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Rising psa…. Please help

User
Posted 16 Jul 2021 at 10:51

Hello.

This is my first time posting on here and feel somewhat awkward. My husband had a prostatectomy  three years ago followed by RT. After this his PSA was low…..although never undetectable. Since last summer it’s been gradually increasing and now has reached a level of 1.4, with a doubling time of 6 months.
Because of these horrid times his appointment is always a phone consultation with different drs and these are with urology not oncology. He was discharged from oncology 18 months ago. 
We’re now being told to wait until his reading is over 2 ( although some have said 5) before hormone treatment is considered. 
This is causing huge concern. 
I guess what we’re asking is 

* Do we just wait for next three monthly test?

* Do we ask to be swapped back to oncology?

* Do we search for a second opinion re potential treatment?

* What, if any, are the downsides of receiving hormone treatment sooner than later?

Many thanks for reading and any advice . 

 

User
Posted 17 Jul 2021 at 06:55

Hello Teal,

Sorry for what you and your husband are going through.

It's difficult to understand from what you're saying if they think there's still a curative treatment path available to him, or just a managed treatment path.

Assuming a curative treatment path is not ruled out, at this moment, I would be pushing for a PSMA PET/CT scan to find where the cancer cells are (his PSA is well above the level for that to be viable in the case of no prostate), and ideally you do that before starting hormone therapy as hormone therapy will make the scan less sensitive. Hospitals which have PSMA PET/CT scanners on site tend to do this when PSA reaches 0.2 or 0.5 (depending on their scanner), but hospitals which don't tend to wait much longer before referring to get a scan elsewhere (for no good reason), or skip it, so you may need to push to get this.

When they know where the cancer is, then they can say which treatment path is viable. Also, it enables radiotherapy (the next curative treatment option) to be targeted to where the cancer cells are, rater than just given blindly to the prostate bed (where they're assumed to be in the absence of a scan).

Where abouts do you live and which hospital is he being treated at?

User
Posted 17 Jul 2021 at 07:06
Hi Teal

I think Andy has has missed that your hubby has already had salvage RT.

His points about a PET scan are still valid as you may be able to have some targeted RT if it's outside the area already treated..

You need to see a good oncologist as soon as possible, the NHS is good at some things but it sounds like where you live this isn't one of them!

If you can afford it you might find seeing an onco privately will help understand your options and there are many: Chemo, HT, second line HT, various combos AND do nothing. There are folks active on here who have done all of those so a few hours reading some profiles might help inform your decisions in conjunction with an oncologist.

User
Posted 17 Jul 2021 at 07:58
Maybe read my profile. Semi similar to yours. Rubbish RP and tragic results. Multiple refusals of RT as they said it had spread to lymph’s , and because I was traumatised at 48 about what the surgery did to me. So I let it slide and slide so I could enjoy life. Only just started HT with a PSA of 990 and it’s working well. Big gamble I know but here I am 6 1/2 yrs on and still well QOL wise. Hoping to reach 10 yrs which is good for a G9 T4 N1

Good luck

If life gives you lemons , then make lemonade

User
Posted 17 Jul 2021 at 08:12

Teal 

Many of us are in the same situation. It all seems to appear as a guessing game and some of it is an "educated guessing game".

I was told by my onco nurse I would get a scan at 1 ,the oncologist said 2,4 or 8.  Some guys are told HT might start at 5,10 or 20.

In three months time a scan may detect something, one of our members did have a PSA of 200 before detecting anything.

There does seem to be a thinking that the sooner HT starts the sooner it can become less effective.

Thanks Chris

 

User
Posted 17 Jul 2021 at 11:34

Originally Posted by: Online Community Member
I think Andy has has missed that your hubby has already had salvage RT.

Yes indeed, my apologies.

Besides going private, you can ask for an NHS referral to another hospital for a second opinion or to transfer your treatment there, in which case go for one of the main cancer centres, although it may mean more traveling.

User
Posted 17 Jul 2021 at 15:49
Thank you so much for these responses I have passed the information on to my husband. He will reply, hopefully, in his own right.
User
Posted 17 Jul 2021 at 18:25

Originally Posted by: Online Community Member
Assuming a curative treatment path is not ruled out, at this moment, I would be pushing for a PSMA PET/CT scan to find where the cancer cells are (his PSA is well above the level for that to be viable in the case of no prostate), and ideally you do that before starting hormone therapy as hormone therapy will make the scan less sensitive. Hospitals which have PSMA PET/CT scanners on site tend to do this when PSA reaches 0.2 or 0.5 (depending on their scanner), but hospitals which don't tend to wait much longer before referring to get a scan elsewhere (for no good reason), or skip it, so you may need to push to get this.

Interesting comment.   Another for my 'what if' file.   

It seems pretty poor if some people are denied timely treatment due to their hospital not having the kit.   Such hospitals should be upgraded or amalgamated.

User
Posted 17 Jul 2021 at 20:02
Yes, ask for a referral back to oncology - this is not a urologists area of expertise (unless you happen to be under the care of one of the very few uro-oncological specialists in this country; they do both surgery and radiotherapy/ hormone treatment.

The earlier that HT is started, the earlier it becomes ineffective so many oncologists will wait until the PSA gets to 5, 10 or 20 as stated above. Some don't look at the PSA so much - they start the man on long term HT when the doubling time reaches less than 6 months.

If scans can pinpoint the problem and they are confident that it is only one or two mets (and these are away from your OH's pelvic area) he may be suitable for short course radiotherapy just to the mets. Otherwise, it will be long term HT with possible chemo if he is fit and well.

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

User
Posted 24 Jul 2021 at 21:28

Hello all. I am Teal’s husband referred to in these posts. I just want to thank everyone for their responses, all of which were very helpful and informative. As I am sure you all know, the sharing of experiences is a great help to all who are on same journey. For my part I have been in touch with my local NHT to press for a consultation with an Oncologist. Much of my recent frustration has been about the issue of Urology or Oncology and I remain baffled by this. Once the prostate has gone and a full recovery from surgery has been made, an increasing PSA has to be an oncology issue. We will see. Given that my PSA is inexorably rising I need a discussion with an cancer expert to explain my options about further scans/treatments and why I have to wait to hit what seems to be an arbitrary and moving target  before further treatment.

Thanks again for all the help and advice.

 

Ardanza

User
Posted 07 Sep 2021 at 15:34

Hi Ardanza

I have been a member of this forum for some time as my husband has prostate cancer.  I have noted all his details in my profile and keep them updated yet I have not jumped in and posted until now - you are in a similar place to my husband and just wanted to say you are not alone !  My husband had his Consultants phone call today - his PSA (he had a prostatectomy and salvage radiotherapy last year) is 1.6, its been gradually climbing since last October when the reading after his radiotherapy was 0.2.   The Consultant said to do another PSA test in three months and possibly scan in the new year although he said often mets do not show up till the PSA gets much higher.  He did say if there are three spots or less then SABR will be the way forward and if there are more spots detected it will be chemo and then hormone therapy.  I hope you get to speak to an Oncologist soon - it always seems to be such a waiting game!

CurrantCottage

 
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