The internet makes it worse! Back pain
Three weeks ago the pain in my back started. I see my oncologist on the 28th so my plan was if it lasted until then, I would tell him. The pain has gotten worse although is not horrible. It's a constant aching/burning in my lower back, more on the left than the right. But, my thighs are now feeling weak. I have tingling in my fingertips and feet that is now starting to feel like stabbing. I've had some constipation. And suddenly, my tongue, which had recovered from dental nerve damage (dentist cut the lingual nerve) and also chemo, is now back to tasting like metal on the right side where the damage was. I'm sleepy all the time. My migraines had disappeared after chemo sent me into menopause, but I've had a couple come back. One time, my imitrex didn't get rid of the headache which has never happened before.
You know what I'm thinking. And, the internet has confirmed my fears: that all my symptoms are possible spine mets.
I hate the internet! You always can link your symptoms to something terrible!
But, there are logical reasons for these symptoms too:
I started a new job with an old chair, which could cause the lower back pain. I also have had this exander in for almost a year which means I've had to adjust my sleeping, etc. The tingling fingertips could be chemo-related neuropathy - it only went away for a month or so. Not sure what the weak thighs could be, delayed side effects from taxotere or taxol? My lack of exercise finally catching up to me after the past year of treatment? An unlisted tamoxifen SE? (I have a hard time explaining away that one.) The tongue? Well, nerves take a long tiime to regenerate and they do get better and worse and then better again. Constipation? Because my back hurts I've taken a couple more painkillers than normal. I've never had constipation-related SEs from painkillers before but things change.
So, do I push up my appointment to see the onc? If it's spinal mets, the sooner the better, right? I don't want to rearrange my work schedule for nothing and also, this is a new job, I can't start the cancer patient doctor rounds right now when they assumed I was healthy. I assume it can wait another week at least.
This is so frustrating, this worry. I'm not a worrier! I am only Stage II and still on herceptin and taking my tamoxifen faithfully. Odds are I'll end up marrying NED.
And, yet I'm worrying. I blame the internet. If I had not done that quick google I'd have had some low-level worry but waited to see my onc to tell him my SEs. Now I feel like i should get in there ASAP.
Is the internet turning me into a hypochondriac? Is it turning you into a hypochrondriac? Would you push up your appointment or just wait until regularly scheduled time.
Comments
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I'd wait. Something else might crop up in the mean-time. You already have the appointment, if you didn't you want to get one. 10 days isn't going to make a difference really....hmmm what other platitude can I spin you?
Seriously though, the time will give you a chance to really analyze what's going on and see if time of day, cycle, motion, etc causes things. You can chart it for your doc and look very organized. He can't argue with facts. -
cool breeze
i would bet money in my wallet that we can explain all of this away. First did you have scans at dx. Do you know you were NED at that time? If so it is highly and I mean highly unlikely that you would develop METS while on Herceptin with in such a short time of dx. I want you to know I am about a year and a half farther out than you but have gone through everything you describe. For example I had 2 incidents of back pain one in the lower sacrum area (while still on Herceptin) and one in shoulder area earlier this year. I was so afraid it was METS, yes the pain woke me up at night and yes it got worse over time and lasted over 2 months each time. In each instance I ended up having scans and both times NED. What I have come to realize in 2 1/2 years is that having a year of treatment and going into chemical menopause like we do at this young age causes our bodies many hardships I am still dealing with these today and I hate it. I just spoke to my Husband about it today and it depresses me. I feel subpar 2 1/2 years post dx.
The Good news is I worry less about mets because I am starting to understand my body and what it feels like in this menopausal situation and because of being her 2 and grade 3 they feel if I don't recur after 3 years we will re-look at estrogen therapy because they are starting to feel for us younger gals that were premenopausal we suffer and damage or bodies additionally by early menopause.
I also would go on the internet and scared myself to death almost any symptom can be tied back to cancer did you know that. Let me give you some examples of what I have seen in my own searches on the internet for weird symptoms I have had.
Back pain, shoulder pain, dizziness, off balance feeling, low white count, high liver enzymes, headaches, metallic taste in mouth, ear pain.
My most recent incident was a long standing ear infection with pain and yes you can even pull up tumors with this symptom.
take heart and know your chances of METS is low right now.
BE WELL
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Thanks MMM5, that does make me feel better.
No, I never have had any scans. My onc doesn't do them unless you are symptomatic. But, like I posted somewhere else - how the heck are you supposed to know when you are symptomatic? Since chemo and tamoxifen, I have never had a symptom-free moment.
