MIDDLE-AGED WOMEN 40-60ish
Comments
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Diana, are you limited to quality oncs in your area? I realize you need a break, but maybe you could scope out oncs in your area? Perhaps if you could switch, you could at least have an appt set up with a fresh, new doc once you get back from vaca.
Eli, I also like your suggestion! Again, that way at least something proactive would be going on in the not too distant future.
And Eli, I am soooo glad you're finally starting to feel better, even if it's because of drugs right now
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Diana - I too think that perhaps a new onc might be in order. I also deal with my family dr a great deal. She has ordered many a test/scan for me.
Eli - good to know that the drugs are helping you to feel better.0 -
Dianarose, just a suggestion...Can you find a female Oncologist? I find that for some crazy reason women are so much more understanding about BC than men are! Just my opinion based on my experience!
((((hugs)))))
Mena
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Dianarose - I'm with Elimar. Your onc confuses me about the idea of no more tests or blood work. I disagree completely with that thinking. My MO sees me every 3 months and does tumor markers each time. I'm glad for that, if for nothing else it establishes a pattern to see if they're reliable for me or not. And like Marlegal said, make an appt with a new one (mine's a female, too) before your vacation and come back and hear a new perspective. I'm mad at yours! You've completed chemo and surgery - you damn well should have a bounce in your step. Go back to being your regular happy self - forget about him!
Elimar - glad to see you out and about! I saw that picture on top and thought I hope you don't feel like that. Although it does resemble me after a few drinks and I'm feeling good!
Just got a notice my dishwasher might catch on fire. If they only give me some $$ towards a new one I'll be mad because I don't need a new one other than THEIR problem. Of course, I don't want a fire so I'll be a couple of hundred out for another dishwasher. Crap.
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Diana, sorry about your onc. He does NOT sound like a keeper. My docs are not perfect and they annoy me aplenty, but they do blood every 3 months, with markers, and they do scans and generally try to stay on top of things.
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I don't think they have ever done a tumor marker test on me. Is it just a blood test? I have an appointment with my primary in a few weeks and will ask her about it.
Got up to -6 degree's and frozen water pipes. Not sure how to fix that problem today as I am off to work. I really need that vacation.
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Diana, yes, tumor markers are done with a blood test. My doc tests for 3 different ones. They are somewhat controversial, because you can get false positives and also false negatives. So they are not 100% reliable or anything near. However, for stage III, I think it fine to cover all bases with whatever we've got, even if it isn't perfect. Frequent scanning is also controversial, because it is nuclear. In the beginning I was all gung-ho for scans all the time, now I am not so sure. The scans are not super-accurate anyway. But the blood tests, both for markers and for things like liver function, calcium levels etc, just seem prudent to me and are minimally invasive.
They also say that it doesn't matter, in terms of survival, if you catch mets early. But, I have concerns other than simple survival and I tend to think that catching certain kinds of mets early may well improve QOL, even if it doesn't extend survival.
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DianeRose after reading your posts not getting regular blood work makes no sense.Even ,a yearly bones scan, should be ordered.I would discuss this with him and if he refuses then tell him you would like to switch doctors.If he. Thinks stage 4 is in your future then he should be right in its face.That is the way my MO is handling me.((hugs))good luck with your battle.
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Momine, I have heard that also, that early detection of mets does not increase overall survival; but then you hear that the meds have a better effect when the cancer is not as established (and the tumor load is not as great,) so I am not even sure how both can be true.
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E, that is what I find sort of confusing as well. But my thinking is also that I would rather live whatever time I have with a small bone met that can be kept in check without bothering me a lot, than have to deal with extensive mets with pain, broken bones etc. But I grant you that my understanding of how this all works is very limited, and I sincerely hope it stays that way.
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Eli- glad you are feeling better.
On the MO ordering tests, I am Stage IIB and my MO will not do a PET scan, bone scan or tumor markers unless I have a pain or concern. When I told him after my last chemo that I do have lower back pain, both my MO and his nurse practitioner shrugged it off that I gained weight on chemo and since I was petite before chemo that had to be the reason. I think I will make an appointment with my GP and get her to order the scans.
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Butterfly, there is a good argument for avoiding scans as much as possible, because of the nuclear load.
However, it seems silly to me that they won't do markers.
