Side effects of radiotherapy on patients with SLE - LUPUS UK

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Side effects of radiotherapy on patients with SLE

Neontiger2203
Neontiger2203
22 Replies

Hi

I was diagnosed with lupus 11 years ago. I've been really lucky in that, aside from the initial flare (bilateral pleural effusion with a very small amount of fluid around my heart) from which I was diagnosed, I haven't had any major problems, in fact 2 years ago I was told I might not even have lupus anymore (I didnt think that was possible so I've taken it that it has been dormant)

Nearly 3 months ago I was diagnosed with very early stage breast cancer with no lymph node involvement. My treatment plan was lumpectomy followed by 3 weeks of radiotherapy then hormone treatment. Surgery went well and a couple of weeks ago I met with my oncologist for the first time and was told that, due to my lupus diagnosis, I have a higher risk of late side effects from the radiotherapy, (heart and lung problems, thickening of the treated area, rib fractures etc). Every person is at risk of this but mine risk is increased apparently, even though she couldn't give me any statistics or solid facts.

I've now been given the choice of a mastectomy (drastic given my tumour was pea sized) or basically take a chance with the radiotherapy. Nothing had been mentioned prior to this and neither my surgeons or breast care nurse were aware of any possible complications.

I spoke with my rheumatologist who has said she wasnt aware of there being an issue either and she would be happy for me to go ahead because if she was seeing me for the first time now, she wouldn't be even diagnosing me with lupus at all. (I also have psoriatic arthritis which she says is the focus of my treatment now and not the lupus). My oncologist is still saying, even with that information, that there could, maybe, be a higher risk.

I guess what I'm getting to is does anyone with lupus have experience of radiotherapy. Has anyone been told they cant have it or read anything regarding this matter because I cant find any thing and I'm really confused as to what to do.

Thank you

22 Replies
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poemsgalore1

I can't comment on your question as I don't have Lupus, but I have had breast cancer but I couldn't have radio as I have a lung condition (Bronchiectasis) and radio could have caused Lung Fibrosis which I am at risk of anyway. I did have Chemotherapy after a full mastectomy, and as my 3cm tumour was Oestrogen positive I took an aromatase inhibitor for 5 years. I also had one lymph node affected so had that removed with the mastectomy. Also had vascular invasion. I hope you manage to make the right decision for you

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Neontiger2203

Hi. Thank you so much for replying.

I think if my oncologist had been able to say, yes, you are at risk of severe late side effects because of the lupus, I wouldn't have a problem. But I'm getting conflicting information from her. On the one hand, there are reports that lupus patients have a higher risk of severe late toxicity and on the other, that there are a number of case reports showing no increased toxicity.

I change my mind daily. Seems daft to potentially risk my future health for a breast. But I still feel I need more information before I decide. I'm trying to get an appointment with my rheumatologist before the 6th Aug (when I have to make a decision) and I'm seeing a surgeon next friday to discuss possible mastectomy options. Any advice you have on that would be helpful too.

I hope you're well and again, thank you so much for your reply.

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poemsgalore1

There are so many options regrding Breast Cancer treatment, perhaps you could visit breastcancercare.org.uk/ and Talk to the breast care nurses

on 0808 800 6000

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Neontiger2203

Thank you. I'll give that a try. I have spent a lot of time on the internet regarding this and think I may have seen the site but I'm not sure what I've read or haven't read anymore. Thank you again.

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panda2
panda2
in reply to poemsgalore1

uggg....that's a tough story poems. And now you're here too.

Px

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smudge1980

Hi Neontiger, ever since reading about your dilemma I've struggled with myself as to tell you about my experience or not. Anyhow I've decided to tell you but I can't say what happened to me will happen to you or anyone else.

In 2006 I was diagnosed with stage 2 breast cancer with 4 lymph nodes involved. I had a lumpectomy and the surgery went well. It was followed by 3wks of radiotherapy and from the first session my skin started to burn but we carried on. My breast was badly affected and it mummified, meaning it was basically dying. In the end the only thing left for me was to have a mastectomy. Because the skin in the full upper quarter of my body was affected I had to have a free-tram-rebuild. They took muscle, flesh and skin from my right side of my tummy and rebuild a breast. Amazingly it worked and it looks like a breast but with no nipple. Looks and feels normal in a bra. I have sle, Sjogrens and am photo sensitive. I wasn't diagnosed till 2013 but had all the symptoms in 2006. My rheumatologist won't confirm my suspicions that been photo sensitive probably caused my problems. If I knew then what I know now, I'd have just had the lumpectomy and taken my chance's. The surgeon who did the lumpectomy was very confident that she'd got all the cancer and it was routine to follow up with radiotherapy. The surgeon who did the mastectomy and reconstruction had never come across my problem before.

