Anyone else with lupus, endometriosis?

Tzvia

Hello everyone,



I was diagnosed with BC in June, looks like it could be multifocal IDC, and am waiting for MX/BMX in three weeks. I've got lupus and endometriosis. Given family history my MO recommended complete hysterectomy. I'm 53, and perimenopausal, so the surgical menopause will be rough, but not as bad as for someone younger. The good thing is that the docs think that getting rid of my ovaries will relieve the endometriosis, the lupus, and lower my risk of BC recurrence.



Has anyone out there had radiation with lupus? What about chemo? Did anyone have healing problems from surgery? How do the pain/fatigue/brainfog of BC treatment compare to that of lupus?



Any advice welcome!

collie-flower

Hi Tzvia,

I have discoid lupus, so the only organ that lupus affects is the skin, and to a lesser extent, hair.  I did 6 rounds of chemo (FEC) and 29 radiation treatments.  I thought my skin would be horrible during radiation, as the sun has made my skin go blotchy and purple previously, but it turned out quite fine, only some irritation right underneath my right breast.  I mean the skin went pink and that, but no blistering or red/purple lesions, so I was a very happy camper.

Since I have discoid lupus, I don't think I have the same side effects that someone who has systemic lupus, so I really can't comment on that.  The one side effect that I have MAJOR, is the hot flashes.  I was no where near menopause when I started chemo at age 49 and after 3 rounds, my period never came back and then after my last chemo....the hot flashes started!  They are unbelievable!  I sit at work and depending on what's going on, the water is trickling down my face and neck, taking off my make-up etc and it's just miserable!  I have a fan on my desk and I have those special absorbent towels, face misters and a few other 'cures' but none of it really helps, just makes it a bit more tolerable!  My oncologist switched me from Tamoxifen to Femara last year but the side affects on Femara were even worse....the hot flashes were basically the same but I also had to contend with feeling like a 90-year old woman, everything hurt and everything ached on my body!  Since he switched me back to Tamoxifen a few months ago, it's unfortunately gotten even worse (if that's possible), but I've only got another 2.5 years till I stop taking Tamoxifen and maybe by then, the hot flashes will be ready to slow down and stop themselves!

I was 27 in 1987, when I was diagnosed with Graves Disease and I had to drink the radioactive iodine....I wonder if that contributed to my breast cancer?  I don't know....I really think it's all a crapshoot! 

I'm sorry I don't have much advice to give but I do wish you lots of luck and hugs.

chana21

Hi Tzvia,

I also have systemic lupus. At various times it has affected joints, lungs, kidneys... I'm not sure what your disease progression has been (everyone is so different!). I've had serious flares during the past two yrs, but the SLE was in full remission for two years after chemo (so far I haven't had to have chemo again). Cytoxan is actually a treatment for lupus, although it's not used unless it's absolutely necessary. If you're having chemo, you should definitely have your oncologist touch base with your rheumatologist. Perhaps you can kill two birds with one stone! It was a relief for me not to have any serious lupus issues during chemo and radiation. Sending hugs and healing thoughts your way. Keep us posted!

chana21

Oops!.Forgot to address your other questions. I think"chemo fog" and "lupus fog" seemed quite similar. I've had lasting memory/cognitive issues since chemo, but have also had concussions, and brain damage is cumulative. They don't know if the SLE contributed in any significant way to my ongoing issues, but it's not likely. As for pain... I don't know how severe your lupus pain has been, but, for me, cancer pain has not been more severe than lupus pain.

chana21

Oops!.Forgot to address your other questions. I think"chemo fog" and "lupus fog" seemed quite similar. I've had lasting memory/cognitive issues since chemo, but have also had concussions, and brain damage is cumulative. They don't know if the SLE contributed in any significant way to my ongoing issues, but it's not likely. As for pain... I don't know how severe your lupus pain has been, but, for me, cancer pain has not been more severe than lupus pain.

Kar324

I have Sjogren's and mild systemic lupus. My lupus just affects my joints and very rarely, I will get some pleuritic chest pain. I have DCIS and am on my 15th/16 whole breast radiation. So far, I've had the mild redness and nothing else really. I do take NSAIDS to protect and stave off any further inflammation that the radiation may cause. I rest when I get tired and try to keep a positive mental attitude. It sucks that we have to have both, however, I felt the lumpectomy surgery was more debilitating to me than the radiation thus far. And if this can prevent any invasive cancer, we have to play the cards we are dealt and try to roll with it as best as we can. I hope the next 10 years will be relatively complication free.