u/ariaxwest

Anyone with DCIS (grade 3) get a double mastectomy and refuse sentinel lymph node biopsy?

I've been doing a deep dive into recent research and it seems that despite this being standard of care for years there isn't any advantage for most patients - and of course the huge downsides of possible lymphedema! Basically it's used to inform decision making around chemotherapy for a small percentage of patients and that's it.

I've also got severe inflammatory arthritis and inflammatory bowel disease and won't be able to take medication for this anymore due to my cancer diagnosis, so I'm relying super heavily on heat (heating pads, sauna, long hot showers and baths) for pain relief, which is a lymphedema risk after SLNB. So that alone is a quality of life dealbreaker. I have numerous autoimmune and genetic diseases and my life expectancy and quality of life are already not great.

And I have numerous risk factors for lymphedema, too, due to the arthritis, hypermobility, ongoing severe systemic inflammation, and previous adhesive capsulitis in my shoulders.

So I want to refuse SLNB. But I don't know how my team will react.

I’m 44 and this is my second go round.

[VENT]

I've (44F) had inflammatory arthritis all my life, but it got really bad when I turned about 35. This led to me finally getting properly diagnosed (no, it wasn't fibromyalgia and IBS) and getting on meds, which have been life-changing! Turns out I also have some form of microscopic colitis which goes into remission on Humira and Xeljanz.

But unfortunately, I've got breast cancer. And my oncologist says that's it for anti-TNF and JAK inhibitors as these interfere with the autoimmune process that scavenges cancer cells. Last time I had a lumpectomy they found four types of atypical cells, and apparently the action of anti-TNF and JAK inhibitors he believes is likely what led to these developing into cancer.

The really crappy thing is, I'm anaphylactic to NSAID, salicylic acid derivative drugs, and sulfasalazine. I've got liver damage from a genetic condition and my liver was unable to tolerate methotrexate or leuflonimide. I have another medical condition that's a contraindication for taking hydroxychloroquine. And because I have IBD, can't take a lot of the other biologic meds because they can make IBD much worse.

So I'm totally out of medication options. I'm already doing physical therapy or getting a massage every week. I also self massage, stretch, and will make more of an effort to exercise every day to reduce inflammation. I already eat the least inflammatory diet possible.

It feels so unfair. I have probably the cleanest, healthiest diet of anyone I know, haven't used alcohol, caffeine, THC, or anything similar in over 10 years because I just don't care for it, live in a low pollution area and avoid toxic chemical exposures as much as possible. And yet here I am. Getting a double mastectomy in just a few weeks and unable to take any medication for my arthritis.

Hi all, I've got breast cancer and am going to have a bilateral mastectomy at the end of the month.

I’m allergic to everything, which will complicate matters pretty badly. Not just food allergies, in my case. I'm severely allergic to every antibiotic I've ever been given as well as all NSAID drugs.

They are actually making me stay in the hospital overnight to monitor because they insist that I be given at least a small dose of prophylactic antibiotics.

My surgeon is in close contact with my infectious disease specialist and they've decided on antibiotics from classes that have never been administered to me before for prophylaxis. I'm actually totally cool with nearly every aspect of this, but completely freaked out about being given antibiotics.

I don't really have a question, just looking for support and hopefully stories from people with similar experiences.

The last time I had a severe allergic reaction to an antibiotic I developed interstitial cystitis and my inflammatory arthritis worsened severely. I also had a gnarly rash that took eight months to go away.

Anyone here with severe urethral inflammation/pain/burning have an inpatient surgery that required a catheter?

I’m looking at double mastectomy for breast cancer and this is one of many potential complications that I am wary of. I'm actually hoping they wouldn't insist on a catheter.

I'm also severely allergic to all antibiotics that I've been given and am down to a few I've never tried that are IV administered only, so if I got a UTI from the catheter it could literally kill me.