Yesterday I dropped a letter into my doctors asking if she would chase up a DEXA scan appt that my haematologist had requested last July. I had one 3 years ago which showed borderline Osteoporosis. I was supposed to have one 5 years after my first but she wanted it bringing forward because of my back pain.
Anyway, back pain has got much worse and my left buttock keeps going numb. It has got so I cannot stand without the pain being so bad that sweat pours down my face.
I have put the pain down to my osteoporosis so I was a might disturbed when my doctor called to tell me that because of my previous breast cancer she was referring me for an MRI. Apparently doctors cannot refer anybody for an MRI at the moment because of the back log but can if there has been a previous cancer.
Now my mind is running around the thought of secondary bone cancer. I have said to my husband before how awful it is that women get the all clear from breast cancer then years later they get bone cancer.
I just hope that the appt comes soon so I get an answer one way or another, at least so I can be helped with the pain.
Please keep me in your thoughts, I need all the help I can at the moment.
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jillydabrat
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Try not to worry Jill. I know we always think the worst and worry ourselves so much. Perhaps your Dr has put you through for MRI scan quoting your breast cancer to beat the system as a way of getting it quicker. My breast cancer was 3 years ago and I try not to think about it when all these aches and pains and weird things happen to my body. The bones in my hands and wrist are dreadful just now and my left foot and leg have oedema. My Haemo referred me for MRI at end of last December to see if anything vein wise was going on in my leg, which thankfully it wasn’t. Still battling with fat ankle though. Hope you get it done soon and your mind can be put at rest. Love and prayers, Fran xx
I am so sorry this is making you feel so anxious. I think it is natural to go through all the worst possible scenarios in your head. It could be that your doctor is just being sensible and cautious, but even knowing that your pain may well be something much less serious doesn't eliminate the fear does it, so you will definitely be in my thoughts and prayers. Love, Jennie
Yes Jill, hopefully it is like Fran says and is a way of getting your MRI done sooner by mentioning your past history with breast cancer. What with Covid, getting any type of referral with the NHS waiting lists as they are is going to be horrendous thats why hopefully your Gp as done it this way. Try to put it to the back of your mind. (easier said than done) Fingers crossed appointment comes soon. Tina.xx🤗
So sorry to hear that you are feeling so much pain. I know you are worried but it’s better to know what is going on so you can get the proper treatment. We are all thinking of you and hoping for the best. Let us know what happens.
Hi jillydabrat so sorry to hear you worrying about your scan hopefully you will get a appointment soon the waiting is worse. Bad backs are so horrible I suffer myself you can’t walk sleep or wash at times so hopefully you will get some answers and everything works out fine try not to tense up best wishes Poppy xx
Sorry to hear both that you are experiencing pain and that you have a worry about bone cancer. How odd that we would be relieved that it is "only" something like osteoporosis or spinal deterioration. I experience the latter. Back pain is quite troublesome. I hope you get the imaging done soon so you will know what is going on. Meanwhile, there are some things you can do about the back pain. I have found massage therapy by a skilled therapist to be most helpful. I hope you can find some interventions that work for you.
My back pain is caused by a combination of spinal deterioration and the systemic inflammation that comes with the JAK2 mutation. I am managing back pain with a combination of approaches. The same things I use for systemic inflammation is one part of it. Curcumin, SPM Active, L-Glutathione. I also have a measured deficiency in Vit D due to the NF1 mutation. Taking a supplement for that too. (also taking supplements for Magnesium and Vit B/folate deficiencies).
The other things I do for my back include massage therapy and practicing Qigong. Both are quite helpful in managing/preventing pain. I have been to Back School as part of physical therapy. It is very important to be aware of how you move, exercise and perform physical labor.
I have osteoarthritis in multiple joints. I expect it is part of the systemmic inflammation so many of us experience. I also use Diclofenac topical PRN to deal with that and back pain at times.
Aging with a MPN can have challenges. Glad to have found some things that help.
hunter, Delta tocotrienol and boron are worth your time to research for not only their effects on osteoarthritis and inflammation but on many other health issues. Tocotrienol from annatto offers advantages against cancers than other tocotrienol sources. Red palm tocotrienol was effective in lowering my wife's platelets with her her oncologist's approval. Always consult your health care professional before using any supplement.
You sound so worried jillydabrat, take a few calming breaths.It is good news that you may be able to get an MRI scan.
It does sound like the sciatic nerve is involved, back pain is wretched. I found a cold hot water bottle helped a bit more than a hot one. Warm baths are good if you can get in and out safely. Mother in Law recommended soaking in Epsom salts.
I hope it is the more common bulging disc which gets better in time.
If you suffer loss of bladder control with back pain you do need to contact A&E immediately.
In the long term I found that properly taught Pilates, starting very gently has worked wonders with my back. I can walk in a straight line now, and no longer limp. I had to convince the orthopaedic surgeon that I had not suddenly grown one leg longer than the other. Honestly, I would have had to turn up one trouser leg so I would have noticed!
It's so annoying that GPs can't order MRIs and CTs but have to send patients down the x ray rout first which seems a waste of money as we inevitably end up having to have an MRI afterwards. It's possible you may have had a spinal fracture. The pain from these is excruciating and can be felt in places other than directly on the spine.Best wishes.
Thanks again for all the lovely messages. I had a bad fall from a high wall when I was young, landing straight on the centre of my hips. I couldn’t walk properly for a good week but I wasn’t seen by anybody. Ever since then if anybody touched my lower back I would climb the wall. I am hoping the MRI will find out what’s wrong in that area. I chose to drive to a small urban hospital for the MRI rather than the large hospital just up the road.
