Just joined. Strange being on yet another forum. Dx with colon cancer last year. 8 months treatment, consisting of surgery, chemo, steroids for ant sickness and OmaPrazole (sp?) for reflux. Had dexa due to family history and age. 61 but slim and fit before last year! Menopause at 57 which thought would have protected me.
Now severely depressed as don't want OP drugs. Wanted to do my bucket list as have high risk of cancer recurrence. Only 70% five year survival. Maybe OP caused by cancer drugs? I had joint and bone pain during chemo, which has mostly gone. Aprt from wrists.
Just discovered this forum by chance. Haven't had any fractures yet, but would prefer to use natural treatments.
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Justme13
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I am sorry to read all that you have been through. I know of two people recently who have been diagnosed with OP after cancer treatment. Unfortunately chemo, steroids and omeprazole, taken over a length of time are all possible culprits in thinning of bones. Throw into the mix a family history of OP too does not help matters. My mum had OP.
The good news is you have not fractured. Do you have a copy of your DEXA? Patients are entitled to have their own copy. You can ask a receptionist at the surgery to run you off a copy. Your T scores may not be that bad?
Are you able to exercise for instance do daily walking? There are quite a few people on here that do not choose to take an OP drug. You make the final decision.
Have you thought to call the helpline and speak with one of the nurses. I have not used them but have heard nothing but praise about them.
I look forward to hearing from you again. At least you know you are not alone with it on this forum. I am on four different forums for conditions I have picked up along the way - can be time consuming but very helpful!
Hello Justme13. So sorry to hear of your ongoing health problems, it must have been such a blow to have an OP diagnosis on top of your cancer and I'm not surprised at how depressed you are. Do you know what your T-scores are (from your DEXA scan)? I know the initial reaction to being told you have OP is normally one of shock and disbelief, and it's normal to be scared of all the potential implications. I'm the same age as you and was diagnosed nearly 3 years ago at age 58 after an xray on a broken toe showed bone thinning. My DEXA report suggested a high risk of spinal fracture within the next 10 years, so I was very worried initially. I did take risedronate intermittently for a year, but gave up because it was causing too many side effects (mostly digestion related). Then I had a cancer scare (so almost your story in reverse), however fortunately for me no further treatment was needed following surgery.
One of the things I've learnt in the past 3 years is that the DEXA scan only shows bone density, which isn't necessarily the same thing as bone strength. Others on this forum have found that focussing on diet, supplements and exercise has increased their bone density, so this is now the approach I'm taking and I'm hoping my next DEXA scan will show an improvement in my own T scores. Do have a read of other people's posts about avoiding medication, as I'm sure you'll find it encouraging. I don't know what's on your bucket list, but hopefully the OP won't stop you doing most of it, maybe you'll still be able to do everything, though if there are things like parachute jumps on it you probably need to take medical advice!
Thanks met00 - sorry to hear you had cancer too. What is the difference between density and strength? I haven't had a fracture risk assessment. Letter just said high risk due to age and my mother's situation. I don't really know if she had OP, but she had curvature of the spine, but no hip fractures, and only when her breast cancer spread to her bones st 82 did she then develop fractures. So, maybe I won't fracture?
Hello Justme13. Density is, in very simplistic terms, how much "material" there is in the bones. For example, if you stuff a pillow with masses of foam it will be dense, but if you then remove half the amount of foam, the pillow won't be as dense.
The "material" in the bones might not be very strong, in which case, making it more dense may not make it any stronger. In fact, if the "material" used to make it denser is weaker than normal, healthy bone, you could end up making it weaker. Bisphosphonates help make bone denser by stopping old bone from breaking down, but the result of this is that far less new bone is created. Old bone may be weaker than new bone, in which case the denser bone isn't any stronger and could even be weaker.
There is also some evidence than some people (the study I read about related to an Asian population) have small bones that aren't as dense as that we'd consider "normal" in Western Europe and yet they appear to have stronger bones because they have fewer breakages, which can't be explained by lifestyle, diet etc. So the density of your bones, shown by the DEXA scan, may be an indication of the strength of your bones, but can't be guaranteed to be a 100% accurate assessment, because it's more complicated than that! At least, that's my understanding, but if I've got it wrong I hope other forum users will put me right!
