I have today found out I have osteoporosis in consequence of taking meds for stage four breast cancer. I am very well versed in cancer as I have lived with it since 2020 but a total novice when it comes to bone matters. My oncologist was dismissive and suggested I speak to my GP. Due to an integrative approach to cancer, I take vitamin D and K2 each day together with many other supplements (I’ve now added calcium!) . I’m vegetarian though and I also undertake yoga regularly. My T score for the AP Spine region was -3.3 and the BMD is 0.8 which doesn’t look great. I also have osteopenia in the dual femur region. I will try to identify a consultant to speak to but in the interim as I do vigorous yoga, I’m now panicked that in keeping me healthy to fight cancer, I may be risking fracturing my spine! As this is all totally new to me, please let me know if anyone can suggest a good consultant in London or has any advice on whether that T-score and yoga is safe and if not what exercise is and what are the best supplements/meds. Many thanks for any advice/tips to this newbie! I feel v out of my depth.
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JKMS
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Be careful with yoga, many poses are not good for OP. I am pro animal protein, believe in keeping protein high, collagen is very good for bone health. I also take Vit D3, K2, complex bioactive vit Bs, silica, no calcium though, I have a history of parathyroid tumor, my calcium stays right on the line to high, so it's a no go while on Tymlos. I searched for every natural method to improve before Tymlos, and none worked. I currently have 8 spinal fractures, and they are worse than the 4 spine fusions I've had in the past. Sarah Meeks is a good resource, I highly recommend the book Great Bones by R. Keith McCormick DC.
Thanks so much - I will definitely look into Sarah Meeks and R Keith McCormick. I suspect my diet may have helped my immune system/cancer but not bone issues sadly. I’m sorry to hear about your fractures and wish you well.
Have a look at Margaret Martin’s website. She is a Canadian physiotherapist who is very sensible. She has a couple of books one about exercising with osteoporosis and another about yoga and in both she tells you what not to do if you have osteoporosis- as well as great advice on what to do.
If you have a look on the Royal Osteoporosis Society website you will find masses of information on there includ8ng diet and exercise and they also have a helpline where you can email or speak to an OP nurse theros.org.uk/
Those two links ought to get you started. To be honest I think I would avoid ‘vigorous’ yoga. I do Pilates with a teacher who specialises in people with osteoporosis and other conditions that affect your bones and I walk a lot - I often use Nordic poles - I’m sure with the right person to support you can work out an exercise routine you are happy with.
Thank you. That’s so helpful. I changed my life when I got diagnosed with cancer so I guess this is just yet another change and set of things to explore and learn. I treat cancer like a chronic disease so now I have two! My body is greedy ha ha
Think you have exactly the right approach as you seem a very positive person. You would have thought your oncologist would be the first person to direct you to an appropriate consultant for you osteoprosis 🙄 But I also think your GP would be able to do that. I have had several falls that should have resulted in a fracture but so far I have been lucky. I don't take any prescribed drugs but supplements tailored for OP. Fingers crossed so far. I am thinking of trying the alternative EMS scan which is apparently more accurate than a DEXA. You might like to have a look there, I think it's around £200 osteoscanuk.comThey may well be able to offer support about what you could do to help the situation. Keep positive, I'm convinced it helps 😀 xx
Thank you! I think when you get an incurable cancer diagnosis maybe that makes you (oddly!) a bit more positive about other hurdles in life?! May I ask what supplements you take? I had a nutritionist when I was first diagnosed so I take about 20 each day but that’s for cancer. As my former employer paid for her, this time I wil have to go it alone! But I think some of the supplements recommended eg Vit D3,K2 and magnesium I already took and I have now added calcium but from seaweed as I don’t want to create oxidative stress which is not good for cancer! I have seen some articles about side effects of biphosphenates that look scary but then if I took supplements and got this looks like I need them🥴
Unless cancer medication only affects the spine and not the hips (unlikely), those results don't look right. Osteoporosis is systemic, meaning the whole body is affected, so spine and hip t-scores (which show bone loss compared to a 30 year old) should be similar. That's a huge discordance between your spine and hips, given that your hips must be -2.4 or better to be in the osteopenia range. If you can access it and afford it, I would recommend getting a REMS scan, which is more modern technology and more reliable than DEXA. It's possible for there to have been an error with the spine or the hip results (more commonly it happens with the spine because it's much harder to align correctly), so it may be that you have osteoporosis at both sites, or it may be that you only have osteopenia. REMS scanning is available from osteoscanuk.com (including a consultation with an orthopaedic consultant who specialises in spines) and also from a physiotherapist in Amersham at profortis.co.uk/bone-health
Thanks so much for that. That’s great advice. The meds I take don’t just affect one site so I have no idea why the difference. I have just had my insurers sign off for me to see a rheumatologist so will look in to that centre and query the results of the DEXA scan. My insurance is just for cancer so aside from an initial consultation, I will proceed with NHS so I wonder if I can get a REMS scan with them but to be fair it was NHS who recommended the test not my oncology team of three years!