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Dianarose, I agree a new Oncis in order, if nothign else you get an idea of what another has to say. I am Stage 1 and get bone scans yearly, blood work once a year, mammo once a year or lately more due to infections and lumps but my Onc seems very aggresive looking at things. Last year I said I had lots of cramps and leg pain and was sent immeditaly for a scan of my legs to make sure there were no clots, so my thought is different Doc means different ways of handling things. We all know that a lot of the cancer is a mind game but our minds are what drives all else! I am also a thyroid cancer surviror and see and Endo, it depends on how ofter it was 6 months and now back to 3 months as levels are off but I get an US of my neck every year and she checks my bone scans and does blood work all the time but that is normal as my thyroid was comeptley removed a 2 years ago. Hope you are able to recover from your tests and enjoy a much desirved vaca!
El glad you are starting to feel better, have a snow day so working from home, sending you some home made spelt bread and tomato soup for my home canned tomatoes!!
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I am so far behind I think I have about 10 more pages to read. I have been so very busy at work and after work. I don't know if I am coming or going but at least my life seems to resemble my pre bc life which is a good thing. DH and I started up a new ministry and it is keeping me quiet busy. God has put some amazing people in our lives.
Eli from what I read you got back on your chemo and started back at rads but by now I think you must be finished with rads. Guess I'll come across that as I read. Even though I have been busy I have been thinking about you.
Walker (cuz) good to see you on the threads. You do need to take care of mind, body, spirit. Taking a break from work and doing temp might just be what you need
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Carollynn~ I to had thyroid cancer, DCIS, ovarian cancer, and just happened to dodge colon cancer. Had my BMX, and I refuse to take Arimidex due to SE's. I'm reading everyones posts, and saying, wow!! Are there tests'/scans that I should be getting?? I need input from ya'll......
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Well I am finally caught up on my reading.
Joan-what a scary chemo day you had so glad DH was with you
Dianarose-woohoo for finishing rads, I agree with the others get a 2nd opinion. My MO is more agressive with me. I have been having tumor markers every three months. Will be 6 months now. When I had the pancreatitis over Christmas he ordered CT scans of my chest and abdomen area just to be sure not mets. When my arthritis was so bad in my neck last year he did a MRI just to rule out mets.
Carollynn--woohoo on the B9 test
Heartnsould-glad the bone density was good but gee a long wait for the results
journey-sorry you are going through cancer again. I agree I HATE CANCER!
valjean-happy Belated birthday
Annemarie-congrats on getting your E-Day scheduled. Hope the wine was good
Eli-woohoo on finishing chemo and rads. This has been a tough journey for you. Rest and heal and get ready for that surgery.
DIL's mother just found out she has stage IV, TNBC. She also has parkinson's so they are only offering mild chemo just to give her more time as they put it. She has had two opinions. Her local MO and she also went to MDA Houston and they said the same thing. She is going to do BRCA testing as her sister died of BC as well. I pray for my DIL and for my three granddaughters that it is negative. They always say there is positive in the negative. So the positive in me having BC is that I have been able to help my DIL with info. I have done so much research that I have been able to share with her which has cut down alot of what she has had to researched. Just the fact that I have been through it all she has been leaning on me alot. Her mom is also wanting to protect her from her feelings so I have been very honest with DIL about what her mom is probably feeling and the fears she has and she says that has helped alot because so far her mom is kinda careful about talking about her fears.
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What kind of follow up is done seems to depend on the MO. Mine doesn't follow women with bc after estrogen blocking therapy is done. I asked the same question, if mets develop how will I know in time to do something useful about it? She said that regular scans only find mets a month or two before they start causing symptoms, so it isn't worth the chemical and radiation exposures of routine scanning. She also never did any blood work, except a TSH to determine if I was post menopausal or not. No CBCs, no liver function tests, nothing. I had to ask my PCP to monitor those for me. While I really don't want all those appointments in my life, I am not comfortable with getting cut loose like this either. But I've had to manage my own care from the very beginning, so I might as well keep doing it.
Elimar--early detection of mets does not extend overall survival, which is the gold standard for medical care. Early detection does increase the quality of life of that time, but medical research doesn’t use QOL as a measure because it is subjective, and not so easily rated and measured. Did you ever notice that the reports almost never say how long survival is extended by a particular chemo regimen or treatment? I dug into a lot of those studies and found out that they were talking about 2 months most of the time. My father went through a year of chemo for stomach cancer. It was "successful" because he lived 14 months after diagnosis instead of the expected 10-12. The fact that he was miserable most of that time is totally ignored. AND, my mom and dad were not told that is what "successful" treatment meant. Dad said he would not have done chemo if he knew it would only gain him a month or two. He would rather have been able to travel and do things. OK, sorry to get off on a rant.
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Mainer, I am sorry your dad went through that and that was what I was getting at too.
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Sherryc, I am sure you will be extremely helpful as a knowledgeable advocate for your DIL's mother's cancer care.
