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User
Posted 26 Aug 2018 at 18:15

I was diagnosed with prostate cancer and had surgery to remove my prostate in 2014.

My PSA was negligible ( <0.05) for more than 3 years after that but by October 2017 it had reached 0.2 which constituted a bio-chemical relapse.

I was immediately placed on Hormone Therapy with Prostap monthly injections which have now been changed to 3-monthly injections.

This is ongoing but from the start of HT my PSA quickly went back to <0.02 where it remains to this day.

I recently went to my GP complaining of back pain, and pain in my buttocks and down my leg, which I put down to over-exercise / sciatica.

My GP sent me off for a MRI scan on my lumbar spine, which was done in a mobile scanning unit by an agency contracted by the NHS.

On Friday evening I was called by my GP who advised me that the radiology company had contacted her to say they were concerned by something showing up on the scan and they were worried that it might be connected to my prostate cancer.

She didn't yet have the full report to hand but her call scared the living daylights out of me.

I had always assumed that with a negligible PSA that my prostate cancer was well under control so I was taken aback and indeed shocked by all this.

Has anyone experienced a similar thing ?

Any advice on this would be appreciated.

 

 

 

 

 

 

 

 

 

 

User
Posted 27 Aug 2018 at 07:47
Hi Pete

You don't mention if you have had a bone scan or Gleason /T staging score either? The very rare low PSA cancers tend to be high grade Gleaston because the additional mutation has inhibited their capacity to produce PSA.

Obviously you need the interpretation if the MRI ASAP but I too have been troubled with Hip / sciatic / leg pain and it was only bone / xray scanned last year and pronounced "arthritic". It is steadily getting worse so I to had a visit to my GP recently and asked the question point blank "Is it cancer" I was told that bone cancer pain keeps you awake at night and generally makes you very poorly. It also tends not to limit movement whereas arthritic / sciatic pain causes "stiffness" / worse pain on movement.

This fits with my experience of my Dad's PC that went to his leg spine and ribs. He had a nagging pain (cobstant pain killers ora morf etc) in his leg that ultimately had to be pinned (which cured the pain), the cancer in his spine caused him no pain until the day a spinal compression killed him.

Kind (not!) of your GP to call you on Friday and ruin your weekend without any means to give you the info you need!

User
Posted 26 Aug 2018 at 23:34

It is quite normal for HT given after RP to drop PSA very considerably which could be for months or years. How long varies much from man to man. It is not usual for PCa to spread without some increase in PSA but it can happen. In quite rare cases it has been found to have spread with zero PSA. However, try not to worry about the scan as what is in question might well be due to something else

Edited by member 26 Aug 2018 at 23:36  | Reason: Not specified

Barry
User
Posted 27 Aug 2018 at 08:28

Not had a bone scan but had a pelvic CT scan prior to RT this February. 

User
Posted 27 Aug 2018 at 08:48
OK you should put all that info in your profile too as it helps when comparing "notes"..

Well clearly your cancer WAS expressing PSA so I think you can take some comfort from your continued low PSA.

Please keep this forum updated when you do get to the bottom of the MRI results.

User
Posted 21 Sep 2018 at 23:10

I was on HT (Prostap) from January 2013 to November 2015, I had a DEXA scan which showed I had slight bone thinning.  I was prescribed Adcal-D3 tablets which I take twice daily.  I had another scan this year and I was advised that I had Ostopenia which is mid-way but not Osteoporosis, both my oncologist and GP said I should continue with the tablets and take gentle exercise to help.

User
Posted 22 Sep 2018 at 15:28
I think men receiving HT, particularly when expected to have this for a long time, should be advised on supplements to help counteract the effect principally to bone and such advice is not always provided. Regular but not excessive exercise can also help directly and also indirectly by offsetting weight gain that HT often leads to, thereby placing more load on bones.
Barry
User
Posted 10 Jan 2019 at 10:19
I hope the results don't take too long although I am sure it will be fine. You do seem to have a pattern of hip / back / leg pain which suggests more likely a sciatic nerve jangling or similar, perhaps linked to the hormones.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Jan 2019 at 21:39

Hi

I’m not a doctor but i think the first one is ok, simply indicating that you have had a fracture and the scan has shown that. The second one seems inconclusive and needs someone to interpret. I guess that they might want to order an MRI or some blood tests to see if there are any markers to indicate rises in ALP or other known cancer markers.

I can well understand why you would be worried, but its not certain that it is a met. i hope the oncologist can advise you sooner rather than later.

