ARE YOU GETTING DEXA SCANS?

User

Posted 13 Apr 2015 at 15:24

Dear All,

I've just had my latest DEXA scan done this morning, and realised we haven't mentioned this subject in a long time.

If you're being treated (or have been) with Hormone Therapy such as Zoladex, Prostap etc, one of the biggest potential side effects is Osteoporosis (thinning of the bones).

It was only through chatting on PCa forums in the USA 8yrs ago that I learned how necessary these scans are.

My idiot (ex) urologist NEVER routinely refers his PCa patients for a the bone density scan (DEXA), and he wouldn't refer me when I asked.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

Thankfully, my GP referred me for one, as I had been on HT for 2yrs at that time. The result was 'borderline osteoporosis', and I was prescribed 'Calcichew' Cholecalciferol 400unit/Calcium carbonate 1.5 tablets, one in the morning and one in the evening.

Since then I've had a DEXA every two years and the results get better each time.

I can only put this down to my having also taken a supplement capsule of Vit D3 5000 i.u. daily for the past 7 or 8 years, as many others here do too.

There was an extremely 'busy' topic on Vit D3 some years ago, and I linked it to these new forums here:

VIT D3

Good Luck,

George

Edited by member 13 Apr 2015 at 17:58 | Reason: Not specified

B2PCa

User

Posted 13 Apr 2015 at 15:24

Dear All,

I've just had my latest DEXA scan done this morning, and realised we haven't mentioned this subject in a long time.

If you're being treated (or have been) with Hormone Therapy such as Zoladex, Prostap etc, one of the biggest potential side effects is Osteoporosis (thinning of the bones).

It was only through chatting on PCa forums in the USA 8yrs ago that I learned how necessary these scans are.

Since then I've had a DEXA every two years and the results get better each time.

I can only put this down to my having also taken a supplement capsule of Vit D3 5000 i.u. daily for the past 7 or 8 years, as many others here do too.

There was an extremely 'busy' topic on Vit D3 some years ago, and I linked it to these new forums here:

VIT D3

Good Luck,

George

Edited by member 13 Apr 2015 at 17:58 | Reason: Not specified

B2PCa

User

Posted 13 Apr 2015 at 19:57

Important point George. Good to mention it.

My OH had the same bone checks every 2 years and been put on the Calcichew etc like yourself as he was also deemed 'borderline'.

Hope others are getting this checked out too. After all this Pca the last thing any of us needs are other issues to contend with!

ATB

Alison

User

Posted 14 Apr 2015 at 11:49

I'm seeing my GP on Thursday and it's on the list...

User

Posted 14 Apr 2015 at 11:54

Never had one George but with 6+ years of Zometa I reckon my bones are like concrete http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

Nil desperandum

Allister

User

Posted 14 Apr 2015 at 14:51

My dad (86) is on HT. He has suffered vertigo before, but had another bout yesterday. Could this be related to HT?

Paul

Stay Calm And Carry On.

User

Posted 14 Apr 2015 at 15:18

Hi Paul,

I'm sure HT can cause dizziness, but of course your father would have to have other possibilities ruled out.

Here's a link to Zoladex side effects, mentioning dizziness:

Goserelin - implant, Zoladex

B2PCa

User

Posted 14 Apr 2015 at 17:28

Hi George,

I raised this with one of the oncologists last year after Neil had a spontaneous arm fracture. I think she thought I was mad and that I meant a different sort of scan but I knew darn well what I wanted and why. Ended up chasing up having it done privately but of course events overtook us,

Regards, Fiona.

User

Posted 14 Apr 2015 at 18:38

Thanks for the heads up George , i see my Onco in 4 weeks so i will ask about this now i am on Enzalutamide and HT jabs http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

User

Posted 16 Apr 2015 at 13:21

All sorted, just waiting for the appointment :)
Cheers George!

