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Treatment without HT

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User
Posted 08 Dec 2019 at 19:00

Unlike a lot of men on this site, I don't receive HT. The cancer, Intermediate Favourable, was treated with 60 Gy in 20 fractions last January. My testosterone levels are low without regular boosts and I have Sustanon injections every three weeks, as they treat people with normal levels now. (?) 

My PSA dropped from 7.4 to 3.1 four months after RT then to 2.9 three months later. I was disappointed with the latest small drop but was assured that it was fine. Next test in March.

Is there anyone who had similar RT for G7 (3+4) with normal testosterone levels and results of PSA ltests as the months passed after treatment? 

P.S. I worry a lot, unfortunately. 

 

User
Posted 08 Dec 2019 at 21:53

Don't forget RT does not kill all the cancer cells targeted immediately. Rather it damages the DNA of cancer cells which means when they come to divide they cannot sucessfully do so and PSA falls further. RT causes this damage for about 18 -24 months so there is still the likelyhood that your PSA will fall further yet. However, there remains the possibility that some cancer cells are radio resistant and will survive.

Edited by member 09 Dec 2019 at 00:39  | Reason: Not specified

Barry
User
Posted 05 Apr 2020 at 04:41
Thank you! As you have noticed, I was stressing out about the slow drop, but I'll take 2.7 and falling as ok for me. Yes, it's still 10 months until two years post rt. I did ask if my testosterone injection should be put off until the lockdown here is eased, but they said to get it done on Thursday. Might even get the flu jab as well! Even a free mask, but I haven't left the house for 11 days. Thank you again, you have given me some reassurance.
User
Posted 23 May 2020 at 11:20
The RT may carry on working for a couple of years but you would generally be looking for nadir at 18 months. The RT damage to cells might still have some effect but the PSA may start to rise again as healthy prostate cells replicate so my priority would be the August blood test. If getting a PSA test in June is instead of August then fine but I would be reluctant to have a June test and then get pushed back to November / December
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 08 Dec 2019 at 20:53
I'm on HT, but on bicalutimide tablets which don't affect testosterone levels. Like you I was G3+4.

My PSA was 32 on diagnosis in May 2018. Immediately prior to starting RT in Feb this year the bicalutimide had brought my PSA down to 13.0. I had my RT in Feb and Mar this year.

Six weeks after RT my PSA was 4.6. A few weeks ago, 7 months after RT, it had fallen to 2.0. The important number is the level at nadir, which typically occurs around 18 months after finishing RT. My oncologist told me that any number below 2 at nadir is a good outcome.

Best wishes,

Chris

User
Posted 08 Dec 2019 at 21:04

Originally Posted by: Online Community Member
I'm on HT, but on bicalutimide tablets which don't affect testosterone levels.

Chris, that's still hormone therapy which will reduce activity of prostate cells. It's not equivalent to treatment without HT.

Edited by member 08 Dec 2019 at 21:05  | Reason: Not specified

User
Posted 08 Dec 2019 at 21:53

Don't forget RT does not kill all the cancer cells targeted immediately. Rather it damages the DNA of cancer cells which means when they come to divide they cannot sucessfully do so and PSA falls further. RT causes this damage for about 18 -24 months so there is still the likelyhood that your PSA will fall further yet. However, there remains the possibility that some cancer cells are radio resistant and will survive.

Edited by member 09 Dec 2019 at 00:39  | Reason: Not specified

Barry
User
Posted 08 Dec 2019 at 21:58

Originally Posted by: Online Community Member
Don't forget RT does not kill all the cancer cells targeted immediately. Rather it damages the DNA of cancer cells which means when they come to divide that cannot sucessfully do so and PSA falls further. RT causes this damage for about 18 -24 months so there is still the likelyhood that your PSA will fall further yet. However, there remains the possibility that some cancer cells are radio resistant and will survive.

Thanks Old Barry. I'm probably getting impatient and hoped for a larger drop. Is that a picture of a Maori warrior with your name? 

User
Posted 08 Dec 2019 at 22:16

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
I'm on HT, but on bicalutimide tablets which don't affect testosterone levels.

Chris, that's still hormone therapy which will reduce activity of prostate cells. It's not equivalent to treatment without HT.

Very true, but it doesn’t have the dramatic impact on PSA levels that the injected forms of HT do.

