STEAM ROOM FOR ANGER
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That "cancer is a gift" line is a trip. Someone made a comment in a IRL group discussion the other day, "I've learned Mother Nature doesn't give you anything you don't need." WTF?! I certainly don't need MBC. ::smh::
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Lita sounds like she was a wonderful person. I'm sorry I didn't know her. I didn't know what OP was so thx for clearing that up. I'm amazed at the # of people that can not accept that this a pandemic. Some people feel they can blame whomever (take your pick) on what is going on world wide. I am avoiding the covid thread as it just stresses me out. I wasn't offended, just the back and forth got to me. We all wish this shit was over and when you are dealing with being sick and just everyday life.. I feel like I can only worry about (or want to) my own life bubble. Besides our own dx we still have to deal with all the irritants of everyday life. I am thankful that there is this forum where we come to express our thoughts and feelings. I don't know any of you but I do treasure reading your posts.
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Mae - thanks for mentioning Lita. She was a treasure. And Apple. And Michelle. And... I've met so many really good people on these threads.
LW - if your PT was at MDA, you should tell your MO about that particular therapist & try again with someone else. I had a fantastic LEPT at MD Anderson/Katy who saved my bacon several times. Or even if not at MDA, the treasure is often hidden in piles of dross (that's a polite way of saying there are lots of stupid idiots out there) so don't give up with the first one.
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Lita was a hell of a woman. She reminded me very much of a close friend of mine who had stage 4 ovarian cancer and died last winter. They were both funny, feisty realists.
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Still waiting on test results. Mammo is due this month. I haven't called to schedule yet. Don't see BS until late October so have a bit of time. Seeing just one of my liver enzymes came back high I just don't have a good feeling. Just waiting
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Minus 2--Thanks, but I have no interest in any PT at this time, and certainly no LE therapist. I'm only 2.5 weeks out from my mastectomy and I've been doing the range-of-motion exercises at home. This morning I found that MyChart was littered with twice-a-week PT appointments for the next 5 weeks so I called and cancelled them ALL. In some ways I believe this is nothing but a money grab, and it annoys the hell out of me.
I'm feeling better each day just doing my own thing, and I resent the push to set up more appointments for something I'm doing myself. Such a waste of time, driving an hour to get there, dealing with the medical center parking, waiting in the waiting room for 30-45 minutes because they are ALWAYS running behind schedule, dealing with the half-assed "therapist" who is pointing at diagrams on a sheet of paper, then the hour (or more) drive home in rush hour traffic. GRRRRRRRRRR
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The PTs associated with my surgeons are top notch and sometimes not everyone gets referred and it's become a pet issue of mine to encourage people to get referred. For ages people weren't getting anything. Then some got a "pre-op teach" and a handout, then some started getting referrals and a decent set of sessions to monitor ROM, strength, mobility assessment, lemphedema assessment. I think PT is hugely undervalued and underused so I'll leap to their defense. If you have a referral and insurance coverage, that is a blessing!
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We can only hope when we are gone someone will remember us that way as well.
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I miss my LE therapist. Very knowledgeable and adjusted to whatever I needed when I saw her. She was the most punctual medical person I've ever seen. When the pandemic hit, she cancelled my appointments. I haven't tried to see her again yet. I'm sure she's busy with people who need her more.
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Wrenn--I was not "judging an entire industry," simply MY experience if you will allow me to have it. I was being evaluated for ROM, NOT LE. All the "therapist" did was pull out some printouts of exercises and point at them for me. Not exactly a valuable appointment from where I was sitting.
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Lw422- I've had both good & poor experiences w/PT (skiing accidents). Since you are good about self care, see if you can get your referral to PT close to house and tell them you want progressive plan & once/week appts to monitor progress & get advice on how to increase exercises safely.
I meant this as alternative advice, not to be so direct, please ignore the tone, I'm too lazy to restate more kindly.
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Agree with moth that PT is underutilized, and absolutely under-referred. If I hadn't asked, I don't think I would have gotten a referral. Made a huge difference with my ROM. My shoulder had gotten increasingly tight, and PT quickly helped me get back to very normal ROM.
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oh & my last thing about PT is that in the early weeks post-op, things often look and feel fine & the exercises seem relatively easy.. The tensions and adhesions can start settling in weeks and months later causing restriction to ROM and pain. So I think sometimes early on it's easy to say oh this is nothing, it will be fine, it's not a big deal to do the exercises. But the point is to establish a habit of doing some of these exercises regularly, and doing them very correctly, with proper position and extension...possibly for years. I developed cording about 9 mos post op; my surgery side is still not 100% and I'm at almost 4 years out.
