I have Lupus/Sjogrens and unfortunately have been diagnosed with breast cancer. I’m currently undergoing chemotherapy first in order to try and reduce the tumour in order that the operation will be less invasive. After my second MRI I was given the great news that the tumour had reduced by 50%. However I was told that because I have lupus I will have a high risk of lung fibrosis if I have the radiotherapy and therefore the surgeon has recommended I don’t and I have a mastectomy instead. After feeling great about the reduction it seemed completely pointless if they’re talking about a mastectomy. The whole point of the chemo was to reduce it and it’s working. Has anyone else been in this position or know of anyone/anywhere I can get advice. Many thanks.
Breast cancer and Radiotherapy : I have Lupus... - LUPUS UK
Breast cancer and Radiotherapy
Hi Pms , im sorry you are going through this. I had a lumpectomy last year followed by radiotherapy. It was the oncologist who made alot of decisions about the follow up treatment.
Do you have lung issues with your lupus/ Sjögren’s that make radiotherapy a concern? It wasn’t brought up as an issue when discussing radiotherapy with me , just as a general issue it was mentioned that in some cases a shield has to be used .
Can you contact your rheumatologist and get them involved in the discussion, or ask for a second opinion from another consultant?
I did contact my rheumy as i was about to have my next rituximab for Sjögren’s . She contacted the oncologist and had a discussion with him , the rituximab was delayed until this month.
I know my story is not the same as yours , but it is always worth asking questions and getting other options if possible.
Take care , best wishes for your treatment 🙏🏼🙏🏼🙏🏼🙏🏼🤗🤗
Thank you so much for your reply, it’s been very helpful. No I’ve never had any problems with my lungs, so that seemed surprising to me. I have left a message for my Rheumatologist asking him to call so that we can have a discussion about it. Like you, we’ve already had a discussion about stopping my Hydroxychloquorine while I’m getting my chemotherapy. So I’m hoping that I’ll get a clearer idea once I’ve spoken to my rheumatologist and from advice from responses like yours that I can make an informed decision. I really don’t want to go through all of this chemotherapy to reduce the lump and then need to have a mastectomy anyway. Once again thank you so much for your reply.
Sorry to hear the health problems you are having .. I had a lumpectomy followed by 15 intensive consecutive sessions of radiotherapy which thankfully 😅 cleared my cancer and no lymph glands involved.. but !! … that’s when my lupus was diagnosed as I started with a horrendous Lupus rash 3 months afterwards.. I’m convinced and so is my GP that Radoiotherapy kicked it off ..Not much help for you I’m afraid .. but I just wanted to tell you my experience and wish you all the very best whichever course you take 👍👏💪
Thank you for your reply. I’m due to get 5 radiotherapy sessions after my chemotherapy (no lymph glands involved either) I’ve had my lupus/Sjogrens for over 6 years so have had rashes on and off over the years. I know the rash isn’t great but if that’s the trade off I’d have to make to save my breast then I’m confident I’d choose it. So your reply has been a great help as it’s helping me see what issues people have after radiotherapy. Hope you are doing well.
Thank you 🙏… yes thankfully no further breast problems.. just Lupus .. Songrens.. and Ostooaths arthritis to cope with ! .. take care 👍
Hi Pms1888 🌿🌸🦋
No advice…sorry. But I empathize with you as 98% of family/relatives have had it…all forms.
However if I were in your position I would do the mastectomy to prevent another horrific condition being added to my body.
My late mother had terminal metastatic lung cancer. She opted to battle an already losing war against her cancer. She was in a trial combo treatment of simultaneous chemo and radiation. She was in such poor health before her diagnosis that she didn’t tolerate the chemo.
Her brain 🧠 was invaded by her breast cancer suffered constant headaches couldn’t eat nor sleep.
She endured months of lung radiation that caused serious scarring of her esophagus resulting in surgery every 10 days to remove scar tissue from it.
Once her brain 🧠 was invaded she endured months of radiation which killed healthier cells and caused blindness.
The last 18 months of her life were nothing but torment for her and myself dad and brother as we witnessed the total suffering she endured to no avail.
