Oncologist was brilliant had done a lot of research into cancer with APS and Lupus.
Opted for mastectomy to try and avoid having to have Chemo or Radiotherapy. He agreed it was better to avoid them if at all possible. Hopefully nothing shows up in Lymph nodes!
I send you all my best wishes 🙏 so pleased the oncologist was good, personally I think you are making the right choice, it’s not a nice choice ( choice🤷♀️) but when caught between the devil and deep blue sea I think it the choice I’d make. I hope 🙏 lymph nodes ok 🤞🤗x
Pleased oncologist had done a lot of research to help with best advice 👍
Hi Jolevans ... I had breast cancer 3 years ago and had surgery in right breast.. then .. high intensity radiotherapy fir 15 consecutive sessions 🤦♀️That was tough. My cancer thankfully was clear and hadn’t spread to lymph nodes... however, in hindsight, a total mastectomy would have allowed me to avoid radiotherapy which has given me numerous health problems. I didn’t realise at the time that I had Subacute Cutaneous Lupus but it certainly raved up a massive flare .. from which I have been struggling virtually ever since ! Well done and good luck with your decision.. 👏☺️
Sorry to hear that. I thought I was going to have a battle on my hands but he came up with exactly what I was hoping for.
Oh lord.. further to my response to you here below(?)....brain fog and no memory as ever... I just found I actually responded to you when you posted asking about lupus and cancer experience on here 4mths ago! So will read that post and everyone's responses.. but yes please see my response below. Thanks and sorry I've no memory these days 
x
Hey Jolevans -So sorry you went through this.. So... how are you doing now? May I ask what exact support you needed from the off ie being discharged?Do you mind me asking your age? Could you have managed alone?
I have just been diagnosed with recurrent breast invasive cancer in same boob as in 2019. I have been thinking about doing nothing as I can't really bear the thought of more surgery as had too much in the past 5 years and it knocks me for six in every way with infections etc too with Lupus like syndrome (was SLE for 3.5 bu rheumy changed it end of last year to the former as always been ANA neg.. but had since birth he thinks so pff) and also pretty full on Sjogrens, widespread inflammatory arthritis, IBS, neutropenia and hypocomplementemia, mod leaky aortic valve, fibromyalgia, erthromelalgia, AF and all sorts. I live alone and don't have a partner to support or any family (only got brother left who is in nursing home/hoisted etc forever now sadly). Friends are too far away to come every day (as I moved to be near my bestie and she's been stuck in Oz for duration of covid and not back for 6mths at least!) and basically I'm 58.5 yrs old but, like so many of us, feel 20yrs older at least.
Surgeon and MacM nurse said radiotherapy would probably be problematic given all my obvious comorbidities and that I live alone with no support. And I'd not have much left of my rather teeny boobs a second time if had lumpectomy.
Lovely MacMillan Nurse says, as I know, having been in social work previously, that you can only be assessed for care on ward... and I know from my social work mateys that care is very thin on the ground so would have to stay in if I couldn't cope... and having had a dreadful time the other year with bilateral foot surgery, I cannot bear the thought. It was dire as had no idea or interest on how those with lupus or sjogrens react to surgery and drugs. Wad puking with allergy to morphine for 3 days until I put two and two together ... they certainly didn't. The lights were awful and the noise... I was beyond falling apart.. went into shock etc. So, I can't go private.. I'm retired on ill health for past 2.5yrs.. I just need advice on what I might be likely to need...
Sorry for all the info... but hopefully will give you an idea of my concerns... yikes.
Thanks so much and hope you are doing much better?
Dx
Hi D,You have so much to contend with already it is such a shame that life also throws returned cancer at you.
I am 58 years I had a mastectomy to avoid any chemo or radiotherapy which I felt was the best decision when our bodies react to things so badly.
The operation itself was a doddle and was able to do things for myself very quickly. The only complication was because I had a bit of a cold the morning of the operation I developed a very bad chest infection mixed with asthma so was in and out of A&E. If I had not had the chest infection I could have done it on my own. Like most of us with lupus and other complications we just do the best we can.
My consultant also suggested not to have reconstruction incase it reacts with Lupus ect. I have just received my prosthesis which is amazing after struggling with the temporary ones they give you at first.
I found my hospital, Peterborough City hospital, absolutely amazing I let them know of any reactions that I already know of and they have put strategies in place and looked after me with immense care throughout.
Please don't ignore it if the cancer gets in your lungs its not good. Nowadays we can shop around and choose what hospital you go to. Someone I knew chose to go to Addenbrookes because she was informed it was even better.
I did feel very privileged as I was diagnosed in April, had the operation in May and got the all clear in June.
Sorry I can't really help you much!
I do hope all goes well for you.
Take Care
Jo
Wow - thanks Jo. Sounds like a very up and down affair for you with the complications of the chest infection - how awful. You sound v strong. You were alone then? Wow. Again. No drains? I've read a few nightmare stories off this site.
I just know I'm dreadfully crap already and know how I've been with previous surgery.. so you sound a little fitter all round than me. You have helped me... you have given me hope it might not be so bad.. but we're all different. I've fought all my life with all this and am used to it but post working my nuts off I am rather a husk of my former years. So many complications all the time humph. I wasn't aware could ask to go to a place. I certainly wouldn't want to go back to Haywards Heath! Appalling - with no understanding or interest of care for my lupus. Disgusting care from the Ward Nurse who shouted at me and made me sit up all day after 2 days vomiting.. and left me hung over asleep for 5 hours. Was in a right state after that. V angry about all that. And nervous of going through it again.
You sounded like you had a truly amazing team all round.. Have to see where best and see if I can even choose - I don't think there's much of that going on round here... you just get shoved in wherever. There's no hospital in my town... have to go miles away. Nice town, useless health care facilities!
Anyway, I hope all is good for you now - with (finally) your own boob. They showed me one the other day - it was huge! I'm a slowly disintegrating 34A.. or AA if not been eating as much ;).
All the best and thanks so much. Dx
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