Joining the club - is my back pain/sciatica bone mets?

beeline

I am just over 2 years out from stage 3C diagnosis. I had the whole shebang -- chemo, rads, tamox and now AI and zometa. A few months ago I started having pain down my right leg and some numbness as well. Fast forward to a couple of weeks ago and it has become excruciating. I have been doing gentle yoga, heat, NSAIDs, but nothing helps and nothing touches the pain which is day and night. So after putting it off for as long as possible, I have finally put a call in to see if I can get a bone scan or other testing. Just reaching out for support and any positive stories of back pain/sciatica that ended up not being a recurrence!

pupmom

Make sure they give you a hip x-ray. I had the same excruciating pain after bc treatment. Everyone thought it was my spine (not related to cancer). I had spinal surgery, and it did not help. FINALLY, one doc, a rheumatologist, noticed on exam that I could not move my hips, and ordered this very simple x-ray. Turns out I had complete necrosis of my upper femurs. Two hip replacements later and I was fine. Best wishes!

beeline

Thanks pupmom! So glad to hear it was not cancer and that there was a good solution for you! I see my GP tomorrow and will make sure to ask for an xray.

spookiesmom

I’ve had lower back pain for years. I knew L5S1 was shot. Pain got worse, going down legs. Went for mri. Turned out to be a bunch of stuff wrong, but NOT cancer.

sunshine99

Beeline, I started having some pretty severe hip pain last September/October. I finally went and saw my PCP and she ordered a hip X-ray. To me, it felt like my hip was fractured (although I've never had a hip fracture). The X-ray showed no fracture, just a bit of scoliosis, which I already knew about. The hip pain never improved, so I just lived with it.

Fast forward about five months, to a lump leading to a biopsy, which led to a finding of mets in my hip, spine and ribs. I debated even writing this, but I would like to say that if your hip pain is not getting better, I'd recommend getting it thoroughly checked out. It was the nuclear med scan that showed the mets in the bones.

Palliative radiation did wonders for the pain in my hip. I'd suggest that you give your MO a call and talk to her about your pain.

Please let us know the outcome. I wish you the very best!

Carol

beeline

Thank you so much, Carol. I appreciate hearing your story. I find it hard to know when I am overreacting since my cancer diagnosis.... in the past I would just carry on through the pain. I hope you have a treatment that is working well for you!

sunshine99

Thanks, Beeline. As I said, I really didn't want to worry you, but I wouldn't like to see your pain continue when there could be a solution for you.

I'm being followed by a team of Medical, Orthopedic and Radiation Oncologists and I'm happy with my care. I also have a wonderful PCP.

Good luck with your appointment tomorrow. (((hugs)))

Carol

beeline

I'm so glad to hear that you have a great team! I have just sent an email to my MO who is great -- figure I'll hit it from all angles! Hugs right back to you. I will keep you posted.

spookiesmom - thanks for sharing your story! I'm sorry to see that you had a recurrence anyway, even though not in your back.

nancyhb

beeline, sorry for your worries. Aches and pains send us to the darkest places, don’t they? I’ve had - and am still struggling with - sciatica and piriformis syndrome. My bone mets (stable for now) are in my ribs and sternum, but I’ve had pain in my left hip/leg for the last six months that sent me over the edge and ultimately landed me in bed for a couple of days, unable to move (and absolutely terrified that I had progressed). I’m an established practicing yogi and runner, so when this started I tried all my stretching and pose tricks - none of them worked. I tried massage therapy - helped for a day but then back again even worse. My PA did an X-ray which showed nothing so he prescribed a muscle relaxant. I have nerves trapped in my glut that are causing not just pain but numbness and weakness down my leg. A couple of days later I started to feel better. I’m still struggling with pain and tightness but I am less concerned about progression than I had been before. I hope you find your pain is truly related to sciatica or something similar; while not fun, it can be manageable. Will be thinking good thoughts for you

beeline

Hi Nancy, I am also a regular yogi and runner, and have had hip issues related to running before. I hope your pain and tightness goes away and is not related to progression, and mine, too! Thank you for your good thoughts!

