CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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lisa I am allergic to all the nsaids especially the otc ones, i get nasty asthma attack so I stay away from pain meds guess that is good at times)
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Update...
Saw my MO yesterday and complained about the joint pain. All my labs for inflammation/autoimmune were negative and he thinks my pain is due to menopause but he agreed to refer me to a rheumatologist for eval. He didn't offer anything else about the pain except to say that he doesn't feel Tamoxifen had anything to do with it. He said I can take another month before I start it back up again. I wasn't thrilled with his lack of concern for my quality of life.
Liver enzymes (ALT, AST, and Alk Phos) were high so he ordered a CA 15-3 and a PET scan but he said he didn't really think there was anything to worry about - just precautionary. I believe him because he then said 'see you in 6 months!' I figured he would just repeat the blood test in a few weeks but he went for the scan instead. Whatever...I've already met my out of pocket for the year so it will probably give me some peace of mind to have it done.
Now I wait to see the rheumatologist and work with my primary doc to find something that works for this pain. Sigh...
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I just saw MO, he said the lump is just structural and tender right where my scar is. He said there's no nodes there to swell. He said not to worry and everything else looks good. I just can't do this anymore. I think I am going to stay away from here for a while to try to get my sanity back. These mental trips to CT is such a rollercoaster. I am sitting here in my car crying. How do we ever feel normal again? I have an appointment with BS for the 31st. I need to schedule surgery. Maybe once I am finished with surgery and have boobs again I won't have to think about cancer all the time. This damn TE is a constant reminder of the whole sordid business and the fact that my life doesn't offer relief from responsibility I think I am overly emotional. I took today off work to take care of myself and my nurse calls off. So of course I will be home taking care of Wyatt. Okay enough complaints, I thank you all for listening.
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(Lisa) maybe a new MO if this one doesn't listen.
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((((((Molly)))))).... See how necessary C~Town is? I still have melt downs about it, and I don't know if it ever goes away, really. I am glad you decided to take the day to take care of your self.. You have a lot of hard things in your life, I think you have held up very well, with all you have going on in your life, in your family. Thinking of you, go ahead and cry all you need to. We will be here for you, if you need a break from here too. For me, when I take an extended unintentional break from here, I personally find my self VERY crazy.... can you take a leave of absence, so you can spend more time with/on yourself? And coffee with me?
Today and yesterday, I am mourning in advance for the young man who is my lymphedema therapist. I have had 3 different people for that now, and there is just something so special about him, I look so forward to seeing him each week, for the conversation as much as the therapy, which he is extraordinarily good at. I wish I would have had him from the beginning, my arm is so much better, and my spirits too are elevated by things we talk about. No more LE sessions for me until next year, I can drop in and visit, I suppose, when I am there for other doctor's appointments, but it won't be the same. Last week when I was there, though, a new hire sat in on the session, except she was the one doing my arm. And I became upset with her for several reasons. First, she was insistent that I wore a gown. And that right there unsettled me, because at least with Francis, he offered, I declined. Saved time, and also made me feel less a patient and more a person, I am sure you know what I mean. And then, she was inspecting me, and said, 'oh you only had a lumpectomy'...... Only?! Well, excuse me, Miss Only! And then, working on my arm, she blamed me, yes she did, for two fibrotic areas in my arm. Dammit, yeah. Because,well MAYBE my first le appointment came too late, because all my doctors said it wasn't that bad?!? And then, the first LE'ist was okay, but even she with all her knowledge and technique (AND TWO ARMS) was not able to reduce it as much as Francis can, 3 years later. She blamed me. She said I let it get that way. I remember the first woman doing my arm, she would make these little chip bags, and wrap them into the bandaging, and nothing worked that she tried. So that lets me see how efficiently the young man does. Oh, and initially, the problem of we kept having to send my sleeve back, because it did not fit right, and then the place tx center was using, ran off with my money. Too bad and stupid for me, because I paid upfront, cash~~~ never got my sleeve. That place went briefly out of business, my tx place dropped them before that, and I guess now there is a new owner. So all this waiting around for the sleeve from the beginning, not being treated efficiently, taking to long initially, ALL contributed..... but no~ it's MY fault. And that I needed new gloves and sleeves every six months. That part is true, but I have NEVER had a glove and sleeve fit properly, and am reluctant to get new ones. Oh, yeah, also, when you get measured, your arm has not been manually drained, so, you are getting a sleeve that is already allowing your arm to fill with too much fluid.. And my arm aches every day, no matter what I do, a constant reminder of stupid cancer. Okay, rant over. I guess, but it is things like this that I dwell on each and every night, making it difficult to fall asleep. I am thinking about my self too much, and getting angry all over again about it. She had suggestions about places I could go to meet other women with cancer fallout, but you know? All I want to do, is my stuff at home, the stuff that makes me forget about all of this. I guess that rant wasn't over.
