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Possible biochemical recurrence.

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User
Posted 11 Aug 2021 at 17:08

P 

No HT , it was thought it would be to toxic for the uretheral stricture.

Thanks Chris

 

 

 

User
Posted 11 Aug 2021 at 17:13

Originally Posted by: Online Community Member

P 

No HT , it was thought it would be to toxic for the uretheral stricture.

Thanks Chris

Ah, OK.

User
Posted 11 Aug 2021 at 19:29

Originally Posted by: Online Community Member
Can anyone who has had ADT please advise how easy it is to maintain the same weight /  physique during treatment? Assuming ADT alongside SRT, not long-term palliative ADT.

Quite a few people on here have had ADT for a short duration, two years in my case. Some as short as six months. I made no effort try and preserve my physique, I am not a gym bunny. My weight can go up and down by a stone depending on how many doughnuts I feel like eating, irrespective of ADT.

I think it will depend a lot on how much exercise you currently do? If none and you don't intend changing that then I think you will put on at least half a stone. If you are currently quite active you probably won't put on as much weight and a little bit of extra exercise would disguise it completely. 

In one of your earlier posts you said you are keeping your cancer private and have not told your children. I discuss my cancer quite openly, I laugh and joke about it, and I think all my friends and family are quite relaxed about it. I don't have to worry that A might accidentally find out from B, and then C will know but won't be able to mention it because they don't know who else knows.

If you do put on weight you could probably explain it away by buying four doughnuts a day, but if you eat them you will put on even more weight, you can't throw them away, because if someone notices them in the bin, they will think it very suspicious that you buy doughnuts and just throw them away. So you will have to sneak out in the middle of the night and bury them in the back garden. (I do offer a doughnut disposal service, but they must be jam doughnuts and I won't eat stale ones, so this service is only available to people who can deliver them to my house within six hours of purchase).

No secrets is an easier way to live as far as I'm concerned. You know your situation and your family better than I do, so make your own decision. I'm not offering you this link to encourage you to change your mind, just to be helpful if you do.

https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/talking-to-children-and-teenagers-when-an-adult-has-cancer

 

 

Edited by member 11 Aug 2021 at 19:33  | Reason: Not specified

Dave

User
Posted 11 Aug 2021 at 19:38

 

I know my children and the older they are before they are confronted with my problem the better (if it persists). One of them would certainly struggle if he thought I might die soon. Once he has left home and is independent it would hit him less badly.

I also have businesses in a fairly cutthroat sector. If word got around that I have cancer I would encounter all manner of problems.

Edited to add, I like the donut idea. I might buy a greyhound and tell the children it has developed a thyroid problem.

 

Edited by member 11 Aug 2021 at 19:40  | Reason: Not specified

User
Posted 11 Aug 2021 at 20:22

I am often referred to as an exception by members of the forum.

Diagnosed at 46 with T3a and Gleason 7.  PSA around 7.

Upgraded post radical prostatectomy to T3b and Gleason 9.  Seminal visicle involvement, positive margins, perineural spread.  Non nerve sparing.

Post operative PSA 0.014.  After 1 year, it had progressively risen to 0.023.  Oncogist recommended radiotherapy to the prostate bed.  She planned on a narrow field.  I asked for as wide a field as possible.  She was reluctant.  I also asked for ADT and she was resistant to say the least.

I paid for a PSMA scan.  It showed very small amounts of cancer in two nodes outside the narrow field She proposed but within the limits of the wider field she could treat.  She also agreed to bicalurimide.

I took one tablet per day for three months before 33 days of SRT.  Was on bicalutimide for 18 months in total.

Fatigue was, quite frankly, a challenge.  I put on about 8kg.  My body hair fell out, not ny head hair.  I also took tamoxifen to stop breast growth.

SRT finished 3 years ago, ADT 2 years ago.  My PSA since SRT has been stuck at <0.006.  The lowest they measure at my hospital.  My oncologist said that she would have expected a G9 to have reappeared by now.  She said it could still be there, but if it is it isn't behaving as aggressively as she expected.

