MIDDLE-AGED WOMEN 40-60ish
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I swear, if stress causes BC then I will surely get it again!
So, last July, I went for my five year BC follow-up. A few might remember that I asked for, and got, an MRI for the definitive look-see at my five year point. Well, by Sept. the hospital mega-complex (of which my Breast Center is a part) was sending me a bill for a $1400 portion of my bill that ins. would not pay. In particular, it was for a computer-aided second reading of the MRI. Since I had a predetermination of benefits done beforehand, where I was told that I would be covered at 80%, there was no way that they were going to fleece me on this!!!
Flash forward a few months, a dozen phone calls later and the charge was in review. Then, I get another billing for the same. Rinse, repeat, with the dozen phone calls until, finally, in March I was verbally told that the amt. usually gets written off due to the contracted rate they have going with my ins. co. I was supposed to get some kind of form letter in the mail with the outcome of the review in writing, but I never did get that. However, no more bills, so la-ti-da, skip away. Then, last Friday (and it always is a Friday, isn't it?) I get a call and letter from a collection agency, now for $279. The funny thing is, the hospital had never, I mean never, sent me a billing of those charges.
Flash forward thru' a crappy weekend of anxiety and last night's four hours of sleep, to 8:01 a.m. this morning. Oh! Apparently, that new amt. is the 20% I would owe from the original charge for the second diagnostic reading, BUT (my big But is really getting around today) I was told that there had been an error in that no billing had ever gone out. I got some kind of rant on (as I like to do when I hear that opening recording that "all calls are being recorded") of which the highlights were me asking if I was supposed to become a mind reader now about my billing; how horrified I was to be given to a collection agency; and what a shoddy way for a "U.S. News Top Hospital" to function---you know, the whole earful.
Now, I realize it could have been anything, but it was not. It was BC still impacting my life in a negative way. I try so hard to mentally move on and I just hate to be dragged back down by it, even in this way. BTW, my case is being withdrawn from the collection agency and I will get a new billing from the hospital, which I will promptly pay as I have done all the rest. Now, if I could only get a paycheck for the micro-managing I get forced into...sheeesh!!!
[And thank the goddess above that I am not exceedingly elderly or frail that I DO have the stamina of a pit bull when it comes to resolving these types of issues. In my mind, I have to fight these battles because I know there are so many who are too old, sickly and weak to stand up for themselves in matters that drag out for months at a time. It really makes me mad. While I hate the stress of it, I have to do it on principle, don't I?]
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Shaking my head.
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Elimar, CEA is the third TM I get. How the heck did your friend not get chemo with a stage 3 dx?
As for the whole early detection of mets issue, it is controversial. My main doc says that if you find the mets 4 months earlier, say, than symptoms appear, that just means 4 extra months of doing chemo. That is the standard view, but it makes little sense to me as well
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I think she said no adjuvant chemo- no chemo before surgery? She had some after, right el? I refused chemo before surgery, now I am glad I did, really they can't properly stage you if you do neo chemo.
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MinusTwo recomended that I post this question here. I had my first batch of tumor markers run, and my CAE was 6.5. Normal range is 0-4.0, but I have seen that it is higher in smokers. I left a message for my MO, only to be called back by his office to be told, they had an emergency and were just checking the nurse line, and he is gone for the weekend, please call back on Monday... BTW I'm on Herceptin, so my last infusion is in 3 weeks, and he is moving and that is his last day, so that might be why he ran the markers. Not really sure as they have never been done before. What numbers have you guys had and what actions were taken if elevated and what outcomes? BTW - blood was taken through my port, so not an issue with maybe missing some little cells, as you might when they use the pediatric needle. hummm.... wonder if there is a study on the numbers on a needle draw and on a port draw?
