Rising PSA after surgery, radiotherapy and Bicalutamide

User

Posted 03 Apr 2016 at 12:58

Hi all,

My prostate cancer roller coaster ride has taken another turn and I wondered if anyone had any other ideas what might happen next as regards treatment?

My pre-surgery stats were - Gleason 3+4, Staging T2

My post-surgery stats were - Gleason 4+3, Staging T3b

My original scans before I had any treatment showed the cancer was confined to the prostate, with no spread at all anywhere, not even to the seminal vesicles, but during surgery the cancer was found to have spread in the immediate area, including to the seminal vesicles.

I had surgery in January 2014. My PSA then was 10.

My PSA was 0.89 six weeks after surgery.

I had 32 sessions of adjuvant radiotherapy to my prostate bed in June / July 2014 after my PSA has risen to 1.6.

In February 2015 my PSA was 2.4. so I was sent for a Choline PET Scan, which found I had clusters of cancerous lymph nodes both sides of my pelvis.

I started Bicalutamide 150mg in March 2015. I'm still taking them.

In June 2015 my PSA had dropped to 0.277

I had 15 more sessions of radiotherapy in June 2015, this time to my pelvic lymph nodes.

In September 2015 my PSA had dropped to 0.222

On 31st March 2016 my PSA had risen to 0.510

I'm seeing the oncologist on Wednesday of this week and the Macmillan nurse has already commented on the fact the PSA has more than doubled in 6 months, despite the hormones.

I'm guessing I might be put on to Zoladex with the Bicalutamide or I might just end up waiting for another PSA test in 4 to 12 weeks, but that is just a guess.

Even if the surgeon had missed some bits, I think the radiotherapy I had in 2014 to the prostate bed and then the next lot in 2015 to the pelvic lymph nodes would have frazzled them. So I'm guessing that the cancer has now spread further in my lymph system. Anyone have any thought on that?

I doubt I'm the only one to have been in this position of having had surgery, radiotherapy and hormones and for the PSA to start rising again in such a short space of time, so I hoped someone could tell me what their next treatment was and if it's working for them.

Thanks

Jim

User

Posted 07 Apr 2016 at 00:21

It sounds like you have a good onco there Jim - open to options and not too knee-jerky.

Dad's PSA is rising more slowly than yours - now up to 0.36 or something like that. He has decided not to do anything for the time being on the basis that the HT would be long term and he doesn't really fancy it yet.

As your onco says, yours isn't behaving completely typically although you are not the only one on here - one of the issues of the forum I guess in that people who got their cure and moved on don't need us anymore. The nearest to you in terms of stats would probably be Bazza.

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

User

Posted 08 Apr 2016 at 18:30

Hi Jaypeeca,
Just realised my husbands results after surgery i.e Gleason score 4+3 and T3b were the same as yours. He was also told no spread before surgery but had to have seminal vesicles removed during surgery but no lymph nodes.
Katrina

User

Posted 09 Apr 2016 at 16:17

Hi, Jim.
Sorry to see your PSA result was a doubling. I agree with others that your oncologist sounds good. Take your time, wait for the June PSA level, and even then if you need a change of treatment try to work out the likely pros and cons of the options. At the risk of stating the bleeding obvious: the pros and cons need to be in terms of what is important to you (two) and not just about what others might assume you value. The search for cure and the tendency to do something rather than nothing always seem to win out over the do nothing and wait and see kind of stuff.
Hope to see you next week.
Henry

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User

Posted 03 Apr 2016 at 15:14

Hi Jim
I am sure there will be others who can offer advice to you.

Out of interest though when you had the RP did the surgeon remove any lymph nodes to check for spread?

Hope all goes well

Bri

User

Posted 03 Apr 2016 at 15:54

Hi Jim, a bit surprised that you have only been on bicalutimide all this time so yes, if it was John I would be pushing for a different hormone treatment now. Better to halt production of the testosterone since simply disguising it doesn't seem to be working. You could also ask about chemo - some of the trial data is looking really good.

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

User

Posted 03 Apr 2016 at 17:15

Hi Brian,

After surgery I was told no lymph nodes had been removed and that there was no lymph node involvement.