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(((Tomboy))) coffee with you is a definite. I just need to get past the hell which is work. My crazy schedule finishes next week. Are you not going to get to keep the same therapist?
I did run into my BS's nurse so he had to get me an appointment with her. Apparently she's very busy. Still nobody calling me to schedule surgery. Grr. I am going to call the PS office and get them to push.
So does MO mean structural in scar tissue? It doesn't change the fact that it's sore and tender. Anyway, thanks Tomboy for just being here when I needed it someone.
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Yeah, Molly. It probably is just scar tissue. Maybe the MO meant what radiologists call architectural distortion. Tat's caused by surgery and radiation. I am betting you are fine, you have had all of your treatments so recently. From what I have read, the chemo and radiation keep working in your body long after the last one. Also, many doctors are fond of calling it 'fat necrosis'. Yuck. I don't like fat in my body, dead or alive. I have got plenty of living and thriving fat.
Katy- where ARE you??? I miss you, and I finally found my check book.
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Thank you for putting a name to it!! Okay I can breathe. You are right and I keep telling myself that I just finished radiation 5 months ago and I am probably seeing physical changes from it.
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Tomboy, fuck that LE therapist. Don't you just wish, just once, when somebody is that uncaring you could pop them in the mouth and get them to become a human being again? Why are people so judgmental and look down their noses at others? Don't they realize their stupid ass could be sitting in that same chair tomorrow? I hate sanctimonious, smug people, makes me just want to pop the shit out of them.
My latest crazy town thing is ----- supplements, drugs and surgeries. Bone scan came back with very, very slight osteopenia (which I think can be chemo induced), and the MO was like, oh, you need to do Prolia to prevent bone metastasis. And consider getting your ovaries removed (I'm hormone negative, so wtf?). And then my husband, who means well and I love very much, keeps trying to add supplements when he reads "oh, x y or z helps induce apoptosis and can help prevent cancer recurrence."
I've come to the conclusion that if I did everything everybody tells me I can possibly do to prevent any future recurrence, I will do nothing but pop pills and have surgeries.
Trying to figure out how to resolve all these "suggestions." My first instinct (which happens when people push me too far) is to rebel and cut out all supplements and surgeries and enjoy a year of life and think about it later. I hate the implication that "oh, if you take Prolia it can prevent bone metastasis" which is essentially saying "if you don't take it and you get a bone metastasis, then you are a complete dumbass."
I'm sick of treatment and pills.
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been thinking about you all, dont have my glassds so doing my best.i love you all0 -
Teresa,
I don't understand the recommendation to remove your ovaries at all! If your tumor was hormone negative and you are slightly osteopenic then you don't want to take away the estrogen as that will worsen the osteopenia and not decrease your risk of recurrence at all. Regarding Prolia...I thought that was for strengthening bones but I don't know how it prevents bone mets? Unless they are saying that denser bones are less prone to cancer attacks? Just doesn't make sense to me. Did they explain the rationale behind both those suggestions?
On the husband front...good luck with that! My DH is constantly making suggestions and I finally had to tell him that nothing he has suggested is scientifically proven and I'll just end up with really expensive piss. He hasn't suggested anything since
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Theresa, I don't get the suggestion to remove your ovaries either. Our ovaries provide protection for your heart, bones and brain. From what I read, Prolia and other meds similar to it can help prevent bone mets because it makes your bones more dense. I have an article somewhere. I hate the whole idea that people think you did something wrong if you get cancer or have a recurrence.
Tomboy, I would really like to pop that therapist in the mouth for you.
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Sorry I have been gone so long, my Public Speaking class really bogged me down.
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I have also read that prolia is protective for cancer. But like Molly, I couldn't find it for my life.
I think some times oncologists get dizzy, for running in and out of different rooms, and then that makes them confused as to who you are. (I wonder if they think deep in their brain:'Hmmmm, it's a woman, must be breast cancer, without paying a whole lot of attention to getting to really know your case. By heart, I mean, without having to glance at notes.