I am not the same, healthy pain-free woman i was before I started this process and I guess I never will be again. I have every horrible SE that tamoxifen can bring. But, I have to say, the pain is not like normal menopause or no woman would ever stand for it. I know many older women who are in menopause, and who don't have these symptoms. I know women who have had complete hysterectomies who don't have this terrible joint pain and bone pain , so I'm not buying the line that it's menopause and it makes me mad when doctors say that.
I was kind of used to the regular pain and this is something new. So, I thought maybe it was different. The pain is constant so there isn't much to chart but I guess I can keep track of numbness and tingling and other symptoms.
But, it probably is innocuous. I know the odds are on my side, especially now. I'm only 6 months out of chemo and still doing herceptin, so it's likely nothing. I have to keep that in mind.
I think I need to not search for every symptom. Just see my doctor when he says to and let him decide.
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Here's a middle-of-the-road approach -- can you email your onc with your symptoms (briefly) so he/she will be on the alert when you go in on the 28th ? That way if there are tests to order they can be ready to think about it ... or ready to tell you why you shouldn't worry.
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Coolbreeze..
Mine turned out to be my new office chair. It scared me to death tho. Bone scan and CT negative. I am wishing the same for you.
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My onc doesn't do email although I like that idea. Considering how nervous we all get, I can understand the reasoning. :-)
I had a bad office chair at my last job too (replaced it before I left.) It caused pain in my upper shoulder area, not the low back.
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Step away from the keyboard! :-) Too much googling makes for much anxiety. Remember that lower back pain is one of the most common ailments among adults and tingling in the legs would be totally consistent with some sort of muscular-skeletal issue. Waiting until the 28th to see your doc will be okay in my opinion, but one idea is you could see your primary doctor sooner to see if he/she has anything to try for the pain (physical therapy, massage, acupuncture, etc, etc.)
I had back pain prior to my mets diagnosis. It was going on for a couple months before I saw my oncologist. I eventually ended up keeping a pain diary as Barbe1958 suggested. I think that helped to give my oncologist an idea of my symptoms based on facts rather than my fuzzy memory. I charted periodically throughout the day how my pain was using the 1 - 10 scale. I found that my pain was often worse in the middle of the night, I would wake up in agonizing pain to the point I couldn't lie on my right side. There was also times when I didn't have any pain for several hours, but most of the time it was there.
To your point about how are you supposed to know when you have symptoms, it seems like a lot of us stage 4 gals (myself included) were taken completely by surprise. I honestly didn't think my back pain was cancer (mmm...well that's not entirely true...I started suspecting it after a couple months, but truly thought there would be another explanation).
Anyway, good luck. Keep reminding yourself that not all pain is cancer.
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coolbreeze - I went through the same thing these past few months. I started having neck pain and pulsing, then ear pain, then dizziness, loss of balance, and then finally increased foot and leg tingling. I obsessively researched on the internet and was SURE it was a brain metastasis. When I went to my next scheduled oncologist appt, he seemed to think it possible as well after hearing the symptoms and ordered a brain MRI
Luckily it was all clear - but I do have a nodule on my thyroid which was biopsied and is benign. Now the funny thing is, after I got the all clear on the brain scan, the tingling and dizziness abated quite a bit (neck and ear pain still there though). Was it all in my head, did my severe worry and anxiety make it worse? Or are they thyroid symptoms? I don't know yet. But yes, the internet can make your mind travel down some very scary roads...As far as your appointment, if it's a few months down the road I'd push it up. If it's a few weeks, hang in there. Best to you!
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Coolbreeze, your onc certainly has a fax. type it up and fax it over with instructions you expect to discuss during your visit on the 28th. If they think there's something to worry about surely they will call to get you in sooner (or so we can hope!)
The internet can make you crazy. HUGS
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Patoo, you are adorable in your avatar.
Minxie, thank you for sharing your experience. And, the rest of you - it does help.
Nancy, you reminded me - you sound like me If you knew me, you'd know how silly I feel about worrying. I found the lump in my breast and didn't worry about it at all for a few months. I told people about it and they kept saying to get tested but I was 100% sure it was a cyst like all the others. I figured the fact that it was harder and caused some breast shape changes was due to age.
Then, suddenly the light went on and I knew I had cancer. Dr. Google confirmed and so did my subsequent real life doctors.
Now, while I'm mostly not worried as I go about my day-to-day live, I do have these occasional bouts of fear when I have a new situation As an example, I had a mammogram - my first after cancer on my remaining breast - and wasn't worried a bit. Was 100% sure it'd be fine. Unitl they called me back. Then, I jumped on the hamster worry wheel. And, it turned out to be fine.
But, y'all are very right. Low back pain is very common and I know that. The thigh weakness is almost surely from tamox.
I've turned from a person who ignored her health to the detriment - to a person worried about every pain. I try to complain at home cuz I don't want to worry the kids, so I come here to worry out loud.
