The eternal question - how do you know?
Okay, I'm sure I'm fine. I'm still in treatment with herceptin, after all.
But, I've had a new pain out of many. It's in my left side and it's been hanging around for four days. I'll tell my onc if it's still there at my next apppointment (in three weeks) but I won't go in for it. I can't tell if it's hip bone or organ - it's just a very dull side ache that kind of radiates into the butt cheek. it'll probably go away soon.
But, it got me thinking.
How did you know you had mets? What were your symptoms? What made you go in to get checked?
am having SUCH a hard time with tamoxifen. My legs ache badly and feel heavy - I have trouble walking, and my knees are so stiff. Sometimes my feet swell if I walk too much so no more heels. I never had anything like this before and it started right after I started taking tamox, so I assume that's part of it and I''m one of the unlucky few that has a very bad reaction to it.
I'm also very tired. I still have an expander in and have a hot flash every 30 minutes, so needless to say, sleep isn't easy. However, I do sleep - every chance I get. I used to stay up until 11:00 and now I can barely make it past 8:00. I'm mildly anemic from the chemo but they can't find a reason why - just one of those things, I guess.
My bursts of energy are very few and very far between. it's hard to imagine I'll be like this for the 4 1/2 more years that I'll be taking tamoxiifen.
Again, I'm not worried about myself. I am only five months from chemo and still doing herceptin. But, for the future, I'd like to know what to watch for.
Because of the bad SEs, how will I even know if I do get mets? My doctor doesn't do scans, he says you have to be symptomatic first. Well, from my POV, I'm ALWAYS symptomatic, since pain is the signal and I'm rarely at under a 5 or 6. (I take six percocet a day which barely touches it)
What symptoms did you have that made you get checked for mets and did you have bad tamoxifen SEs? How was it different?
Comments
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I was diagnosed w/ mets & ibc at the same time. I had no idea. I did not even feel ill; I just had a red itchy breast.
Terri
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I was diagnosed w/ mets & ibc at the same time. I had no idea. I did not even feel ill; I just had a red itchy breast.
Terri
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My onc has the same laissez faire attitude about follow up testing. He feels that I have to present with symptoms before he will scan. My breast surgeon does not feel the same way and since he does not drop patients after surgery like most surgeons AND I can actually get in touch with him, if I really feel like I need to be scanned or at least get an ultrasound I will go see him. Like you, I don't tend to freak out about every ache or pain but the truth of the matter is that bone mets usually presents with pain. Tamox and the AI's can also cause pain. If a pain persists over a few weeks I would ask for a scan or some other type test. If only for piece of mind. You sound like you are having a hellride on Tamox...they need to get your pain under control for your QOL. 6 Percocet a day must be zapping your energy too. I am sure the wise ladies on here will give guidance that I can not. I just wanted to wish you well as you deal with all this.
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I was dx stage iv from the get go 2 years ago - lung mets. I didn't have any symptoms. Then last year brain mets were found during a baseline scan for a clinical trial - and again no symptoms. It may be a SE of the meds, but if this pain continues for 3 weeks then maybe you can get a scan just to make sure and help alleviate the worry. In addition to my (constant!) scans, they watch my blood work and tumor markers. If you met me, you'd never even know I had cancer.......unless you looked at my flat chest...LOL!!
I know this stuff is terrifying to say the least, but I hope your hip pain gets resolved :>
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Thanks everybody. I'm not exactly terrified as much as wanting to be proactive. I don't expect I'll get mets, but if I do, I don't want to ignore it, which would be my style. I tend to be the one that thinks, "Oh, it'll go away eventually." .
I attribute it all to tamoxifen and so am not sure when I'll know if it ever isn't tamoxifen.
it's funny but the only time I have any energy is when I take my percocet! I guess because I feel better. It doesn't last long though. I really hate tamoxifen. Horrible, horrible drug.
My onc will do tumor markers but not until I'm done with herceptin.
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I think the fact that you are taking 5 or 6 percocet a day is enough to demand scans. If your onc says you have to be syptomatic I would think that having pain that is bad enough to require that level of pain control qualifies. Don't assume that the pain is due to tamoxifen just because it started when you started it. It could be or it could be a red herring.
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To be fair, I'm a migraine sufferer and have been taking pain meds for many years so I'm somewhat habituated. So, for me 6 percocet is probably like one or two for most people.
The problem is it doesn't help. I've only been taking it two months. Norco helped my headaches for 20 years without ever needing to take more than I did the first time. This pain is really quite bad. At least migraines were intermittant this is contant and chronic.