Any regrets?  No.  I'm alive.  I'm well.  My daughter graduates next year as a doctor, my son in two years with a business degree.  He'll be the next Lord Sugar or the next Del Boy.  I'll get to both graduations.  I think I'll reach retirement and beyond.  Plenty of reason to think you'll still be running your business for many years.

Remember  oncogists know your case best.  Your PSA is only one factor in deciding when to go for salvage treatment.  But I personally would insist on at least bicalurimide.

I was lucky that my psma scan worked at 0.023.  It may have saved my life.

Finally, don't be afraid to challenge the medics.  Armed with what I'd learned here I am known as the most informed patient they've ever had.  This forum and the people on it are a force for good and a source of patient empowerment.  To all those who helped me to get to this point, alongside the pcuk specialist nurses  a huge thank you.

User
Posted 11 Aug 2021 at 21:37

Originally Posted by: Online Community Member

I am often referred to as an exception by members of the forum.

Diagnosed at 46 with T3a and Gleason 7.  PSA around 7.

Upgraded post radical prostatectomy to T3b and Gleason 9.  Seminal visicle involvement, positive margins, perineural spread.  Non nerve sparing.

Post operative PSA 0.014.  After 1 year, it had progressively risen to 0.023.  Oncogist recommended radiotherapy to the prostate bed.  She planned on a narrow field.  I asked for as wide a field as possible.  She was reluctant.  I also asked for ADT and she was resistant to say the least.

I paid for a PSMA scan.  It showed very small amounts of cancer in two nodes outside the narrow field She proposed but within the limits of the wider field she could treat.  She also agreed to bicalurimide.

I took one tablet per day for three months before 33 days of SRT.  Was on bicalutimide for 18 months in total.

Fatigue was, quite frankly, a challenge.  I put on about 8kg.  My body hair fell out, not ny head hair.  I also took tamoxifen to stop breast growth.

SRT finished 3 years ago, ADT 2 years ago.  My PSA since SRT has been stuck at <0.006.  The lowest they measure at my hospital.  My oncologist said that she would have expected a G9 to have reappeared by now.  She said it could still be there, but if it is it isn't behaving as aggressively as she expected.

Any regrets?  No.  I'm alive.  I'm well.  My daughter graduates next year as a doctor, my son in two years with a business degree.  He'll be the next Lord Sugar or the next Del Boy.  I'll get to both graduations.  I think I'll reach retirement and beyond.  Plenty of reason to think you'll still be running your business for many years.

Remember  oncogists know your case best.  Your PSA is only one factor in deciding when to go for salvage treatment.  But I personally would insist on at least bicalurimide.

I was lucky that my psma scan worked at 0.023.  It may have saved my life.

Finally, don't be afraid to challenge the medics.  Armed with what I'd learned here I am known as the most informed patient they've ever had.  This forum and the people on it are a force for good and a source of patient empowerment.  To all those who helped me to get to this point, alongside the pcuk specialist nurses  a huge thank you.

So, had you not paid for a PSMA scan things may have turned out badly.

I have a beard, presumably I'd lose that on HT?

 

 

Edited by member 11 Aug 2021 at 21:38  | Reason: Not specified

User
Posted 11 Aug 2021 at 21:57

Oddly, I kept my beard but it did certainly grow more slowly.  The other strange thing was i didn't sweat.  No deodorant for a year.

User
Posted 11 Aug 2021 at 22:04

Originally Posted by: Online Community Member

Oddly, I kept my beard but it did certainly grow more slowly.  The other strange thing was i didn't sweat.  No deodorant for a year.

So money saved at both the barber and Boots. Sound like a result. ;-)

 

User
Posted 11 Aug 2021 at 22:16

The side effects of bicalutamide and zoladex(and the like) are quite different. Bicalutamide can cause breast growth (which can be controlled). I think if you were on zoladex for six months no one would notice, other than a bit of weight gain. 

Dave

User
Posted 12 Aug 2021 at 19:34
If I may just comment on the weight angle-I was always pretty active, weight always around 65-67kgs for as long as I remember. Started on 3 yrs Zoladex Oct 2015 (nearly 2 yrs abiraterone, enzalutimide, prednisolone included as part of trial). I did stay as active as I could but seemingly overnight (exaggeration I know but felt like that) my weight went to 83kg. I did do bits of gym stuff, bike stuff and bits of windsurfing but basically I was 'shattered'.