Jim

User

Posted 03 Apr 2016 at 17:20

Hi Lyn,

When I was put on hormone therapy I was given the choice of Bicalutamide or Zoladex but I was encouraged towards Bicalutamide as it was explained to me that it would have less of an effect on my libido and sexual function. This was discussed as in the world of prostate cancer I am still "young", which is the one upside to all this.

When I asked about chemo this time last year I was told "not yet" and that the trials where chemo has been given early involve newly diagnosed men with advanced prostate cancer. I'm up for it if they'd do it and if they said it would help extend my life.

Jim

User

Posted 06 Apr 2016 at 23:21

Hi all,

This is just an update - I saw my oncologist today, who said that although my PSA was still low it had doubled in 6 months so she thought it likely that this was not just a blip.

We agreed that I would carry on with Bicalutamide until the end of June when I'd have another PSA test. If that confirmed the same rate of increase I would then have more treatment. I asked about chemo as I'd read the encouraging results coming out of the Stampede trial and we agreed I could start Docetaxel if the PSA was up, then after that go on to Zoladex in addition to the Bicalutamide.

I was again told that my intermediate aggressive cancer with a Gleason of 4+3 was not behaving as expected.

Jim

User

Posted 07 Apr 2016 at 00:21

It sounds like you have a good onco there Jim - open to options and not too knee-jerky.

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

User

Posted 08 Apr 2016 at 10:33

hello jaypeeca,
my husband has had surgery, radiotherapy and hormones and like you his psa continued to rise albeit slowly. He went (last year July/August) to the Royal Marsden to see about Cyberknife treatment. After a choline pet scan they discovered a hotspot on one of his lymph nodes and agreed to treat this one node with the Cyberknife radiotherapy which he had in August last year. Three sessions 50 mins per session. On his review this year it was found that his psa had again risen (now about 2 ) which has caused concern as a scan showed the node treated had been well and truly hammered, but that same scan showed two more nodes affected plus one more suspicious site which had been there originally but they feel may not be cancer. I am sorry this is fairly rambling but it is difficult to do direct (or I find it so). He had been taken off of hormones one month after his original treatment so has been off them for 7 months now. He went back to have another consultation at the end of Feb this year and then has had a further planning scan (they can fund up to three treatments for Cyberknife on the NHS then if any more are needed it is a case of paying oneself) and they will be treating both affected nodes on the 20th, 22nd and the 25th of this month so we will see what happens after that.
I doubt this is of any help but who knows
Katrina

User

Posted 08 Apr 2016 at 11:45

Hi Katrina,

Thanks for that. It is helpful.

Sounds like your husband, and you, have been on the same sort of roller coaster as we have.

When I had my Choline PET Scan last year my PSA was 2.4. This week the oncologist said it wouldn't be any good doing another one at the moment because nothing would show up until the PSA was at least 1.3. I'm hoping the chemo and then the Zoladex combined with the Bicalutamide that I'm already on will keep it below 1.3 for a while yet. Maybe they will, maybe they won't, so it's just hope.

We asked about a break from hormones and were told that's only an option when the PSA is stable, not when it's rising. It would be great to get to that stage.

All the best

Jim

User

Posted 08 Apr 2016 at 11:47

Hi Jim
This post is of great interest to me , as I am approaching further treatment choice roughly based on your journey and on Katrinas post above. After post op psa very quickly rising to 2.4 , my Onco has always been convinced there is spread elsewhere , and that the psa could not be being solely generated by anything left behind in the prostate bed. After my wife and I researched , and used various outside sources , it was clear that 35 sessions of RT wasn't going to fix the problem - it was merely going through the motions ( <18% chance of cure ). So we refused it based on that data and the fact I didn't want further side effects if unnecessary. So Bicalutamide it was , which is controlling psa at 0.13.
So where do we go from there ? Well , nowhere to be precise. I've not been offered cure , but I have been told I can come off HT and monitor psa frequently until it hits 5 or more before going for a second CholinePET scan. But here lies the problem noted in Katrina's post. The scanner can only pick up tumours bigger than 5 to 7 mm diameter. Someone could have a psa of 47 but nothing get picked up as it may be 16 small tumours generating it. Or someone could have a psa of 0.5 and the scan might pick up a single node which can be treated with cyber knife or something.
The reality in my situation is that they may find a couple of tumours which could be individually treated somehow , but there could be several others growing not yet large enough to be seen. So it would seem a losing battle and the reality is the person would need to remain on HT anyway. However I have been told that by doing this , survival rate would be better than just HT only and then the following treatments. I've not been offered any trials or early chemo , nor HIFU for the bit of seminal vessicle they left behind even though my surgeon has been on the local news for pioneering it between Southampton and UCLH.
Best wishes to everyone on the 'coaster
Chris

Sorry Jim you posted to Katrina whilst I was writing this

Edited by member 08 Apr 2016 at 11:51 | Reason: Not specified

User

Posted 08 Apr 2016 at 12:59

Hi Chris,

Your post was really interesting. Thanks.