My T-scores nearly 3 years ago were -3.2 in my spine and -2.3 in my hip. I was told this meant I had a serious risk of a broken back in the next 10 years, so I was pretty scared to start with, especially as a friend had fallen on ice and broken her back a couple of years previously! However, I now don't believe my personal risk to be that high. Apart from anything else, I was aware my OP could have been in part due to having been very sedentary for a long time, particularly in the previous year when a broken toe that failed to heal had almost completely put paid to any unnecessary walking for 12 months. I also had low Vitamin D levels which I've now finally managed to increase to over 75 nmol/litre, as recommended by a consultant I saw just after my diagnosis. In addition to supplementing and improving my diet, I've been very slowly and carefully increasing the amount of impact in my exercises over the past 3 years without any ill effect and can now jog short distances and do a minimal amount of skipping and very gentle jumping, all of which I was told to avoid! I wouldn't recommend anyone else take it on themselves to do this, but it's worked for me, which is why I no longer believe the gloomy diagnosis I was given!
In other words, having low DEXA scores doesn't necessarily mean you'll fracture. I hope that's answered your question and I haven't bored you too much with everything else I've added! Best wishes with whatever approach you decide to take.
Thank you so much for that information Met00. It is so reassuring. In some ways I wish I hadn't asked for the Dexa now. Trying to get travel insurance and also the stress of worrying about a fracture. Is there any way of finding out how strong the bones are in spite of poor BMD? I'm thinking maybe mine are strong as I did have a bad fall a couple of months ago and yet didn't have any fractures. Also carried heavy loads on my back in recent years, resulting in sacroiliac joint damage, physio, but no fractures. Obviously, now I will be more careful.
My printout from earlier in the year for vit d is - 25-OH vit d 99 nmol/L. This was after 2 weeks in the sun though!
It's worth having the t scores from the dexa scan as a guide though. If you focus on exercise, diet and supplements, next time you get a dexa scan you'll be able to check if your bone density has improved, or at least not got any worse.
I don't know if there's any way of measuring bone strength, but I suspect not. However, if you haven't broken so far, the risk of breaking probably isn't very high at the moment. It might be worth getting some advice on lifting safely and how to avoid bending and twisting. There's lots of useful info on the National Osteoporosis Society website, and their helpline nurses (phone or email) are very helpful too.
Thanks so much for your replies, Kaarina, Londinium, Met00
Yes I do have my dexa report. It dropped through the door when I was trying to book a holiday - so holiday on hold - floods of tears instead! No appointment At clinic - just told to see Gp for AA.
Spine
L2-L4 BMD 0.641 T score -3.691. Z score -2.282
Osteoporosis. BMD below average for age
Left Hip
Neck of femur BMD 0.508. T score -3.069 z score -1.790
Total hip Bmd 0.721. T score -1.808. Z score -0.865
Scan conclusions - osteoporosis
BMD below average for age
Didn't see nurse specialist- info from questionnaire and med notes.
Vertebral fracture assessment performed tv4 to lv4 - therein no obvious fractures were seen.
BMD density 27% below average for age at neck of femur and lumbar spine.
Current potential risk fracture high and merits bone protective treatment.
vitamin d levels and calcium satisfactory. Supplements not required.
I have to get bloods tested for various things, but did have Vit d tested earlier this year as advised by cancer nurse and I was 99 but had just been on holiday!
So, I guess my dexa is pretty bad...lol
I will phone the nurse helpline tomorrow for more info.
Met an 81 yr old lady this morning who told me I was 'very foolish' not to take AA if I had OP, as she took it for 5 yrs after fractured hip and no side effects and now had strong bones. Maybe she was just lucky....
I am sorry to hear that, Justme. Do give the helpline a call tomorrow and have a chat with one of the lovely nurses. I have not used this facility but have heard others say they found it of great help, to be able to unload to someone very knowledgeable on the subject and just talk and ask questions. Do let us know how you get on.
Hi there I am also on Ovacome site. From Chemo and steroids yes my bones have osteopenia. So took Fosavance as prescribed. However it does affect my digestive system and I am left with choice of a dodgy hip or dodgy tummy. I have restarted Fosovance again take it maybe every ten days instead of weekly.. Tummy is behaving but muscle pain can be bad. I will try yogurt as suggested by Rheumatologist and walking. Also wear supportive shoes for that extra support
Hi suzuki I was never told of OP as side effect of chemo etc. Was worried about neuropathy- but this is worse! I was already taking yogurt and on an anti cancer diet and walking each day. Starting dance lessons tomorrow! I wear orthotic in shoes for walking - have done for many years
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Do you have a copy of your DEXA? Patients are entitled to have their own copy. You can ask a receptionist at the surgery to run you off a copy. Your T scores may not be that bad?
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