I'm not even sure what I'm worried about. If I have mets, than I know I have no choice but to deal with it, just as I dealt with the dx, mastectomy, chemo, herceptin...not happily but something that needs to be handled.
I guess this worry will level out as I get farther down the road from treatment.
Anyway, I'll definitely tell my onc but I won't go in early.
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Hi CoolBreeze,
I would probably wait, although I know it is hard not to worry. I have a spondylarthropathy so have a fair bit (too much) experience with back pain. The only thing I can add to the good advice the other ladies have given you is a possible explanation for the thigh weakness. When you have pain in a joint (such as a facet joint in your lower back) your muscles often go into spasm as they tense up trying to support the joint. This can result in a bit of a domino effect where other muscles then go into spasm because other parts of your body are compensating for the muscels around the sore joint. When my lower back is really sore (like now!) I get muscle spasms in my thighs. At times this is painful, and at times it just feels like a weakness in that it is more difficult to climb up and down stairs or squat or whatever.
Obviously I don't know if you have mets or not but I think there are other more common explanations for some of your symptoms. So try not to worry. OK that was stupid, I take it back , BUT I don't think it would hurt to wait.
Good luck!!!
Sandy
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So, i went to work today and I didn't have to sit around all day and play online and think about my pains.
And,, I noticed how I was sitting on the chair, which is way too big for me. I was perched forward.
All day.
It's almost certainly the chair. Now I feel silly for even thinking about it.
I'm not sure I should even bother telling my doctor since he may want to scan me and I don't want to take the time. -
I, too, have had all kinds of pains (shoulder, neck, and now wicked bad sciatica) for the past 2 1/2 years since dx. I've been dealing with the sciatic pain the past two weeks with ibuprofin, PT, and chiro...then tonight when I got home from work I noticed that my breast (the cancer one) was hard and red...wonder what that's all about?
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Get it checked for mastitis. It could be LE as well, but it's too dangerous to self-diagnose.
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I'm back to being worried again. I changed out my chair and it hasn't helped and in fact, the pain has gotten worse. It's hard to sleep at night and get comfortable. Not that it was easy to sleep before! Oddly, the tingling in my fingers is gone and my thighs aren't weak right now but the pain in my side/back has increase. It radiates down to my butt.
Wednesday I'll tell my onc, and I'm guessing he'll order a scan or MRI or something. Back to the waiting game for me.
I never liked roller coasters of any kind. The cancer coaster is the worst.
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Aw Ann. Waiting sucks. (((HUGS)))) and B9 thoughts and prayers.
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Coolbreeze. Sorry to hear your pain is worse. I am glad you are raising the issue with your oncologist. I hope your concerns are put to rest with a B9 outcome. I am thinking of you.
Take care,
Sandy
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CB
I know you are concerned with this pain, I have been there, you will most likely have to get a scan of some sort and then you will have peace of mind. But I am sticking to my original statement, that it is highly improbable for you to have developed mets while still on Herceptin.
Good Luck to you, I hope you can find an answer quickly! I will bet my bottom dollar it is hormonal therapy related it is happening to all of us and it is very frustrating.
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Thanks all. See the onc tomorrow.
I don't know what it is but I know what it isn't - hormonal (or lack thereof) related. It's way too specific. I have all the bad tamoxifen SEs and have had them since the beginning: long bone pain, joint pain. This is quite different. It's been a dull, burning pain localized to my left side above the buttock and radiating down. It's gradually gotten worse since I first posted and today has been quite bad and is starting to throb. I'd lie down but that makes it worse so maybe I'll get in a hot tub - even though it's 107 outside.
It is very possible I herniated a disc or something. I'm not saying that it's mets - certainly, I agree it would be very rare to have it at this point. I'd by lying if I said I wasn't concerned about it, but logically I know it's unlikely. But I do know it's not tamoxifen.
I know now I'm going to need a scan. I wasn't sure before but now I know - pain is just too bad. I just don't have time for this kind of thing!!!!!
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And....I'm not worried again. Up down, up, down.
My doctor ordered a bone scan. But he said he can't remember a time when a cancer patient on adjuvent therapy relapsed. He has been an oncologist for 17 years. I'm not that special so I probably messed up my back at work or something.
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Wishing you all the best - (I think you just need to concentrate on what the onc said!).
Linda
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Ann - I, too, complained of back pain (actually sort of a chronic pain in my left shoulder blade) while I was doing Herceptin. My onc, also, told me that it would be VERY rare to have bone mets appear during Herceptin. I had a clean PET/CT 3 months after finishing Herceptin, so I guess he was right. Hope this holds true for you, too. Best wishes!
