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I thought I was OK, now a doctor has scared me!

User
Posted 04 Dec 2018 at 14:18

Hi Prostate forum pals! I was diagnosed about a year or so ago and have been doing fine. I am on 'Active Surveillance' and having regular PSA's every three months. So this has been average, with my 'scores' going up and down from 5.6 at the start and up to 6.3 in May this year, up again to 7.0 in August and back down again (thankfully!) to 6.0 in November.

My partner has been worried though, as with Bill Turnbull, recent newscaster on the BBC Breakfast programme, having been diagnosed and having seemingly similar symptoms to me. That is pains in the back, hips and legs etc. (Mostly caused I thought, by my ten-year bout of Osteo Arthritis). So off I toddled to the doctor to get stronger painkillers. They didn't help, so I went back yesterday, asking if maybe my Osteo Arthritis, had turned to the Rheumatoid variety. While not mentioning the cancer.

The doctor saw that I have PC and instantly said, (while arranging up to date X-rays on my lumbar/hips region), that maybe the cancer has spread to the bone, making it a lot more serious! He also said that, with my fairly steady PSA, which he called high, though I would have thought it low or average, that it shouldn't be that. I thought I was safe with a fairly low PSA? One doctor said a while back that, as long as the PSA level remains stable, that I should still be OK and that they would only be concerned if it shot up to over 12 or more in a 3 month period.

So now I'm confused and worried. My brother had his prostate removed the moment he heard the word 'cancer'. His firm covered him with private health insurance and his op was carried out within 10 days! Maybe I should have had the same op? Although it would have taken a bit longer for me.

So whaddya think? Should I be worried? Or is my doctor (a locum I haven't even seen before) possibly on to something? I did try this Pomi-T stuff, but it cost too much and going by my PSA results, didn't make much of a difference, as I haven't had any since May this year.

Please help and many thanks for doing so.

User
Posted 04 Dec 2018 at 15:38

Ross, unless you have some exotic form of cancer (and I see you've had a biopsy, so you can rule that out), it's extremely unlikely to have spread with a PSA of only 6. Advanced cancer is generally accompanied by PSA levels in the hundreds or more. It's not so much the "value" of your PSA score that matters, but how it changes over time. Yours is stable, indicating that your PCa is also stable.

I really would try not to worry about it.

Chris

 

Edited by member 04 Dec 2018 at 15:39  | Reason: Not specified

User
Posted 04 Dec 2018 at 15:53
With your G 3+4=7 diagnosis you are borderline for AS, although my mate in his seventies has been winging it for four years with the same score, but he has three-monthly PSA tests, an annual MRI and a consultation with a leading urologist. All private.

His PSA is now up to 13, and he is even considering castration!

Have you had a bone scan?

I think you are due for another mpMRI, preferably on a hi-res 3 Tesla machine.

Cheers, John.

User
Posted 04 Dec 2018 at 15:53
Ross

My clinical dx was similar to yours. It was only after the post op path report that we found out it had begun to spread so up graded to T3a.

I think my scan had already indicated the tumor was near the edge because I was told I would only have nerve sparing on one side even before the op, but I never saw it and back then did not know to ask. Also I was advised that Active Surveillance was not suitable.

If I would have had earlier dx and then earlier op maybe full nerve sparing would have been possible.

Dont panick but it would be worth aaking for details of the scan/biopsy with reference to the tumor position.

Good luck

Cheers

Bill

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User
Posted 04 Dec 2018 at 15:38

Ross, unless you have some exotic form of cancer (and I see you've had a biopsy, so you can rule that out), it's extremely unlikely to have spread with a PSA of only 6. Advanced cancer is generally accompanied by PSA levels in the hundreds or more. It's not so much the "value" of your PSA score that matters, but how it changes over time. Yours is stable, indicating that your PCa is also stable.

I really would try not to worry about it.

Chris

 

Edited by member 04 Dec 2018 at 15:39  | Reason: Not specified

User
Posted 04 Dec 2018 at 15:40

if you have family history and your PSA was up to 7 I would have thought they would refer you for a biopsy.