I’ve told you this not to scare you but prepare you for the worst outcome scenario.
Hopefully this will be of some use in making your decision.
Best wishes for making your decision and your results my friend.
Love and prayers.
EJ 🤝❤️🩹🤗♥️🥰🙏🕊🌿🌸🦋
Hi there sorry for the delay in replying. I too have many family members with cancer, so I appreciate your reply and am so sorry to hear about your mother. I feel that I want to use all tools available to me that will allow me to come out of this battle with the best possible keeping as much of me intact as possible but not to the detriment of my health so I’ve been gathering as much information as I can from forums like this, my rheumatologist and I’m meeting the radiotherapist next week and then I’ll make an informed decision. Take care and thank you once again.
No apologies needed sweetie,Pms1888. 🌿🌸🦋
I think you will be well prepared for your final decision.
I just said a special prayer for you hun.
Best wishes for the best outcome my friend.
Love and prayers.
EJ 🤗♥️🥰🙏🕊🌿🌸🦋
Morning Pms1888, I was diagnosed with DIBC last year and had 2 surgeries to remove 2 tumours and breast tissue. This was followed with radiotherapy. Due to my lupus I was also told that I was a higher risk of complications with the surgery and radiotherapy (fibrosis). However I was also told that not getting rid of all of the cancer cells was a bigger risk to me. The radiotherapy team were fantastic and kept a very close eye on me as I burnt very quickly from day 2 but continued to monitor me throughout the treatment and then treated me accordingly for the follow up burns. Touch wood there is not sign of fibrosis although I've had complications with lymphoedema. Don't be afraid to seek a second opinion if you aren't happy. Go with you gut instinct. Wishing you all the best. X
Sorry for the delay in getting back to you and thank you for you’re reply, it was very helpful indeed. It’s people that have gone through it that are the most helpful to me, to see what they experienced and I’m so grateful to you. I’ve spoken to my rheumatologist and am meeting with the radiotherapist next week so am gathering all the information I can before making an informed decision. But I’m almost certain that I will be going with the radiotherapy as I don’t have any lung issues with my lupus at present and as my rheumatologist said I need to deal with the hear and now. Once again thank you so much .
You are most welcome. Might be worth checking your anti inflammatory meds you take as I increased these as I was getting more inflammation in my ribs once the radiotherapy started. Wishing you the best if luck.
Thank you that’s good to know, I’ll mention that next week.
Hello Pms1888 - Hope you're doing OK? Possibly in the middle of everything? I have just read this post as I am needing the same advice you sought to give you the best info to make decisions with.
Can I ask... did you go with the radiotherapy in the end? How is it going? Or is it over now? How have you managed? Any side effects?
I've just had my third bout of breast cancer in 3 yrs in same breast -so in 2019 I had lumpectomy and tried Tamoxifen but was v ill on it and stopped. Last year it reoccured and so I had a radical mastectomy on that side. And this March it reoccured just above the mastectomy scar and just had that out. They are now really hoping I'll do radiotherapy and start taking the Letrozole - despite saying in previous letters I can't have it due to "connective tissue diseases". And I am .5 off of diagnosis of osteoporosis - and already struggling physically with all sorts. I have Sjogrens and lupus like syndrome (was SLE for 3.5 yrs but rheumy changed it as never positive ANA). Have heart disease too and inflammatory arthritis, etc etc.
I know it's not all gone as the pathology report says can't confirm it as cancer was .1mm from margins. So I know I need to do something - but my skin is horrendously dry even after using Eucerin 10% lotion etc and since birth has been often cracked and bleeding etc. and rashy so I don't think it's a good idea.. but then neither is it reoccuring every year and the risk of it going to lymph nodes and metastasising is going to get higher. This you know. Hmmm..
Hope ok to contact you and hope you're doing ok. Will understand if not up to responding. Take care.. and hope you have others to help you? I live alone.
