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Scared of bone mets and so tired of being worried

Dear friends

Last time time I was on here was four years ago when I had an awful cancer scare. I was in panic mode but thankfully it turned out to be nothing. This forum and all the support I got here was so comforting. And now I am back, scared once again and in full blown panic.

I was diagnosed with bc in 2011 so it's nearly ten years. January this year I was diagnosed with osteoporosis of the spine. I slipped on ice and broke my wrist, that's how it was discovered. Nothing happened to my back then.

I have also been feeling a little tired in my lower back and contributed that to sitting bad on a wooden chair, working from home during the pandemic. Also no gym activities for a looong time because of COVID restrictions, basically just long walks. So, I started going to a physiotherapist specialised in osteoporosis. I started a new work out program and it actually included deadlift. I am pretty experienced at lifting heavy weights and my physiotherapist reassured me it should be safe. However, after doing a deadlift it didn't feel right in my lower back and here's where the trouble started. I woke up the next morning with pretty severe pain. It got better with movement so I went out for long walks, 15 000-20 000 steps the following days. The pain calmed down but was still bad in the morning. My physiotherapist is absolutely sure I have overworked my muscles especially piriformis and that I did put too much strain on my lower back and glutes.

However, it's been almost 8 weeks and it's still there, that pain and stiffness. Sometimes better, but the pain when I get out of bed in the morning is always bad. It gets better with stretching and working with a massage ball on my trigger points on my glutes.

Last week it just all came down to me that there is no way around my oncologist now. I called her and begged for a bone scan but she wants to see me first, we have an appointment this Thursday. She said not to worry, that this most certainly is something connected to the osteoporosis but since I'm worried she agreed to meet and examine me and going through it all. I'm sure she'll end up sending me for a bone scan.

I am so tired, so tired of being scared, having this anxiety consuming me from the inside. The possibility of this being terminal. Having to lead life with work and teenage kids trying for this not to show.

I'm not sure why I'm writing this. It just feels better to get it out there. Any advice on what steps to take? Anyone with osteoporosis and lower back pain in the morning

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Comments

  • rah2464
    rah2464 Member Posts: 1,192
    edited May 2021

    SolarSister I hear you loud and clear. Aches and pains that pop up and linger activate that primal response we have all developed. I am on Tamoxifen and have developed full blown osteoporosis which is in my hip joints and that lower back. I have to be careful with activity because I feel it primarily in my lower back whenever I do too much. The fact that you had pain onset with a specific activity hopefully does point to either muscle strain or your osteopenia but you are wise to have a discussion with your MO and get things checked out. I hope you are able to get that scan and it is clean. Hugs.

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Thanks for listening and responding Rah2464! When I got my osteoporosis diagnosis I just knew I would end up here sooner or later, on the anxiety train. Just don’t think it would be so soon. I’m so sorry you too developed osteoporosis, it is very scary in itself.

    What kind of symptoms do you have and did you have any injury’s due to the low bone density? Hugs to you back

  • sondraf
    sondraf Member Posts: 1,579
    edited May 2021

    Hej SolarSister,

    This sounds more like it could be a disk issue, piriformis issue, or possibly other low back degeneration rather than mets. Mets pain gets worse in the evening and you cannot sleep and it does NOT get better with movement. My sacral met I confused with low back pain for months but it never improved regardless of what I did (chiro, massage, TENS, hot baths, you name it. By the end before it fractured I was essentially lashing my pelvis together with a wrap and I could not move my leg) . A lot of time slipped disks get better with walking/movement and are worse in the morning, but the massage ball and better with movement = could be piriformis as well. I slipped a disk in a big way and even that got better with muscle relaxers and some light nerve blocking meds for a few weeks (6-8). But... you will still need imaging of some sort to figure out exactly what it is.

    You are doing the right thing, as unpleasant as it is, in seeing the onc.

    (BTW - I am almost 18 months out from my de novo diagnosis and no one knows I have stage IV cancer. Passing me on the street you would never know. I still work full time, do a range of activities, and if the UK will ever let us out of this damn country, would be traveling too).

    Lycka till!

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Hej SondraF! :)

    First of all, I’m so so sorry you went through all that pain and that it turned out to be mets. Words cannot describe how much I hate cancer. At the same time it’s very reassuring hearing you work full time and that you are living life!!! Wow! That makes this just a little less scary for me right now.