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Welcome, knmtwins! I am not the most knowledgeable on tumor markers, but please do not fret all weekend about this. I think you will find that on Monday, no one at your doc's office will be in a panic over that slight elevation outside of normal range. I think the important thing about having a blood draw for markers is to watch the trend. If you have a series of draws over several months and the number rises consistently, I think that would cause concern, and at that point several scans enter the picture. When you get your last Herceptin, stop by...we like a good Happy Dance every now and again!
Momine and tomboy, Let's see, I think the summary of my BFF goes like this. She had neo-adjuvant chemo to shrink a larger-sized tumor. Scan showed good shrinkage, but upon surgery it was seen not to have shrank as much as it appeared on the scan. She got LX + 17 nodes out, and 5-6 were positive, so she did get radiation after surgery, but they did not have her do more chemo. Maybe because the neo-adjuvant was not as super effective as they thought AND she is ER+/PR+ so maybe that ruled out more chemo; they went from rads to an AI. Trouble was the AI did not have the desired effect either since some mos. later she turned Stage IV.
[This is the part where she didn't get followed very vigilantly--no TMs--but even monitoring the TMs wouldn't have closed the proverbial barn door and her BC horses were already racing around her body. However, it was back PAIN that led to the discovery of the mets. Maybe with TM monitoring she could have been spared the back pain and also could have begun treatment earlier when her bone lesions were of smaller size.]
Anyway, after mets, she went on Tamox., got phelebitis and a hidden DVT was also discovered, which ended Tamox. After some Warfarin for the clot, it was on to Faslodex. Her TMs just kept climbing. She went from double digits to 400+ in 4-6 mos., so now just made a switch to Xeloda (that's the pre-drug that converts to fluorouracil/5-FU in the body) and we all have our fingers crossed that the TMs take the hint and start to drop. She really did not want to go to Xeloda since it brings on the Big "D" and she is all set to embark on a Coast-to-Coast road trip to the Grand Canyon this summer, but she can't let cancer run wild either. Ah, the things we have to do for cancer. What's not to hate?
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Eli, That is a sad and frustrating story. I hope the Xeloda does something. Thing is, I had neo-adjuvant chemo: 4X FEC and 4X taxotere. When we started the chemo, the docs told me that I might have surgery after 4 chemos or after 6. The issue was, basically, that if the tumor did not respond to the FEC, they would delay surgery to see if the taxotere might do something. Since the FEC worked, we did surgery and then the taxotere to "mop up." In other words, just because one chemo doesn't work doesn't mean another one won't.
In your friend's case, however, the mets appeared too fast to be the result of treatment failure. It sounds to me like she was stage 4 form the get-go, but that the doctors either didn't look for the bone mets or else the bone mets were too small at that point to be spotted. I have noticed in my BCO years that quite a lot of women do not get a full staging work-up before starting treatment, even when it is fully warranted, as in the case of a stage 3 DX.
Is her cancer lobular by any chance?
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Knmtwins:a CEA of 6 ison the borderline of normal to high,
(Normal ResultsThe normal range is 0 to 2.5 micrograms per liter (mcg/L). In smokers, the normal range is 0 to 5 mcg/L.
From <http://www.nlm.nih.gov/medlineplus/ency/article/003574.htm> )
If the CEA were notably high, defined as over 20, AND symptoms are present, then the presence of cancer can be assumed.
(Grossly elevated carcinoembryonic antigen (CEA) concentrations (>20 ng/mL) in a patient with compatible symptoms are strongly suggestive of the presence of cancer and also suggest metastasis.From http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8521> )
Some details about CEA testing:
Cautions
The concentration of carcinoembryonic antigen (CEA) in serum should not be used to screen asymptomatic individuals for neoplastic disease, and the diagnostic efficacy of CEA measurements in high-risk groups has not been established.
Single values of CEA are less informative than changes assessed over time.
CEA values are method-dependent; therefore, the same method should be used to serially monitor patients.
Do not interpret serum CEA levels as absolute evidence of the presence or the absence of malignant disease. Use serum CEA in conjunction with information from the clinical evaluation of the patient and other diagnostic procedures.
