Very worried about possible bone mets
Dear friends,
I've been lurking for a few weeks, after having been gone from this site for several years, trying to just move beyond this and focus on my girls (Originally diagnosed in 2012 - see more info below).
I'm sitting here this early morning, about to get my girls up for school (4 yo and 10 yo), and then I will be driving two hours for an appointment at Univ of Michigan for a clinic appointment. I feel so sad and hopeless. I just thought it was time for me to write and seek support from you dear people. We moved to a new home (same town) in late September, and in the midst of prepping our home to sell (beginning in August, my husband herniated a disc and was essentially out of the packing, moving, renovating, unpacking game until now - he had surgery three weeks ago. I ended up doing it ALL. And subsequently hurt my back as well. Many times over those long weeks, after putting in a new kitchen floor (!) or carrying too many boxes, etc., I could feel the back pain creep in. Fiinally I started pyhsical therapy at my husband's urging- we can't BOTH be down for the count! I've been in physical therapy now for over a month and I'm not really getting any relief.
I know when I tell that story, it absolutely sounds like a simply injury. Only my symptoms have really changed in the subsequent weeks and seem to be worsening. Earlier I might get a day of relief, but now it's everyday. I currently have a nagging, unending burning sensation in my tailbone. I have tingling in the toes on my left foot, and I have an occasional sharp twinge in my mid back vertebrae. I also feel a sensation in my sternum (not pain, really, just discomfort?), and an occasional burning sensation in the upper verterbrae, neck area. Oddly, when I sleep, all of these symptoms go away. I wake up with no pain/discomfort, but as soon as I get up they start in again and are there all day long, often worse by the end of the day. (Or maybe I'm just tired of it all by the end of the day.) Oh, and most recently - no pooping these last three days.
My crazy-worried thoughts tell myself this: I had bone mets all along - and the intense physicality of single-handedly moving our family just broke what what already weakened by bone mets, They were there - with no symptomology - and I overdid it and now vertebrae, coccyx, sacrum (?), are fractured, etc.
Is that a possibility? Can anyone offer me any wisdom or perspective? I don't have any scans scheduled yet. My onco wanted me to start with my PCP and an MRI, because they thought from my story it was injury induced. Well now these injuries don't feel the same - they feel ominous. (Burning tailbone and the rest???). I asked to see my onco first and today is the day. I am terrified. I don't know how to live with this. I don't know how to not live without feeling in utter despair from my girls losing their mother. I don't know that I can do this. Any help is welcomed and so appreciated. Thank you, thank you, thank you. (Currently sobbing at the keyboard.) 
(Edited to add: since I'm seeing Oncologist today - what do you recommend I say or ask for??)
Comments
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Hang on Jen. Whatever it is or isn't you'll deal with it. Step by step. (Although, to me it sounds like an injury.)
I was diagnosed about the same time as you, same stage. I've had a nagging injury on the lower right part of my back since Spring. I know I lifted something I shouldn't have, and I keep lifting heavy things on the farm, so it never has a chance to heal.
I hope you get some answers soon. Try to pull up on the reins of those runaway thoughts if you can.
Step by step. You are strong and resilient. Whatever it is or isn't you can deal.
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Thank you so much for responding, Farmerlucy. It’s so hard to keep my thoughts at peace! I am truly suffering from “monkey mind.” The terrified thoughts simply take over. Afraid that I would be utterly destroyed By this diagnosis and that it would forever damage my little girls. (Ugh, see?) Thank you for your words of wisdom
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just a small point: l've read here that the pain from bone mets gets worse at night. I wonder if it is something like a trapped nerve? Hoping it's somthing simple but whatever it is, we are all here for you.
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Thank you, Grianne, it’s true - that has been a small comfort that I try to take solace in. My pain goes away at night. I wake up feeling totally normal and only when I get up and move around does it start up. Thank you for responding.
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Jen,
I think the pain is related to your increased physical work. Several of my friends are dealing with back/spine issues lately, - it almost seems like it's 'going around'! One recently had surgery to reduce pain and tingling down his arm. It was a day procedure, and although still recouping with a neck brace, the tingling and pain are gone!
Unfortunately those of us who've dealt with BC almost automatically think mets , - but that is NOT usually the case!!
TRY to think good thoughts, - maybe PT is needed, and that's all!