Devonmaid

User
Posted 24 Jan 2019 at 08:55

I guess your oncologist is right though really, because now there is a worry when there shouldn’t be. I was given a blood test recently that showed low iron stores and that caused tests and worry and the GP said she was sorry she’d done the test in the first place as blood chemistry can do this for no apparent reason, and so it turned out for me. Not quite the same but the point is you wouldn't have had this worry at all without the scan. 

As the oncologist says with a PSA so low it'll be somthing else. 

Good luck

Devonmaid xx

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User
Posted 26 Aug 2018 at 23:34

It is quite normal for HT given after RP to drop PSA very considerably which could be for months or years. How long varies much from man to man. It is not usual for PCa to spread without some increase in PSA but it can happen. In quite rare cases it has been found to have spread with zero PSA. However, try not to worry about the scan as what is in question might well be due to something else

Edited by member 26 Aug 2018 at 23:36  | Reason: Not specified

Barry
User
Posted 27 Aug 2018 at 06:38

I forgot to add that I also had 33 sessions of pelvic radiotherapy from February to April this year.

User
Posted 27 Aug 2018 at 07:47
Hi Pete

You don't mention if you have had a bone scan or Gleason /T staging score either? The very rare low PSA cancers tend to be high grade Gleaston because the additional mutation has inhibited their capacity to produce PSA.

Obviously you need the interpretation if the MRI ASAP but I too have been troubled with Hip / sciatic / leg pain and it was only bone / xray scanned last year and pronounced "arthritic". It is steadily getting worse so I to had a visit to my GP recently and asked the question point blank "Is it cancer" I was told that bone cancer pain keeps you awake at night and generally makes you very poorly. It also tends not to limit movement whereas arthritic / sciatic pain causes "stiffness" / worse pain on movement.

This fits with my experience of my Dad's PC that went to his leg spine and ribs. He had a nagging pain (cobstant pain killers ora morf etc) in his leg that ultimately had to be pinned (which cured the pain), the cancer in his spine caused him no pain until the day a spinal compression killed him.

Kind (not!) of your GP to call you on Friday and ruin your weekend without any means to give you the info you need!

User
Posted 27 Aug 2018 at 08:27

Thank you Francij1 for your very helpful reply.

My PSA prior to my surgery in 2014 was 8.9.

After surgery I was staged at T3a and I had a Gleason score of 7 (4+3).

The staging was due to extra prostatic extension but all margins were clear.

User
Posted 27 Aug 2018 at 08:28

Not had a bone scan but had a pelvic CT scan prior to RT this February. 

User
Posted 27 Aug 2018 at 08:48
OK you should put all that info in your profile too as it helps when comparing "notes"..

Well clearly your cancer WAS expressing PSA so I think you can take some comfort from your continued low PSA.

Please keep this forum updated when you do get to the bottom of the MRI results.

User
Posted 27 Aug 2018 at 09:27

I will certainly keep you posted. Many thanks for your help. Much better than the unthinking GP.

User
Posted 28 Aug 2018 at 21:26

My GP has now reported back to me that the radiologists have indicated in their report that there is swelling in the area of the sacrum and they are concerned that this is to do with my prostate cancer.

The radiologists are not aware that my PSA is virtually zero.

I had been exercising mainly on my treadmill rather over- excessively and I feel that this may have caused an injury to my lower back.

Having stopped the excessive exercise and rested for several weeks now, the pain has almost disappeared as of now.

Anyway, I have been referred for an urgent CT scan and my GP has also referred the matter to my Oncologist.

My GP has promised to call me again tomorrow after she has hopefully spoken with the Oncologist.

Who knows what will transpire ?

I am rather nervous right now !!

 

 

 

 

Edited by member 28 Aug 2018 at 21:27  | Reason: Not specified

User
Posted 01 Sep 2018 at 06:20

My GP did manage to speak to my Oncologist who advised her that bearing in mind all factors to do with my case ( not least a PSA of practically zero ) that in his opinion it was highly unlikely that the findings of the MRI scan would have found anything nasty.

Anyway, my case is being discussed at the MDT meeting next week where they will review my MRI scan.

I will also be having a CT scan which will hopefully allow them to get to the "bottom" of it so to speak.

For the time being I am feeling a little more relaxed about things. 

 

User
Posted 16 Sep 2018 at 13:33

Had my CT scan last Thursday but not had any official communication from my Doctors yet. My case was discussed at a recent MDT meeting and from what I can deduce from the cryptic communication from my Nurse specialist, they are thinking it is not spreading prostate cancer. 