It's just on 3 years now since effects wear off and down to 74kg at present but going right way.

Think it shows ADT affects us at different levels.

No regrets tho!

Peter

User
Posted 13 Aug 2021 at 06:53

 

Wow, that's over 25% body weight increase. When you consider that there will probably have been muscle atrophy, that is a lot of fat gained.

User
Posted 13 Aug 2021 at 18:26
Yes a lot of 'fat' whatever it was but at least I was expecting such things, most of it seemed to be around my stomach. Cannot deny that the weight gain didn't affect me mentally, I did struggle with it but, again, at least I sort of expected that. But, in all honestly, I'm over that now certainly and the treatment has done what it was supposed to do.

Peter

User
Posted 13 Aug 2021 at 20:54

I was not too badly affected by increased weight. I was 53 when I started ADT for two years.

This was on the news recently. 

https://www.google.com/amp/s/www.bbc.co.uk/news/health-58186710.amp

Most people with PCa will find themselves starting ADT. More or less exactly at the same time as their metabolism is starting to crash. Piers you are probably young enough not to suffer too severely.

The exact duration of ADT is up for debate. It is probably doing the greatest benefit in the six months prior to RT and for six months afterwards. Beyond that time its value may be less. 

If the oncologist thinks it appropriate I would start on ADT. If you don't like it then stop as soon as side effects become troublesome.

Obviously your decision is between you and your medics. This forum just gives different perspectives. 

Dave

User
Posted 15 Aug 2021 at 13:55
One of the things I found with HT was that as well as tending to do less exercise due to premature fatigue, what exercise I did was less vigorus than before I started HT and my waist size inevitably increased. This has continued to be a problem over the years, despite my only eating about half of the amount of food I used to consume. However, I used to play a lot of short tennis and table tennis and golf to a reasonable standard but am not now up to it, (back and legs), so it's now just slow walks. I really ought to do some gym work I guess!
Barry
User
Posted 15 Aug 2021 at 21:36

I had bicalutimide for 10 weeks prior to my surgery in June 2020. In that time I had moobs appearing and very sore nipples. I believe this was the start of breast budding. 

Been on Prostap for 8 months now. Moobs bigger than ever but no nipple pain. As mentioned elsewhere, I have really bad hot flushes. About 20 a day. I can manage for now.

One issue I do struggle with is fatigue in my legs and gluts. Really struggle to walk up hills and killing me on my hilly golf course.  It's not every day but very debilitating on the days it does appear.

Jim

 

User
Posted 16 Aug 2021 at 18:45
Yes, for me fatigue was a big issue us the general lack of strength. Whenever I was on the floor there was no way I could just get up again had to roll over and haul myself up using the couch/chair. It has been said that in general we get over effects of HT in 18 months or so but the effects may last for as long as we were on treatment. The latter certainly seems to be the case with me - I finished Zoladex summer 2018 and, in my opinion, getting over it 'properly' only recently. Doing a lot more now than even a few months ago and weight going down.

Peter

User
Posted 15 Sep 2021 at 16:33

 

Okay, so my latest PSA is 0.17. The data looks like this:

21 Jan 2020 = 0.04

20 April 2020 = 0.04

24 July 2020 = 0.04

10 November 2020 = 0.08

15 December 2020 = 0.05

16 March 2021 = 0.08

15 June 2021 = 0.14

22 June 2021 = 0.13

14 September 2021 = 0.17

The consultant said that I need to book a PSMA PET scan at 0.2. However, clearly things are heading the wrong way. Am I just wasting time by waiting till I tick over 0.2? Or would the scan be unhelpful at the current number?

Also, can anything be read into the data? Does it look like localised cancerous cells left over? Or could it be a small mets?