Keep us updated.
Hugs from NYC
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Wanted to ask, have you already had an MRI or are you requesting that today? We moved our daughter in 2014, 4 years after diagnosis, into a 3rd floor apartment. I was careful not to carry heavy things since I do have lymphedema, but by the end of the day I had some hip and back pain. Didn't think much of it since it had been a long day, many stairs, and assumed I would be sore. Next day was ok, but a week later developed right side unrelenting hip pain that radiated down my leg - worse at night and laying down. I didn't connect the moving with the pain because there was time between with no pain. My first stop was my MO out of concern for bone mets and he did order a DEXA to check for avascular necrosis potentially caused by Prolia, and lumbar and bi-lateral hip MRI. The MRI revealed stress tears in the gluteus medius muscle, trochanteric bursitis and fluid in the hip joint - but not mets. I did go to PT, but it took a solid year to see improvement with twice weekly PT visits. I have no residual issues from this but did have to be patient with the rehab - it was a long process. Wishing you the best, I am hopeful that you have a similar happy ending and I sure do understand your fear!
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Jen, thank you for sharing your thoughts and fears here. We're all here for you and sending you good thoughts!
Please let us know how your onc appointment goes. Sending love
--The Mods
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Definitely request some sort of imaging so you know what you are dealing with and get a plan in place to treat it. I too had severe hip pain; mine was bursitis, which still flares up
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A pinched nerve can definitely cause symptoms like that. Possibly a bone got out of place in your back from all the increased physical activity. Now, if you're up and around, nerves in your back can be pressed on by the misplaced bones. That would explain how the pain comes and goes. And when you're in bed, the pressure is taken off. PT could help manipulate the bones back into alignment, and strengthen the support muscles in your back.I get pain and numbness in my shoulder and arm from pinched nerve in my neck.
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Grainne- unfortunately that isn’t always the case. My back / pelvic pain was worse in mornings. I think it had a lot to do with going so long in between pain meds, but I don’t know.
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It is SO hard not to go there. In a way - our thoughts are our lives. I completely understand the fear and projecting.
I would recommend an MRI or CT scan to evaluate. If allowed - a routine schedule of some type of anti inflammatory medication would probably help. Better at rest is a good sign!
I hope the appt goes well today and gives you some peace!
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Thank you, everyone. It is so helpful to have so many of you respond with support AND experience/knowledge.
I’m finally back home from my appointment with my nurse practitioner at the Cancer Center. She started off the appointment after me explaining about my tailbone/lower back pain - with a very strong (and surprising) “this is NOT cancer” statement. I don’t know how she can say something like that so definitely, but she said she’s been doing this for a very long time (30 years, its true) at a top cancer center (true also) with top oncologists (true too), who have seen it all, and does NOT believe this to be cancer. She said she’d order an MRI and then we went on to discuss other scans, and I explained other symptoms (occasional sternum discomfort/sensation, occasional mid spine electrical “twitch” feeling, occasional upper back (vertebrae?) burning sensation...), by the end of the appointment she decided to order both a bone scan and MRI. I’m sort of pissed that she came in with such confidence - NOT cancer - but then ended up ordering a bone scan on top of the MRI. Does she now think there’s a possibility? I know it doesn’t really matter. Ugh. Scans are scheduled for December 7, results 24-48 hours later. And I need to start a 7-10 day course of Alleve, 500 mg, twice a day.
Now what, dear sisters, Now what do I do with myself? Please, anything you can offer or advise? Thank you so, somuch.
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When I found out about my surprise dx my onc ordered a bone scan and ct scan so I would feel better when I received negative results, since I couldn’t get a sentinel biopsy for a few weeks. He was right. It did make me feel better. That could be why your onc also ordered the tests.
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I agree with that. We would all have thought her negligent if she hadn't ordered them. To be honest, I would take comfort from what she said. She sounds an experienced professional person and she must be pretty sure it's nothing to worry about. I totally get what you are thinking, though, about ordering the 2nd test. Hopefully you will be completely reassured well before Christmas.
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If all negative, have also a dexa scan to look for osteopenia or osteoporosis. I have several symptoms on your list and found out recently I have osteoporosis. My doc explained to me that the one year of forced menopause most likely did this to me.
