upper back pain
Hi lovely community, I have been reading in the forum for a few years and found this a wealth of information, but never properly registered, so this is my first ever post.
I am from the UK, am 53 years old, am married and have one cat.
I got diagnosed with ILC (stage 2, Grade 2) at age 46, had surgery (lumpectomy), sentinel lymph node removal, radiotherapy and then started Tamoxifen for 4 years. I then started a year of Zoladex injections and Letrozole in 2022 and one year ago had a hysterectomy and just on Letrozole since then.
Over the last few years I have had a few scares and worries mostly to do with hip pain and had a couple of bone scans (last one 2022) which were clear and the hip pain had also each time completely resolved. This summer though has been a really horrible time and I have been going from one worry to the next. I started to develop lower lumbar back pain which first came and went for a good few weeks. I had already made an appointment with GP for a couple of weeks away, but when it became debilitating and causing constant burning across the whole lower back and tingling in the legs and I could not sit, I ended up in in ER and got an MRI of lumbar spine and sacrum. Fearing the worst, I was relieved to hear no metastatic spread, but a bulged disk. This was in July, I went to a physiotherapist and am pleased to say that the pain has now almost gone to nothing. Unfortunately shortly after this, since mid July, I have had a horrible pain in my upper back. It also came on gradually, but is now there most of the time, especially when I move (like swinging my arms during walking). The pain is mostly in one area, one one side, sort of between the bottom of the shoulder blade and the spine. Sometimes it's just ichy, then burning and then just achy, sometimes I get muscle twitching in that area too. The pain can radiate round to the side of my ribcage as well. Sometimes the other side of the upper back hurts too, but more an ache and it usually goes away when I change my posture. My physio reckoned it was a tight muscle, but despite vigorous efforts, he didn't manage to loosen it or relieve the pain, in fact I would say the pain has increased. I am not under any breast care or oncologist anymore. Unfortunately in the UK we get discharged after 5 years from both breast clinic and oncology and we will need to then go through our GP who can re refer to breast clinic. This does however take forever. So as a first step my GP has ordered blood test (which came back normal) and I have had an Xray, two and a half weeks ago, however the results are not back yet. This is driving me absolutely crazy. The GP reckoned 2 weeks max, the hospital also said approx 2 weeks, however the receptionist said that due to the shortage of radiologists here in the UK, they have sometimes been waiting on results for 4-6 weeks. I really am not coping well with this waiting and the unknown. GP has prescribed painkilers (Naproxen- anti inflammatories), but they have not really made a difference. The only positive is that I do manage to sleep ok (that's if anxiety and worry doesn't keep me awake) lying on my back or on the side, so I have no pain during the night. I really hope it is nothing bad, but I don't know when I find out anything. I am also aware that Xray is not the best test, but this is what GPs are limited to here as a first line investigation.
Thank you for reading this long post. I really feel quite lonely with my dark thoughts at the moment and just wanted to reach out. Thank you,
Bonnie
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Hi @bonnie365, welcome! We’re sorry you have to be here for this, but so glad you’ve finally joined us after all these years of reading. We hope you’ll hear from other members soon who can share their experiences and offer support. In the meantime, the following articles from our main site might help you ease some of your worries:
Hope this helps! We're here for you, and we hope you find some comfort in connecting with others who understand what you're going through.
Looking forward to hearing more from you soon!
The Mods
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Hi @bonnie365, It's tough to be stuck in the morass of the NHS; there is current understaffing but there have always been issues. When I lived in rural Scotland years ago I was stuck with the one sub-par GP in my geographic area. I would wait until after office hours and travel to the nearest A & E for routine care (they understood why.) I was hospitalized for a month in the neonatal ward of a Victorian era hospital which was like a gym with 30 beds and curtains. Going for scans and tests meant being pushed in a gurney outside along a sheet metal roofed walkway with the wind blowing rain on you. The positives were the equipment was new and care was paid for without arguing with insurance companies. I have lived in six different countries and each medical system has its pros and cons.
