Lumpectomy Lounge....let's talk!
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Poodles, you're right. The only good thing about that letter is that you have plenty of time to straighten Cigna out and make them understand that they WILL pay for your DIEP! I'm glad you hadn't bought your tix to NOLA too.
Perhaps next time you get that total cleaning bug, kill it. Do just a bit and give your body a break. I'm glad that you were able to do your volunteer work today. I'm sure it is much appreciated. You are a good woman!
Now put your feet up and have a big glass of wine!
HUGS!!!
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I had partial breast radiation following lumpectomy although my margins were clean and no lymph node involvement. I understand not everywhere does it and it is done most often for women over 65 (I have no idea why) but I am pleased with it. Only 5 days although twice a day. I ended up with chemo however when the final path report came in and I am HER2 positive. This is a long way of saying, you BS and MO will no doubt look at several things to make a recommendation.
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Blah. I feel like I'm complaining all the time. Just ignore me.
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Poodles - you had me exhausted even reading about your day. With every else on your plate, I don't know how you can think about volunteering (although I am a firm believer in it, currently am VP of the board of our local food bank). Take care of yourself so later you can take care of the world!
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I started volunteering about a year ago, right after I was diagnosed with PTSD. It has really helped me stay grounded and focused, with everything else going on
Well, I just figured out why I didn't sleep good last night. I didn't take my meds! Tonight I took all my regulars AND a Percocet (I hurt EVERYWHERE now) Bet I'll sleep tonight!
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Poodles, you are entitled to complain. And we're here to listen and commiserate with you. And heavens knows you have a helluva lot on your plate. I am constantly amazed by you and how you manage. Super woman!!
HUGS!!
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UCLA/City of Hope is revising its recommendations on two major fronts: first, its new definition of “clear margins” is “no tumor on ink.” (That means however narrow the cancer-free boundary between the tumor itself and the inked edge of the larger incised margin, so long as there are no tumor cells touching the ink it’s a clean margin); and second, 3 or more positive nodes on SNB tells them what they need to know about nodal status and probably near-term prognosis, so they say that there really isn’t a need for ANLD (which they contend would be like locking the barn door after the horse has been stolen). The latter is a huge new development—acknowledging the risk of LE and for the first time trying to be proactive about lowering it from the very start.
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Poodles, my ortho did contemporaneous bilateral TKRs, but only for patients <60 and with BMIs <30. For me (I was 61 with a BMI of 37 at my first surgery), he recommended starting with the worse knee and waiting a year for the other, so I at least had one “good" knee at a time. Not gonna kid you—it hurt like hell, and they DO get you up within a couple of hrs. on a walker after leaving the recovery room for your own room. (I discovered some creative epithets to hurl at the nurse and PT as I inched my way down the corridor).
As soon as you have a surgery date, start visiting rehab centers w/in your insurance network so you can pick the one that looks like a good fit and make a reservation—I didn't for my first TKR and ended up in a shitty rehab (posh 'hood, looked pretty, but only one RN for the entire wing per shift, the CNAs ranged from sweet & clueless to indifferent & clueless; ortho, memory care, psych and hospice all on the same floor & corridor; and the food sucked—had to join the staff “coffee pool" to get coffee with caffeine, and despite being on warfarin they would goof & give me spinach. Was there 10 days, had PT once a day 5 days a week and OT 4 days a week. A year later, I toured rehab facilities, and made a res. for one that took mostly ortho patients (and mainly joint replacements at that). Like night & day: at least one RN per floor 24/7; CNAs knew their asses from their elbows; PT twice a day and OT once a day, 7 days a week; full service salon & ice cream parlor, coffee (leaded & unleaded—including Keurig) & fresh baked cookies 24/7; breakfast either in bed or the dining room, lunch & dinner in the dining room with menu choices and waitress service; and movies every 3 days. Like a hotel with drugs.
For patients who don’t have stairs in their homes, they try you out in the hospital’s PT room on a small staircase before discharging you to home, because the protocol is home PT 3x/wk x 2 wks and then 4 wks outpatient. If you do have stairs to get into your home, it’s 10-14 days at an inpatient rehab center—where they will not let you go home until you can climb stairs with just a cane & banister and walk 2 blocks & back with just a cane. (If you’re still on a walker or crutches, they won’t release you). You are given a wheelchair, but you are encouraged to use first a walker & then a cane as soon as you’re ready. You will definitely not be sent home if you’re still in a wheelchair.