    I hope you are right about the type of pain I have though. It sound logical and I have also heard pain from mets is usually bad at night. I am glad I called my onc and a teeny bit proud I took that step too. Thank you so much for your words. I truly hope this damn pandemic will let you travel real soon.

    Kramar och kärlek!


  • spookiesmom
    spookiesmom Member Posts: 8,167
    edited May 2021

    I’ve known for 20 plus years my lumbar spine was a mess. After my first rodeo, it really cranked up. I thought mets. PCP sent me for mri. Arthritis, disc degeneration, stenosis, L5-S1 is shot, but no cancer.

    Our minds do tend to go dark places after a cancer dx, it’s normal. But a lot of times it isn’t hang in there.

  • alicebastable
    alicebastable Member Posts: 1,934
    edited May 2021

    SolarSister, I have arthritis all through my back and it sounds exactly how you described your pain. And osteoporosis and osteoarthritis are not the same and don't necessarily exist together, and osteoporosis isn't usually painful (maybe if there are nerves damaged?). My mother had pretty bad arthritis and not a trace of osteoporosis into her 90s. Good luck with your appointment.

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Alice, Thank you for your thought on this. I know nothing about arthritis but googled it now and you are right! That sounds exactly like what I have, the symptoms are spot on. I also read that it usually don’t go hand in hand with osteoporosis so it’s still a bit weird. I’m going to have to do some imaging but it’s good to know it could actually have some other explanations than mets. Thank you.

  • rah2464
    rah2464 Member Posts: 1,192
    edited May 2021

    SolarSister - no injuries for me yet fingers crossed. I am taking my calcium vitamin D and K2, along with Reclast annually now to build bones up. I am also walking - the best exercise per my bone doc. As far as pain, yes Osteopenia and Osteoporosis are known as the sirent diseases because typically there is no pain associated with them its is just the effects they create such as compressed discs, etc that give you the trouble. I agree with Alice I wouldn't be surprised if you find a little bit of arthritis in there as well. Let us know how things go.

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Rah2464 - glad you didn’t have any injuries. Looks like we’re on the same regime! I get annual infusion called Aclasta. Must be the same basically. I had an ordinary x-ray in January that showed no fractures.

    General update: Last night I slept like a log and had no pain, no painkillers in my system. When I got up from bed my back hurt though, but 10-20 minutes later it dissolved. I haven’t had any pain today, just feeling a little tender in my lower back?

    Sometimes I feel like I’m going crazy over this, like I’m actually losing my mind. Every sensation is noticed and amplified, I question my self and how I felt when I was at the physiotherapist. I read her notes in the journal online, word by word, and I wonder if I actually felt better that time and I am just suspicious of everything.

    I can’t wait til Thursday when I’m meeting with my MO.

  • 2019whatayear
    2019whatayear Member Posts: 464
    edited May 2021

    Ugh cancer is just the worst! I hope the appt with your MO goes well and that you can get a scan to rule it out for your peace of mind.

  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited May 2021

    SolarSister, I’m in a similar position. I have a hip issue that hurts when I get up after sitting for a while. It does rectify as I move, though I do have a low, aching back as well. I absolutely am in fear of scans and I’ve taken a “wait and see” approach.

    Hope your tests have good results!

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Ugh, I’m sorry to hear that DutchieGirl. If it’s any consolation I have had many scares through the years, and with many of them I did the same - wait and see and it finally went away. I’ve had a couple of scans along the way too, one of them was horrible because they couldn’t rule out mets right away. That one I’ll never forget, the others I have just let slip into oblivion.

    I hate scans so much, but I guess you come to a point where you’d just rather know than going around thinking about it all the time. I hope your hip pain will go away soon

  • nutfarmer
    nutfarmer Member Posts: 11
    edited May 2021

    Hi Solarsister,

    I am so sorry you are dealing with this. I can relate. I use to walk regularly but have had severe hip pain I have osteopenia. After a fall last week my whole body hurts I have no idea what is going on but my mind always goes straight to “Cancer". I have several other issues waiting for results of Covid test so I can see my dr. I did have xray of my hip no fracture and no arthritis good news. (I have my very own xray tech. )
    i hope all goes well for you.
    You are not alone

  • lillyishere
    lillyishere Member Posts: 770
    edited May 2021

    SolarSister, I started hip pain last year, 6 months after letrozole. I did stretches my doctor recommended, I had acupuncture and massage and it wasn't getting any better. I had MRI that showed everything normal. I feel that if I overdue with exercise, I get aches that I never had before. Can you try to give your body a rest for couple of days and see if your pain goes away? Also, try to sleep in another bed and put a pillow between legs to elevate the hip just to compare if there is any improvement. Let us know...