I hope your scan results aren't as worrying as you fear my friend. I applaud your GP for requesting it , I wish my GP surgery was as proactive but it's been like Fort Knox this past year. I feel I would benefit from an MRI to rule out any possible secondary cancer and fully assess my back and leg pains so I will get back on to them. Good Luck x
Hi Jill, I can understand your worry, but at the same time try to calm yourself a bit by not just thinking of the worse. I always have quite severe back pain and had a few epidural steroid injections on my spine the past few years, few months ago my sciatic nerve plays up and the pain was unbearable, I couldn't sit, stand, couldn't walk more than 10 steps, had ultrasound and scan, it showed every single disc on my spine are no good and I also have cervical spine problem, at the same time I have bursitis in both shoulders and left side rotator cuff tendon has torn 8mm. That was my scan results. So please don't stress yourself so much at this stage. Wait until results from dr, things may not be as serious as you've been thinking. You are in our thoughts. ❤️
I was fine until she said “Because of your breast cancer history”. There is nothing I can do but wait. I will be doing a lot of painting/knitting to keep my mind occupied.
I have a similar problem, Jilly. My haematologist asked for a DEXA scan and my GP ordered it. I waited and when I spoke to her recently, she said it had been refused on the grounds that I had one less than two years ago. Of course, for my age, the scan showed that I was fine but I am now being given drugs for osteoporosis without a diagnosis. I have four spinal compression fractures, which are quite common but extremely painful.
I got an MRI scan last year, when my physiotherapist ordered one, and it was done very quickly and showed the fractures. It took months to get this far and I was given exercises.
I have to say that the drugs for osteoporosis do seem to be helping but I am still taking some painkillers.
I think it's a matter of finding the right person to order whatever scan you need but I hope you get it sorted out soon. I would expect the MRI would show you have compression fractures and these are squashed bones, rather than cracked or broken. Apparently, they can be healed within a couple of months! So speed is important. Good luck.
Alendronic Acid (once a week) and Evacal D3. The physio thinks my fractures are caused by the blood cancer and the MDS consultant says it's more likely osteoporosis. I have started to see a chiropractor and she said she would try and get the DEXA scan arranged because she said I shouldn't be treated for something I might not have and she couldn't treat me properly because it isn't confirmed.
I was annoyed when my GP said it was no use chasing the DEXA scan as it would only show fractures??? So why not send me??? I don’t care what they do as long as they find out what is causing this horrific pain. I am so worried about the numbness in my buttocks. Whatever it is it’s certainly progressing and I more than a little scared.
My DEXA scan is to show osteoporosis. My compression fractures were picked up clearly by the MRI. Have you been given any pain killers, Jilly? They don't care what the cause is as these days they like to call it non-specific back pain and give you pain killers and exercises.
Pain killers I have had for ages. I won’t stand for non-specific. Something is happening that is causing the loss of feeling in my buttocks. That can’t be good. When I got diagnosed with PV one of the symptoms was numbness in my feet. The hydroxycarbomide took away that numbness to an extent but that numbness is coming back. Is this related to my back pain? I need to know
Haven't they even asked you about numbness, or numbness going to the toilet? They keep asking me these questions but I don't have a problem. I do have pain in the buttock - in fact the pain down that side is greater than in the spine. At first it was bad enough to cry out when getting up from bed in the night or morning.I have neuropathy in my feet, which predates my MDS/MPN diagnosis and I have just been put back on amitriptyline for that, though it doesn't bother me as much as the effects of the drug. I only mentioned it because it could be a symptom of something, but my GP sent me to a neurologist who said about 2 out of ten people have it. Then my GP said she had seen someone else within days of discussing it with me and she was surprised! She's only part time.
Alendronic Acid (once a week) and Evacal D3. The physio thinks my fractures are caused by the blood cancer and the MDS consultant says it's more likely osteoporosis. I have started to see a chiropractor and she said she would try and get the DEXA scan arranged because she said I shouldn't be treated for something I might not have and she couldn't treat me properly because it isn't confirmed.
Thanks. Yes you definitely need to know the cause. My Osteoporosis was caused by high dose steroids to save my liver after my Stem Cell Transplant and like you have 4 or 5 spinal compressions which was the worst pain I ever had.
I too was taking Alendronic Acid and Evacal but I recently had my Alendronic Acid tablets replaced by a 6 monthly Denosumab injection. The jab is not without some risk but I figured it worth a go as my last Dexa scan showed a couple of areas of Osteonecrosis.
Thanks JediReject. I find it a pain to take the alendronic acid when you can't take it lying down and you can't have anything else for half and hour or more either side of taking it. Thank goodness it's only once a week, but I'm also taking Lansoprazole which has similar advice. I don't know anything about osteonecrosis and haven't had any transplants, but you are right - the pain is something else. The first time I hurt myself I went to hospital and an x-ray showed nothing but after the third injury which was caused by something really minor but resulting in major pain, I was sent to a senior physiotherapist who arranged the MRI. GPs just have their hands tied and it doesn't pay them to push too hard until there is a proper diagnosis.
Hope you get the appointment and results v soon Jilly. It is standard nowadays if there is a history like breast cancer to consider imaging like MRI to ensure no link to that and the back pain. Sounds like your GP is on the ball and hopefully the radiology department will get you an appointment quickly. Another useful thing to do which GP can organise quickly is bloods to check your bone profile and LFTs which can be helpful.
I'm not sure if you are still under the breast team but maybe worth ringing the clinical specialist nurse for that team as they may be able to offer more advice knowing what type of breast cancer you had and they may be able to liase with the radiology team to speed the scan up.
Good luck and try not to worry.
Other thing to mention is Red Flag back pain signs- if your back pain gets really severe and you end up with numbness to your saddle area or any loss of control with bladder/bowel then that's more of an A+E attendance to get urgent scan to check there is no cord compression.
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