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
Comments
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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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