Best wishes,

Chris

 

User
Posted 08 Dec 2019 at 22:48

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Don't forget RT does not kill all the cancer cells targeted immediately. Rather it damages the DNA of cancer cells which means when they come to divide that cannot sucessfully do so and PSA falls further. RT causes this damage for about 18 -24 months so there is still the likelyhood that your PSA will fall further yet. However, there remains the possibility that some cancer cells are radio resistant and will survive.

 

Thanks Old Barry. I'm probably getting impatient and hoped for a larger drop. Is that a picture of a Maori warrior with your name? 

 

Don't over-expect; without HT you are not going to see the big drops that other men have. If your PSA goes below 2 within 18 months you are doing great. 

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

User
Posted 09 Dec 2019 at 02:26

"Thanks Old Barry. I'm probably getting impatient and hoped for a larger drop. Is that a picture of a Maori warrior with your name?"

I guess so, he led a display group putting on a show for tourists to New Zealand.

Most men who have RT as a primary treatment these days tend to have 3 - 6 months HT before and concurrent with it followed by anything up to 3 years after it.  I had 8 months HT before RT but none after it. My initial 17.6 PSA at diagnosis in 2007 quickly came down to 1.5 after 3 months on Zoladex.  Then after RT it came down to 0.05 and stayed that way for about 2 years, ie long after the effects of Zoladex would have worn off and Testosterone gradually returned to near pretreatment levels.  Thereafter, my PSA very gradually increased to 1.99 at which point I had HIFU in 2015 as salvage treatment for failed RT.  It so happened that a new tumour had been identified when my PSA was 1.44 in 2014 but many men have a PSA higher than this but the cancer is so diffused it cannot be identified.  You just can't draw comparisons between different treatment regimes in the short to medium term.  With RT some of the good cells in the Prostate will regenerate and this will tend to raise PSA.  This has to be taken into account. But in short, while your PSA continues to drop I wouldn't be concerned.  It's only at what point, by how much it rises and if this is a trend that you need discuss with your Oncologist.  This is on the assumption that you don't experience unusual things that might possibly be related to PCa between check ups.

Edited by member 09 Dec 2019 at 02:26  | Reason: Not specified

Barry
User
Posted 04 Apr 2020 at 21:36

Lyn. It's now 2.7, about 13 months after rt finished. Another .2 drop. I'll wait until September now.

Edited by member 04 Apr 2020 at 21:36  | Reason: Not specified

User
Posted 04 Apr 2020 at 23:13
That's good and I hope it drops still further but it's possible that you may be approaching your nadir.
Barry
User
Posted 04 Apr 2020 at 23:54
The nadir can vary? I thought it had to be 1 or even around 0.5 after rt. Even with my testosterone boosts, another one on Thursday. But if 2.5 ish is an ok level for my nadir, then I'll stop reading the same articles over and over, some of which are quite old and probably inaccurate now. I know 2.7 is ok for my age of 74, so it can stop around there if it wants to. Hope all safe over there. Very quiet here of course, but tbh not much different for me apart from people doing the grocery shopping and leaving it at the gate. Very kind neighbours.
User
Posted 05 Apr 2020 at 01:25
Yes, the nadir is simply the lowest reading that you get. In the case of RT, a man typically reaches his nadir around 18 months after the RT finished because the RT is still doing its damage for that amount of time.

You are aware that you are in an unusual position in that not only have you not had HT to support the RT but your testosterone levels are actually being supplemented so there is little point traumatising yourself with the online articles. You still have a few months to go and it may drop further. If it doesn't go down to 2 or below, your onco might be a little disappointed but the fact that you are still seeing a steady fall is a good sign.

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

User
Posted 05 Apr 2020 at 04:41
Thank you! As you have noticed, I was stressing out about the slow drop, but I'll take 2.7 and falling as ok for me. Yes, it's still 10 months until two years post rt. I did ask if my testosterone injection should be put off until the lockdown here is eased, but they said to get it done on Thursday. Might even get the flu jab as well! Even a free mask, but I haven't left the house for 11 days. Thank you again, you have given me some reassurance.
User
Posted 23 May 2020 at 00:34
Now I'm dithering about when to get the next PSA test. Early June will be 3 months since the last one. Conflicting advice though - Specialist says 6 months ok, Dr says 3 months. I prefer 6 of course. PSA did drop by .2 each time from the last 2 tests. Also dre. Specialist says yearly, Dr says not any point doing another one. It's not up to me to decide these things, or is it? Starting to rant now so will stop. Thousands of men are worse off than me and I wish them every success for the future.
User
Posted 23 May 2020 at 00:42
If you get it in June, will that be 15 months post-RT?