I don't want to sway you as to what to do, I just needed to tell you my experience. I found that the consultant's and surgeons were intent on helping me and I received excellent service from them, but nobody wanted to find out why it happened. It all fell into place for me when I was diagnosed with my immune problems. Hope you manage to resolve your dilemma and settle on a treatment plan best for you. Ask questions to your medical team and don't be fobbed of, you need straight forward answers, it's your life after all. Good luck with everything, I'll be thinking of you.

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panda2
panda2
in reply to smudge1980

smudge -- this seemed a very hard experience for you to share and no wonder! What a horror... I'm so sorry. Please know you made a difference by sharing though.

Panda x

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smudge1980
smudge1980
in reply to panda2

Thank you panda2. I've convinced myself it happened because I'm photo sensitive, which has got worse since the radiotherapy. I regard myself lucky that it happened later on in my life, when I was 52. It has changed the way I think about life and how I now live my life. I'm 65 now and still going strong 😁

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panda2
panda2
in reply to smudge1980

An an inspiration to many, no doubt!

Px

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Neontiger2203

Hi. I really glad you replied so thank you. I'm still not much closer to a decision but I'm seeing a reconstruction surgeon on friday to discuss my options if I decide to go with the mastectomy and hoping to speak to my rheumatologist next week and get an up to date blood test done and any more insight she may be able to offer.

I cant complain about my care thus far. It's been amazing. I just think this should have been addressed at the beginning. And as far as straight forward answers go, I'm not sure there are any. It feels like a toss of the coin which isn't the way to make this sort of a decision.

I did query not having either but my oncologist says that isn't a choice at my age (I'm 51) even though I will be having hormone therapy for 5 to 10 years after and there was no lymph node involvement. I'm not pushing for no radiotherapy. I'm just pushing for some sort of solid information to base my decision on.

It sounds like you've had a wretched time and I hope you're doing well now.

Thank you again for your response. It has helped.

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panda2

This is a lot to digest for you and you've received really good and sensitive responses from poemsgalore1 and smudge1980. I hope these are going some way to help you work through your decision.

I'm in this same camp with all of you, having had breast cancer in 2012 and then Undifferentiated Connective Tissue disease 2017. I had Stage 2 Grade 3, no lymph node involvement. It should have just been a lumpectomy after my chemo, but I did the genetic testing (because my sister got breast cancer at the same time) and we found we are BRCA1 positive. So in a very short time I had to switch from lumpectomy to bi-lateral mastectomy even though I was also told they were fairly sure the chemo had obliterated the tumour. In the end, it was the best decision I made. I no longer worry about my breasts with regards to breast cancer.

2017 rolls around and everything goes crazy in other areas. Photosensitivity being one of the most alarming of them all. I can barely stand 10 minutes in the sun without it scorching me. I'm burning through windows and my clothes. And I have to say that I am beyond grateful that I never had radiotherapy. I somehow can feel that it would have been a minefield for me. Cancer itself screws with our immune systems and if you've got a Lupus history (even if dormant) it doesn't take much to stir things up. I had chicken pox when I was 5 and about a week ago -- 45 years later -- I now have Shingles, which is the dormant chicken pox virus.

I really feel for you as you do have such a lot to think about here. There is a big picture, which is not yet formed. If only you could know how your body would react... smudge1980 shared such an important story of what can happen even in ways that the docs aren't expecting, over and beyond what you've been told about.

I wish you all the very best advice and instinct as you decide. Come back at us if you want to mull it over more.

Panda x

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Neontiger2203

Hi panda.

I do feel like I'm being mardy when I read yours and others stories and the things you're all having to deal with. I have been lucky (touch wood) regarding my lupus, only having real problems when I was first diagnosed. And the breast cancer could have been so much worse. So the fact I'm getting bent out of shape about this decision makes me feel like a moaner considering what others are putting up with.

I do worry that stressing about this decision will trigger a lupus flare, which I guess would make the decision for me.

I was actually quite calm when they told me it was cancer. They were so positive from the beginning it instilled confidence in me too. I dont blame my surgeon for not being aware that radiotherapy could be an issue for me, in fact she has now requested more information so this is discussed at the beginning of treatment, should anyone present with Lupus or similar, which I'm really pleased about because thinking you're about to be coming to the end of treatment then have this curveball thrown in, isn't good.