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Nutfarmer: Thanks for reaching out and making me feel less alone in this. And omg how scary to fall knowing you have osteopenia, but no wonder you are in pain after that right? So good to know nothing was broken and that no other sinister stuff showed up.

    LillyIsHere: Yes omg, I certainly feel like my whole system is more brittle, not just my bones. I do get a lot more pain in my muscles after I exercise and it had been noticeable ever since I had chemo and started hormonal therapy. I am also way past menopause so I guess my body's general condition is just bad for a woman my age (I am 44).

    General update: I feel steadily better but pain is absolutely not entirely gone. I feel the worst problem aria is in my glutes/butt on the left side, and the lower back is mostly just a little tender, can't describe it better. No pain at night, i can switch sides now - that was very painful a week ago. I started sleeping with a firm pillow between my legs, feels great. One thing that really works is doing gentle stretches in bed before I get up. Huge difference!

    Today I have an appointment with my physiotherapist and I'm going to ask her to examine me and really go through all of my symptoms. Tomorrow is when I see my MO. I kind of don't know what I'm hoping for, that she will send me on a bone scan or tell me to continue what I'm doing and come back if it doesn't get better. I have a constant silent debate in my mind. One side tells me that these symptoms actually don't point to bone mets at all, that there is so much in my life right now that explains my back issues. The other side tells me that why should I be spared from getting mets? That it is just a matter of time, that symptoms can be vague and mimic so much that otherwise wouldn't be a red flag. It's definitely exhausting.

    Gentle hugs to all of you!

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    I just came back from my physiotherapist. She examined my ability to move, bend over and so on. She felt through my spine, pushed every vertebrae while I was lying on my stomach and there was just no pain. At all. About eight weeks ago there was, after I did that deadlift.

    Down at my left butcheek though, outch! Her verdict is piriformis syndrome and she is not at all worried that this has anything to do with my spine. By pushing my left piriformis she recreated the exact same pain I have in the morning. The muscle is not tense, just probably irritated an exhausted from cramping up and being overworked.

    She talked a bit about how fear, grief, stress and negative emotion in general tend to correlate with lumbago. I have had a tough half year I must say. On Christmas day I slipped on ice and fractured my wrist badly, at the ER they wondered what the hell I had done because the wrist looked like it had been in a car accident. Osteoporosis. What a harsh reminder of what this cancer has done to me. I guess I've tucked away a lot of grief just in general. A lot of grief over losing friends to cancer and not being able to anything about it. Topped with intense fear when I had that lumbago, fear when it came back last week. I'm seeing my MO tomorrow. I know she will let me have a bone scan if I want to, but at this time I'm not sure I will.

  • edj3
    edj3 Member Posts: 1,579
    edited May 2021

    Oh piriformis pain is no joke. I have issues w/ my left piriformis and will tell anyone who listens that sometimes I'm a pain in my own ass.

    I'm so glad your physio was thorough and that you will see your MO tomorrow ---hugs---

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Hahaha, oh no edj3! I had never even heard of this muscle before but yes, what a pain! I read now that this butt pain is a lot more common in women and especially women on Tamoxifen.

    Hugs to you too Heart


  • nutfarmer
    nutfarmer Member Posts: 11
    edited May 2021

    Good to hear your physiotherapist is so thorough. I do think our stress contributes to our worry or is it our worry causes stress? Maybe both.

    Let us know how your appointment goes tomorrow...

    ❤️❤️❤️

  • 2019whatayear
    2019whatayear Member Posts: 464
    edited May 2021

    I had that from running - piriformis syndrome it’s painful!!! I now swear by the one leg pigeon pose -(yoga)made a world of difference for me

  • rah2464
    rah2464 Member Posts: 1,192
    edited May 2021

    Ah SolarSister glad we have a potential answer! And it doesn't start with a "C" !

    I agree with us carrying a lot of stress and grief around. It can settle in my back but also my chest and things get tight and painful. I find acupuncture and yoga are my best tools to try to resolve.

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Update: My MO thinks is best I do an MRI, just to get clarity to what's been bugging my back and butt area, that what they will find might help me and my physiotherapist. She doesn't believe my back pain is related to mets, but she did point out that there always is a risk/chance that they find mets in other spots, mets that i haven't felt. Oh, don't I know that! I know that very well.