mountainmia

beeline, when my sister (she's 66) has hip pain with running, she gets new shoes, and that takes care of the problem. Take a look at your shoes, too! Could be super simple, who knows?

laughinggull

Hi beeline,

Similar to you, I am three years out of diagnosis, stage IIB with a very aggressive cancer that had reached my lymph nodes and looked bad in pathology. I recently had an elevated, out-of-range liver enzyme in my labs that could be a sign of bone mets (it has been in the upper side of normal range for a while, occasionally out of range), and pain in my tailbone (I also run); my MO said to wait and see if the labs improved on their own after four months, and if they didn't, proceed with a scan. Instead, I decided that, if I had bone mets, I'd rather know asap. Why wait? I was going to be worried those four months anyway. I got a bone scan, which came out clear, which is a relative relief -still no explanation of why those numbers have been consistently on the high side. I may still have early mets not detected by the scan. I learned that my fear runs deep, but also that I prefer to face head on whatever comes my way.

You did the right thing putting that call on. Can it be a bone met? Maybe. But an early bone met can be treated right away, and you can be stable for years, and you will be the same person you are now. You will still have to make breakfast tomorrow. You can face this. Don't be afraid. Easier said than done, I know.

To the ladies with bone mets, best of luck; any of us is one phone call away from being on your shoes. When the thoughts of bone mets come, I try to tell myself that if they come, I will be able to cope and find strength somehow, like you ladies do. This calms my fears better than thinking that I lucked out, and I am magically on the other side of the glass, where people live worriless until their 90s. It's all an illusion anyway. Life is full of uncertainty.

Best of luck to all,

LaughingGull

beeline

Hi LaughingGull, I'm sorry you still don't have answers for your elevated liver enzymes, but relieved that the bone scan came out clear. Like you, I would rather face whatever it might be straight on, I just have to fight my natural inclination to deny any weakness or pain! I saw my GP today and have x-rays booked for first thing in the morning. No matter what the outcome of those, I am going to push for a bone scan with my MO. I actually feel less anxious just for having taken action instead of sitting here, scared and in pain, and trying to will it away.

I wish there was such thing as the magical other side of the glass where we live into our 90s and never worry! I would love to meet you all there!

sunshine99

Beeline, I just wanted to say that I like your profile picture with the lake (?) in the background. It looks very peaceful.

I lived in Maine for a couple of years. What I'd call a "lake", they called a "pond". "Rivers" were "streams". Beautiful, either way. Don't want to offend anyone by mis-categorizing something! haha

beeline

Thanks Sunshine99, that's a little bit of the Pacific Ocean during a trip we took mid-chemo to do some memory making How funny about the different names in Maine!

I had x-rays Friday and got results back with nothing unusual, some degeneration, but nothing that would explain the ongoing pain. From all the advice here, I will push with my MO for a bone scan to hopefully rule out mets or at least know for sure!

MountainMia - good call about the shoes, thank you! I have been sidelined from running for over a month, but my shoes are pretty ancient and I hadn't thought of it! I will definitely get new ones when (fingers crossed) I can get back out running again.

beeline

Just an update that my specialist has ordered a bone scan and CT, waiting to find out when. It is what I wanted, but it almost makes me more anxious that they're taking it seriously. It would have been reassuring somehow if they'd blown it off as no big deal (though also frustrating to no end).

pupmom

Beeline, I believe it's better to know, although I do understand the dread. I've had many scans and so far so good. Hopefully, yours will show only benign stuff, if anything.

