I have just been diagnosed with breast cancer and was wondering about other peoples experiences dealing with Lupus and cancer?
Lupus and cancer: I have just been diagnosed with... - LUPUS UK
Lupus and cancer
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Jolevans
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Hi jolevans .I cant offer you any experience of lupus and cancer but i just wanted to say I'm sorry to hear of your diagnosis .I pray the prognosis is good for you and your family.i send you warm wishes and healing hugs at such a difficult time 🤗😙 xxxx
Hi Jolevans ..I had breast cancer 3 years ago now , surgery and Radoiotherapy.. to cut to the Chase I was diagnosed with subacute cutaneous lupus Erythematosus 18 months ago ..
Horrendous rash .. lasted 4 months .. I’ve just come home from hospital being diagnosed with lupus nephritis 😏.. however.... NO CANCER.. which they were looking for on CT Scan .. so that’s such a positive.
Your at the worst possible time just now .. mind working overtime, and worried 😟 about so many things .. I know , I’ve been there bless you .. it’s the slow drip 💧 drip of information that drive me crackers ! If I can offer any help at all do ask ... be kind to yourself.. if it’s any consolation, I have found lupus much more challenging than breast cancer! Bizarre isn’t it ! Sending hugs
I also find Lupus challenging I just can’t see how I am also going to manage with chemo and everything aswell. Stopping the warfarin is going to impact in my health drastically.
The nearest I’ve had to cancer is a malignant mole on my breast when I was much younger, so no help to you I’m afraid. But like Spanielmadlady I want to offer my sympathy and support. I hope you get the info you are looking for from somebody who has been in the same boat on this forum, but don’t carry this burden on your own and remember we are all here to offer support and cheer you on through all that lies ahead of you. Keep us informed on how you go. Love and hugs 🤗😘x
Thank you. I will find more out on Friday so willlwt you know.
Hi Jo - so very sorry to hear that. It's an insane time almost instantly eh?
You don't say how advanced it is and what you have been advised to do. I was diagnosed with Grade 2 Invasive breast cancer just over two years ago. I had a lumpectomy and some lymph glands removed. I was advised I either have a mastectomy - or radiotherapy after the surgery. I did not want the mastectomy as luckily I found the lump early so it wasn't too large. I also had the test where they send your lump for a trip to the US to see if chemo would be necessary. Luckily it came back only slightly higher risk than low risk so chemo was a no. I did have quite serious conversation with my oncologist about what the chemo might be like for someone with my health conditions (at that time was still labelled mod-severe SLE, probably sjogrens and behcets - I'm now Lupus Like Syndrome as of last autumn due to being seronegative but no other reasons, and think I'm about to be diagnosed proper with Sjogrens as realise had a positive lip biopsy 3yrs ago and have all the other needed symptoms plus some bloods) - SO.... the oncologist said it would probably not be a very good idea for me to have chemo if it was required as I have autoimmune neutropenia (very susceptible to infection) and low complement 3 and 4. There were quite strong feelings of it being a tricky decision as could really be quite damaging indeed. You have to see if, like the vaccines, the pros outweigh the cons. Do you know if they are recommending it yet?
Also I have moderate aortic regurgitation and arrhythmia (previously had ablation for Atrial Fibrillation). As the lump was on the left boob it would mean the radiation would be right over my aorta and I read tons on there being problems with the heart down the line I calcification or stenosis type stuff. So I actually declined the radiotherapy post op. I just couldn't take any more hell as already had quite savage bilateral foot surgery a few months before the boob op. That totally knocked me for six with infections and exhaustion.
So... It really depends on how far advanced your lump is and whether there is spread... you just have to weigh up the pros and cons and they'll really help with that. My rheumatologist advised me very strongly to have the radiotherapy stating he would advise his daughter to even if she had the same heart stuff etc as me. Also my skin is just dreadful. It's so thin after 58 years of constant severe dryness and rashes. So I didn't really feel I wanted to subject my skin to that either. It's difficult of course. Very.
I don't have any kids, and only one brother who is sadly not long for this world. I was 55 at the time of diagnosis just before my birthday. So I just made a decision based on quality of life etc, such as it was already as retired on ill health grounds and not really able to have relationships!