Unfortunately REMS is only available privately and isn't yet officially recognised by the NHS. Some doctors accept the results, others don't! I have no idea what my doctor thinks, but I've had 2 REMS scans and sent him the results both times. I don't think I'll have another DEXA because my spine result was so wrong with that!
OK I will def still look into it so thank you again. It’s quite concerning how diagnostic and treatment protocols differ between private and NHS. I never realised the disparity until I got sick.
My only concern with private is to make sure it's someone reputable, because by its very nature, private means money-making. Nick Birch, who runs the Osteoscan clinics, is a qualified orthopaedic consultant who used to work in the NHS, where he was very highly respected. Obviously he's making money from his clinics, but everyone seems very impressed with him, and there's lots of research into REMS scans now, showing that they're comparable to DEXA in terms of accuracy when done properly, but because they're more fully automated they're far less open to error. Nick has seen lots of examples of spine results being wrong because the spine wasn't lined up properly. He isn't totally anti medication, but will only recommend it if he feels it's really necessary, and also gives lifestyle advice (diet, exercise, supplements). The REMS scans run at the Profortis clinic haven't been running for as long and are done by a physiotherapist, but I've come across a few people who've been there and also been very happy with it.
Hi. My GP was totally dismissive of my Dexa Scan result which was minus 4.7 in one hip and my spine. He would not even look at it. I then spoke to a nurse at the Royal Osteoporosis Society who explained the Z score was more important than the T score. I was terrified of the result showing severe osteoporosis and needed to understand as much as I could about the condition. I have had a follow up Dexa scan which was taken on the same machine yet showed a nonsensical result when compared to my first.
I've had a REM scan, I've seen a Rheumatologist privately, had lots of help from kind members of this and other websites....plus I've done plenty of research of my own.
I'm 69 years old and totally medication free. Since diagnosis I've had several falls, only one of which resulted in a wrist fracture from crashing hard into another couple whilst doing a really fast rock n roll. My attitude towards Dexa Scan results is now as contemptuous as my GP. The resulting anxiety was not good for my bones.
My top tips .. use you tube and google to make a list of every known factor to help healthy bones and another list of things which are not good for bones. Do more of the good stuff and less of the negative. Our lists are individual. An example from my list is that I no longer drink fizzy drinks. From the helping list, I take regular, long baths with plenty of magnesium flakes or epsom salts. Apparently our body absorbs magnesium better through the skin than our digestive system.
With exercise it is important to maintain our range of movement although keep it gentle and ditch the rigorous. The movements to be careful of are traction movements, for instance sit-ups and twisting of the spine. Do more weight bearing exercise e.g. walking, lifting light weights, anything which helps increase or maintain muscle. You'll come across what is appropriate for you if you make your lists. Posture is important, I've changed my furniture and no longer sit on my sofas.
I have my own vibration platform yet would not use those in gyms as I'm a little afraid of their size and power. I also bought a weighted vest, just a cheap one from argos, which I wore initially on my walks. From further research I now realise that depending on a persons prior injuries, the position of the extra weight is important to get right....so I no longer use it as I've had 2 spinal compression fractures and have no wish to risk doing harm instead of good. I did stop doing yoga and instead I do Tai Chi, rebounding, good old fashioned skipping plus other toning type exercises. Oh I'm still dancing which is also good for our spirit.
Be careful about taking calcium supplements, I've stopped but please do your own research and draw your own conclusions.
This is so helpful - thank you very much. The fact you live medication free is compelling. As I already take meds for cancer, part of me would prefer not to take more but another part of me would like to take so I can ‘resolve’ as soon as. Upshot I need to think more and undertake more research!
