Just diagnosed, several side issues and side conditions
Hello, (Sorry this is long)
Just diagnosed (3/29/2021) with 3 lesions:
1) Left breast DCIS: 4.9 cm, E+, Her2-
2) Right breast ILC E+, P+ Her2-
3) Right breast DCIS E+ Her2-
Recommended bilateral mastectomy, not sure if I'll need chemo, may or may not need radiation (being told not definite but one lesion is 4.9 cm and one of three "OR" criteria is lesion 5.0 cm or larger) so I'm telling myself yes as it'll be easier to hear "No" when expecting "yes" than other way around, definitely Aromatase Inhibitor or Tamoxifen
Not sure about reconstruction, definitely own tissue if so (see "Side conditions" below for some factors here)
So far I've had:
1) Multidisciplinary Team Meeting (Breast Surgeon, Medical Oncologist, Radiation Oncologist)
2) Planning/strategy meeting with Primary Care Physician (had been scheduled as a "physical" before diagnosis came through. Glad I had the appointment booked when it did.)ct
3) Bone Scan (essentially clear; the one area that didn't look quite right checked out on further plain x-rays/CT)
4) CT (lower chest/abdomen/pelvis) actually done in process of diagnosing kidney stone, but useful for looking at spot in 3) above and checking out rest of area regarding breast cancer issues
5) Plastic Surgery Consult: even if I do not choose reconstruction at all, let alone immediate, he will be there in operating room to re-plumb any lymph nodes that lose their pathway in surgery if I need some removed, to try to reduce chances of lymphedema.
6) First appointment (intake, not sure there will be any others) with larger cancer center in area to discuss possible second opinion. My breast surgeon explained why they do the one thing differently from how the bigger cancer center does it and I think I like original idea better, so thinking I'm staying where I am but glad to have the information from them. Woman I spoke with there said I can ask them to look over pathology reports after surgery or otherwise pick and choose which parts of my treatment I want where between the big hospital and the one I'm currently working with. Nurse navigator at hospital I'm working through verified this and said they work very well together.
7) First Moderna Covid-19 shot (Surgeon wants 10-14 day gap between surgery and 2nd shot in either direction so likely won't be able to get second on schedule but Primary Care Physician didn't want me going into everything completely unprotected)
1) Cardiology appointment mentioned below (April 30)
2) Allergist appointment as I may have reacted to and therefore lost Propofol (usual drug for "conscious sedation") after last cardioversion (severe itching in several places, funny feeling behind nose as it was being administered and as I was leaving recovery area after procedure, hoarseness) (May 4)
3) Review/Planning/Scheduling meeting with breast surgeon (May 7)
4) Another appointment with Primary Care Physician to review everything up to this point (May 12)
5) Dentist appointment (regular cleaning etc.) (May 26) Insurance is very strict about 6 months and a day and last was November 25, so not likely I can move it up, Just left a message at dentist's office to see if they can put in medical necessity override or similar to get it sooner if surgery is scheduled before that..
1) unusually large head (some men's XL hats don't fit) so if I need chemo, finding wigs or head coverings may be difficult and scalp cooling may not be available to me if they don't make caps in my size. Does anyone have any sources?
2) it seems like the only exercise and relaxation activities I can find offered by local resources are yoga and mindfulness, which I have reservations about as I do not feel they are appropriate for Christians. Ideas?
3) getting "so glad you're upbeat, keep it up" from friends at church (doesn't look like there will be room for acceptance of any grieving etc. over diagnosis, body changes, potential treatment difficulties...)
4) somewhat small-busted through most of adult life, so several people have commented "at least you don't have much to lose" or similar when I mention upcoming surgery. Gee, thanks! Real helpful (not!)!
1) repeated afib, on Eliquis due to this and 2 TIA's (mini-strokes) in 2016.
Thought we did last cardioversion a couple months ago before next step being pacemaker, which cardiologist had said we could likely delay for quite a while before diagnosis came through and pulse went crazy while hospitalized for kidney stone last weekend, as I'm usually relatively functional while in aFib (pulse usually relatively low compared with others who go and stay sky high till cardioverted or otherwise cleared). Back in afib within a week due to medication error by another specialist (whom I've since fired). Now moving up pacemaker or trying 3rd ablation (first 2 lasted 6 months and 6 weeks, respectively so weren't going to try another until this) under consideration. Can't have medical cardioversion drugs (severe swallowing problems and neuropathy from the one they tried on me; others are more dangerous in general).
Any cardiac procedures will have to be done before breast cancer surgery. Plastic surgeon is concerned if I can withstand either combined mastectomies/reconstruction (9 hour potential) or separate reconstruction (6 hour potential), even if cardiac procedure doesn't precede it. One issue of why ablations didn't last is we couldn't find a safe version of the drug they wanted me to take after the ablation (see #3). Scheduled to see cardiologist April 30.
2) Especially since i went back into afib most recent time, husband, who has been laid off for several months, has been afraid of me overdoing, so I've basically become a couch potato. I mentioned "prehabilitation" that I'd seen on the bigger cancer center's website to my breast surgeon at the Multidisciplinary Team meeting, and she said we didn't have time to do a lot but I should get outside and walk for at least 1/2 hour a day. That worked pretty well starting the next Sunday (meeting was on a Friday) till I ended up in the hospital with the kidney stone from that next Friday till Monday and then had intestinal distress (to put it mildly) Wednesday and Thursday from the antibiotics they'd given me in the hospital as they thought the stone might be infected and didn't want me going septic. So I didn't get walking again till Sunday, afraid to be too far from a bathroom. Between my heart issues and my deconditioned condition, any surgery is going to be harder on me than on someone without these issues. I'm trying to do some core exercises as well, but have never been a strong person physically.
3) "difficult airway": my throat collapses if they try to do general anesthetic without intubating me first(!). Quite a process to get me ready for surgery of any kind.
4) several sensitivities to "inactive" ingredients in prescription and over-the-counter medications: swallowing problems develop over about a week of taking medications that have them and I'm already having swallowing problems from various other things so can't afford to make it worse. Therefore will need to check prescribed chemo or AI drugs carefully. Insurance will not cover compounded medications.
5) likely MTHFR issues (clearing toxins, handling plastics and the like), which will affect chemo if I need it and makes me extra hesitant to do any non-own-tissue reconstruction method
6) oxalate issues from colonoscopy 8 years ago (thanks, Miralax!). Many "healthy" foods are high oxalate.
7) Lactose intolerance so i can have milk if I watch how much I have how often but most suggestions about adding calories and protein to diet if I do need chemo start out with "stir in sour cream," "substitute milk for water," or similar.
8) Sensitivity to adhesives, which will affect choice of prostheses if I go that route
9) Neurologist wants my B12 levels higher than usual but I'm reading that supplementing may increase chances of recurrence. Have also been taking fairly large doses of vitamins C and D, which again may interfere with either chemo or radiation, from what I'm reading.
As my husband commented to someone recently, he's the juggler (learned several years ago), but I'm doing the juggling right now. .
Thanks for reading this.