In the US orthopedic reasons for musculoskeletal pain are usually investigated first since they are much more common. An oncology NP sent me to my GP for hip pain. After an x-ray an MRI found a bone lesion which looks like a met so I ended back with my MO. Since there are also ortho reasons for the pain, PET scans were inconclusive and a biopsy would probably break my hip it is being followed for growth. I'm grateful to be walking around and have learned to live with the uncertainty.
I hope you get your x-ray results soon and your doctor can find the reason for your pain. All the best for a good resolution.
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Thank you for your reply and for reaching out to me @maggie15. Reading your story about Scotland made me smile, as I also live in Scotland, although not remotely but in the Central belt. In fairness, I have also lots of positive things to say about my GP practice and also the hospitals I have been to for checks and surgeries etc in the past. My GP organised for this Xray and blood test the same day I saw her, so that's pretty good, it's just the waiting times for the results that are so long.
Next week it will be 4 weeks. I have been phoning up every 2 days to see if the results were back only to be told not yet and that the average time seems to be 6 weeks now. I then rang the hospital directly, they are not meant to give you results, but the very friendly guy on the phone double checked for me and told me that the xray had not been looked at as they were still looking at the backlog of xrays from August and his estimate was more 8 weeks before I could expect a result. He did however attach a note stating that I was very anxious to see if they could bring it forward. 8 weeks to look at an Xray seems just immensely crazy. But in a way, I know now not to phone up next week now, because every time I phoned I have been a bundle of nerves. I will probably get referred for more scans via the breast clinic in any case, even if xray shows no concern, but I find the thought very upsetting that this waiting for the Xray first delays any further step. Thank you for sharing your story with me. I am glad you are comfortable with your own current situation and the wait and see approach. I was going to go a short holiday mid October, but was holding off booking anything as I thought maybe I will have appointments then, but I think, given the time frame, I will just maybe book it and go. The pain is constantly there, but bearable, I am able to go to work with it, so I think I may be able to cope with travelling too. Will update once I hear anymore.
Bonnie
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Hi @bonnie365, I’m glad you finally got some sort of time frame even though it is ridiculously long. Since your GP can’t schedule further imaging without the x-ray result you might as well go on your planned holiday.
Your back pain could be caused by anything but with the changes in how it presents sounds like it might be nerve pain. I had a problem with nerve pain in my ribs due to radiation which was helped by nerve blocks and gabapentin.
The NHS does have many good doctors. After I moved to Edinburgh I had the choice of many excellent physicians. When I had an inner ear infection and was dizzy my GP made a house call (almost unheard of) since she didn't want me falling down the stairs. Wherever you live you just have to go with the flow of the local protocol.
Enjoy your trip and let us know how this eventually turns out.
Maggie
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Thank you Maggie for your reply.
I didn't go away on holiday after all, but I thought I'd give an update, although still not much further forward.
On Friday, I eventually got the results of my Xray and everything was clear. It mentioned that my lungs and liver looked clear, but not specifically anything about bones. My GP reckoned that if there had been anything seen or any obvious fractures, it would have been mentioned and the fact that nothing was mentioned, all seems fine. I think GP put on the form to check for secondary bc and osteoarthritis, but didn't specifically mention secondary bc to bone. Hmh…? I hope the radiographers did check for that too though.
I was told, I could get referral to breast clinic, but that because xray showed nothing suspicious with need to follow up, it would not be treated as urgent and it could take some time on waiting list for bone scan. I have now asked for a private referral to an orthopaedic consultant to get an MRI scan done, presuming that an MRI scan would give the best diagnostic picture and beyond bones, be able to give insight regarding muscles, ligaments discs and nerves too. I have an appointment in two weeks time. My pain is still there, some days more than others and last week I tried to do a short run (less than 10 mins) and regretted it soon after as my whole back was on fire afterwards, just horribly burning. That was on Friday, it's better now, but my ribs still feel very sore today. I was an avid runner, did many 10ks, a few half marathons, a marathon and only in May this year I ran a half marathon with ease and no ill effects after. I have been looking back through my calendar / diary, but really can't think of anything I could have done that would have caused injury. This is just so strange and really getting me down. Anything I do, from the most gentle yoga stretches to a few lanes in the swimming pool, aggrevates it and I do miss my exericse, as this was always my happy place.