I see you have already got some very good advice here, but I just wanted to add a warning. If your rheumatologist recommends Denosimab injections do not start them until you have finished your research. Denosumab gives very good results for lots of people but once started it is difficult to stop. I did not understand this until after my first injection was given, and when I stopped I got rebound fractures in my spine, even though I was taking another medication
Thank you. That is very good advice. That is also prescribed when breast cancer spreads to bones (not relevant for me) and it was interesting that my oncologist said they would only probably suggest biphosphonates. If that is raised I will definitely ask about that.
Hi! Just to say a friend of mine had stage four breast cancer and she apppears to be free of it now. She lost all her hair with the treatment but it’s all grown back lovely now. She has been back working for a long time now. I hope that you will get over yours too.
Thanks. I am what they call NEAD ( no evidence of active disease) which is as good as it can get for someone like me. With stage 4 it’s sadly incurable but treatable. It will come back and then I change treatment lines but with treatment comes side effects - osteoporosis being one!
JKMS, bones benefit from resistance exercise, especially weight bearing. However, you best put yourself in the hands of a trainer experienced with osteoporosis in a cancer patient. Likewise at this critical time ask for a referral to a registered dietitian nutritionist who can also review your supplements and guide your diet. One supplement to research shown to be beneficial for bone health and breast cancer is annatto tocotrienol.
Thanks. I have spoken to my former nutritionist and once the consultant recommends a course of action, I will set up some sessions with her to review and make recommendations. She was invaluable in allowing me to navigate the cancer minefield and so I’m hoping she will be of help now🤞🏻
it’s a tough call because apparently these bone meds help to not get fractures, yet when I did research on the bone drug I was on for 2 years, that drug’s own website stated that the risk of fracture goes up the longer you’re on the medication! It also mentioned risk of leg fracture. I don’t have any leg issues so this was not good news to me. Osteonecrosis risk is another gem with this medication.
I made the executive decision to go off of it, despite the concerns of my oncologist. I’ve been looking into other things like vitamin K, borax, bicarbonate / baking soda, alkalizing the diet. I’ve cut the body / back and bone pain already by 70% in the past week just using a baking soda protocol alone.
I hope you find the answers that will benefit you the most!
Sure, I worked up to doing 2 tsp baking soda and roughly 2 tbsp of molasses (or less) 3-4X day on an empty stomach.I combine these drinks with mostly alkaline foods and eliminating most acidic foods (bread, caffeine etc) it keeps your ph higher, and more alkaline.Throughout the day I just use the ph strips to keep my ph balance to about 8.0 - 8.5, this is the ph at which cancer can’t survive for long.I’ll do about 12 days total, then stop for a week. Currently I’m on day 7 and my pain gets better each day; today I really don’t have too much pain at all, maybe 15% of what I had a week ago~I don’t know yet what this will do to my mets etc, but I am 100% certain that it’s doing wonders for the pain!Dr Sircus talks about it here:drsircus.com/cancer/vernon-... is how Vernon J did it, he’s one of the ones who cleared himself cancer and of bone:
Thank you for that. I’m so glad it’s reducing your pain. I think there’s a lot to be said for helping yourself and believing in what you are doing. Dare I ask what it tastes like?
I also have stage 4 ovarian and have ongoing treatment, 2 lines of chemo so far which really rips into your bone density. I had a referral for a dexa scan from my oncologist and subsequent treatment with alendronic acid infusion. I think you need to insist that they refer you or your GP can if they are more proactive.
As you will have more treatment for your cancer they need to fit your bone density treatment around your rads/chemo.
Don’t let them write you off, we may be living with cancer but we also want to exercise and have a normal life!! 💪 💪💪
Thanks Lyndy and totally agree about being your own advocate! I did manage to see a rheumatologist and the bloods confirmed my vit d and calcium levels all good. We have decided to hold fire on any other meds for now and then have another scan in a year or so. Not sure if this is the right decision but he respected my preference not to add more meds right now if I can help it. So I now need to read as much as I can and follow the advice of all of you and see how I feel! Oh yes and avoid falling over and bungee jumping (oddly I was considering that on a recent trip!). And I really wish you well on your own healing journey. Stage four cancer can certainly take its toll can’t it? And on that note - off to a yoga class!
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