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

User
Posted 23 May 2020 at 05:29
15 months I think plus 23 days of May. RT 60 Gy in 20 fractions completed 1/02/2019. Four months after rt it was 3.1, three months after that 2.9, then six months later 2.7. Testosterone 17.8 on 5/3/20 and the Sustanon injections are now monthly. I know it still has time to reach its nadir, up to 2 years I believe, or even longer.
User
Posted 23 May 2020 at 11:20
The RT may carry on working for a couple of years but you would generally be looking for nadir at 18 months. The RT damage to cells might still have some effect but the PSA may start to rise again as healthy prostate cells replicate so my priority would be the August blood test. If getting a PSA test in June is instead of August then fine but I would be reluctant to have a June test and then get pushed back to November / December
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 May 2020 at 11:30
Yes! I've almost decided on late August early September. The last gap was 6 months and nobody was horrified, in fact my Dr sent me a text saying he was pleased to see there was a further fall. Nice of him. Thanks for your continued advice and support!
User
Posted 26 Jul 2020 at 01:11
Well, we got through lockdown ok and now all 21 active cases are in quarantine and all new arrivals are put into isolation and tested. No community transition. I went to see a Dr about hemorrhoids (sp?) and he felt the prostate while he was there. First time since rt and too good an opportunity to miss perhaps. He commented that it was quite small and couldn't feel any lumps. Question. What happens to the prostate after rt? Does it shrink as the cancerous cells are dying off and do the normal cells regenerate if they are killed as well?Not the cancerous ones hopefully! Will the gland now be a completely different shape? My Dr said not to do any dre's after rt but my specialist said a year after rt. I'm now 18 months after rt and starting to worry about the next PSA in September. A six month wait. Dr said 3 months, specialist said 6 so I chose 6. Of course.

Keep safe everyone!

User
Posted 26 Jul 2020 at 05:01
RT does damage some normal cells but is administered on the basis that these will be less affected and more able to regenerate than the cancer ones. Remember too that RT beams are directed from different angles and then meet where the tumour is located as the point of focus. Thus RT damage to good cells is minimized. Sometimes, there are some cancer cells that are not sufficiently damaged or are radio resistant, much depends on how much damage was inflicted on their DNA and where this is the case these can go on to fight another day and maybe spawn a new tumour in due course. But I wouldn't worry about what may not become a problem when all your PSA results so far have continued a downward trend.

To date, I have not had HT after RT or the subsequent HIFU come to that. I did ask about testosterone boosts after RT but was advised against having these and followed that advice.

Barry
User
Posted 26 Jul 2020 at 14:24

I asked a consultant urological radiologist why a prostate doesn't work after RT, if the X-rays only kill the cancer cells.

The answer was that the non-cancerous prostate glandular cells would still work. However, the repeated exposure of the prostate muscle to daily X-rays results in the generation of lots of fibrous material in the muscle as it heals, and it can't contract to expel the fluid. Also, many of the small ducts may be blocked by fibrosis. A prostate is typically around 5% effective after RT, but this can vary from nothing in some people, to very significant recovery for others.

Someone I know has recovered over half his ejaculate having finished RT and HT. It's worth noting that over half of the semen comes from the seminal vesicles, and the prostate contributes a smaller proportion. If someone had their prostate but not seminal vesicles irradiated, they may still ejaculate something looking like semen, but missing the prostate contribution (which is a clear fluid, so not obviously missing). If that applies to you, I think you could try an experiment to confirm if the prostate contribution is missing. A substantial part of the contribution from the prostate is PSA. PSA's job is to liquify the semen so the sperm can swim out, and this normally happens within a few minutes of ejaculation - semen will go runny and clearer. If yours doesn't, you are probably missing the prostate's contribution to it.

If you had spread in/near the seminal vesicles or were a high risk patient (PSA => 20, or Gleason >= 8, or T3 or N1), you will normally have your seminal vesicles included in the RT target area too, in which case they are likely to be very ineffective afterwards too. Even if they are working, they might not still have functioning ejaculatory ducts through the irradiated prostate, but if you get white coloured semen, then your seminal vesicles are working to some extent, and managing to get their contribution through the prostate.