Oh and I got quite bad cording after the lymph nodes removal. It righted in the end after a ton of physio done to me and three times a day exercises at home. Took few months.
I've just had a clear mammogram and this is year two. So three more and they go to every 3yrs like everyone else my age.
If you want to discuss through the chat bit, I'm happy to.
Hope you have good support around you - it's essential. If you know anyone who has had it get in touch with them and just talk till you feel you have enough answers. And then talk again... Everyone's journey is different - but Macmillans are fab in my area... any area I'm sure. I read everything I could on the web (ie med journal articles and all the macmillan literature). Knowledge is essential to make the right decisions for yourself. And it's your decision to make on everything... no one else's.
Big hug xx
Hi, I’ve still got to chat with the consultant to find out all the details and what treatment. They implied it’s caught early (but not sure how they can say that when the lump seems quite large) and said it’s not spread into lymph nodes but don’t really know for sure until we discuss test results.I just don’t know how I would cope with coming off my warfarin let alone going through Chemo but when I speak to people they imply if I’m offered chemo then go for it. But I would like some quality of life!
I’m nearly 60 and would like my later years to feel healthy at least!
Just since the diagnosis my health appears to have deteriorated already I think it is probably psychosomatic though.
Hi Jolevans, I am so sorry to hear of your diagnosis. I was diagnosed with breast caner back in 2008. It was whilst I was having my 1st round of chemo that I was diagnosed with Discoid lupus, I reacted to something in the chemo and it made me flare up. I had been back and forth to the Drs for years with hair/skin problems so as strange as it sounds it was a relief to get diagnosed rather than fobbed off with "Its just stress".
What would you like to know or how can I help? I am aware that our experiences are individual to each of us but I am happy to answer any questions that I can.
I will say that I was told that it was an aggressive form of breast cancer and that it was hormone triggered. I was 38 when diagnosed.
I had a tough 18months of 3 different rounds of chemo followed by a month of radiotherapy every monday to friday. I then was placed on tamoxifen for 10 years.
I count myself very Blessed to be here and dare I say it in relatively good health. I have been signed off from my oncologist for 5 years now (I think, my memory is not too good with dates). I only see my breast surgeon once a year now too.
I know that this is a very scary time and can seem overwhelming but I am proof that there is light at the end of the tunnel and you can get through this.
As I said feel free to ask me anything and I will endeavour to answer the best I can.
Sending you love and support at this time.
Thank you for your reply.I am more scared of feeling unwell whether it will be to do with stopping my warfarin or going through chemo than not surviving.After 22 years of dealing with lupus and trying to continue a normal life I don’t want to feel unwell again. Although since my diagnosis I have felt quite unwell but just putting that down to stress.
I know everyone’s experience and treatment is completely different but does lupus make it any more complicated. It appears in your case it did.
And also meant to say, as my lump was high oestrogen and progesterone, I was prescribed Tamoxifen for 5-10yrs afterwards which reduces the oestrogen in the bod, and therefore is felt reduces risk of recurrence, which is a big focus of course. I have autoimmune neutropenia and am also on methotrexate. My neutropenia plummeted even lower on the tamoxifen. I also felt utterly dreadful on it, even more exhausted than usual. I couldn't do anything, had no energy at all and felt poisoned. In the end, after trialling half a tab with no improvement, and due to the concern over it "potentiating" the methotrexate affect on my diving neutrophils and therefore putting me at higher risk of rather troublesome infections, it was agreed I would stopped taking it. I felt much better physically not taking it - so, again, it's really about quality of life. It really wasn't one, for me, being on it. I was just in exhausted tears all the time, such as prior to diagnosis of the SLE etc. Hope that helps... but, of course, it might be that if you have to take Tamoxifen, you don't have that reaction... but I have read it is very common, and a lot of people do come off it. Another hug, D x
Thank you for your reply. It sounds all very complicated. I wanted to avoid not having any energy. I am not bothered about a full mastectomy but they seem to be implying I will still have to have chemotherapy which I don’t really want. I usually get the worse side effects to most things so I am now on steroids. I am nearly 60 and quality of life is more important than longevity but don’t think anyone else would quite understand.