My timetable for my R TKR: 3 days/3 nights in hospital; 10 days in rehab; then home & outpatient PT (clinic had a van). Driving at 6 wks. (depends on which knee, and whether you’re still on opioids—but I took cabs & Ubers everywhere before that; in fact, the night I was released from rehab I cabbed it to a gig). At 3 months, I was on a flight to Budapest for a Viking River Cruise. For the L TKR, 3 days/2 nights in hospital; 14 in rehab; driving by my second week home. At first, you fear you’ll never get through it, but by 6 weeks it feels like a breakthrough and by 3 months you may be a little sore but back to normal. (I gave concerts for the residents at both rehabs while still a patient).
If you get your DIEP first, you will not only have to deal with the pain from that recovery but also with the pain from your no-good knee. (Your body doesn’t forget about preexisting disabling pain while you recover from a non-mobility-related surgery).
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I got the news of the abnormal screening memo—and the recommendation for dx imaging & u.s.—simultaneously via portal inbox message from the Breast Center and phone call from my Gyn. Once I got my dx, the first part of my care team I saw was the BS; I was called by the Nurse-Navigator after that and told I could call her any time I needed. Then after surgery, the BS, then the MO and the RO. After finishing rads, the RO dropped out of my care team. I see my BS and MO every 6 mos. And I see my PCP (in a different health system) annually; or more often for anything urgent but non-cancer and non-trauma related—for trauma, I go to the Immediate Care center around the corner, or even the drugstore on-site clinics, where I get my vaccines as needed).
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Sandy, that's exciting news on the treatment front. Your story of your knee replacements is very enlightening. Your second rehab facility sounds outstanding. Too bad they all aren't.
HUGS!
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Sandy, just curious why the BS remains imvolved. They aren't involved in medical treatment, right? Do they do breast exams? Thanks!
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Natsera, my BS in Michigan did breast exams and ordered my mammograms. When I moved to Spokane last year I didn't see any need for a BS or RO, so my MO does both.
HUGS!
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Just rang with the handbell choir at my church for Easter. Oh, boy! Now I need a pain pill and a nap. But we did sound glorious!
MJ
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~Tappermom~
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HAPPY EASTER EVERYONE!!! Whatever stage you are in... wishing you a Great Day!
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ChiSandy, thanks for your informative posts about the City of Hope recommendations and the knee surgeries, and others. I enjoyed reading about your London trip & the seder. I don't post a lot, currently, because I have brain fog but I dip in an out of several of the forums.
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Going to ask the question again, because it's something on my mind: how long after starting the aromatase inhibitor (in my case, Arimidex), would the menopause-like symptoms start to occur? After a couple of days, are you home free? Or can they pop up later?
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Natsera, I don't take Arimidex, I take Tamoxifen. But, I believe it's different for everyone. I was told maybe up to 3 weeks on Tamoxifen, but I've been taking it over 10 mos and still no side effects. You may be one of the lucky ones too.
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Natsara, My se's started right away, hot flashes particularly... then some bone pain, and found I had osteopenia and osteoporosis.. the hot flashes settled down after about 3 months.. and I started Prolia shots in december, but everyone is different in their reactions.. mine were relatively mild and happy for that...
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natsera - Have been on Arimidex just under 2 weeks, so my experience with SEs could be "premature". No hot flashes thus far. Having some joint pain, mainly fingers & wrists - not as bad on weekends, probably due to not being in the office using keyboard all day. Read somewhere that depending on how long since menopause, effects like hot flashes may be milder. It's been 15 years since menopause for me. Already have osteopenia, but so far no bone pain.
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I'm really losing it today, ladies. I just started crying at breakfast - my husband didn't know what to do so he started talking about stuff going on in his life. I've been under constant stress since last October - the first abnormal mammogram, losing my job after 11 years, another mammo and US, the MRI, another US and needle biopsy, diagnosis, surgery. Maybe it's getting good news last week that has unleashed this torrent of emotions. I've been so stoic since the first suspicion came onto the scene. My concern has been for my husband and my daughter, never for myself. I guess maybe now I'm allowing myself to recognize what is going on.
There's also this weird realization that, with my good news, people around me feel as though I'm done - that's no need for further concern. I still have to go through treatment so I could use an empathetic ear! I'm going to call the woman in charge of our local BC support group - I think they meet this week. That might help.