User

Posted 18 Apr 2015 at 10:01

George, Thanks for this “ enduring the pain and misery of broken bones, bent spine, and all that comes with osteoporosis.” :) :)

Most likely too late for me so a note of caution and it might be said this is an excuse for not taking action. However when various medics say pretty much the same “you’re doing extremely well” but will never say cure there is mind set of what the hell PCa will get me before other ailments start getting problematic. So I ignored the symptoms.

With all my refurb work it was not unexpected my hands would start playing up. So for 5 years I ignored the discomfort from middle joints onwards which actually stared to clear up but then it moved to lower finger joints. So whilst at doc’s I passed the comment re my hands. After examination came the diagnosis osteoporosis. I thought not so bad but the downward spiral is at present going downhill at a pace. If I had taken action earlier would I be at the stage I’m at now is an unknown but I think it’s fair to say I wouldn’t be any worse if I had. I would add to George’s comment as I know he like I felt the cold due to RT/HT. So is cold an early warning sign and or a reason to be more aware and take action?

As regards hospital scans. The gory bit - not so long back I nearly took the top of my finger off with a 5 foot crowbar (it actually didn’t hurt as much as hitting it with an hammer). Because I’m over 65 there is a policy of passing your notes on to CNS to see if it’s deemed a bone scan is required. However after mentioning HT the consultant passed the comment your injury is down to brute force not HT (fair comment). I’m guessing the CNS made the same opinion but then I doubt if she was made aware of my past HT so no scan.

I go right back to the start. Do not make the mistake I did with the ‘mind set of what the hell PCa will get me before other ailments start getting problematic. So I ignored the symptoms.” Get checked out.

Best of luck to all

Ray

User

Posted 18 Apr 2015 at 21:39

Hi George

Cold: on a scale of 1 to 10 I've recovered to level 2. Pre RT/HT I was one of the last to put a jumper on now it's hardly ever off and I'm one of the first to put a coat on. I'm very careful of getting what I call scary cold as it can take hours to get warm again.

Here's hoping the veteran club membership continues to grow.

Good luck to all.

Ray

User

Posted 19 Apr 2015 at 21:37

Hi George, that scan is new to me i will ask for when i next see my unco as i am now getting joint pain in my fingers

Barry

User

Posted 20 Apr 2015 at 17:25

I requested a dexa scan last Thursday, letter arrived today and had a choice of appointments from tomorrow onwards.
That's what I call service!

User

Posted 30 Apr 2015 at 17:16

Hi George
Im only 4 months into HT so maybe bit premature but nothe less thanks for the recommendations its on my questions list for the Onco.

Just as a matter of interest my blood tests do include Bone Profile measures eg Albumin, Calcium Corrected Calcium and Phosphate. Are these instead of bone scan or just a pointer to when a bone scan should be had.

Cheers

Paul

User

Posted 30 Apr 2015 at 17:33

Hi,

I have taken calcium tablets since I was put on hormone treatment. I read in the PCUK Hormone Therapy booklet that it was important to do this and my GP agreed.

I think it's something that should be standard practice if you're on hormones.

Steve

User

Posted 30 Apr 2015 at 17:40

I've been on Prostap since January 2013 and recently my legs ache a lot - could this be connected?

Arthur

User

Posted 30 Apr 2015 at 18:44

George,
Are you saying that going on treatment (ad cal D3 & alendronic acid) will / may improve things?
I am running under the impression that it will halt the decline but I wasn't given the idea that it could fix things.
If it does then happy days indeed!

All the best

Kevin

Show Most Thanked Posts

User

Posted 13 Apr 2015 at 19:57

Important point George. Good to mention it.

My OH had the same bone checks every 2 years and been put on the Calcichew etc like yourself as he was also deemed 'borderline'.

Hope others are getting this checked out too. After all this Pca the last thing any of us needs are other issues to contend with!

ATB

Alison

User

Posted 14 Apr 2015 at 11:49

I'm seeing my GP on Thursday and it's on the list...

User

Posted 14 Apr 2015 at 11:54

Never had one George but with 6+ years of Zometa I reckon my bones are like concrete http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

Nil desperandum

Allister

User

Posted 14 Apr 2015 at 13:50

Allison,

Your OH certainly had an enlightened doctor. If only they were all like that.