D
Hi thereIt definitely is ok to contact me whenever you want. I am so sorry to hear of your health issues over the last few years. Yesterday I finished my 12 sessions of chemotherapy so it was a very emotional day for me. I found the chemo pretty rough at times but I got through it and that’s stage 1 of my treatment over. Next up is meeting with my surgeon to discuss what operation I’ll be having (and it’s looking like they might consider a lumpectomy after all, dependant on if the lump has reduced further 🙏) and that will take place in 5/6 weeks. Then after gathering information from forums like this, discussions with my rheumatologist and radiotherapist it has been agreed that I will be allowed to have radiotherapy. Instead of 5 sessions over a week, I will have a reduced dosage over a longer period, 15 sessions over 3 weeks. That should start 5/6 weeks after my operation. So all in all I’m pleased with my treatment going forward. I note that you’re in your own. I live with my husband but all my friends and family live in Scotland or Ireland so I’ve not seen any of them in such a long time. But I can thoroughly recommend websites like Headwrappers, FutureDreams, Breast Cancer Now and the Maggie who have lots of good information and I’ve attended a few virtual sessions with them where you can have a chat with others going through similar situations. Best wishes with all your future treatments. Paula
I can imagine you were devastated by that news if you were under the impression that you would have the lumpectomy. It sounds to me as if the surgeon and oncologist wanted this protocol - chemo first, surgery afterwards. I think many breast cancer protocols involve chemotherapy whether it is with mastectomy or lumpectomy. You need to get this clarified so that you don’t have to wonder whether chemotherapy is necessary.
I just completed radiation therapy for a different cancer. Chemo was at the same time as radiation. There are many different protocols.
Lung fibrosis would be a terrible side effect. They do such great plastic surgery now. Your doctors, I think, will make you feel much more comfortable to move forward.
It is great news your tumor has shrunk by fifty percent.
Best of luck with such a challenge. Remember lupus and breast cancer are both primarily diseases of women. So the surgeon has seen this combination before and will do the right thing. I was nervous about radiation therapy and the radiation oncologist assured me he had handled cases of autoimmune disease way more serious than me.
Xx K
Pms1888 -
Sorry, I thought you were just posting today. How are you doing with treatment?
Rooting for you,
Xxk
Hi thereThank you so much for your message. I’m pleased you got the treatment you needed it gives me hope reading messages like yours. Yesterday I finished my 12 sessions of chemotherapy so it was a very emotional day for me. I found the chemo pretty rough at times but I got through it and that’s stage 1 of my treatment over. Next up is meeting with my surgeon to discuss what operation I’ll be having (and it’s looking like they might consider a lumpectomy after all, dependant on if the lump has reduced further 🙏) and that will take place in 5/6 weeks. Then after gathering information from forums like this, discussions with my rheumatologist and radiotherapist it has been agreed that I will be allowed to have radiotherapy. Instead of 5 sessions over a week, I will have a reduced dosage over a longer period, 15 sessions over 3 weeks. That should start 5/6 weeks after my operation. So all in all I’m pleased with my treatment going forward. Best wishes with all your future treatments. Paula
Thanks do much for your lovely reply. Huge congrats on finishing your chemo yesterday. What a huge relief no doubt.
I can say scar of the lumpectomy I had first time around looked amazing. The surgeon was/is(!) very good (hd him the 3 times). You don’t say where your lump is but mine was such that he could cut around my nipple and so the scar just disappeared into the circumference/line of it. Obviously that’s long gone now (ie have a 9 inch mastectomy scar plus the new inch one from a month ago) but I was very impressed at the time. I hope that helps.
You’re so brave/determined taking all the chemo, despite going through what was probably hell.. I know a couple of friends without our comorbitities that found it extremely hard. . I do hope it does the trick for you… by all accounts it’s v effective. What did you find were the worst side effects? I don’t think I could manage as I’m not well generally with the lupus sjogrens heart arthritis neutropenia anaemia and low complement etc - and living alone is hard enough now at times, so I’m pretty sure I’ll decline that. But radiotherapy I’m contemplating slightly. How is your skin generally? Mine is awful as I’ve said previously so coming from a bad starting place
. The stenosis you mention they said wld be a risk - is that of your heart? That’s another reason I declined first time (my lump then was only 2cm (ie 20mm on the left side over aorta) as have aortic regurgitation, on off AF, other daily arrhythmia, hole in heart and anomolous coronary artery. I’d read med research papers on the risks to the heart and skin in cases like me/us but think they were about 25- 20yrs old..