I do hope you're doing better. I cant imagine how you deal with your health issues. Like I say, I shouldn't really be complaining about mine, I'm just hoping for some clarification.

Thank you again and take care

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panda2

There is nothing moaning about this at all! It's a huge decision! And there is more to weigh out because you've had more than just cancer in your history. And everybody's body is totally different. We will react differently to different stimuli or suppression, so it really matters more that your decision matches your life.

Something jumped out at me when I read through all your responses to us here. When I was making the decision for the bilateral mastectomy I was also given the option (quite strongly) for reconstruction implants. My first instinct was to say no, I don't need those. But they talked about how normal I would be and how my clothes would fit and somehow I found myself getting reconstructed implants. Only very recently it has come to light that these very implants are the ones giving women cancer. It is also under the microscope that implants could be behind some Connective Tissue Diseases. So, though I am very grateful for the opportunity to be normal and fit in my clothes for the past 7 years and I understand how well-intentioned that procedure was, I'm now going through the process of talking about explant. I think my own initial instinct was right at the time.

I guess I'm also wanting to say to remember that doctors are not necessarily suggesting one thing to you or another. But we get a sense of how they are leaning in the moment and that influences us. Now that you have all the information you need, if you could take those influences away, are you able to say what you would feel comfortable doing?

All the very best with this!

Panda x

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Neuronerd

ncbi.nlm.nih.gov/pmc/articl...

This is the only study I could locate. It was done by the National Institute of Health. There were only 15 people in it. No one suffered long term effects. I will continue to search for studies. Perhaps they mean idiosyncratic issues; you know, the things our bodies do that make no sense to anyone else. They sound worried to me but not knowledgeable of the very low degree of threat that this concomitant illness poses. (Just drop down to the Conclusion if you don’t like reading medical details. I love them but I’m a nerd.)

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Neontiger2203

Thank you so much neuronerd! I really appreciate you taking the time to research this for me. I've struggled to find anything regarding this matter at all. This is really really interesting.

I was diagnosed with SLE rather than DLE affecting my pulmonary system though I'm not sure that makes a difference. You probably know better than me on that score.

Thank you again. I'm really grateful for your help.

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Neuronerd

Any time I can help just let me know. Best of luck to you. You’re in my prayers. 🙏💛

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Jmiller623

So sorry to hear of the news and ongoing predicament. Breast cancer along with ovarian are unfortunately more common in women with lupus. I messaged you with some questions pertinent to your cancer treatment. So sorry this has happened but I promise you will be okay if the tumor was removed in its entirety! This is a big step and great news in itself.

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Neontiger2203

Thank you! I'll take a look at your message and send over the details.

And yes, the tumor was only 9mm, completely excised and with no lymph node involvement so I'm very very lucky. Thank you again.

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Roarah

My rheumatologist specializes in autoimmune disease caused by neoplasm. The treatments and the actual cancer can both set your autoimmune system into over drive. In my area, north east USA, there are many rheumatologists who work within or atleast along side the oncology hospitals. Can you inquire if it is an available field in your area?

it is not coincidental that treatments between certain cancers and autoimmune disease now over lap. Many cancers and autoimmune diseases have genetic and inflammation causes. Especially breast, ovarian and CRC.

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Neontiger2203

Hi roarah

Thank you for your reply.

My oncologist and rheumatologist have liaised via email. My rheumy has said she believes I'm ok to have the radiotherapy and my oncologist, well, I get the feeling she thinks I should go for the mastectomy. Its conflicting info like this and the 'post case reports' versus 'more recent case reports' contradicting statements that are making this difficult.

Thank you again. Any input is very much appreciated.

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RockinRic

Hi, this for me is a really interesting article. My wife has had lupus for 15 years and 6months ago had SRS Radio surgery rather than radio therapy for the first time to manage a rare brain tumour. I involved our rheumy and had to liase with all parties, oncologist, radiographer myself due to being in different hospitals. Throughout the process there were No negative side effects or flares. We will need to visit the procedure often to control the tumour for as long as possible and we anticipate no problems with a lupus flare. I hope these comments help with some confidence.

Regards

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Neontiger2203

Hi rockinric

Thank you so much for your reply.

I'm so sorry your wife is having to deal with this but it sounds like she has the most amazing support from you.

And yes, this does help. I feel like my oncologist has been rather negative so this positive feed back is very helpful and really appreciated.

I wish you and your wife well. Thank you again and take care

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