Unlikely to have spread out of the capsule on a 7 score although mine had mestatatised into my hip on a 13 score.

Better safe than sorry.

Edited by member 04 Dec 2018 at 15:42  | Reason: Typo

User
Posted 04 Dec 2018 at 15:53
With your G 3+4=7 diagnosis you are borderline for AS, although my mate in his seventies has been winging it for four years with the same score, but he has three-monthly PSA tests, an annual MRI and a consultation with a leading urologist. All private.

His PSA is now up to 13, and he is even considering castration!

Have you had a bone scan?

I think you are due for another mpMRI, preferably on a hi-res 3 Tesla machine.

Cheers, John.

User
Posted 04 Dec 2018 at 15:53

Ross,

Gleason 7 (3+4) on previous biopsy in 2017.

I would be requesting a new mpmri and biopsy.

Active Surveillance with a gleason 7 isn't always recommended. I am presuming you are an older gentleman.

All the best,

Neil.

Edited by member 04 Dec 2018 at 16:10  | Reason: Not specified

User
Posted 04 Dec 2018 at 15:53
Ross

My clinical dx was similar to yours. It was only after the post op path report that we found out it had begun to spread so up graded to T3a.

I think my scan had already indicated the tumor was near the edge because I was told I would only have nerve sparing on one side even before the op, but I never saw it and back then did not know to ask. Also I was advised that Active Surveillance was not suitable.

If I would have had earlier dx and then earlier op maybe full nerve sparing would have been possible.

Dont panick but it would be worth aaking for details of the scan/biopsy with reference to the tumor position.

Good luck

Cheers

Bill

User
Posted 04 Dec 2018 at 17:04

Some GPs are as not very tactful!

You don't mention your staging? After your template biopsy?

PSA score can be very misleading - you can be riddled and have a low PSA less than 2 or all clear with it in the 20s.

Are you still having regular MRIs and biopsies? If you aren't you are not on "active" surviellance and probably need to nag your GP to be a little more active!!

Personally I would want to see a specialist and get athorough review of your case.

Promi T is NOT a treatment it's just a food supplement, I take s generic equivalent because it's basically just got good stuff in that isn't going to harm you and may do s bit of good. For the same reason I take Vitamin D and K - in PC these have all been proven to be of benefit or at least do no harm (unlike soy products!!).

 

Edited by member 04 Dec 2018 at 17:09  | Reason: Not specified

User
Posted 04 Dec 2018 at 17:18

Thank you all for your quick replies! Some reassure me (Chris), Some don't (John), but Castration? Bo****ks to that! And Older Gentleman? (Neil), I dunno about either, but I'm 59, so I suppose you must be much younger than me! I would love to be able to specify which machine I have an MRI on, though I doubt they will give me the choice. I hated my first MRI anyway, as it felt like my face was about two inches away from the inside wall of that overly large toothpaste tube! The Biopsy wasn't as bad as I thought, especially as they brought me toast after. Though it took ages to wake up, as they'd dosed me up with Co-Dydramol and I'm never very good on that stuff. I bled in many ways and had pain, which transformed into just an odd feeling upon urination for months afterwards (Last November to April/May this year). But thank you all again for taking the trouble to help. This has helped me calm down a bit. Really funny thing is, my Urologist tried to contact me earlier this year and I have been trying to get back in touch with him ever since. The last I heard was they were going to send me an appointment in November, (they didn't). Saw a doctor yesterday and now I have an appointment with the Uro on 20th. December, a blood test tomorrow and an X-ray on Thursday! What it is to be someone with such power! Francij1, I have only just noticed your post as I was typing this. I don't know what all of that means, but suffice to say that my score of 7 was given to me following my biopsy last November and I have been (and am) still on AS. I have been having PSA's every three months, with a 'promise' of another biopsy in 12-18 months depending on my results since. The Uro told me that AS comes with almost certain surgery to remove the prostate at some point in the future. He also said that a biopsy is far more accurate than an MRI, so they probably wouldn't do another MRI, though you all seem to suggest otherwise? My best regards to you all.