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Hi Esmerelda. I am also very worried about bone mets. I have had significant lower back, hips, pelvis pain since Halloween. I decided to give it some time and went to my chiropractor 2 weeks ago. My pain did start to improve but has now become more significant again. My back and hips ache sooo bad. It hurts to move. I decided to go ahead and call my MO today. The nurse called me back and said she would talk to the doctor but the MO may want me to go to my primary first.
I hate this so much I feel like I am always looking over my shoulder. I just want the pain gone. I'm glad they ordered a bone scan for you.
Melissa
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Some times it just seems like you have to visit everyone ... I told my MO about tailbone pain and he referred me to my PCP. My PCP ordered an xray but expected it to be negative and told me to take Aleve twice a day for two weeks. With no improvement - I took myself to an orthopedist. His diagnosis? Not enough tissue covering my tailbone. Treatment? Reduce sitting and use a donut type pillow when I do sit. And if no better in six weeks - MRI will be done and possibly injections in the area.
Scans are good. Cover all bases and go from there. Meanwhile - believe the positivity until proven otherwise.
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Thank you, everyone, for your words of hope. It's true - so much better to try and embrace the positive (and good probability!) than cultivate fear of the worst. Now, if only I can train my mind to stay with that!
Yesterday, with four hours of driving for my onc appointment paired with severe anxiety (I seriously thought I was going to throw up as I was in the patient room waiting to be seen!), my tailbone pain in particular was off the charts. It was awful. Once I got home and laid on a heating pad for a couple of hours and took two Alleve and a low dose Valium - I realized my pain was GONE. No pain before bed, no pain during the night, and really only slight sensations yet today. What the eff, sisters??? I don't expect to be pain free (I haven't been in two months), but I am trying to just BE in this respite and accept it and allow it to wash over me.
Melgirl, I hear you! I know what you are living through. But GOOD ON YOU for making the call and getting it addressed. At times I have avoided calling my onc out of fear (What's going on?? Do I want to know?? I choose ignorance!), but honestly I do feel a bit better after my appointment - not because I know anything about what's happening yet, but I think taking the steps forward requires courage and ends up giving you strength and a feeling of control. There is nothing worse than crouching in fear in the unknown. At least for me that is true. Wishing that you get an appointment quickly and get answers! Hugs to you...
Notverybrave, Oy! What a process you have been through! Thank you for sharing your experience. We really are complex and our bodies and symptomology are also complex - and confusing! Hope you get some relief soon. Thank you for the encouragement. Hugs to you...
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Esmerelda, I am glad your Onc is taking these precautions. I had similar pain as you describe. And match many of my own. I ended up w an MRI, diagnosed with several herniated discs and a compressed spinal cord. Surgery for spinal cord decompression and fix the disc and symptoms were gone!!
The scans she ordered are appropriate and you need to find the source of your pain. I am glad she is taking your symptoms and concerns seriously to rule out cancer and find the root cause. Hoping it turns out to be something like mine and not cancer.
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Bevin - thank you so much for sharing! I did so much damage to my back this fall. I keep trying to remember that. We moved, we renovated our home. My husband had a herniated disc and was using a walker the whole time. I did it all! I remember wearing a back brace throughout it at times, because I knew - I could feel that I was overdoing it. I’m trying to hold space for that in my monkey mind. So grateful for your example. Definitely hope to receive the same news. Did you have relief at night when you would sleep? All of my pain goes away when I lay down and rest and all throughout the night. I’m trying to interpret that as a good sign. Thank you so much for responding. I recall reading your posts years ago and I’m so grateful for your continued support.
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hi there, it was much better laying down. I coule not out pressure on my leg or lift it the compression to my spinal cord had gotten so bad. When is your Mri?
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Hi Bevin et al -
Bevin I wrote back the other day but see that it never posted! Argg.
My bone scan and MRI WERE scheduled for this Friday - but I just got a call and they need to reschedule my MRI for next Thursday the 13th. And... this has me feeling so distraught.
I have been vacillating about whether to go through with the bone scan - having spent some time recently allowing myself to think this is more likely an injury issue and perhaps I should just stick with the MRI. But if I’m honest, I think I’m just terrified of the bone scan and what it might reveal. I have been on pins and needles emotionally, preparing for this Friday - getting it all done and having the waiting game behind me. And now having to wait another week for the MRI has sent me down a dark path today. I’m freaked out all over again. And I’m hoping you all can talk me down a bit.
