hello to all of you warriors, I haven’t posted in a long time but do read daily posts.
I have had lupus for over 30 years but the last few have been particularly difficult.
I’ve recently been diagnosed with lung cancer and won’t be able to have radiotherapy or chemotherapy due to the lupus.
Has anyone else found themselves in this situation and how was it dealt with?
I’m having surgery on 2nd of August so any advice would be greatly appreciated.
thank you for reading my rant
I think you are entitled to rant.m thinking of you.
Hi Sally, and thank you for sharing and your post is most certainly NOT a rant! I haven't experienced what you are going through but have you tried reaching out to one of the Maggie's centres? It's a non-clinical setting and they have a myriad of specailists who visit the centre, who might be able to answer your question (if nothing turns up on HealthUnlocked). Also, they can do the leg work for you, so to speak, in finding out if any of their colleagues have come across anyone in the same position as yourself. Maggie's centres are usually based within the hospital grounds. It's worth a try because they are wonderful. The only reason I am aware of these services because they supported a relative of mine who was diagnosed with lung cancer but she didnt have lupus. Hope this message helps and try to be gentle plus caring with yourself. Sending you massive healing hugs. xxx
hi Sally, have they said why you can’t have the treatments, I don’t understand because of lupus? What a worrying time for you. I hope the surgery on 2nd Aug is successful. X
Hi Chris, thank you for taking the time to listen. They say that because of the lupus these treatments are not possible.
If I don’t have treatment they’ve given me 2/3 years, maybe just saying to them to give me radiotherapy anyway I might have a better survival rate. I’ll wait and see what other possibilities they can offer.
Hope you have good day and thanks again x
Hi Sally
Sorry to hear about your situation. Just to say I too have had lupus for about 30 years. I have had lymphoma for which I did have chemotherapy which was successful. I then had lung cancer for which i had surgery which in my case was unsuccessful. I then had microwave ablation and two years on am clear. They did say if the lung cancer returns I could have chemo but obviously every case is different.
Surgery is the gold star treatment for lung cancer and I hope your op goes well. I had open surgery but did bounce back quite quickly afterwards. Best wishes
hi Lovemydogs1, Thanks for your reply, you’ve certainly given me some hope. As you say we are all different but nobody has ever mentioned microwave ablation.
I hope that you are staying well and being kind to yourself, you deserve it xxx
Hi, my husband has just went through chemo radiotherapy, he was told if he had been 70 he wouldn’t have been offered it. He is 70 in March. Also if he hadn’t been fit it would have been a no. He has just recovered from major surgery and had to wait 6 weeks before treatment started. It has been a tough treatment and is still recovering from it. He doesn’t have lupus. I do and had chemo a few years ago as I had lymphoma . It could be they are worried if you take a flare during treatment and it has to be stopped. Doctors told my husband he could miss a few radiotherapy treatments as it would be still added on but wouldn’t be able to give him anymore chemo, it has to be timed with the radiotherapy for the best result. I wish you all the best, I’d get a second opinion, they should at least let it be your decision, they did that with my husband, he decided to give it a try.
Hi lizard28. Thank you so much for your reply and sincerely hope that your husband is doing well. Im71 and maybe that has something to do with the decision they have made I agree with you in so much as it should be my decision and had already toyed with the idea of going ahead with the radiotherapy anyway . This only came about because 3 years ago I had a scan which showed a cyst on my lung which my GP wanted monitored, it didn’t happen. At my last appointment they wanted to discharge me for the respiratory clinic which I refused until they gave me another scan I even offered to pay for it myself. They contacted me the day after the scan to tell me they were pretty sure it was cancer.
I’ve had regular appointments since then but before leaving this particular surgeon I said that next time I’d just ask Alexa 😂. Looking after someone 24/7 is exhausting so I hope you’re looking after yourself. Take care x
Hi Sally, it’s awful that you have to fight for treatment, you know your own body. My husband had a super ENT consultant but his oncologist needed a personality bypass, told him nothing but did leave his decision to him. His ENT consultant told him he did the right thing, it’s such a hard journey but he has finished all treatment, been in hospital for 8 weeks, home now for recovery. It’s been so hard on both of us, I was just hoping not to go into a flare but so far so good, I’m taking it easy now. I love the Alexa comment, we could have said that to his oncologist lol. I wish you all the best, stay strong Sally 🤗xx
I did not realise people stopped being offered some cancer treatments such as some forms of chemotherapy when they got to 70.Is it worth contacting charities such as Age UK and also maybe some cancer charities to check this.