It appears to be a minor sacral fracture due to bone weakening caused possibly by RT or HT or both.

The recommendation is to have a further scan in 3 months and stop HT for a while.

As I said my doctors have not contacted me officially so I could be a little wide of the mark.

But I am now feeling quite positive about a situation that had me panicking a couple of weeks ago.

 

 

Edited by member 16 Sep 2018 at 13:35  | Reason: Not specified

User
Posted 16 Sep 2018 at 14:05
Interestingly I had always assumed that the tibia fracture my dad had while on HT was as a result of cancer invading the bone. I discussed this with my urologists (luxury of seeing him privately) and he said it was most likely the HT that had caused it.
User
Posted 16 Sep 2018 at 14:08
A classic case of the treatment doing more damage ( at this stage anyway ) than the disease ?
User
Posted 16 Sep 2018 at 14:33
A man on HT is put into menopause - he will be at increased risk of osteoporosis just like any menopausal woman. I am surprised that this isn't explained more clearly to men when they start on HT, although it is probably stated on the patient information leaflet. It isn't simply the hormones, it is the loss of testosterone so orchiectomy has the same risk.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Sep 2018 at 15:52

Yes my PSA is < 0.02 and testosterone < 0.1 but the risk of bone issues was never explained to me face to face.

And there was I pounding the treadmill like crazy. 

No wonder I have run into problems.

I probably read about it somewhere previously but my real focus was on the disease and not on peripheral issues.

User
Posted 16 Sep 2018 at 23:45
Weight bearing resistive exercise is what is needed I believe?

Pounding anything is probably not a good idea!!

User
Posted 21 Sep 2018 at 20:27

At this time nobody has deigned to speak officially to me about my recent MRI and CT scans.

So I am still making educated guesses about my condition.

I called my Oncologist yesterday and got through to his secretary. She said she would tell him I called and “ hopefully” he would call me back. 

No call came today but when I got home there was a letter for a Bone Density Scan appointment.

Again I’m guessing that they want to assess the damage to my bones if any, caused by the Hormone Therapy.

I just wish someone would speak to me and explain what is going on.

 

 

Edited by member 21 Sep 2018 at 20:29  | Reason: Not specified

User
Posted 21 Sep 2018 at 23:10

I was on HT (Prostap) from January 2013 to November 2015, I had a DEXA scan which showed I had slight bone thinning.  I was prescribed Adcal-D3 tablets which I take twice daily.  I had another scan this year and I was advised that I had Ostopenia which is mid-way but not Osteoporosis, both my oncologist and GP said I should continue with the tablets and take gentle exercise to help.

User
Posted 22 Sep 2018 at 15:28
I think men receiving HT, particularly when expected to have this for a long time, should be advised on supplements to help counteract the effect principally to bone and such advice is not always provided. Regular but not excessive exercise can also help directly and also indirectly by offsetting weight gain that HT often leads to, thereby placing more load on bones.
Barry
User
Posted 25 Sep 2018 at 11:57
Received a copy of a letter from my Oncologist to my GP - says metastatic disease cannot be ruled out 100% but is highly unlikely in my case at this time. Goes on to say the most likely diagnosis of my recent back pain is insufficiency fractures, requiring analgesia only if required. DEXA scan to rule out ( or in ) Ostopenia /Osteoporosis, planned for October 10 and follow up MRI on my sacrum will take place in the next month or two. Looking good at this time.
User
Posted 15 Oct 2018 at 22:11

Had DEXA scan on October 10. Just waiting for results.

User
Posted 26 Oct 2018 at 17:20
Finally got my DEXA scan results today.

Bone density is normal in hip and spine ranging from +0.3 to - 0.1.

So HRT and HT have not decimated my bones yet.

Having follow up MRI on sacrum on Nov 6.

User
Posted 30 Oct 2018 at 07:55

Highly unlikely at a fractionated PSA to be what you fear. The only way of definitely knowing is a scintographic bone scan but I doubt that will be offered quite yet. When I was at that stage, every ache and pain in my back, hips and legs was bone mets in my brain. It’s a hard one to get to grips with but you will brother, you will.

 

bazza  

User
Posted 30 Oct 2018 at 08:14
Thanks Bazza

Yes, this disease does get inside your head and I think about it almost every minute of every day.

I am now in Year 5 and it gets worse if anything.

My next big pressure point is when they stop HT and I will then see if the SRT has been successful.

That will be a biggie for me.’