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About 5 years after I had my lumpectomy I found a physical therapist who specialized with mastectomy patients. I found out about her from a breast cancer survivor group. She was terrific and helped me get back my range of motion. My lumpectomy on my left side caused my right shoulder to lose range of motion and I had frozen shoulder. The physical therapy fixed everything.
One of the most important aspects of physical therapy is that you learn how to do these exercises/stretches in front of your pt. That way you learn to do the exercises Correctly which is crucial because you can hurt yourself by doing them uncorrectly. My experience is that it is hard to find a good pt but when you do it is amazing what they can do for you.
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Where I go there is one person who deals with breast cancer patients only. I think that helped in my case. It is affiliated with a university hospital medical system so that probably makes a difference.
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bcincolorado - It may be. I'm at a large university hospital system. Before my mastectomy I was seen at the hospital PT clinic to get baseline measurements (in case of LE) and given a link to post-mastectomy exercises. The breast clinic has a team of kinesiologists on staff to treat LE. My BS referred me right away when I had a mild case of LE. Everyone seems to have checked my ROM including my RO. I have most of my ROM, but I have to work to maintain it. In addition to surgery and radiation I injured both shoulders when young.
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I'm angry at the miserably short survival times for metastatic breast cancer. This from the metastatic breast cancer research conference today. This is making me livid. Livid. Where are the advancements??? Chronic disease, my ass. We need so much more for stage 4, we need the early stagers to really lift up the mantle and push for cures and treatments for stage 4 because we are not making much progress & well, we die before we can accomplish much
https://twitter.com/2020VisionGirl/status/14360912...
On the plus side, guys I've outlived my best before date!!!! 14 months? phhht
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I posted last week about the hospital charging my insurance almost $1000 for genetic testing. Turns out that was only part of the charge; my insurance is still processing the claim from the actual testing company that my sample was mailed to and they are charging $2750! So, in total almost $4000 for genetic testing. My jaw is on the floor. That is about the same as the radiologist is charging for an MRI-guided biopsy, a highly-skilled procedure that took almost 2 hours of her time. What???
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gamzu, it depends who is doing your genetic test but medical genetic tests are not the same as the cheap ancestry and other dna kits. They test many more exones unning a genetic test is a highly technical process. "medical-grade testing for BRCA gene mutations analyzes thousands of gene variant options, whereas one leading at-home kit considers just three." https://www.everydayhealth.com/cancer/what-to-know...
It is a highly technical test running through thousands of base pair mutations. When they run the tests, they have to have an inventory of known mutations that they compare against. There are thousands of mutations possible, and some are not associated with malignancy. You're paying for their gathering of known mutations and the building of very sophisticated anylytical machines.
I'm still considering redoing mine as I'm not sure that the company that did mine is as robust as I like & I have a family hx and a female child that I worry about.
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Mine was through Invitae. And you are right about the sophistication, my report appears to list what exome I have for each of the 28 tested mutation sites. I have been fortunate to not have really needed my insurance for anything before this BC saga aside from an office visit here or there so seeing the amounts on these EOBs is pretty appalling. I'm sure I'll be inured to it soon enough.
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gamzu-the company will work with you. It took me months to pay the genomic bill. Pretty sure I still have an outstanding balance from 2019 as well. Seeing what happened in 2017 & 18 when Penn stopped sending bills, it went to the 1st collection co. I could not match up what they were asking, so after letting it go, it went to a 3rd collector- they had the correct amount and offered a 1 time settlement for a lesser amount, so that's what I've been doing if I can't get the bills paid as they come. I wait-usually it's a year end dump.
oh moth-no words. You are an exceptional contributor here despite your own health. I really and truly admire you for that.
Still waiting on my ultrasound results. Got an equivocal score on the anti mitochondrial antibody. At least it wasn't positive and my phone hasn't rung! I have ben reading about different liver conditions and what these labs are for since I've never had them done before. Weird that alt and ast are always normal. alk is always elevated but not by any sort of alarming amount. Still calm and hopeful that these tests are ruling things out rather than facing another diagnoses of some kind. Would just like to read the US though.......still waiting.
Happy Friday!
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...and/or you can be a cheapskate like me who's not eligible for insurance-paid genomic testing, and download your raw DNA from 23&Me and upload into Promethease.com which gives you your DNA report within 10 min for about $12. It spits out data from thousands of genes, but prioritizes based on integrity of scientific data. I figured if I found something alarming then I could take it to my Doc and insist on a bona fide insurance-paid genomic test.
Didn't find any concrete answers about the etiology of my BC, but I found too much info about the Alzheimer's and Parkinson's that runs in my family. A risk if you use one of these sites...