In the end it’s about to what end ie to me it seems having all this treatment is about staying alive with loved ones much longer in a healthier state. My life is quite difficult struggling with all my health stuff already. Whilst I have some fabulous friends I am single with no kids, and my closest mate yesterday said “well to go through chemo (or radiotherapy) and get an infection and/or fall down etc and pop off in hospital - is that the way you want to go?”. She’s v straight talking which I love her for. Lots to think about before my oncology chat next tues am.
Anyway, another “hurrah!” to you for finishing yr chemo - you’re obviously a v strong woman.. and hope you get results lump has shrunk.
Best wishes and hope you can keep us posted. D
Hello again. How are you doing? Are you improving, post chemo? I do hope so. Is your meeting with surgeon in 5/6wks or the op? I really hope you get the lumpectomy option if the lump has shrunk. What is your skin like usually?
I had my oncology appointment on Tuesday. It was quite long, and I still managed to forget some pretty important questions - such as "prognosis?".
I agreed to radiotherapy - but it'll be a very large area, from middle of my chest (as the lumps from the second recurrence were almost into my other boob!), right over to under my arm pit and quite a deep width ie about 5inches - so probably 8in x 5in in all. They talked a lot about my lupus stuff, but everything I've read since risk of side effect severity-wise is about my Sjogrens. I'm so very dry skinned (flakey even with Eucerin 10% urea and oils) and rashy on my hands or anywhere if in sun etc, also very prone to infections if any cuts. I have inflammatory arthritis and all sorts... plus my throat/mouth is like the desert, am constantly drinking water which does nothing but come out again! I'm taking a high quality collagen now (from Welleco.co.uk) which has certainly improved my nails and my mastectomy scar has finally (after 8mths!) started to look less inflamed (but that's probably normal). So, I truly recommend it... I get it on their subscription offering which brings the cost down.If I go ahead I've read doubling collagen intake after ops and treatments such as this REALLY helps the healing.
Anyway, my mind is going round and round about having it. I know I'm a side effect bod.. and they said it'll probably be "all of the above" ie leather like skin with significant fibrosis and tiredness (er, I'm exhausted much of time already!), and burns/blistering/infections risk... and will probably lose the ability to use my arm as much ie reaching for things above my head.. forever. And then there is the issue of my poorly heart... I mean the list goes on. I know you decided to have it and are going for the longer option of three weeks? Have they mentioned this sort of thing? Of course they have - you sound like you've done a very good amount of research to help you decide. I do hope you don't mind me talking like this. I just don't know what to do. The CT and tattoo-ing will be in couple of weeks at the most, then the planning and then it would start (5 days solid I chose as they said it would be better for having high risk of issues now ie skin burning/breakdown, and lesser risk of things such as fibrosis in long term) - I took that to mean I could (risk of) have long term issues down the line, but not so much now. Now would be high risk for me for all the burning and fatigue etc. I already have some pulling from under my arm from the first time when they took out some lymph nodes, and the second time with the mastectomy that went under arm.. so not really wanting any more tightness. But have to do something as it's "high risk returning within mths". It's very difficult all this isn't it. By the way, they have never said any risk to my lungs through radiotherapy, as they did to you.My rheumy just said "have whatever they suggest, if it's chemo you'll only lose your hair for 6mths". Hmmm. It all seems a bit confusing as so many different risks mentioned by different clinicians to different patients. Not very helpful. I don't have lung problems but I certainly have skin, muscle and tendon issues.
I live alone and am going to struggle from the end of the week of treatment afterwards I think. Hoping I can stay with my friend again but she has so much on at home with looking after her increasingly very poorly in-laws and working.
Nor sure what I'm rambling on about now, but just reaching out to see how you are doing, and what you think about my concerns? I guess it's the same for you... for aall of us with this combo..
Anyway, hope to hear how you are.. and wishing you all the strength and courage, plus support you need. You sound extremely stoic, if I may say. Any questions re lumpectomy etc, let me know as I can obviously advise having had that. All the best for now,
D
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