Some patients who have been exposed to animal antigens, either in the environment or as part of treatment or imaging procedures, may have circulating antianimal antibodies present. These antibodies may interfere with the assay reagents to produce unreliable results.
From <http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8521>
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Midgiemoon:
I can identify with your post. My diagnosis started last August. I started with a double lumpectomy and ended with a double mastectomy, even though my cancer was early stage. I am blessed with a medical team that I trust absolutely, which really helps. I did have to fire my general physician who seemed to take everything as a death sentence. At this point I think we've done what we can do to prevent recurrence, I'm adjusting to body image changes, and doing whatever I can to maintain a healthy and balanced lifestyle. Please reach out if I can help.0 -
Hey there middies,
Sounds like multiple episodes of binge watching "As The World Spins". Thank you for the fantastic information. I was a good girl and got my CA 27-29 & CA15-3 blood draws this past week. At least now I'll have context for numerical values.
On another topic... I did a typical dunderhead Deborah move. Decided to do some home improvement on my own while DH was out of town. Oh was I ever proud. I used a miter box for the first time to angle cut a baseboard. Too bad I didn't Youtube it first. Uh oh. His pretty yellow miterbox is a tad cut up. I wonder how long it'll take him to notice that. But, I did get the job done. Unfortunately, I overestimated my reach of my long monkey arms while standing on the kitchen counter reaching above my head to take down filthy curtains to be washed. I fell. I hit the granite counter on the way down and was literally stunned when I hit the floor. That was a slow motion video on my brain screen while falling. I didn't hit my head. Too bad. It might have knocked some sense into me. I have numerous poster child worthy black and blue/purple marks. They're okay, but I hurt my upper back. I don't have back problems. I'm hoping its muscular. It sends a shooting pain if I move in a certain way and I literally gasp and freeze. Guess it's time to make a doc appt. since it's not improving. What a DOLT!!!! I was proud of myself- liberated and all. Oh boy, hubby gone and he left his tools. Crow bars, miter boxes, saws, Oh my. What fun! I require constant supervision.
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Deborah, Your post had me laughing (and thinking this sounds like something I would do), until I got to the part about you falling and hitting the granite (then I knew it was something I would do). But seriously, take it easy and get to a doctor. Extreme pain is never a good thing. It may just take time and rest... muscle relaxers..
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YIKES! I do hope you feel better, and that you did no lasting damage to your back, but the bruises might get really colorful! Good job on daring to use man tools. (kidding about man tools, I use them quite a bit myself). Mitering corners is not the easiest thing sometimes!
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Boo to you, Ms. POPPYK!!! Your personality is as bright as the flower you call yourself! (I got to meet her at Slowdeepbreathes house, and off we went to meet the ladies in San Diego!)
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Tomboy, I'm so glad I got to meet you live and in person, too!
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DEborah,, hope you feel better soon. YIKES! Sounds like quite a fall.How cool that some of you got to meet up! NICE!!!
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Deborah--OUCH!Glad you didn't hit or head, and hope the back pain is all muscular (it sounds like it is, sounds like you move just right and one of the upper back muscles goes into spasm, not an unusual thing to have happen after a fall like that).Nothing like a woman with power tools!
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Deb2012,
"No good deed goes unpunished"
Oscar Wilde said that (although back then I doubt it was at his wedding.)
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Deborah, how are you feeling today? Hope you are doing better!!0 -
I'm baaaaaaaaaaaaacccccccccccckkkkkkkkkk! would someone give me cliff notes? I see we only need 10 more pages to hit 1000 pages before our 6th year anniversary. 6 weeks to type 10 pages. Cmon middies. we can do it.
Moved into rental, got job, worked 1 week, gave notice, worked 1 more week, now 2 weeks off while I wait for the job I really wanted to put me the payroll. I just need to pass a vision and a hearing test--hope that's a piece of cake!
Robert Plant was fabulous!!