Anyway, not much I can do just now apart from wait just now and I will update further once I know more. Just thought I'd check in and thanks for listening.
Bonnie
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Hi @bonnie365, in the process of being dx'd my GP sent me to have x-rays because of my breathlessness. While the radiographer mentioned I had spondylosis, he did not pick up the "innumerable" sclerotic mets I had on ribs and vertebra. That was only picked up in ct and full bone scan. Knowing what I know now, I would be pushing for a ct scan. But I am not sure how the NHS works. Please keep us updated and in your pocket with support.
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Hi Bonnie,
I'm glad the x-ray results were clear but a MRI is definitely the best imaging modality for your case. It's good that you will be having that done in the near future.
I'm currently in the middle of a similar situation. I once again live in a rural area but travel 100 miles to a large hospital for bc treatment. My oncologist referred me to my local ortho because of hip pain. An x-ray showed nothing but a spot lit up on a MRI. The local radiologist thought it was a bone bruise or bone marrow conversion but couldn't rule out a met so I sent a copy of the imaging to my MO. The bone tumor radiologists at the big hospital diagnosed a 2.5 x 2.2 x 1.3 cm bone lesion in my acetabulum (hip socket) and had me come in for another MRI in a more powerful 3T machine to get a better look at it. They were able to rule out everything except a met or a benign lesion that mimics one.
A biopsy should have been next but the ortho oncs decided that procedure had a >70% risk of breaking my hip. Since both hips also showed arthritis, osteoporosis, tendonosis and other degenerative changes I had a FES pet scan done looking for estrogen receptors in another location which could be biopsied. Thankfully nothing else showed up but that leaves me with an indeterminate lesion which could be an ER+ met that the tracer could not reach, a met which is not ER+, a met from an unknown primary or a benign lesion. I'm having another MRI done in Dec to check for growth. Hopefully it has remained stable.
It's likely the MRI will find the cause of your pain and something can be done for it. I have to wait for permission to deal with the ortho problems which could be causing my pain (I was a competitive breaststroker which probably stressed my hips) but have learned that sometimes there are no easy answers and you just have to go with the flow.
Thanks for the update. Let us know what the MRI finds. Hopefully it will be something easily treated.
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Hi Bonnie,
I wanted to share that I also have ILC and experienced hip pain since my diagnosis. I want to mention that I had shoulder pain similar to yours during the first year after diagnosis, which I believe was due to tension and stress. It eventually resolved on its own after about a year.
From what I understand, bone mets tend to cause pain even when at rest or during sleep. Keeping my fingers crossed for you, and hoping that your scans come back clear with nothing to worry about.
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Thank you @malleemiss251 , @maggie15 and @lillyishere for your replies. I really appreciate the time you took to write, it is so nice not to feel alone. My anxiety is spiralling at the moment as my pain got worse over the last week. Start of the week was brilliant, I went for a walk and felt really good. But by Thursday night I could not lie on my back without getting weird cold shooting sensations and tingling in various parts of the body (pretty random, right and left shoulder blade, thighs, buttocks, right hip, even back of my head and above my lip). Upon sitting or getting up this went away. But each time I tried to lie on my back it started again. I managed to get a couple of hours sleep on my side, but experienced voluntary muscle twitches on both shoulder blades and buttocks. The worst sensation, not during the night, but the next day, was the burning throughout my upper back and ribcage, starting from back and then branching out to both sides. It was horrible and it brought me to tears.