Maybe I should request a scan but it seems so early. I've been very confident that I'd be done with all this and move on once treatment was over. To be left with a pain condition and this kind of debilitation is really disconcerting. I can go to work and do my job, and everybody tells me how good I look - but that's pretty much ALL I can do. They don't know that I'm smiling through the pain and then going home to lie in bed.
I wonder if this new pain is some sort of kidney thing? It feels in that area.
Oh well. I guess there is no point speculating. I've read around and it seems like it feels different for everybody. Nobody seems to have any real insight into when it's mets or what it isn't..
Maybe I just wanted toc complain.
I don't do that IRL much.
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I think you have a great attitude! It's best to check out everything and be proactive. Otherwise, stuff gets missed and it is definitely better to find out earlier than later. You know your body more than the docs so when you get a feeling go for it. They thought I didn't have lung mets....in fact they were 99.9% sure it was just a little benign nodule. I insisted on a lung biopsy and viola.....breast cancer. I had a feeling when even without any SE so I pushed. Hang in there sister!!
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Hi,
I'm sorry but I think your onc needs the boot! I first had mets in 2008 which was preceded by an unexplained cough for several weeks which then turned into "atypical" pneumonia (in the upper lobes, whereas typical pneumonia is usually in the lower lobes). I had heavy duty chemo (again) and then remained on Herceptin. During this time on herceptin, my cancer markers where tested every 6 weeks. Then, one day, while STILL ON HERCEPTIN, I had a horrible ache in my right side after a large meal. The pain lessened but never went away. The CT scan showed a huge liver tumor. My onc at the time, had decided not to scan me at 6 months after my last chemo because "I was doing so well" and my cancer markers were staying down. I often wish I had insisted on a scan at that time. Perhaps the liver tumor would not have gotten so big. I'm now on a T-DM1 trial. I know it is scary to "leave the nest" of your first onc. but sometimes it is necessary.
There are so many anti-hormonals now, why can't they try you on something else? You don't HAVE to do 5 years of Tamox. if you're not tolerating it. I had progression on Tamox, and then on Arimidex, and then on Faslodex, so I'm not on hormonals anymore.
I would seek out a good pain control doctor for the Percocet issue. They are terrific specialists.
To YOUR health! LOVE, Simba
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Thanks for the posts. I do like my onc and I know the treatment I've been getting is appropriate. I'm sure he'll do a scan if I explan the pain I've been having - he just doesn't do them routinely. It was worse today - getting worse not better. I don't see him for two weeks but if it doesn't get better I'll have to go in early.
I always assumed my diffuse hip and leg pain was from tamoxifen. I now have this side pain that is pretty bad and I know that's not from tamox.
He did suggest switching me on arimidex but he said it also had the same side effects. He also said I could get an ooph but i said no way. I sit next to a lady in the infusion room who takes arimidex, and she's having the same SEs as I am on tamox so I didn't see the point in switching. I was not menopausal when I got cancer so he wanted to keep me on tamox for two years if I could tolerate it.
At least he's giving me the painkillers - he doesn't give them to my infusion friend - don't know why.
In two weeks, if I'm still this uncomfortable, it'll be scan time I guess. It's hard for me to imagine that it could be mets, with me only five months out of chemo and still on herceptin. I just had a Zometa infusion a few months back too. But, I'm not happy right now - it's something.
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I was diagnosed with Stage IV mets to the bone a year after my second stage I IDC dx. The thing that got me in for scans was horrendous back pain that made me feel like I could hardly hold myself up. It was absolutely the worst pain I've ever felt and finally showed up on scans about a year after it started and was stage IV breast cancer mets to spine, ribs, and pelvis.
I just wanted to mention something about your leg problems on Tamoxifen-I think blood clots are a side effect of Tamoxifen. I don't know how high the risk is for them, but having swollen legs and feet isn't good. I understand your onc wanting you to stay on it for at least two years; just be really aware of your leg pain and swelling and let your doc/onc staff know if the swelling or pain gets out of control.
Hugs and peace!
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Hello, Coolbreeze, just wanted to chime in and express my sympathies vis-a--vis the Tamoxifen. Horrendous drug! I have been on and off it for about 16 months because I cannot tolerate the side effects: in my case, fatigue and laziness, which to me are the worst. I am very close to preferring death. I don't want to live unless I can really be alive. I know others may disagree. Luckily I haven't had pain.