So three score years and ten, and then ..?
I think decisions should be depending on the health needs of the patient and not on their age.
I think it’s the Chemo-radiotherapy that has the age limit on it, it’s a harsh treatment compared to just chemo or radiotherapy. This is what the consultant told us, they would not do it if they thought you couldn’t complete it. Again it probably depends on the type of cocktail chemo it is that they give you. It is tailored to suit the type of cancer and severity of which you have. The chemo part was very intense that my husband had, he had to stay in overnight and took all day and most of the night to get and had to also have his radiotherapy for 30 days.
Hi Sally, I had the same thing happen but had spoke to the surgeon post op and he assured me that they had got all the tumour and in his opinion chemo wasn't absolutely necessary so i was happy with that. I am now past my 5 Yr period and still all clear, hope that gives you some assurance on the plus side you dont have to go through the effects of chemo.
It may be worth giving Lupus UK a call.
Maybe surgery is a the better option but then the reasons should be properly explained.
It seems strange that other treatments are denied because of lupus. Have they got evidence from research that backs their claim?
What NICE guidance or other guidance includes lupus as an exception?
Having to worry about something like this is the last thing you want. It may be worth discussing with your GP what has happened and your feelings about it all.
My GP said I could discuss hospital appointments once when I was having issues with them.
Take care. Thanks also for sharing as it is important we all know where we stand. Many of us will get cancer at some stage, is it 1 in 2 of the population now.
Sorry to hear about your diagnosis. I have had lupus for over 20years and was diary with breast cancer in 2021. after 2 surgeries I was given radiotherapy which I was told I was at greater risk of but this was worth having regardless. I had oncotype testing to see if I would benefit from chemotherapy but fortunately didn't need it and receive oral hormone treatment for the cancer instead. I would, however, have been offered it and taken it if necessary. As everyone else has said they must have reasons why they don't want to give either. Is this from the oncologist or your rheumatology dept? Might be worth another opinion. Take care
hi Minnie, thanks for your reply.
I have made an appointment with the oncology team for the 27th , I need to find out every detail now before I decide what for me is worth the risk.
I really hope you are staying well and looking after yourself. Take care x
Sorry to hear about your diagnosis. I have had lupus for over 20years and was diary with breast cancer in 2021. after 2 surgeries I was given radiotherapy which I was told I was at greater risk of but this was worth having regardless. I had oncotype testing to see if I would benefit from chemotherapy but fortunately didn't need it and receive oral hormone treatment for the cancer instead. I would, however, have been offered it and taken it if necessary. As everyone else has said they must have reasons why they don't want to give either. Is this from the oncologist or your rheumatology dept? Might be worth another opinion. Take care
Hi Sally,I hope all goes well for you & do reach out to cancer supporting organisations, incredibly helpful during & after diagnosis & treatment...
I had both surgery & chemotherapy. It's about 3 years since surgery.
I had stage 3 bowel cancer during early months of pandemic shut down, so my much needed diagnosis & treatment was delayed, eventually they (UK surgeons board) allowed for operations & I was now at least 7 months of symptoms 1st occurring due bowel blockage.
-If your op involves key hole surgery take it, harder to recover when they cut you open (I was given that option as they wanted me on & off table quick & I went in as urgent case by the time they were allowed to operate on non covid cases.
-If you have any urgent dental work get it done before any possible op or chemo (I had tooth pulled & healing took a very long time due to chemo). Or ask about it prior to treatment.
-Treatment sounds urgent, especially as it is your lungs, hope they move asap which they sound that they are.
-Hard to say what was causing me issues after surgery & chemo if attributed to my autoimmune diseases, the meds I was on like immune suppressants or impact of everything....
-Lung cancer is a very, very, urgent cancer which needs treatment asap, they may offer chemo etc after surgery & they should monitor tightly due possible spread, check NICE guidelines on this. I say this has my hubby had it, so my thoughts & lots of hugs are with you.
M
Hi there sally10,
I am so sorry that you have been struggling the last couple of years and to hear about your recent diagnosis of lung cancer.
I have included below a link that you might find helpful in the lead up to your surgery next week and for your recovery:
hopkinslupus.org/lupus-info....
If you need advice or just a chat, you can call our helpline on 01708 731251, which is open 9am until 5pm Monday to Friday.
I wish you all the luck in the world for your surgery and a speedy recovery!
Regards,
Michaella
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