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Just wanted to chime in here that I have had increasing back pain, which I too, googled....my back pain (which does radiate into buttocks, down legs) has been going on almost since chemo started 1 1/2 years ago. It did get better for a bit, but the last few months increasingly worse. Bone scan, MRI, and Pet Scan all normal. ObGyn thinks it is endometriosis. Funny, never had these issues before...and am also getting migraine type headaches. I was in chemopause, but last March found my ovaries very upset and they haven't let me forget them since. The suggestion (with second/third opinions) is a complete hysterectomy.
Best wishes to you all!
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I thought I'd bump this thread to remind myself to finish it. I have stopped worrying it's bone mets entirely. The pain is still there but it now seems pretty clearly an organ inside me. Although I still have the left side, back pain radiating down my butt, I also now have tenderness on the lower left abdominal area if I touch it. So, I'm thinking maybe it's gynocological or something - maybe tamox related? I don't exactly know what is in that area. Ovary? Colon? It's pretty low, right above the crease where your leg meets your body. Maybe too low for ovary, guess I should brush up on my anatomy.
I had a bone scan Friday. I'll call my doctor tomorrow and get results but I fully expect no problems.
I'm bummed that I have to start a new diagnostic procedure though. I started a new job, as I said. They weren't expecting me to be cancer girl and have to take tons of time off, and that's not what I want to do.
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Coolbreeze
Did you receive the results today? How are you feeling. I have a very good feeling for you!
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CoolBreeze -
I recently went to a chiropractor for low back pain, weakness and numbness in my legs and back spasms. the chiro wouldn't treat me with my history of cancer until I saw a dr., so I went to my gp who did an MRI - I have a bulging disk. I wasn't worried when I went to see the chiropractor but after he advised me to see a dr, I did actually start to worry - my back pain was way worse in the mornings, I had no previous history of back pain - I prepared myself to get very bad news - but it was just a bad back! I think there are a lot of bad backs in the world, and I think the chemo and the other meds we are on, makes us all far more likely to have serious aches and pains. Also, I have lots of fibroids from the tamoxifen and I am convinced they are part of the cause of my back pain - my OB GYN said there are at least 10 of them flourishing in me, they certainly have to be pressing on things that shouldn't be pressed on.
Let us know what happens, I have seen and read a lot of your posts since you joined, and I really feel as if I know you - I hate to see you worrying.
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Thinking of you Coobbreeze and hoping all is well.
Linda
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Thanks ladies,
My scan was clean, which is good news. Unfortunately, I'm still having a lot of pain. I went to my primary care physician to get a flu shot and mentioned it to him. He also thought it was likely muscle/nerve and gave me some samples of a muscle relaxer called soma. I took them and they made me sleepy but didn't help. He also said he'd order an MRI and I said no. I was thinking, "Well, two doctors think it's nerve so maybe it's nerve."
I'm reconsidering though. I really don't think it's muscle or nerve. It really feels like an organ inside me. If I sit down hard now, I get a jolt of pain in my pelvic floor. I'm bloating up and that pain has not let up one bit. Something is going on, but I don't think it's cancer.
I also don't know how much energy I have for more diagnostic procedures. I think as long as I get paiin meds I'll just deal with it until I can't anymore. I have surgery in November and my herceptin is done in December. Maybe when all that is done I'll start feeling better.
Thanks for asking!
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Ann-
While I am sorry you are still having pain, I am very glad your scan was clear - Yeah, for that!
Linda
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Hi, Ann. I have a couple of thoughts for you, if you don't mind my two cents.
You have mentioned that your white/red cells haven't really normalized. And you have mentioned fatigue. Add the pain and the bloating to that, and you may have an infection seating in one or more of the glands or nodes in your abdomen/groin/pelvic region. I think that it's a mesentery gland that is located where you say the pain is localized; I had an infection (mesenteric adenitis; I'd never even heard of that) there about thirty five years ago and I was hospitalized for treatment because it went suddenly from irritating to acute and started to behave like atypical appendicitis. And, it could be that, too. Or an ovarian cyst. Or it could be a bulging disk in your back. Given problems with the TE's, too, you might have started brewing something that your body is trying to fight.
In any case, a jolt of pain when you sit is a pretty real symptom. That strikes me as something that could progress to acute. Infections these days can be so much more serious and while they don't focus on it, Herceptin does compromise your immune system. I've been fighting pseudomonas and staph throughout my Herceptin protocol, and Keflex is in my handbag at all times.
You don't sound so good; not your usual self (if you don't mind my saying so). Stuff like this can wear you down, but that's really a symptom, not an outcome. You feel that way because something isn't right. For me, that's the way infection behaves.
Warmly,
Cathy
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