If you want the early chemo and they haven't offered it, why not ask? It might be a case of them not being allowed to offer it but, if you ask, you get it?? I don't know if early chemo is beneficial in every case, but that's something you could ask, too.

Sometimes it can feel like everything we try is just going through the motions but, in my case anyway, I needed some sort of treatment because my waterworks were getting worse and worse. No treatment was not an option. Having had surgery I was told the first lot of radiotherapy on the prostate bed would (or should) "mop up" any cancer that remained. It was still believed that there was no spread beyond that area.

I'm still of the mind that I will try anything that could extend my life but that might change at some point if, when weighing up the pro's and con's, the con's start winning.

Cheers

Jim

User

Posted 08 Apr 2016 at 13:24

Hi Jim
Yes slightly different in that in my case they found 5 lymph nodes cancerous out of 18 removed at surgery. With such a high psa post surgery it seems it's normally something worse than just a bit they left behind. I've been ' lucky ' in that I'd had no symptoms at all other than occasional ED. The op has left me fully impotent but I'm fully continent. I wasn't going to open myself up for further potentially life-changing / harmful / cancer inducing radiation on a whim. But I know we are all different in our outlooks. My Onco was very honest from the start saying that the RT would not be a cure, nor extend my life. He later said they were " throwing the kitchen sink at me " because of my youngish age. Obviously in your case you needed extra treatment to fix your plumbing !!
I was very negative about any sort of treatment on diagnosis. I've moved away from that and am enjoying life more in some areas , however I'm a huge supporter of QOL not necessarily quantity , and haven't bothered remotely with diets or extra exercise or supplements ( tried Turmeric but it wrecked my stomach ). Each to their own heh.

User

Posted 08 Apr 2016 at 16:04

Admittedly you're younger than me, but don't spoil it for me - they keep on telling me I'm young (in the prostate cancer world) and I'm hanging on to that :-) 😄

User

Posted 08 Apr 2016 at 18:30

User

Posted 08 Apr 2016 at 20:34

Hi Mate

One thing you need to appreciate is that there is no logical path of progression. I was cured 18 months after surgery then it returned. I had salvage rt and was cured again for 14 months. Now, two years later having been on HT, I'm incurable but completely asymptomatic on Enza and Prostap. You need a creative ONCO with an open mind and a lack of ego to guide you through the treatment options available to you. Read lots, talk to many, go with the flow, but whatever you do, go with that flow.

Wishing you well brother.

Bazza

User

Posted 09 Apr 2016 at 13:29

Hiya Bazza,

Thanks for your post.

I've realised what you say about there being no logical path of progression. I was told my cancer was contained and that surgery would be a cure. Then I was told the salvage radiation would be, too.

After that I was told Bicalutamide would control it, but with the proviso that they didn't know how long for. Turns out it's probably controlled it for less than a year.

I think my onco is creative. She's certainly open to ideas and discussion and we get on really well. I would say she definitely hasn't got an ego. At our request she looked at my scans again last year and from that came the second load of radiotherapy, that time to the pelvic lymph nodes. I was told there were too many to remove and that the second lot of RT combined with the Bicalutamide would hopefully delay progression before something else would need to be done. I know the Bicalutamide shrunk the nodes before the second load of RT because the planning scan showed that.

When I asked her about early chemo this week she said definitely, if my next blood test confirmed the last one was not just a blip. She didn't think it was, but wanted to make sure. I'm fine with a few months wait as I don't really want to have chemo if it's just a blip.

Read lots?!?! Bloody 'ell, I think I've read every friggin booklet on prostate cancer that PCUK and Macmillan have published. I go to two different monthly support groups and I try to keep up on developments generally.

I read your profile, too. Bloody 'ell.

Cheers

Jim

User

Posted 09 Apr 2016 at 16:17

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