]

Hi Eileen. I’m very sorry to read your news. You must be very worried and confused - let alone feeling helpless. The clinicians really need to give you a lot more info to help you understand their reasonings ie prognosis if they did give therapies and also if they don’t.

I was diagnosed with breast cancer three days ago and was immediately advised I was to have lumpectomy and lymph nodes removed / then a week of radiotherapy. I have mod aortic heart valve regurgitation and Atrial Fibrillation so am v worried bout effect of radiotherapy as it can damage valves apparently and it will be right on that area below - but they’re still planning on doing it. Ditto, despite my moderate SLE. I have really raised the issue again post my own research as what’s the point of radiotherapy if it makes us very ill in other ways?! The macmillan nurses have invited me in to discuss everything again next week. I see the helpful link to research article in another post here which said they’d still give treatment despite a person having SLE.. I had already read those they mention in it.. but guess it really depends on an individual’s own co morbidities. I take it they have given you all their reasonings and weighing up of risks?? I do hope so - could you get a second opinion? Speak to Mac Millan ‘maybe? Also are you my age I wonder? I’m born in 63... Gentle hug, D x

[Horsewhisper in reply to DJK99]

Hi Deb, I am really sorry to hear about your diagnosis, I do hope you get the support and treatment you need - it sounds like the Mac nurses have you in their sights which is good. Cyber hugs to you at this difficult time xxx

[Eileenmc63 in reply to DJK99]

Hi thanks so much for replying to me. I heard that Lupus lies dormant in your body for years before it surfaces. I was also born in 63, I had breast cancer in 2011 when I was 48 I received chemotherap, radiotherapy and herceptin and to be honest other than tiredness I was fine so if anything maybe just aggregated the lupus if it was already there. I hope your treatment goes really well and now I have heard it is up to the individual health board as Glasgow health board won't do it, I actually live in south Lanarkshire so I will try push them for amswers. The cancer has no returned in the throat and lungs and I can only pray they will try something. Good luck for the future and let me know how you get on! x