User
Posted 04 Dec 2018 at 17:27
I just want to add here, that my GP seemed to suggest that there was no need for me to see my uro again and that they would monitor me just through the surgery. I told my uro's secretary this (when she rang up to arrange an appointment some months back) and that's probably why I haven't heard from them until now! I think they must have 'fallen out' with each other, with them both fighting over my prostate and all. If they have to do that, I wish they wouldn't use my health as the 'punchbag'!
User
Posted 04 Dec 2018 at 17:41

Hi Ross,

Sorry for the 'older gentleman' comment. Surprised that AS was offered with your age. A few chaps on here, in your age group, have had their PCa upgraded after surgery.

We are all different and professional advice can be misguided. I was told in no uncertain terms that AS was not an option...similar staging after mpmri and biopsy. After almost a three year delay, due to a Urologists poor advice, i was still able to have nerve sparing surgery...fortunately.

All the best

Neil.

 

 

 

Edited by member 04 Dec 2018 at 20:06  | Reason: Not specified

User
Posted 04 Dec 2018 at 19:24
Look, an mpMRI is vitually non-invasive, except where they inject the tracer into your hand. If they don’t have a 3T scanner near you, ask if you can travel to where there is one.

So an mpMRI is preferable to any biopsy. And depending on the scan.........

I must admit I have never heard that most men on AS go on to have a subsequent prostatectomy - I think a fair few will die of something else first.

Cheers, John.

User
Posted 04 Dec 2018 at 19:48
I've never had a tracer with an MRI scan, John. CT scans, yes (I had one yesterday, in fact), but not MRI scans.

Chris

User
Posted 04 Dec 2018 at 20:10

Ross

At the age of 46, my first PSA test was 6.2.  One month later 6.8 and then another month later 7.8.  I had a prostatectomy.  This is an extract from my profile:

4 January 2017 - bad news. In the lab, post surgery, cancer upgraded to pT3bN0M0. It had spread into the seminal vesicles. Upgraded to Gleason 9 (4+5). But not in the lymph nodes. ISUP 5. Capsule + and Margin +. Perineural, lymphovascular and extracapsular perineural spread. Tumour occupied 35% of the gland.

I don't mean to unsettle you, but when I read your story, I thought that if I were you, I would want a review of my case, although I suppose to some extent that is exactly what AS is.  Obviously, your urologist has had the full picture, but for peace of mind, I'd recommend a review.

Ulsterman

User
Posted 04 Dec 2018 at 20:11
There may well be a very few GPs who have a particular interest in PCa and are able to to give good advice to their patients on this disease but I believe in general GP's have a referring and coordinating role and many cannot be relied on to steer their patients in the most appropriate way, largely because they are not sufficiently well informed, although some have strong prejudices against testing and treating. Whilst a GP should be able to help mitigate some problems and side effects, I would recommend following advice from Urologists and Oncologists rather than a course that a possibly ill informed GP might suggest.
Barry
User
Posted 04 Dec 2018 at 21:18
I think John means a contrast agent rather than a tracer. Radioactive tracers would be useless in an MRI! I’ve had three pelvic MRIs, two of which were enhanced using Gadolinium injected through a cannula.

It improves the images.

See link below,

https://www.insideradiology.com.au/gadolinium-contrast-medium/

Ian

User
Posted 04 Dec 2018 at 21:22

Originally Posted by: Online Community Member
I think John means a contrast agent rather than a tracer. Radioactive tracers would be useless in an MRI! I’ve had three pelvic MRIs, two of which were enhanced using Gadolinium injected through a cannula.
It improves the images.
See link below,

https://www.insideradiology.com.au/gadolinium-contrast-medium/

Ian

Thanks, Ian, that's interesting. I've had lots of MRI scans and lots of CT scans. I've had an iodine contrast agent injected through a cannula for all my CT scans, but I've never had one for an MRI. I guess it depends what type of scan is being done. 