User
Posted 14 Nov 2018 at 08:18
My follow up MRI scan on sacrum now rescheduled to Nov 22.

Back problem now seems to have cleared up so not too worried.

However, I am not counting my chickens.

User
Posted 19 Dec 2018 at 21:17
Had my 6 monthly Oncologist review today at which my latest MRI scan on my spine was discussed.

The findings were positive - just some insufficiency micro fractures which are not considered to be of any great consequence.

So, all’s well that ends well regarding this little episode.

On another note I was told today that my next hormone injection in January will be my last for the time being.

So next year could be an interesting rollercoaster type of year. I will discuss this in one of my other threads.

User
Posted 10 Jan 2019 at 08:32

Saw my GP on Tuesday complaining of leg pain. Bearing in mind my history he referred me for a bone scan which I have never had before.

Thanks to a cancellation I had the scan yesterday. Bit of a long drawn out affair, there being a 3 hour wait after the injection until the actual scan.

But all done now and just have to wait for the results.

 

 

 

User
Posted 10 Jan 2019 at 10:19
I hope the results don't take too long although I am sure it will be fine. You do seem to have a pattern of hip / back / leg pain which suggests more likely a sciatic nerve jangling or similar, perhaps linked to the hormones.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jan 2019 at 10:54
Many thanks Lynn. I hope you’re right. With my PSA tending towards zero I wouldn’t expect anything nasty.
User
Posted 17 Jan 2019 at 10:51

So I got the bone scan result which I believed is supposed to answer questions. However it raised questions and pretty big ones.

Here is what it says :-

"Intense uptake in both sacral alae, in keeping with the known bilateral sacral insufficiency fractures.

Focal uptake in the right inferior pubic ramus, which appears more diffuse than one would expect for a fracture. Raises the possibility of a metastasis. Bone scan otherwise normal."

What the hell is one supposed to deduce from that ?

Talked to my GP who ordered the scan and he seemed pretty relaxed about it but it's not his body is it ?

He has passed the scan result on to my Oncologist who I have been chasing for a comment.

I await his opinion - somewhat anxiously.

Wow !!!  And here was I thinking bone scans provided answers.

 

 

 

 

 

User
Posted 17 Jan 2019 at 21:39

Hi

I’m not a doctor but i think the first one is ok, simply indicating that you have had a fracture and the scan has shown that. The second one seems inconclusive and needs someone to interpret. I guess that they might want to order an MRI or some blood tests to see if there are any markers to indicate rises in ALP or other known cancer markers.

I can well understand why you would be worried, but its not certain that it is a met. i hope the oncologist can advise you sooner rather than later.

Devonmaid

User
Posted 18 Jan 2019 at 17:51

Thank you Devonmaid

Yes I knew about the first one but the second one took me by surprise.

Despite chasing it up with my  Onco’s secretary I have not heard anything from him.

Maybe he’s chilled about it like my GP but I wish he would tell me so I can be chilled too.

😎

 

 

User
Posted 24 Jan 2019 at 08:27

Lol, my Oncologist wrote a stroppy letter to my GP asking why he sent me for a bone scan. Said that since my PSA is effectively zero it would be impossible to have bone mets.

Not sure about that cos nothing is impossible but interesting to witness a bit of anger , irritation or rivalry ? between the various branches of the medical profession.

User
Posted 24 Jan 2019 at 08:55

I guess your oncologist is right though really, because now there is a worry when there shouldn’t be. I was given a blood test recently that showed low iron stores and that caused tests and worry and the GP said she was sorry she’d done the test in the first place as blood chemistry can do this for no apparent reason, and so it turned out for me. Not quite the same but the point is you wouldn't have had this worry at all without the scan. 

As the oncologist says with a PSA so low it'll be somthing else. 

Good luck

Devonmaid xx

User
Posted 24 Jan 2019 at 18:20

Thanks Devonmaid

I tend to agree.

This is not the first time that my GP surgery has caused me undue worry and stress by assuming that every ache and pain in my body may be related to Prostate cancer.

I guess they are being ultra cautious but they don’t seem to look at all the facts and evidence in front of them before acting.

I think they are a bit prone to knee jerks.

 

 

 

 

 

User
Posted 10 Jun 2019 at 15:32

I don’t know if it is coincidental but since my hormone therapy expired 7 weeks ago, I am now pain-free.

No leg or back pain and I am now exercising vigorously on a daily basis.

I have also lost around 8 kilos in surplus weight since HT expired.

 
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