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Hi all....well, I am back from Mexico. And sort of wishing I was still there. I can't pretend that I will catch up with everything....but just a few comments:
Tomboy, I second the urge to slug that LE therapist. Well, maybe violence isn't the answer, but still, perhaps I can be official bouncer and bounce her ?
Molly, ((((hugs))))). Sorry it is so busy and so tough right now..but glad you got the all clear on the lump even if the MO wasn't super helpful....
For all of you with the SEs and wondering whether the pain is worth it...well, I can really relate. I had a great vacation, but the first few days in Cozumel were really, really hard. Part of the problem was that I was there with a group of friends (my dive club). A few know what I've gone through, but not all of them, and all of the remarks on my 'new hair cut' got a little hard to take. (especially the 'friend' who kept asking me what 'possessed me' to cut my hair so short. Really?) One thing SFBC has taught me: never, ever ask people personal questions about their appearance. A compliment is fine ('You look nice today') but to ask why someone looks the way they do? No. But anyway, I digress, sort of. In addition to that aspect, my real issue was that I felt like crap: my knees hurt so much I didn't want to dive, my thumb was really sore (and I do use it diving, the gear is set up in a way that it is common to use the left thumb, which OF COURSE is my sore one, to push two of the important buttons) and I started to get depressed. But dammit, it was my vacation, so I stopped the pills. A vacation on my vacation. My joints still hurt, but within a few days I felt better, and I DOVE!!! Woohoo!!! and I felt really good in the water. There is a thread on these boards about getting one's mojo back, referring to sex, but for me, being Octogirl, getting my mojo back means feeling and looking skilled underwater(it is called 'neutral buoyancy' for those who aren't divers; in essence in a state equivalent to weightlessness)...and finally, I did, thought I still hurt enough that I stuck to easy dives. That's ok, I like easy...and saw lots of cool stuff.....
So where does that leave me? I had a lot of hammock time to think this trip, and I realized that I just don't want to put up with this pain. I am going to restart the pills until my next MO apt in early June....but going to go in and let him know how much it interferes with my QOL....and seek his advice. and hopefully he won't just shrug it off. Regardless of what he says, I am also going to confer with an orthopedic specialist. It may be time to replace those knees. I would like to coordinate the AI treatment with orthopedic treatment, however. Remind me in a month or two, that I need to deal with this, ok? You all have been there, so you understand....
By the way, I heard an interesting report on a new study today: The Harvard School of Public Health was polling folks to find out reaction to a proposal to bring drugs to market faster through relaxed FDA regulation....turns out that women are more cautious and see more need for careful FDA scrutiny of drugs than are men. But it also turns out that, among the folks surveyed, women reported more side effects from medicines they are on, then do men! I don't know if there are other studies on this specific topic, but I intend to try and educate myself on the issue via PubMed. I get that taking away estrogen has a lot of negative consequences for the female body, but shouldn't there be better ways to counteract those SEs? Why the fuck do women have to suffer?
ok, enough ranting. It was a really great vacation, despite some rough and introspective moments. pics when I have a spare moment, which could be a bit....Sending hugs to all of you!
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Octogirl, welcome back. You may not know that I was having horrible time with anastrozole. I felt awful all the time. After 6 months I asked for a break. After two weeks I started to feel better. My MO switched me to exemestane. So far at 3 weeks I feel the most like myself than I have since surgery. Have you asked about switching?
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yeah, I don't get the Prolia suggestion, so right now I'm ignoring it. Some measure they took was -.5 and normal goes to zero or something like that, and at -.5 I don't think bone strengthening drugs are even recommended. Plus, I thought there is some lawsuit about the claim of strengthening bone and preventing bone mets was found to be untrue? And also that it causes old bone to stick around longer which can lead to brittle bone and fractures?
I had an estrogen test about ten years ago, and it showed I am basically producing almost no estrogen, can't imagine that has changed.
Octogirl, I have no problem being the slugger to pop a person making stupid comments. Sometimes I think if people were called to task about stupid comments more they would stop saying them.