I totally understand. I’m 58 now - it was only two yrs ago. This is the point about chemo... it’s not good for the average person but you’re on warfarin as well as having lupus. Do you have APS then? What are your wbc’s like? And your complement? Can you say the size and type of your lump? Xx
Hi, yes I have APS not sure what wbc is?I don’t know what type the lump is yet but it was an inch a week ago but it appears to be growing quickly. Not talked to anyone yet!
Wbc is white blood cell count. You can ask for your last few test results plus your complement 3 and 4 to help you understand your baseline and understand your risk factor with regard to being on chemo which, as I’m sure you are v aware, affects your immune system. It’s important if u have low wbc’s and complement - and they’re talking chemo. Sounds like you need a lot more info all round and discussion with yr rheumy and oncologist re adjuvant post required therapies ie chemo, radiotherapy and tamoxifen etc. Gotta ask more questions. Take a Notepad and pen with you every apptment with questions u need answers to and write them down. Also when on phone. It will all become much clearer the more you talk about it.,Have you received a print out about results of yr lump tests ie type, size, risk, grade? If not, ask for it. They have to tell u everything. I got diagnosed with autoimmune neutropenia as it was clear from my nhs records pre diagnosis I’d had it all my life, hence urine, chest, skin, ear etc recurrent infections etc. Er, it was you that asked about that I hope. You’d come off the warfarin for the op, as you wld for any op, but are they saying you need to for chemo too? X
Hi, Thank so much info to absorb.I do need a lot more information on the diagnosis will get that on Friday. And I still need to ask them if I need to be off the warfarin and Steroids for the Chemo!It’s becoming more confusing the more I talk to people as everyone is so different. I really only want a mastectomy and no chemo but will have to wait to see what they say.
Hey Jo - you say it’s an inch. They generally talk in mm or cm - so it’s 2.5cm? Is this known via the biopsy? Mine was 2cm but that was larger than they thought from biopsy(they said that was rare occurrence) and Grade 2 invasive and Stage 1. Do you know yours? But they have to take out lymph glands at time of lumpectomy to check for spread or not or do they already know from ultrasound biopsy? Have they given you the Primary Breast Cancer file with all the sections to read about every aspect? Or another file with different title? If not they will on Friday with a cushion for under your arm, post op. Ask for it. Try and read it all. Although some people just leave it to their clinicians to make all decisions. I just couldn’t. Have they talked about the Oncotype test? Put that question on yr list at the top, along with a proper explanation and copy of your test results. Need to ask them how they know chemo is required already. They might not.. i don’t know how they can unless know it’s spread or without the result of oncotype test. If your tumour is under 5cm and high positive oestrogen and progesterone I think they’ll suggest sending it - if not please please ask. Here is some info: ncbi.nlm.nih.gov/pmc/articl... There was no question of me having chemo as a result, but they needed to send of some lump to make that firm decision, especially due to the risks to compromised immune system. If your lump is 2.5cm it’s not classed as a large one but think you said fast growing. You need ALL the facts about your case, the specific risks to YOU and your comorbidities (ie what cld happen to you if you had to come off your reg meds, risk to infection - need to know your WBC counts and complement c3 and C4 levels which increase risk of infection from v compromised system from chemo - and risk to you from the cancer if you don’t do xyz from the knowledge the Oncotype test and also the NHS breast cancer site - nhs Predict - can give. It’s what they use to ascertain risk of recurrence etc. Helps you make decisions with their help ie macmillan nurses and your surgeons. I didn’t meet my oncologist until AFTER the op... which is usual as need results of lumpectomy and lymph nodes.. so you need to have as many of the facts as you can prior to that as it might change your mind on what to do straight off. Take the time you need and ask to talk it over with nurses after chat with surgeon on Friday. They’ll expect and offer that. The surgeon will tell you his experienced recommended plan just like that - but there will be options. Ask what they are and the risks. Some people like me just have a lumpectomy and some lymph glands out and the results might mean they have to go back in for more surgery. I read a HUGE amount of info on UK and US sites.. both professional and an excellent specialist US site that was done with cartoons and jokes to lighten the mood but v v factual . It was really helpful. You need to discuss with your rheumy as soon as possible. Can you ask for a call? Mine called me and we talked for 30mins - he was great. And your surgeon will hopefully already (or after you talk on Friday at best) have sent a copy of your test results and their recommendation to your rheumy for their advice on risk to you etc. They must do multidisciplinary risk assessment for you - pros and cons etc. Hope all that makes sense. You can absolutely still make your own decision so remember you can take a day or so to think about what you want. Don’t feel pressurised on Friday. Obviously time is of the essence however.. so if you need to read up, digest, think through decision for a day or two or maybe longer then do. I did. And I know some others who took a few weeks - even though date was being set for op during that time. And you can change your mind up to v near op of course. It will all become much clearer the more you read. It’s not cut and dried for people like you and us on here... but needs dealing with quickly - think there’s a 28 day guideline for the op, post discussion with surgeon when telling you outcome of biopsy or something like that. Try not to get too stressed - easier said than done. X You’re strong already having dealt with all the other stuff so far ie SLE, APS etc. I feel v strongly about all this as you can tell. I’ve rambled!! 