lulu44

Hi, just to add my experience- chemo caused me to go into menopause (before I got my ovaries out or started my AI) and I ended up not knowing that I had a couple of stress fractures in my pelvis from jogging. All of a sudden I had this horrible pain and it wouldn’t go away. X-ray showed nothing- they were detected on MRI and i got a dexa scan that revealed osteopenia. No mets seen on 1st MRI or follow up MRI post healing. So it could always end up being something like that. I was scared though. As breast cancer patients/ survivors, we have every reason to be suspicious of musculoskeletal pain, new onset shortness of breath, cough lasting longer than 2 weeks, new onset headaches or dizziness, loss of balance, any lump we come across, new onset abdominal or pelvic pain, etc.. we shouldn’t be hard on ourselves or consider ourselves paranoid because unfortunately this shit can and does recur & spread, even if the tumor was small and the nodes were negative. We have to be our own advocates because some doctors see a woman and immediately have the impression that we are overly dramatic, it’s often an implicit bias that they don’t even realize they have, we all have it to some extent. Anyway that’s a whole other topic lol. Best of luck, hopefully it’s not serious and you are out of pain soon.

francesca30

Hi Beeline!

I’ve had lower back pain for quite some time already. I just had the biggest scare when a small portion of my spine lit up during a recent petct scan. Thank God it turned out to be degenerative (bones) caused by Femara and no cancer seen in my MRI. Sending you prayers for favorable results

beeline

Thank you Francesca30 and Lulu44! I go back and forth being sure I have mets and being sure I don't! I think bone degeneration or stress fractures are totally possible. I didn't realise femara could cause damage that fast, though! Are you on bisphosphonates? I just started 6-monthly zometa injections in July. Probably not enough time for it to help reverse any degeneration yet.

Lulu44, to your point about implicit bias -- I completely agree with this and have definitely internalized it. My (now former) GP blew me off about my lump and peri-menopausal symptoms because I was "too young." She told me it was probably "just stress" when in fact it was stage 3 BC!! Even before that I couldn't help questioning myself, is it really that bad, maybe just wait and see if it gets better... it's hard to advocate for yourself, but once we've been diagnosed I think it is a requirement if we want to stay alive!

francesca30

@beeline I’ve only been on femara alone for a year and have developed osteopenia. I’m 40.Will be meeting my onco next week to discuss prolia/boniva/zometa.

mudstick

Sorry you are going through this Beeline. I hope your imaging gets scheduled ASAP and you get some answers.

I'm totally relating to your comment - "I go back and forth being sure I have mets and being sure I don't!"

I just finished Chemo (TC) in June and Rads in September this year, for a local recurrence. I was initially diagnosed in 2018 and had a mastectomy and recon on the right side for IDC/DCIS (see my signature for more info).

I had an acute onset low back pain in mid-august, where no pain meds touched it....ibuprofen, Tylenol or even tramadol that I had left over from my DIEP in 2018. The sharp, excruciating and breath taking pain in my lower back resolved after about 5 days. However, the pain didn't fully resolve and I continued to have a sore lower back, SI joints and bruised feeling in my tail bone. I started to see a Chiro September for active release, TENS and additional glute/ab strengthening exercises.

We both felt things (pain and movement) were initially getting better. However, since Mid-October, I've plateaued. Pain is still there, usually only when I move a certain way or sit too long. Although I can feel it at night and I'm not sleeping as well as usual, I wouldn't say its particularly worse overnight....I think part of the sleep issue is that I started Zoladex and Femara in mid-October as well. I was put in chemo-pause, but wonder if the meds are contributing to the sleeping issues more than the back pain.

Chiro sent me for spinal rads because he will usually see young(ish) and fit patients (I'm 45 and active in sports and fitness) get better and resolve by this time. I also started to see a physiotherapist and started massage therapy. No relief yet.

X-rays done and reported last week. Degenerative changes in line with OA in several parts of my spine (cervical, lower thoracic, SI joints, Low lumbar), but nothing "aggressive" seen. The thoracic site is a bit concerning to me as I started to have a new pain there in September (when I lean back and to the left there is a sharp pain beside my shoulder blade) and my bone scan in March didn't highlight anything in that area. Some of the other areas showed what likely are some of the degenerative changes.