You know, I was talking to the radiographer doing my scan yesterday, and she was saying how absurd it was that PCa men on HT weren't being referred routinely.

Her opinion was that a simple £60 scan like that would save the NHS a fortune in the long run, and prevent us all enduring the pain and misery of broken bones, bent spine, and all that comes with osteoporosis.

Sadly, there are quite a few men here who are experiencing that.

Kevin, glad to hear you're seeing your doctor this week and can ask for the referral.

Allister, yes, you're bones are made of concrete and the rest of you is iron and steel.

I've never met a guy like you!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

Good luck with getting the right treatment now.

George

B2PCa

User

Posted 14 Apr 2015 at 14:51

My dad (86) is on HT. He has suffered vertigo before, but had another bout yesterday. Could this be related to HT?

Paul

Stay Calm And Carry On.

User

Posted 14 Apr 2015 at 15:18

Hi Paul,

I'm sure HT can cause dizziness, but of course your father would have to have other possibilities ruled out.

Here's a link to Zoladex side effects, mentioning dizziness:

Goserelin - implant, Zoladex

B2PCa

User

Posted 14 Apr 2015 at 17:28

Hi George,

Regards, Fiona.

User

Posted 14 Apr 2015 at 18:11

Hi Fiona,

How many times can we continue to be flabbergasted by comments from doctors?

An how many more cases of poor treatment will we hear about on these forums?

It's unbelievable, but it's happening every day to someone fighting cancer.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

All the very best,

George

B2PCa

User

Posted 14 Apr 2015 at 18:38

User

Posted 16 Apr 2015 at 13:21

All sorted, just waiting for the appointment :)
Cheers George!

User

Posted 18 Apr 2015 at 10:01

George, Thanks for this “ enduring the pain and misery of broken bones, bent spine, and all that comes with osteoporosis.” :) :)

Best of luck to all

Ray

User

Posted 18 Apr 2015 at 12:52

Hi Ray,

It's always good to see a post from you. You and I are certainly members of the 'veterans brigade' now.
So sorry to hear about the osteoporosis. It's a crime that we aren't routinely given Dexa scans during long term HT.
There are so many men here who have been similarly affected, and that's shameful.

You mentioned the times you and I complained about feeling the cold intensely after HT and RT.
I don't know about you, but that's never left me. Sometimes, in warmer weather, I'll be wearing a short-sleeved shirt and make the mistake of going into to freezer aisles in supermarkets.
To me it feels like I've arrived in the arctic!

Perhaps it's a combination of muscle wastage and the not so good bones, both caused by HT.

You're pretty nonchalant about that horrible accident! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

If it had happened to me I'd probably have passed out.
Honestly, the slightest knock on my bones gives me acute pain.
Again, I think muscle loss has taken away the 'padding' which used to protect us.

One last thing about the usual comments from our consultants...'You're doing extremely well'.....but never mentioning 'cure'.
I think they're right.

After the first three or four years I dared to dream of a cure, but now I realise (and am happy with the thought) that my own target is to die with PCa, NOT because of it. And I aim to be around for a long time yet, despite the initial prognosis.

Many many guys here have now defied the very pessimistic predictions.
That gives us all hope, specially those new to the fight.

All the very best.

George

Edited by member 18 Apr 2015 at 12:53 | Reason: Not specified

B2PCa

User

Posted 18 Apr 2015 at 21:39

Hi George

Here's hoping the veteran club membership continues to grow.

Good luck to all.

Ray

User

Posted 19 Apr 2015 at 21:37

Hi George, that scan is new to me i will ask for when i next see my unco as i am now getting joint pain in my fingers

Barry

User

Posted 20 Apr 2015 at 17:25

I requested a dexa scan last Thursday, letter arrived today and had a choice of appointments from tomorrow onwards.
That's what I call service!