Some women on this board have said that their Tamoxifen pain can partly be controlled with exercise. I do exercise a lot, so I am wondering if that has any say....Your pain may also be from the cumulative effect of chemo, radiation and Tamoxifen? I hate it when they give us drugs and then give us blank stares or unsatisfactory solutions when we ask for relief. IMO, an ooph is NOT a solution. Have you tried consulting a pain specialist? He or she may be more knowledgeable than an onc. about the genesis of your pain - and here I mean not the pain that is worrying you, but the other one - the one you have been taking Percocet for.
I hope you get some answers soon - you are in my thoughts!
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Hi, Ann. I don't know much about this, but I remember when my mom had bone mets to her ribs. She said that she "knew" what it was on a level that she couldn't describe. It was constant, not variable with position or time of day or night. Insistent, was the word I think she used. But I've seen other women here describe things differently, so there you go.
For me; I ended chemo and started Arimidex, and for a few months I told my doctors that I felt better than I had before the cancer. Then the Arimidex kicked in and the next year was hell--a lot of the things you describe: fatigue, weird pains, lots of tingling. I was switched to Femara, and the symptoms are nearly gone and I'm better every day. (If you can take Armidex, you can take Femara; interestingly some women find the Femara has more side effects than Arimidex. We apparently are all different.)
I also started yoga once a week and it helps make the tingling go away. Mine was nerve damage from Taxol and in my hands and feet. And, having done two years of Herceptin (had the LAST ONE on Friday, Yay) I think it's fair to say there are side effects to the Herceptin that seem to advance slowly, but they are there, and I found them to be cumulative. I'm hoping to see some fingernails and eyelashes soon.
On the "how do you know?" note, this has troubled me a lot. You know I had an atypical cancer-soup like melange of a tumor, and I fear that my probably-all-gone-but-then-again cells will not behave well if left alone. I've asked my doc if I can get into the neratinib trial, because whether I get the neratinib or the placebo, what I will get is a level of vigilance that my insurance companies (and I have a good one with two back-ups) would never pay for in a million years. Scans. Tests. Regular attentive visits.
My doctor only does tumor markers, and has said that the more likely effect is false positive, not false negative. But with an atypical tumor, that isn't reassuring. The neratiinib trial in my community comes with a genetic testing component also, which includes a lot of tissue testing that was never done in my original diagnosis--I presented with a lymph node, so the prescriptive protocol was clear.
Not sure if this helps you. I think your pain is probably postural and chair or activity related, and the tingling upward and downward that comes along can be nerve compression due to a bulging disc. I'd move the appointment up and ask for an orthopedic referral, because if those nerves die, you will have lots of problems down the road. Happened to me many years ago (when I was a young 'un like you), and the road back is long and uncomfortable.
Warmly,
Cathy
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I hope your pain is not mets but trust your gut and if you think you need scanned, insist that they order it. Not to scare you but ....... I was 2 months post chemo and still on Herceptin and in the middle of 30 radiation treatments for my initial dx of IDC when I first suspected I had IBC. All my doctors assured me the rash and swelling in my breast must be side effects of radiation since I was so burned and blistered. But the burns and blisters got better but the rash did not. They still all (medical onc., radiation onc., surgeon) all said no way could it be IBC because I had taken so much chemo (AC, Taxol and was still on Herceptin) and was in the middle of radiation. I had been doing a lot of reading and i told them it was IBC. They finally did a biopsy, and I was right. I did have IBC.
Trust your gut and be your own advocate. I hope things go well for you.
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Thanks for all your replies.
I'm leaning towards thinking it's postural as Cathy said. I started a new job about three weeks before the pain started and then one day I realize the chair was too big for me - I wasn't leaning back. I found a new chair but no change to the pain yet. It's a pretty constant lower back/side ache but now I do think it's probably related to my work chair and I'm no longer worried.
I'll mention it to the doctor but if he doesn't want to scan it I'm cool with that.
As for the tamox - all good suggestions. I HATE what this drug is doing to me. Yes, they recommend exercise but how the hell are you supposed to be able to move when your joints are falling apart? And, it's progressing too - it was just in my knees and my hips,and lately it's in my wrists. My ooncologist promises me this joint pain is not permanent. That's hard to believe the way it feels.
I miss being able to sit on one knee. That's the way I sit at home! Not now,, or I can't get up again.
But, I don't want too turn this into the "bottle of tamoxifen" thread. I do thank you for sharing your thoughts. And, Faith, that must have been a kick in the gut to get that dx so soon after treatment!
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