Bekah, my husband takes all kinds of stuff and has been having gastrointestinal issues. I have been suggesting that he cut out everything and see what happens. He finally did, and then told me make sure you are in a big room because I don't want you to blow out the walls when your head swells, but I didn't take anything yesterday and woke up this morning feeling great. For whatever that is worth lol
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Molly, if anyone knows how we can feel normal again, I hope they tell us all. I go out with two or three of my sisters, and feel absolutely different from them. I'm sorry you are feeling that way. Maybe the new boobs will help you feel more normal. And, yay, that your lump is okay.
Tomboy, ONLY a lumpectomy? Ahhh, the nerve of her! She should be bounced, like octogirl says.
Hi, Blondie, how are you?
I do wish more people were called out on insensitive remarks made. A lady from my church told me she thought she was going to have to spend her flower money when she hadn't heard from me. It was during chemo, and I was doing a lot of resting or puking or something. I think she was a bit horrified she said that to me.
I have gotten to where I make good and sure I really want to take any kind of pill, now, even if it means I have to be achy. Tired of drugs.
I have had a few people ask me if I was going to get my ovaries removed. My MO never said anything about it. Oh well.
Lisa
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Tomboy, I'm getting in line to strangle that LE therapist....with an ill-fitting mis-measured compression sleeve. “Only" a lumpectomy? It's like someone with pancreatic cancer saying “you ONLY had breast cancer” or someone who underwent an emergency quad bypass sneering “oh, you only had a heart attack.” Jerks will be jerks. My friend out south who recently had her bmx went in to her local small-town hospital for her diagnostic mammo & ultrasound, after the routine one she got in her village doc-in-the-box revealed the abnormality. She asked the receptionist where the diagnostic radiology suite was, and the idiot replied, “Oh, flunked your mammogram, huh?" (She's never setting foot in that hospital again except for a dire emergency).
Tonight was my monthly support group meeting. I missed last month's to go to dinner with Bob, so I didn't know that the April meeting was leader-less but the members who attended weren't given any explanation till a week later, when the facilitator's partner in the survivorship program (an onco-gyne) e-mailed us to report Carol had died “after a brief illness." We'd assumed that meant a recurrence, or maybe pneumonia, but the obit in the Trib mentioned cancer as the cause. Well, the gyne who led the meeting tonight (also named Carol--we'll call her Dr. Carol) told us it was an entirely different primary tumor, not in the breast, but so highly aggressive, undifferentiated and widely disseminated that it was untreatable. From dx to death was three weeks. She was not at liberty to tell us exactly what kind of cancer or its location, but from Carol's having wrecked her car twice in the two weeks prior, and Dr. Carol's admonition that Carol would have wanted us to remember her the way she was when she led the meetings, it was almost certainly a brain tumor.
The meeting was longer than usual because not only were there new members (and new facilitators--Dr. Carol and an oncology MSW), we all had memories of Carol to share as well as suggestions as to both how to proceed with future meetings and honor her memory as a group. One thing we all found we had in common--regardless of stage at dx, treatment, length of remissions and recurrences & comorbidities--was a sense that bc is not a disease to either be cured of or conquered by but a process we all go through to varying degrees; and the “other-shoe-about-to-drop" feeling is lifelong. Another thing we noticed was those of us dx'ed when older were more philosophical about it and rather than panicking we simply planned for each step--it was the younger women, especially with school-age kids, whose lives were turned upside down and feared the future the most. And the Stage IV member described having developed a sense of “fearlessness:" being unafraid to call out a-holes on their behavior, unwilling to accept lousy service; and booking a bike-and-barge tour through the Netherlands & Belgium--and training like crazy for it. And tonight we did something nobody'd thought to do before except the small quartet who'd gone through tx together: we all exchanged contact info, for ridesharing and venting in between meetings.
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Blondie.. We love you too. :-)
Mommy.. Welcome back.!!
GMA.. I'm not patient at all .. So I'd ring NOW. !!
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Hi Ladies.........well I have a lot of commenting to do......so this could be long, but I hope not boring......(on the other hand it might be).
Not going to name individuals, but when I comment you will know who it belongs too......LOL belive me my short term memory sucks.
First, my husband died from Pancreatic cancer.....so when I got Breast cancer a comment was made to me."at least you got the good cancer".....enough said....