You’ll be amazingly well looked after I’m sure. Btw, Radiotherapy is extremely exhausting too for many people, as you probably know.. but it doesn’t have same intense affect on immune system. If you need all of it, you need it. And will hopefully have lots of support with everything afterwards? Big hug xx
And what does your rheumy and oncologist or surgeon say about all this? Is there a plan yet? Have they talked about the Oncotype test to see if you really need chemo? Xx
Hi, this is my third attempt to message you not sure where the messages keep going.Got on really well at the hospital the oncologist had done a lot of research for cancer with APS and lupus. So we both agreed that mastectomy is the best course of action in the hope to avoid Chemo and Radiotherapy. I will then be on hormone tablets for 5 years.
I have grade 3 ductal cancer and is oestrogen positive. Just hope and pray the lymph nodes are all clear. Jo.
Hey Jo - so sorry - I did wonder if it was Grade 3 as you said they said it was fast growing. OK well that sounds like the best plan for you - thank goodness he had done proper homework - that's how it should be. I take it you were well informed going in having read all our stuff and on line. So you saw the oncologist? Not the surgeon? Or both? that's amazing (although a v crap situation of course). They will have had a multi disciplinary chat pre seeing you as they do regularly for all patients. Ductal - yes me too. Have they given you the size and stage now? Yes, I'm not a religious person but I'm praying to whoever that it's not gone to your lymph nodes. Are they not taking a couple out too? They must me to check? I do hope so to be clear but obviously they know what they're doing! See how you do on the Tamoxifen... I presume it's that yes? I couldn't stay on it as you know, I was just sitting in a chair knackered.. but it's not the same for everyone. I did a lot of reading up - specifically book called "How to Starve Cancer" - please read it... it is an amazingly uplifting (in the end) story and also fantastic if you want to try and keep yourself as healthy as possible going forward.. ie using diet, vits, specific foods and ways of eating to help keep it from returning. What a woman... she had Grade 4 low region stuff that spread... howtostarvecancer.com I also watched a Ted Talk by someone also called "can we eat to starve cancer" and apparently foods such as red (not black) grapes and artichoke etc are as useful as Tamoxifen... but my oncologist scoffed (or course, he's orthodox medicine) and said what a load of etc... Fair enough as I didn't want to stop taking the tamoxifen and you will obviously hopefully be fine on it - but I have a bowl of red grapes every night after super nutritious dinner and also no longer drink cow's milk at all (due to oestrogen in the milk as they keep the cow's pregnant the whole time with hormones and it's... in the milk) and limit cheese and yoghurt type dairy stuff big time. ted.com/talks/william_li_ca... Do watch it... and I hope I've not upset you by suggesting all this as obviously it's pretty serious stuff and I'm so sorry. Diet and hydration, and when you can exercise and yoga and calming stuff will all help with the dis-ease. I'm so so sorry you are going through this... I'm always here if you want to chat, as are we all... and obviously I've not gone through what you are going to. I have to say you sound extremely together. Amazing woman. Big hug xx
I had very low energy whilst going through chemo, I slept a lot of the time. At that time they had put me on hydroxy. However as I have used homeopathy before I was taking a remedy a few days before each chemo session that seemed to help me with nausea and my appetite, I ate quite well for the most part which I feel helped me I also had weekly Reiki sessions that I felt also helped me to cope, both physically and mentally. As I work as complementary therapist, and did back then that was a natural thing for me to do for myself. I did of course inform my breast surgeon and oncologist and they did not object to me having both of these. Do you have any local cancer support centres close to you? I know that we cannot visit them at the moment but I also found that talking to others going through similar situations to mine at the time also helped me to cope. Many places offer telephone or online sessions, you may get some benefit from reaching out there as well.