And, of course, I'm exhausted. Being in constant pain doesn't help. This sentinel node biopsy really knocked me on my a$$. I'm just tired of being in pain. Tylenol and Advil don't seem to do much. I took a Norco when I got home from ringing handbells at church yesterday. I realized that it doesn't really make the pain go away - it just makes you not care you're in pain! I can't be loopy all the time.
So thanks for listening. I think maybe I just need to let all these bottled-up emotions out.
MJ
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(((MJ)))
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Thanks for the hug, Molly! I feel better already.
MJ
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MJ, same thing happened to me about 3 weeks post surgery/path report...I thought I was loosing my mind. It does get better and do not feel like you always have to be the strong one (that was a tough one for me). It will be better and the pain will get better. ((hugs))
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~Tappemom~
I know how you are feeling. I was where you are last year at this time. Diagnoses of cancer, two biopsies, surgery with all the trimmings,35 radiation treatments, had to put off retirement until rads were done, tried to go back to work to help out and couldn't handle the fatigue and breast pain, finally took retirement last August, lost my mother in September, started with joint pain in my fingers in January. It all came to a head in my MO's office this month and I could barely control myself. He told me (and I'm passing it on to you) 'you have had a lot of major life changes in a short time. Give yourself time to heal. You deserve to be taken care of now. Let your friends and family help you. The ladies here are a great source of information and support. You can ask questions, vent or rant. No one will judge you.
Our diagnosis seems very similar. If you want to 'talk' privately, you can PM me.
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I was diagnosed with Stage 1 BC in the first of November and had a lumpectomy with clean margins in December. I completed radiation treatments in late February, and I'm now completing my second month on Tamoxifen. I have resumed all normal activity, and I've even managed to lose a few pounds (although there is still plenty of room for improvement!). My question is this: is it normal to still have some sensitivity under the arm on the side where the nodes were removed? It's not pain--more like I exercised a bit too much and had a tight muscle. I think, too, that that armpit is slightly swollen--probably not something I would notice if it weren't for the past several months.
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Tappermom, I echo what VelvetPoppy's Dr said. This whole process takes you on an emotional rollercoaster. Hugs!
Profmom, yes, it's normal to still have sensitivity. 11 mos after SNB, my underarm still numb, but area between LX and SNB still very tender. And I still get occasional zingers. Do you still do your stretches? I'm bad about doing them.
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(((MJ))). I think it’s the release of tension accompanying the good news that causes the floodgates to open and have all that bottled-up anxiety come flooding out. Much the same as when you don’t get sick until after you’ve finished something emotionally &/or physically exhausting (for me, it was always after the end of a trial or appellate argument when I was practicing, or now after returning from a music conference with a lot of performances and therefore pressure).
Profmom, what you’re feeling is normal. It can take up to a year for either soreness or numbness at the SNB site to subside. That tightness sounds like it could also be “cording:” sometimes the lymph channels get clogged and the fluid crystallizes. An experienced lymphedema PT/OT can perform stretches & massage to break up the cording—sometimes they spontaneously “pop."
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Hi ladies, I hope I can get some replies here.
I went back to have another post-chemo ultrasound today which was done by a very experienced radiologist. Devastatingly, She found another node, which is right next to the one proven positive before chemo, also has thickening cortex (she said both nodes show less thickening compared to pre-chemo ultrasound) . Both nodes are very tiny and very close to each other. I have no idea how this happens -before chemo all scans proved just one node positive, now after 5-month of chemo I might have 2+ nodes positive?
Now my thinking is the 2nd positive node was there already from the beginning but it was just too tiny to be detected by inexperienced radiologist and scans. I am also worried that these two nodes are actually "clumped" together which indicate worse prognosis.
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Thank you, Mellang, Molly, Velvet, T and Sandy for your encouraging words. It is discouraging, however, to have you tell Prof that this pain can go on for a year. T - you asked Prof if she's still doing her stretches. I wasn't given any stretches or exercises to do. In fact, the recovery nurse told me I wasn't to do any exercises. Should I be doing some? I'm anxious to get back to my mat Pilates and strength training classes but don't want to do any damage to myself. I should probably give it more than two weeks!
I just discovered this afternoon that sitting with a little pillowunder my arm really helps.
The good news is my DH and I are headed to Denver next weekend to celebrate our grandson's 1st birthday. Can't wait to sit down and read with this little guy. And I'm taking the pillow with me!
MJ
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