User
Posted 28 Aug 2020 at 10:11

Originally Posted by: Online Community Member
Well, we got through lockdown ok and now all 21 active cases are in quarantine and all new arrivals are put into isolation and tested. No community transition. I went to see a Dr about hemorrhoids (sp?) and he felt the prostate while he was there. First time since rt and too good an opportunity to miss perhaps. He commented that it was quite small and couldn't feel any lumps. Question. What happens to the prostate after rt? Does it shrink as the cancerous cells are dying off and do the normal cells regenerate if they are killed as well?Not the cancerous ones hopefully! Will the gland now be a completely different shape? My Dr said not to do any dre's after rt but my specialist said a year after rt. I'm now 18 months after rt and starting to worry about the next PSA in September. A six month wait. Dr said 3 months, specialist said 6 so I chose 6. Of course.
Keep safe everyone!

There has been another outbreak in the community, so over 100 new cases. Not sure of the exact number but 5 to 10 daily. Some restrictions again, L 3 or 2 depending on where you live. Maybe easing soon. PSA in 3 weeks but not stressed. Yet. We shall see. 

User
Posted 15 Sep 2020 at 03:43

Originally Posted by: Online Community Member
The RT may carry on working for a couple of years but you would generally be looking for nadir at 18 months. The RT damage to cells might still have some effect but the PSA may start to rise again as healthy prostate cells replicate so my priority would be the August blood test. If getting a PSA test in June is instead of August then fine but I would be reluctant to have a June test and then get pushed back to November / December

Yesterday's result was 1.5! Almost didn't believe it so rang back today and it still was. A gap of 6 months and a week and 20 months after rt. Next March is a long way away. Happy.,

User
Posted 15 Sep 2020 at 09:35

Great result. Quite right to be happy.

Ido4

User
Posted 19 Sep 2020 at 22:39

Originally Posted by: Online Community Member
Yes, the nadir is simply the lowest reading that you get. In the case of RT, a man typically reaches his nadir around 18 months after the RT finished because the RT is still doing its damage for that amount of time.

You are aware that you are in an unusual position in that not only have you not had HT to support the RT but your testosterone levels are actually being supplemented so there is little point traumatising yourself with the online articles. You still have a few months to go and it may drop further. If it doesn't go down to 2 or below, your onco might be a little disappointed but the fact that you are still seeing a steady fall is a good sign.

1.5 now, 14 September, 20 months or so after rt. 

User
Posted 27 Sep 2020 at 09:07

Brilliant result.

Could I ask why you didn't have hormone therapy?

I know hormone therapy is less often used in the US, particularly with low and intermediate Gleason diagnosis, but the hormone therapy drugs costing 25x as much in the US is a factor too.

User
Posted 27 Sep 2020 at 20:56

Originally Posted by: Online Community Member

Brilliant result.

Could I ask why you didn't have hormone therapy?

I know hormone therapy is less often used in the US, particularly with low and intermediate Gleason diagnosis, but the hormone therapy drugs costing 25x as much in the US is a factor too.

I am Intermediate Favourable and was told that they treat men with normal testosterone levels now at that level. In fact, I have monthly injections to get me up to normal levels! This article is on another site.

 

Adding ADT to external beam radiation only benefits unfavorable risk patients

User
Posted 30 Mar 2021 at 04:55
Latest psa 30/3/21 was 0.83. Maybe approaching the nadir. Starting to feel more confident at last!
User
Posted 30 Mar 2021 at 09:38

That’s a great result Dunniz. 

Ido4

User
Posted 03 May 2021 at 20:55

Thanks. The Dr said he hoped for 1 or maybe .5 so .83 is good. It might go down further but I get confused by the nadir thing. I suppose everyone is different so I’ll be happy where I am.

User
Posted 04 May 2021 at 00:23

Originally Posted by: Online Community Member

Thanks. The Dr said he hoped for 1 or maybe .5 so .83 is good. It might go down further but I get confused by the nadir thing. I suppose everyone is different so I’ll be happy where I am.

Your nadir is simply the lowest PSA  you reach after treatment.  As I said earlier in this thread, this is usually arrived at between 18-24 months.  However, like so many things with PCa and its treatment, there are occasionally men whose results fall outside normal parameters and your PSA continuing to fall so late is a case in point.  Very pleased for you.

Barry
User
Posted 30 Jun 2021 at 02:27

Originally Posted by: Online Community Member

Thanks. The Dr said he hoped for 1 or maybe .5 so .83 is good. It might go down further but I get confused by the nadir thing. I suppose everyone is different so I’ll be happy where I am.