    The "bad" news is that she doesn't think this is "an emergency" so it might take up to a month before I get the scan. I might call and ask them if it is possible to get a scan sooner.

    I struggle a lot right now. I almost wish i didn't call the MO, even though I know it is the grown up thing to do. I guess all I can do is surrender to whatever the future has in store? I don't think I could ever prepare myself for a new cancer diagnosis anyway, can anyone? I was so relieved yesterday but now I don't feel too good

    Sad

    I'll never ever get used to the waiting. If anyone else wants to share their scanxiety tips or good outcomes in anyway, please do.

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Sorry for spamming my own thread here, I just feel the anxiety increase minute by minute. I know I won't be able to sleep tonight and just the thought of that frightens me. My big brother called and I told him what I am going through, he started crying. At his workplace. I feel so sorry for everyone around me, this is such a heavy burden on everyone. I know he will be there for me, for my kids and my husband if the cancer is back, so I'm trying to focus on that.

  • edj3
    edj3 Member Posts: 1,579
    edited May 2021

    Stay here with us and breathe--do you have routines at home that bring you peace and comfort? A cup of tea, a warm shower, a nice bath, a fluffy robe? Or hey chocolate and wine is always good too.

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Thank you edj3. It’s so nice to talk to people who actually know what this is like. It helps more than you know to have someone out there.

    My husband just said wait a minute, nothing right now points to mets, you got a thorough examination, no swollen lymph nodes and no fatigue or weigh loss. They just want you to be able to let this go for real. And even my physiotherapist said that it would be a good idea to to get an MRI considering how worried I’ve been. I know this is the rational way to think and I am glad that he can manage to be rational right now, but of course I can’t. I know too much.


    Good idea to try some nice routine. I might take a hot bath actually. Tonight nothing but Netflix. I’m calling the radiologist tomorrow morning, if they get a cancellation sometime before my original appointment I’ll just drop everything and go

    Oh Jesus I’m shaking

  • lillyishere
    lillyishere Member Posts: 770
    edited May 2021

    SolarSister, 2 months ago, I went through what you are going through right now. MO order MRI often to have a clear picture and use it as a baseline for future scans. Try not to borrow the worries. Your back pain is so common for people like us. Have you tried Motrin as anti-inflammatory? I am sending you hugs.

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Dear Lilly. Oh what a relief to have had a clear scan! A week ago I took ibuprofen but I haven’t needed that since then. It’s a good sign right? I’m actually more worried that they’ll find something that isn’t giving me aches and pain right now. Bone mets just seem so unpredictable an the symptoms seem to vary to a great deal. I’m trying really hard now not not worry. I’m not very good at it to say the least

  • nutfarmer
    nutfarmer Member Posts: 11
    edited May 2021

    Dear Solarsister,

    I signed up for daily scriptures from Joel Osteen they have helped me with my worry. I have not had a clear ultrasound since my diagnosis and mastectomy 5 years ago so I have had multiple breast MRI’s, breast biopsies, ct scans, etc etc etc. I always try not to worry but it is there. It seems like for me the tests are going to be a part of my life. I do like wine that has helped but alcohol is not good with osteopenia. I like to buy myself a piece of jewelry or clothes. My husband bought me an audi convertible I love to ride with the top down just cruise no destination. The wind blowing threw my hair and the feel of the sunshine on my face or sometimes it is raining or snowing I turn the seat warmers on and bundle up the top is never up rain or shine. A feeling of freedom.

    What are some of your favorite things to do?

    I hope they have a cancellation so you can get in sooner. I am lucky my husband works for an imaging center and they do most of my tests. They take such great care of me. They dont do breast MRIs so I have those done at the hospital and it is a totally different experience.

    Keep posting we are here for you

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    Thank you again Nutfarmer. It’s morning in Sweden and though I had some trouble coming to rest last night I did get about six hours sleep. I am very thankful for that. I am very very tense, to the point where I’m shaking and I have zero appetite. I’m going to try to get in touch with my primary doctor to see if he can give my something to help me with acute anxiety

    Wow you ave been through a lot. And what a luxury to have your own radiologist ;)

    Today I have an emergent lunch with a friend, so that’s something to look forward to.

  • solarsister
    solarsister Member Posts: 44
    edited May 2021

    My MRI is scheduled June 12. That is a lot of waiting Scared