I got in touch with my GP on Friday who said it sounded like intercostal neuralgia and trapped nerves and she put me on a dose of amitriptylene. Thankfully this brought the nerve pain pretty much under control and I am able to function again, I also managed to sleep ok again the last three nights and am signed off work just now. I am gutted as I love my work and it provided good distraction from my mind going to dark places, but I can't drive first thing in the morning with the side effects of the tablets. I have my appointment with the orthopedic consultant this Wednesday night and hope it won't be long after that that I will be able to get an MRI or CT scan, whatever he recommends. My GP admitted that the xray has been pretty useless for diagnosing my pain, but that they have to follow protocol and as it is the cheapest scan, they have to do that first to rule out any fractures etc. She told me to try out the amitriptylene for a few weeks and if no better she could refer me for an urgent MRI (but said would probably be December before I would get it, despite my history of cancer) or back to breast clinic, but again would be a few weeks, but if I can afford it (not really, but will just have to) to go private to speed things up. I am annoyed that I have wasted 6 weeks waiting for this xray result and am still no further forward. The amitriptylene is only masking symptoms. I can feel the pain when it is wearing off and also get breakthrough pain. I notice it especially when I am twisting my upper body, it then feels as if there are shooting sensations (cold or hot waves, hard to describe) coming from the spine and the original pain in the usual spot is still there too. Thanks for listening, I just had to write this all down. Please if you have any suggestions of questions I should ask the orthopedic guy or anything else I should do, please let me know.
Thanks, Bonnie
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@bonnie365, I do not have pain with my bone lesions, just little pings at different places - either it is reminding me it is there or it is dying and releasing cytokines. I really hope your orthopaedic consultant can get you some scans quickly so you can know what you are dealing with. I am also glad the pain blockers are working for you. In your pocket with support.
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Hi @bonnie365, I'm glad to hear that the amitryptylene is helping with your pain. I take gabapentin for nerve damage from a combination of radiation and thermal burn. At one point the intercostal nerve pain got so bad that it was agonizing to breathe. After imaging I was referred to a pain clinic where a neurologist temporarily blocked the major nerves to that area. After the block wore off several weeks later the pain was tolerable again but I was told I could have a permanent block (and be left with no sensation in the area) if that was what it took. Hopefully your ortho consult will get things going to find the source of your pain and a solution.
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Hi @bonnie365 we are glad you are finding support in the community. You aren't alone, thank you for sharing your story with us ❤️
The Mods
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Hello,
Here's my update so far. I went to see the orthopedic consultant yesterday who was fantastic in his prompt action. He said he was appalled the way I have been kept in limbo over the past few months and that no proper action had been taken by my GP. He was able to access all my files and medical history and said sending me for a chest Xray, which only takes one picture from the front for back pain was absolutely useless and wasted a lot of time and that with my history I should have urgently been referred back to oncology and an urgent MRI scan. He said if they had done that instead of keeping me hanging with that Xray, I would have had that scan even on the NHS by now. He said my symptoms of the pain being there constantly and now involving neuralgic pain are all the red flags for him to be very concerned and that I would need an urgent MRI now. He said before he would even guess at what else could cause this pain, we will need to rule out metastases or find them and then take it from there. He managed to book me in for this Sunday for an MRI and I see him again in a week's time for the results. I am grateful to finally be getting this MRI, but of course I am also now totally terrified of what the outcome may be. I am preparing myself for worst case scenario and will try whatever I can to be busy and distracted over the course of the next week.
Bonnie
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@bonnie365, I am so glad you are going to have the necessary scan soon. In your pockets with support and necessary hugs during the scan and while waiting for results. Keeping busy and distracted in the meantime is a good strategy.
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Hi @bonnie365 , Good news that you have an MRI scheduled for Sunday and a follow-up appointment with a doctor who is taking this seriously. I hope they find something easily treatable. Thanks for keeping us posted.
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Hi Bonnie.
I have a similar pain as you. I am praying you get good results. I see the most recent comment is October 24th. Please keep us posted. 🙏
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