Now I’m having trouble peeing. Was asked to give a sample for test for infection but took two hours! All the time really wanting to go. Almost painful. No infection, but Dr thought maybe scar tissue? An ultrasound showed incomplete voiding, but bladder wall, kidneys and aorta ok. Seeing a specialist in about a month who may put a camera into my bladder to have a look. Sounds a bit uncomfortable but I’ve had a few catheters so maybe not. Sigh … 

User
Posted 30 Jun 2021 at 06:53
Are you taking Tamsulosin? Worked wonders for me.

Cheers,

Chris

User
Posted 10 Jul 2021 at 03:29
No, not taking any medication yet. It’s actually ok atm, but I’ll ‘hold on’ until I see the specialist.
User
Posted 13 Sep 2021 at 06:41
Just a quick update. Specialist was ok with everything and said incomplete voiding was normal for my age. Most nights I’m ok unless the cat wakes me, then I have a pee so I can sleep in a bit longer. Good news is that he said yearly psa tests are ok now as I’m over 2 1/2 years post rt with psa of .83 after 2 years. Thanks for your support.
User
Posted 08 Feb 2022 at 19:43
February already. My psa went up very slightly from .83 to .99. Nobody seems worried about that, except me of course. My Dr said to have it checked six monthly so that’s May. Had another want to pee but can’t episode three days ago. They seem to occur every two or three months, lasting about two very uncomfortable hours but ok as soon as I produce something, usually unexpectedly! Dr thinks the rt may be the cause, but that’s over three years ago now. I might make a fuss soon as it can be quite distressing. Hoping that the rise of .16 in Psa is just a blip. Keep safe everyone.
User
Posted 09 Feb 2022 at 03:49
It is not unusual for PSA to increase as cells in your Prostate recover so don't be concerned as PSA can rise and fall by small amounts. However, if PSA increases significantly or approaches your nadir (.83) plus 2, ie 2.83, it would be time to discuss with your Consultant. But let's hope that will not be necessary. The difficulty in being able to pee is something apart which could happen for several reasons. Tamsulosin might help and I would suggest you ask whether this might help in your case, assuming you are not already taking it, or if an alternative medication could be tried. If you only experience the problem in bouts it seems more indicative of an infection which can be deep seated and not show on urine dip tests. A full culture test could help establish this. I think you should press for a determination.
Barry
User
Posted 10 Jun 2022 at 06:04

Originally Posted by: Online Community Member
February already. My psa went up very slightly from .83 to .99. Nobody seems worried about that, except me of course. My Dr said to have it checked six monthly so that’s May. Had another want to pee but can’t episode three days ago. They seem to occur every two or three months, lasting about two very uncomfortable hours but ok as soon as I produce something, usually unexpectedly! Dr thinks the rt may be the cause, but that’s over three years ago now. I might make a fuss soon as it can be quite distressing. Hoping that the rise of .16 in Psa is just a blip. Keep safe everyone.

Hi. I’m still here! My Dr said to get a six monthly psa test so I did a few days ago. Very pleased and surprised to see it is .68 now, a new nadir. Heaps of other routine tests as well and all ok. Covid here is about 6,000 new cases daily and several deaths. They say the deaths are people with Covid but that’s not necessarily what killed them. Getting really chilly down under, but that’s to be expected of course. Best wishes. 

User
Posted 22 Dec 2022 at 04:30
And the November psa was .55 Very pleased with that. Dr says yearly tests ok now. Very pleased with that too! Best wishes for Christmas and the New Year. Stay safe.
User
Posted 22 Dec 2022 at 09:18

Great news Dunniz. Best wishes for Christmas and the New Year to you and yours.

Ido4

User
Posted 22 Dec 2022 at 10:10

Nice result.

Dave

User
Posted 22 Dec 2022 at 12:57
You will recall that we did say that PSA can fluctuate but overall your trend it down rather than up, so you must be well pleased with that.
Barry
User
Posted 23 Mar 2024 at 03:37
Hi. I’m still here! Latest psa 11/23 was .43 Yearly testing now. Very pleased. 🤗
User
Posted 23 Mar 2024 at 09:30

That is a good result. I made a post a while back on how most threads are likely to be bad news as people who recover drop out of the forum. I'm very glad for your last result.

I did read your earlier posts and how you were worried the PSA  fall was so slow, and how you thought nadir of under 0.5 would be good (though it doesn't really matter what it is).

Please keep posting your results they are very reassuring for others.

Dave

User
Posted 23 Mar 2024 at 09:52

Great result Dunniz, really pleased for you. I love hearing good news stories, it gives us all hope😊

Onwards and Downwards (PSA that is😊)

Derek

 
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