As far as LE goes.........I could have written your story Chi....(hope I got that right without going back to look)......everything that happened to you , happened to me.....had a decent therapist, my arm was barely swollen......got it to a reasonable size where we could order my sleeve.......went to an "EXPERT" for measurement (and now I use that word loosely)................she measured me, the sleeve came in pathetically wrong........my LE therapist said "this is ridiculous ..........we sent it back....I got re-measured (same woman), and when the 2nd sleeve came it too was wrong..........I got fed up, and said screw it.....the cancer was bad enough, along with the Rads (38 of them).......but I continued to try harder to cope.......finally my therapist gave me a redi-made sleeve that seemed to do the job..........well then she retired, so I just had no one at that point.............the rest of the story is like yours.....tried others, and all I was doing was spending $90.00 a week in co-pays, and nothing was being done......I did all the exercises, massages myself, and sucked doing it...............at this point..my arm is swollen again, hurts at times, and yesterday at my 6 month visit my Onc said....."you need to go to a LE therapist"........and back to the same place I was not happy with before...........TO BE CONTINUED....
Now the meds.............I won't elaborate on this because most of you know I stopped Letrozole after 4 years because of QOL......only to try Arimidex for 1 month, and it was much worse then Letrozole, so I stopped that too.......taking my chances.......(I know dumb), but at least I'm not as bad as I was with pain.....but still bad.............the SE's did not go completely away....oh wait.....my hair got a little thicker.......lol.......
So I guess this is just the "way life is"....for all of us who got " The good cancer".........so excuse me ladies while I turn up the music, do a little dance for being so lucky to "HAVE GOTTEN THE GOOD CANCER"............
Oh and might I mention "foot neuropathy", with a little Plantar Fascitis thrown in..............I'm done.................0 -
Hi Blondie.........
Pardon my rant Sweetie................hope your doing fine.........and you probably could use a weekend down the shore................hugs
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ICM and any others that this may help... I had my ovaries removed 10 years ago and I still got BC this year. I wonder if it helps reduce your chances of getting BC of another type other than my IDC? Very thought provoking topic.
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Duckyb1, I was also told I was lucky to have gotten THE GOOD CANCER!
Octogirl, I'm 56 so I would have told them I got tired of waiting for my color to grow out so I helped it along (I greyed early) I also have a tendency to give as good as I get... I'd ask what their reason was for their choice in hair styles?! Some people are born a-holes and just get bigger with age! Jerks
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gee hello all, i was told I was mildly osteopathic years before my bc craziness, took Fosamax for max time and before my start of bc treatment, my density was fine. After bc stuff, i increased my weight bearing nonsense and at my ,out recent test all was cool so that is my suggestion
Hanging with a foot person today fun
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Hello all -
I'm glad to know I'm not the only one who feels like I'm on a merry-go-round of docs/advice/further considerations. It seems like when one thing seems to be resolved, another issue pops up. I went for my first gyn appt since diagnosis. Told him I'm on the AI (vs. Tamoxifen) and he said MOs often prescribe them too soon; "the ovaries are DYING, but not yet dead," and may be limping along, still producing some estrogen. So, the AI can actually stimulate estrogen production, and therefore become a risk for recurrence of ER+ cancers. HELLO? My MO never mentioned any of this.
He said my ovaries are normal on exam, but now wants imaging. Honestly, the stress of more testing is really getting to me. I just asked him point blank: Can't the ovaries just come out? At this point, I would rather have that surgery and the peace of mind that would come with not worrying about that aspect of this whole ride anymore. I was also told about mild osteopenia, but again, no mention of Prolia or anything like it. I guess I will save this questions for next MO appt.
Molly - I'm sorry you're in a bad place, but so glad the Aromasin is better then Arimidex for you.
Here's hoping we all have a peaceful day today.
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Hello All
I lurk on this board and love it. Duckyb1, I thought I was the only one that has been told oh at least you have the good cancer? I'm triple negative, IBC stage III how is that good in any way? How is ANY cancer good?
Just a rant. Thanks
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Ducky - I had my MO tell me that... The Good Cancer - Crap -
I have tried all the AIs and can't take them everytime the MO wanted to see me and took one look at me and said there was no way to survive 5 years on the stuff. So I am also taking my chances.
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hello everyone! Welcome home Octo! 🐙🐙🐙 you were missed.
Hugs to all who need them, posters and lurkers alike. So frustrated on behalf of all the pain and suffering. Mine and all of yours.
Welcome WenchLori!
Hope everyone has a good day. As good as possible. 💗🙏🏻💗
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Hated being lost in CT because of my class. Felt like I was never going get back here!
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