That's a reminder that even if we are lucky enough to put cancer into our own pasts, the odds that we will experience it again through a loved one is still fairly high. Just when you think you HATE cancer to the fullest, something comes along to make you hate it just a little bit MORE!
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Eli- I hope you are feeling much better.
When I went to the MO's on Wednesday he ordered an x-ray of my foot. He called me yesterday morning to tell me indeed there were broken bones. I guess I can't multi-task anymore. I was watching TV while getting up off the sofa. I am just a hot mess lately. He also said I missed the Metformin trial by one day and that it was now closed. When I went to my primary he had called her about it and she prescribed it for me. She said some of my blood work showed high sugar counts anyways so it might be a good idea. I went this morning and had more blood work. She straightened out my bones and wrapped my foot. Last night I just had a melt down. I haven't had one that bad in awhile. Today my eyes are puffy and hurt. I think I will try to avoid future melt downs.
Nativemainer- I don't know about you, but I am tired of the cold weather we are having in Maine right now. It is hard to be motivated to go out the door in the morning when it is -9 out. Try to stay warm.
Is anyone else on Metformin? If so, have you gained or lost weight?
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I am-and I've pretty much stayed the same since I've been on it (since before BC).
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Eph- I am glad to hear that. My muffin top is starting to look like a bundt cake. I gained 12 pounds with the chemo and it doesn't seem to want to leave even though I am not a big eater.
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Dianarose, It sounds as tho' the curse of the middle-aged belly fat is upon you. A plague unto us all!
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Eli, I can't believe you found that pic of us to put at the top. I admit to being the larger woman on far left, and that was a few pounds ago. I did so love those shoes
I wish you all a weekend free of problems or side effects to any extent possible.
Hugs buds.
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DianaRose--yeah, it's hard to get motivated to get out when it's as cold as it is right now. Fortunately this uber cold doesn't last very long, usually.
Having meltdowns isn't such a bad thing, really. We all need them from time to time to help get the stress hormones out of our system. The aftermath is kinda the pitts, though, I'll admit.
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Good morning, middies! I too had a meltdown of sorts yesterday. I went in for my infusion (#3) and my platelets were too low. How am I going to continue on this regimen when, after only 2 treatments, I have to skip one?? I should be having weekly infusions...my MO is out until Wed so I guess we'll discuss a (new?) plan on Friday. If it was my fate to have BC and OVCA, then let me continue with a treatment plan! Grrrrrr...
On scans and blood tests - after BC, my MO wasn't going to test anything until I had symptoms. When I had the ooph and cancer cells were found, my GO immediately ordered blood tests for 3 markers and a PET scan. Since then, I have talked my MO into tumor markers every 2 months.
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journey, Even tho' your interruption is with chemo, I will share what my RO said when I had to take a week off my rads and chemo (for my current non-B/C treatment.) He said, "We are trying to kill cancer, not you. Sometimes it is a delicate balance." I think that to step up and even DO these treatments we put our blinders on, or do a little self-hypnosis as we learn the mantra of of "it's doable" when in reality these treatments ARE harsh and having your RBC, WBC, platelets, etc. start to tank is a serious condition that we are somewhat desensitized to because it is happening to so many of us around here. LIKE IT IS NORMAL OR SOMETHING! Try not to freak about taking a break. I think a lot have to do it.
I was a little disturbed that taking a break would give cancer the upper hand, BUT the fact comes down to once you stray off the treatment path you have kind of left the realm of the known responses, but that is not to say that you cannot still have a VERY good response to treatment, it is just to say there have not been enough studied that have had your precise scedule of treatment/days off now. Some people are able to follow the treatment plan to the letter, but simply are not good responders to chemo (or whatever.) A lot of it will come down to individual response, maybe more so than day on/days off anyway.
In my own case, I deviated from the treatment plan, but think (based on symptoms disappearing) that I resonded well to the actual treatments. Whoever sticks around here for a couple months will get to learn whether I am right about that or not. Oooooh, isn't that a cliffhanger to keep you coming back? (Maybe I am just going on my own heightened suspense about that. Snick, snick!)
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Hey, guess what? I am going to learn Skype today. My son is going to study away in Greece for Spring semester, so that IS the coolest way to stay in touch, right? An old pink dog is going to learn a new trick.
And then I'll have a little accident on the carpet when I am done.
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Good marketing, Eli~.
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Eli - that helps alot. My thoughts have been that this damn cancer will win if I don't stick to the "plan." Thanks to you, I'll hike up the big girl panties and keep fighting. Looks like this journey will be a challenging one but a setback inspires a comeback! Here I come F'ING CANCER!!!
P.S. I'm going to share your post with my chemo nurse - she'll love what you said!
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