Eph
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Hi glennie19, Thanks for the good wishes. I have re-discovered the magnificence of Ibuprofen. Yes, I am doing the "I could've had a V8 self-smack to the forehead. It doesn't make the pain disappear completely, but is a marked improvement. I got good sleep and rest.
Elimar, I always wondered to whom that saying was attributed. I have enjoyed some of Isaac Asimov's quotes: "If knowledge can create problems, it is not through ignorance that we can solve them." ; "Never let your sense of morals get in the way of doing what's right.";
Maybe to give Eph a boost, when we post we can add an optional quote we like or a joke to fill up space?
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Darn, I changed from Aromasin back to Arimidex because of bad headaches. I have put on 8 kilos in 8 weeks
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Eph--holy moly, you have been BUSY!!!!!I can't see you not passing the vision and hearing tests.New job, new digs, WTG, lady!
Kyliet--Hope the arimidex treats you more kindly than the aromasin.Are you getting close to the end of the 5 year of hormonal therapy?My last year or so was the worst, buta few months after getting done I felt a lot more like my pre-treatment self again.It will get better once that part is done!
When a man tells you that he got rich through hard work, ask him: 'Whose?'
Don Marquis (1878 - 1937)
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Nativemainer, nope I am not even up to 3 years and have been told I get to do 10, yay.... only do zoladex for 5 though.
Eph I hope your tests go well.
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Eph!! Welcome back!! You have been busy. In your pocket for the vision and hearing test! You can do it!! Glad to hear you had a blast at Robert Plant.Great quotes!
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Kyliet--oops, I guess I'm behind the times.I knew there was research on 10 years vs 5 years of hormonal therapy, didn't know it was now the standard of care.I would not have been able to deal with 10 years of hot flashes and joint aching and stiffness.You area lot stronger than me!
We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot.
Eleanor Roosevelt
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I am not sure 10 years IS the standard of care. I think they are only telling some women that, but i am surprised they are telling that to the lower stage peeps. They really don't have all the data on what 10 years does to your bones and brain and cholesterol etc. So they did just last visit, tell me 10 years too. But I don't think so. they really don't have much data on the negative events. i am always a little pissed off (if there is such a thing) when I tell one of my docs about one of my adverse events, and they say "oh we've never heard of THAT before"!!! That led me to surmise that they are severely under reporting just how often these incidences are had by us. Skewing the numbers and outright lying about these things, yeah, really makes me want to scream.
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Tomboy - Right On. SEVERELY under reporting is waaaaaay too mild. I live by one of the world's major medical centers and most docs here still have the same answer about lymphadema and neuropathy - "oh that really isn't an issue since it happens so rarely". BUNK!! I would have liked to have them acknowledge that neither of those issues are minor, and they do happen much more frequently than the medical community admits or reports. Think of all the women who don't do research and have no idea there are steps they can take - unfortunately not to reverse or cure these issue once you're got them, but to learn & treat.
BTW - I received a bunch of paperwork from UCLA school of Public Health to participate in a study about how docs are reporting things. It didn't appear that I met the criteria at first look so I shredded them, but I got a call yesterday that they've expanded some of the parameters. Apparently they didn't get enough responses. I agreed to take another look. The study is apparently being conducted in California & Texas. I'll report more later if this study addresses the the under-reporting issue.
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Minus, that's awesome. I would like to know more about that study. I am participating in the WHIP study, at least i think I am. I did fill out the first questionnaire part, and I did get the phone call, and they did even send me the transcript of the phone call. But I had thought that that was something that I was supposed to do twice a year, I could be wrong. It's a study about women and the persistence of hormonal treatment. But I haven't heard anything back from them in a long time, but I have there # somewhere, its being conducted at a university back east. But I would really like to be part of the study you talked about too. Hammy, I wonder why they didn't think you met the criteria at first, being as you are not the doctor who is under reporting!
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My computer is the one who said "hammy", not me. I said 'Hmmmm'.
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