I have a call with my MO today and will discuss further and request additional imaging, just to make sure there isn't anything sinister. I hope he doesn't resist....

Anyway - sorry for the long post and hijack. I just wanted to chime in and commiserate with your situation. This is such a sucky, horrible disease. Although I'm still fairly upbeat and feeling overall "OK", I'm tired of the emotional toll and the effects it causes not just on me, but by family and everyone else dealing with all these repeated scares or even just the weight of fear you carry with you.

Thinking of you and wishing you all the best.

laughinggull

Hi mudstick,

The scares can take you right back to where you were at diagnosis. I was surprised by the intensity of the terror when I got my bone scan recently. And as beeline says, you go from "I wont relent till I get that scan, for peace of mind" to feeling horrified that they actually approved and scheduled that scan, instead of blowing it off, because that means they take the symptom seriously, and maybe you have mets. And wait till you get to the bone scan place, and the person asks you "why did your oncologist order this scan?" and you have to say "suspected bone mets" and they look at you somberly and say "good luck".

There has to be some therapy or technique to go through this. Because this type of scares will happen now and then

How do people cope?

Best,

LaughingGull

newnorm

LaughingGull I like your philosophy. Great words of wisdom. Thanks for posting.

mudstick

Thanks LaughingGull !

That is such an accurate description! I guess I now get to deal with that horrified feeling of them taking me seriously! My MO wants to schedule a bone scan and compare it to the one I had done in March.

Yay! AND Yuck!

I'll let you know if they ask me why the doc ordered the test and report on their reaction :-)

alicebastable

I call it Schrödinger's recurrence or mets, that time of waiting to find out, when your brain and emotions go both directions simultaneously. Just as we all went through Schrõdinger's cancer in the first place, the time between having a mammogram or finding a lump, and finally getting the diagnosis.

beeline

Mudstick, I'm so sorry you're going through this, too! My MO clearly didn't like the sound of my pain and how it came on, so yep, I'm horrified that it's being taken seriously! I have a bone scan scheduled for Friday and there's a questionnaire with it that asks why it's been ordered.... let us know when yours is.

Alice, I quite like the idea of Schrodinger's mets, except that so long as I don't open the box I both have and don't have mets. I would rather just not have them

On a different note, has anyone else not involved their partner during this process? I mentioned sort of vaguely in passing that the pain would probably need to be looked into as a possible recurrence, but have otherwise kept my worries to myself. I just feel like there's no point in 2 of us being sleepless with anxiety... or is it not fair to include him? It's all so hard!

moth

I told my dh & my kids & my friends.... heck, I probably told a few almost strangers who no doubt rolled their eyes about "moth, the overshearer" lol. I've always been open about my cancer & what it's like, including the emotional toll of worrying; and I strongly believe in sharing the burdens of life.

beeline

"I strongly believe in sharing the burdens of life" - I love this philosophy, Moth!

laughinggull

I also believe in sharing the burdens, and in letting people know when you are going to need some slack. I told my husband that I was agonizing about the scan and he was helpful and reassuring.

Thanks Newtom. Appreciated.

Beeline, I was also asked to write the reason for the scan in the paperwork, besides explaining personally to the person doing the scan; what you feel like saying is "Nothing at all! No worries or suspicions whatsoever! This is just for peace of mind, out of an over-abundance of caution. Thanks for asking, though, and good luck with the real cancer patients". These are tricks your scared mind plays on you. Take a deep breath and fill the form up. It's just a harmless piece of paper. Doesn't mean anything.

The reality is, we are cancer people. There will be mets scares along the way, and, for some, mets. It's tough. Let's support each other. We can do this.

GoKale4320

Beeline- maybe it’s a pinched nerve? Sending you positive thoughts for a simple fix.