Sending you hugs
When I was diagnosed with stage 2 breast cancer I had forgotten all about lupus! I told everyone about Sjogrens and thyroid which explained being on hydroxychloroquine and levothyroxine for under active thyroid plus clopidogrel for “sticky blood” found out at rheumatology. Lupus was in the past, an horrendous itchy skin rash, drug induced with a second less invasive flare which couldn’t be explained by drugs. That first time, way back in 2011 GP didn’t know what it was so antibiotics were prescribed which made it worse so cautious about their use now and the dermatologist gave me a list of meds which can flare lupus. I carry it with me everywhere. Guess what, breast cancer......didn’t give it a thought. It turns out anaesthesia and dissolvable stitches aren’t friends with my lupus! I got a reaction after surgery, plus a stitch which my body rejected which caused slow recovery of the lymph node wound. They thought it was infected and I got antibiotics, strong ones, made me ill, different antibiotics and here comes lupus rash. I went to my GP in despair. Stop all drugs she said this must be lupus. It all gradually cleared up after that. I was even told that they don’t think about lupus so they need reminding.So my advice is to get the list of drugs which can impact lupus, show it to the surgeon and the anaesthetist and draw it to everyone’s attention BEFORE surgery.I had lumpectomy and lymph node removal followed by radiotherapy and I’ve had two of my yearly mammograms now, all clear.
Good Luck, the hospitals are amazing but don’t be afraid to advocate for yourself at every opportunity.
PS I also found the help of a Homeopath really worthwhile, oh and cream to use after radiotherapy sessions called Biafine (from Amazon) was amazing for healing skin and stopping radiation burns.
Thank you for your reply and all the information.
I am sorry to read of your diagnosis. I do not have cancer but ironically my hematologist and rheumatologist both specialize in treating cancer and rheumatology together. I receive all treatment at Smillow, a cancer center at Yale hospital in the USA. This is a newer field but most large cancer centers are now incorporating rheumatologist into patients treatment plans. I know you can not see my rheumatologist but I provided her bio for you to read and maybe ask your specialist is such a collaboration is possible between all your team. You are in my thoughts. yalemedicine.org/specialist...
It’s a strange old world and this site would frighten the berjabers out of most. I am 77 have had Lupus, diagnosed 10 years ago. Breast cancer in 2016 lumpectomy and radiotherapy. I did not use Tamoxifen as I believe it does little to stop and more to make you feel worse. A friend who was on it went on to have a second mastectomy. I am five year clear. The following year I developed Organising Pneumonia in both lungs and felt much worse. Why are you on Warfarin as it’s a bit of an old fashioned drug
Hi, I decided not to change as I was so well on warfarin. What would you recommend?
I have never needed it as the opposite and a bleeder. My husband has thrombosis in his legs and they moved him to Riveroxyban !! He doesn’t have to go to any clinic or have blood checks. So much better Warfarin is old fashioned
Hey Jo Not sure how you’re feeling but I know tomorrow is a big day. My friend just sent me this link and I thought of you. Some of it might be helpful. sussex.ac.uk/alumni/news-ev... Big hug and hope you feel able to share how tomorrow goes and ask for more support from here if you need xx
Hi, I thought I was having Psychosomatic symptoms like fatigue and shortness of breath but have increased my Prednisolone and feel really good now!
Thank you!
Ooo well it’s basically speed-like so go easy - did your rheumy say increase? x
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