My fearful thoughts - I have “pain” (discomfort/burning/twinges,etc. - it changes), in my upper neck vertebrae, my mid spine and my lower back and sometimes tailbone. My fear says: what are the odds that I’ve “injured” three (four?) separate places in my spine??
And today, I’m recalling in 2014, when I had hip pain and had an MRI that showed a benign “bone island” (sclerotic or healed? Lesion?) What if that was cancer and tamoxifen did it’s job (back then) but now... I’m lit up like Christmas tree and tamoxifen has stopped working...
You see? I am truly in fear-town, sisters. I have to pick up my four year old in 20 minutes and I just want to hide in bed and sob... can anyone help me?
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Jen!
TAKE A DEEP BREATH!! TRY to keep your imagine/fears from running away!!
I tend to think that if the drs had serious concerns, they would make sure you had that scan asp and not postpone, no matter what!!
Hugs to you!
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I am glad you are expressing this here. Journaling may help too. Worry will not keep metastasis away, but it will steal away pleasure in today’s moments. Plan something fun with your 4 year old. Stay as busy as possible and keep yourself distracted. It is hard. I know. When the fear hits, try to use positive self talk. Tell yourself what you would tell someone else with the same worty
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anotherNYCG and Kbeee, thank you so much for responding. These days (weeks) have been so hard. Of course you are so right, what would I say to someone else? I know what I would say. And I know I would be convincing and calming as hell for somebody else. Why can’t I be that way for myself? Sigh. I am just struggling so much. I hate this. I’m at the point where I just want to know. I think. Maybe the worrying about “the worst” is even worse than the bad news itself? Ugh. So tired of this shit. I feel like I’m on the verge of a nervous breakdown. I’m cranky and sad and on the verge of tears around my kids constantly. Somebody who is stage IV, please tell me that this awful state of mind is worse than... where you are now? Does this make sense? I’m embarrassed of how weak I am feeling. Not strong. Not brave. Just living in pain and fear. (((((Thank you so much for listening))))))
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JEN! Don't do that to yourself!!
I once read that "worrying is like paying interest on a loan that you don't have yet".
Try to take a step back, and remember that EVERYONE has pain and unusual sensations at times, and most times it turns out to be nothing serious!
Dont think the worst!!
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Thank you, anotherNYCG. I am going to heed your advice and try and stay really busy today to keep my mind off things. Just had a physical therapy session this morning, and my therapist is great. He lets me worry, cry and work it out. Thank you for reaching out to me. It means the world to me. Helps me feel so less alone in this.
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Esmerelda, I really think you pinched a nerve in your spinal cord. That kind of pain can travel down the spinal cord. Nerves are extremely long and interconnected. So what you're experiencing may just be the result of one injury. I know it's impossible not to worry, but just remember the odds that it's NOT mets are in your favor!
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Let me just say (or write) that I echo the others here.....getting imagining and doing your due diligence to rule out possible mets is the best first route to take, so you're well under way. Turning your mind from the dark side is close to impossible while waiting, and for that my heart goes out to you. Hang in!
I'm an 'addicted' lifter and have been going at it tooth and nail in the gym for 3.5 years now.....lemme' tell ya, it is SO easy to injure yourself by lifting, even by being a couple of degrees out on form. Last year I suffered a debilitating wrist injury doing push ups with my arms slightly off center. It took 8 weeks to heal and another 8 weeks to sloooooowly build up to doing anything upper body again. I've put my back/hips out of wack and messed up my knee a few tmes (don't even get me going on a glute pull I had once)…..generally by upping my weights too fast and not concentrating on form. Injuries can wreak havoc on the body, and yes, my mind often roams over to possible mets each time. Please know that by doing it ALL during your move is most likely the cause, especially if you aren't used to lifting and overworking. Time and rest is your best friend. I'm crossing my fingers you get stellar results....keep us posted, breathe.....thinking & hoping it's just injury!
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Thank you, pupmom and Egads007! Your posts brought me to tears! (The good kind. Ha!) I will be re-reading them in the days to come. Breathing deeply. Tomorrow is bone scan. 24-48 hours I’ll have those results. Many blessings to you for taking the time to offer comfort and reassurance. Much love ~
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