Cheers,

Chris

 

User
Posted 04 Dec 2018 at 21:46
It seems that there are so many different views here, it could be confusing. You have had MRI and template biopsy and were deemed suitable for AS by the specialist who has all your test results and therefore knows more about you than any of us.

It is quite right that your uro said many men on AS end up having active treatment. AS is not necessarily a permanent choice - it is a strategy for monitoring your data so that if circumstances change, this is picked up quickly and treatment can be offered at the optimal point. Correctly done, AS involves 3 monthly PSA tests (often managed by the GP) with annual DRE and annual MRI scan.

It isn't as straightforward as men on G7 are not usually considered suitable for AS - you clearly were! G7(4+3) would be unlikely but G7(3+4) may be okay, particularly if your template biopsy showed very small volume tumour centrally placed in the peripheral zone, nowhere near the outer edge or the transition zone.

It may simply be that the locum doctor didn't realise you were on AS - or doesn't know much about AS - or realised that your AS has not been managed well because you haven't seen the urologist when you were supposed to.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Dec 2018 at 22:05

When I was diagnosed I wrote to the doctor in the newspaper I read and he said beware of over treatment, it's common.  People being given treatment that causes side effects when they can carry on a long time without it.  Although on reading this forum for some time I can't say I've ever seen anyone being over treated, usually under treated in my opinion. 

On the other hand it could be that the 2 doctors you've seen are at different ends of the spectrum.    I guess it could be fairly safely said that with a stable psa, going down 14% at the last check, it isn't spreading or growing much.  Although with a 4 in the Gleason it does need watching.  It's often easier for someone else to say it's not because if it was me I feel sure I'd be looking for some kind of treatment and on tenterhooks the whole time.

Also I've had a lot of pains in the hip, back and neck but with a psa <0.05 the doctors keep saying carry on regardless.  I was warned by a nurse this is a common feature of the mental condition we're in and not read too many tabloid style articles.

User
Posted 05 Dec 2018 at 00:16

The 2017 National Prostate cancer audit did show an improvement from the 2016 overtreatmemt statistics

https://www.npca.org.uk/content/uploads/2018/02/NPCA-2017-Annual-Report-Executive-Summary-211117.pdf

the 2018 report should be published shortly so should be interesting

Clare

User
Posted 05 Dec 2018 at 02:03

Originally Posted by: Online Community Member
I've never had a tracer with an MRI scan, John. CT scans, yes (I had one yesterday, in fact), but not MRI scans.

Chris

I don’t know exactly what the tracer was that was injected when I had my mpMRI, but I do remember a cannula in the back of my hand that pissed blood everywhere when it was removed!

User
Posted 05 Dec 2018 at 08:37
It’s not a tracer, it’s a contrast enhancing substance! Probably Gadolinium.

Ian

User
Posted 05 Dec 2018 at 13:02

Well, once again, thank you all for your thoughts and comments. No, I have absolutely no idea what my 'Staging' is! I've seen you all post things like this before, but was never given any of that by my Uro or Doctor. When I see the Uro on 20/12, I will ask him for it.

I have had an mpMRI which was not much use at all, they told me, hence the Template Biopsy which revealed more to them. I will ask about this different one, though being Norfolk, somehow doubt I will get it, as they tend to do things different over here. Mind you, this was at the NNUH in Norwich, which is fairly advanced for such an outlying region, so I may have had one anyway without knowing it. Not going through all the details, (which I will do later when I get the time), I can't even remember whether I was 3+4 or 4+3, though I think it was the former. It was 7 I know and was considered to be OK for AS. Since 6 is the lowest, I wouldn't have personally thought it to be much to be worried about? But you know more than me, I must study it all more closely. I probably have far too much faith in my doctors!

Thanks again.

User
Posted 05 Dec 2018 at 13:17
Gleason 3+4=7 is just about suitable for AS. 4+3=7 is not, as the 4 first indicates a more aggressive cancer.

Cheers, John

 
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