User

Posted 20 Apr 2015 at 18:22

Hi Barry,

You'd probably be better off getting your GP to refer you for the scan.

Look how fast Kevin (Chilled) has got his.

Excellent service? Definitely.

B2PCa

User

Posted 30 Apr 2015 at 15:32

Hi all,
Just had the result of my dexa scan.
I showing definite signs of osteoporosis so I'm on the calcium tablets as of today.

I'm on HRT (zolodex) and also currently on abbey plus prednisolone.
So as George says, get checked. You know it makes sense. :)

All the best

Kevin

User

Posted 30 Apr 2015 at 17:16

Hi George
Im only 4 months into HT so maybe bit premature but nothe less thanks for the recommendations its on my questions list for the Onco.

Cheers

Paul

User

Posted 30 Apr 2015 at 17:33

Hi,

I have taken calcium tablets since I was put on hormone treatment. I read in the PCUK Hormone Therapy booklet that it was important to do this and my GP agreed.

I think it's something that should be standard practice if you're on hormones.

Steve

User

Posted 30 Apr 2015 at 17:35

Hi Kevin, glad to hear you're on treatment already.

It goes to show that every single guy on hormone therapy should be referred for a Dexa scan every couple of years.
Since it's definitely not done routinely, the best way to get them is to ask your GP (and yours acted very fast!).

Paul, I don't see why you shouldn't have a Dexa scan now, and then you'd have baseline figures for comparison with the next scan in two years time.
As for your bloods, having the Bone Profile test included is excellent (not all doctors routinely add that test to the list).

I think most of us rely on that to see how our ALP (Alkaline Phosphate) level is doing. but calcium is a good one to keep your eye on too.

By the way, I got my own Dexa scan result a few days ago. Overall my bone density has improved yet again, but just one area is showing problems. My neck (which has troubled me for the past few years) got a low score, and I now have a diagnosis of Osteopenia in that area.

I wasn't surprised at that. It's all the wear and tear from carrying a huge organ up and down flights of stairs every night for so many years! Not many people can say that and not be joking.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

All the best,

George

Edited by member 30 Apr 2015 at 17:36 | Reason: Not specified

B2PCa

User

Posted 30 Apr 2015 at 17:40

I've been on Prostap since January 2013 and recently my legs ache a lot - could this be connected?

Arthur

User

Posted 30 Apr 2015 at 18:44

All the best

Kevin

User

Posted 30 Apr 2015 at 19:19

Hi Arthur.

Aching legs could possibly be a result of muscle loss through HT, but I'd have it checked out for other causes as well if I were you.

A few years ago I had awful leg pain after a walking comparatively short distances. Long walks were agony, having to stop and rest loads of times.

My GP was convinced whatever I had could be helped by a physio, and made an appointment, but in the nick of time I mentioned it to my consultant who put on a stethoscope, listened to the pulse in my inner thigh and told me I had a blockage.

It was femoral artery disease, and I now take angina type tablets daily.
Cause of that? Too many years smoking - not the HT.

Kevin, I can only assume that my improving bone density over the years is because of the large (5000 i.u) daily supplement of Vit D3 I've taken since about 2007. Of course, I would never say that for certain.

Take a look at the long discussion we had on this back then:

VIT D3

Edited by member 30 Apr 2015 at 19:20 | Reason: Not specified

B2PCa

User

Posted 04 Dec 2015 at 07:05

Hi All

I had a DEXA examination 2 weeks ago. I've been having Prostap injections since January 2013. I had phone call from my oncologist yesterday, it shows slight bone thinning. She said she would write to me with a copy to my GP but suggested I take calcium and Vit. D tablets in the meantime.

Will see if my GP contacts me if not I'll arrange a telephone appointment with him.

Arthur

User

Posted 04 Dec 2015 at 11:44

A very helpful pointer that ought to be a 'sticky' (One wonders why the mods never set up. Also, instead of being able to readily identify threads through the search facility, as was possible with the old forum format, doing so now, even using filters, throws up a lot of irrelevant material to plough through).

Barry

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