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I've just got off the phone with my doc and I wanted to share with all of you who provided such amazing support and advise that the vaginal bleeding I had experienced was caused by a large polyp, so nothing sinister! I will undergo polypectomy and hopefully that will be the end of it. I cannot put in words how immensely relieve I am! Sending you heartfelt thanks for your support. ♥️
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I am glad to hear it Rain86 that you can get rid of of it and be done.. I know it eases your mind.
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I'm not angry, but I'm disappointed about something in my personal life. At the beginning of the year, I was asked to write a crafting book. A small publisher is planning to expand their offerings to include craft books. The project started a bit slowly, then ramped up and because of editor/publisher input, became a quite different project than either of us expected. But there were project management problems on the part of the publisher, and several of my concerns were never appropriately addressed. Because of the publishing company size and this new product line, some of that was to be expected. I tried very hard to be flexible and understanding with problems. But still my concerns weren't being addressed.
At any rate, on Saturday I let the publisher know that there were still issues, and I asked when we could iron them out. Publisher wondered what was wrong. SAME LIST. THE SAME DA** THINGS. So I said, same things: this this this and this... She brushed me off again.
Lovely, creative, brilliant person, terrible project manager. Also frankly disrespectful.
After I said, there are still these things, and I know you have these problems in your life, but there are STILL these things we haven't solved yet, she quit responding.
We had gotten to this point at the end of May. A phone call we had, she would not let me talk, kept talking over me. I finally loudly said, "STOP interrupting me!" And I told her then I'd have to think about whether or not to continue. And here were are 3 and a half months later, and most of those same things were never resolved.
I stuck with it largely because of my husband's encouragement. But today I told her, very kindly, that I am done with the project and appreciate the opportunity, but life is too short to spend it on things that aren't truly rewarding.
SO I guess this is about cancer, after all, because my recognition of the brevity of life, and the need to be honest about my own desires for how to spend it, is partly because of my own cancer.
Anyway, she didn't respond to me today after I contacted her again, either. So I guess she's giving me the silent treatment. Which is okay. Her feelings are not my responsibility, as long as I know I tried to be clear but not mean.
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Sorry your latest project didn't work out for you Mountain, despite your best efforts! Sigh.
I've been having a wonderful time with family and friends celebrating the big 6-0 birthday these last 2 weeks. I have a few more social events to go. Finding and feeling it's all down here from here. I am a little anxious and depressed knowing at some point something will go wrong with my health. My abdominal ultra sound says my liver is enlarged. Everything else looks normal. Looking this up, it seems to not be a diagnosis in itself but there's a long list of things that could cause it. Of the list the 2 things that stand out to me are drinking alcohol and mets. I also had the lab work come back with a Gamma 2x what it should be, the anti mitochondrial antibody came back equivical, and my alk phos was 140. The alk phos test results went a step further and show a breakdown of liver and bone. My liver was in normal range, and it's my bone that is over. Interesting. No idea where to go from here, the office hasn't called me yet. I am also to go in for my esophagus stretching. I'll give them another week. It's a very busy GI practice. Meanwhile, I will do what I can to help myself, so I am going to quit drinking my wine. Boooo, but it's time right? This is scary, but maybe not. I'm no where near a goner yet. Thanks for listening.
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It IS scary. Cancer is f'ing scary. I'm waiting for a call from the BS office, because I have a small lump under my lumpectomy scar. (Actually, it is VERY lumpy under there, but this is a new thing and very distinct.) And it just seems like it's always something! I hope you get good information soon, ctmbsikia.
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Okay... time for my first official rant on here. My issue is paternalistic doctors and the barriers we have to accessing our own data!
I had a CT scan last Tuesday but am in a weird limbo at the moment as my regular MO (who I think is the best) is on sabbatical until February. I had an appointment to see another MO on October 8th. Here we now have access to our scans and other test results but there is a holding period to allow the physicians time to go over the results with you. It looks like my results will be posted tomorrow, likely at the end of the day. I'm pretty sure there is progression so when I had to reach out to my GP's office on another issue I asked if they could let me know the results. The response? They could book an appointment with him on Thursday. OMG... just tell me what's in the report already! It's not like he will be able to advise on treatment or anything else. I said thanks but no... I will see the report tomorrow.
As it turns out, shortly after I received a call from the new MO's office. He's moving my appointment up to... September 24th. So clearly progression but apparently not in a big rush. Sigh... God I can't wait for my MO to get back!!! He would have just phoned me, likely after hours or even on a weekend. Great oncologist...
Thanks for letting me vent.
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Oh no Sadie! I am so sorry you are dealing with doctors like that. You deserve better care.
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