Many thanks

 

 

User
Posted 15 Sep 2021 at 17:38

The PSMA PET scan will not show up the cancer cells if there are not enough of them, so you need to wait until the PSA has reached a reasonably high threshold. I believe there are a few types of PSMA PET scan Galium, Choline, maybe others. I don't know which is more sensitive and what the PSA threshold is for each, hopefully Old Barry, or Andy62 will post they can probably remember.

Your pre-op PSA was 25 post op it was 0.04 that means the op removed about 99.84% of the cancer cells. If you post op PSA had been 2.5 we could clearly say 10% of the cancer was left and that would suggest it was in a met somewhere in your body, but in your case only 0.16% of the cancer was left in your body. Now it is an absolute certainty that if you had metastatic cancer at some point exactly 0.16% of the cancer would be metastatic, but I would say there was a higher probability that with a T3 operation that a small amount (0.16%) was left behind at the operation site. Certainly no guarantees, just reasonable probability. 

Dave

User
Posted 15 Sep 2021 at 19:45

 

Dave many thanks.

It might be "my fault" because I was given the opportunity to choose how the RARP was performed. I opted for higher risk in return for higher probability of erectile function. I am approaching 2 years and still need chemical help, or help from a band, so I seem to have the worst of both worlds, the ED and the cancer!

At least the increase was linear and not exponential.

That said, if the linear increase continues it will mean a 0.2 score in December, and I will be trying to get a scan and treatment in peak COVID season.

 

 

 

User
Posted 19 Sep 2021 at 02:15

ADT is not so bad, at least with me - just a few hot flashes now and then.

User
Posted 19 Sep 2021 at 07:22

 

 

I tend to run hot at the best of times. Being in a meeting and starting to sweat sounds like hell.

 

 

User
Posted 19 Sep 2021 at 10:17
Have you actually seen an oncologist now or are you still with the urologist?

From your numbers I'm not sure there is any benefit in waiting, if your cancer is PSMA+ chances are they will spot it at 0.17 just as easily as 0.2. Get the scan done.

User
Posted 19 Sep 2021 at 11:29

 

Still under the urologist.

I can get a PSMA PET scan done privately. What is the situation with oncos and radiotherapy through BUPA? Does anyone know? Or is it a NHS job?

 

 

User
Posted 19 Sep 2021 at 11:42
John had his RT consultations privately but the actual zapping was on the NHS. It is possible to have RT privately; usually just means you are on the same machines as NHS patients in the same NHS clinic but you get priority for choosing appointments, etc. There are also a small number of private hospitals with their own LINACs.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Sep 2021 at 17:02
Get a referral to an onco as soon as possible. The Urologist should have done this as soon as the primary treatment didn't deliver a < PSA
User
Posted 19 Sep 2021 at 17:31

Some private health insurance companies offer a cash reward if their clients opt for NHS RT treatment.

Thanks Chris

User
Posted 19 Sep 2021 at 18:07

 

Colwickchris

As you know, City Hospital can be a PITA to get to and park at. I have also had some pretty poor care there. So I am not massively enthusiastic to go back.

All

With regard to the urologist referring me immediately:

How important is time at this stage? My original cancer was quite aggressive and my PSA was rising quickly. However, it's now rising by about 0.01 / month. Is 6 months or a year really going to have much of an impact upon outcome? I am assuming that my readings are indicative of a fairly small number of cancer cells.

 

 

User
Posted 19 Sep 2021 at 20:36
If the treatment path is clear there is nothing to be gained by waiting. These are however questions best asked of an Onco not an egotistical surgeon (most are!).
User
Posted 20 Sep 2021 at 06:14

Private RT is available at the Genesis centre next to BMI The Park Hospital although that's a bit out of the way. I had my RARP up there this summer when City weren't performing surgery.

User
Posted 20 Sep 2021 at 16:20

Originally Posted by: Online Community Member

Private RT is available at the Genesis centre next to BMI The Park Hospital although that's a bit out of the way. I had my RARP up there this summer when City weren't performing surgery.

 

BMI The Park is quite convenient.

Spoke to the urologist today by email. He said that at 0.2 PSMA PET is 20% effective at spotting cancer cells and improves as PSA rises. But risk increases also. Hence his recommendation for scan at 0.2.

 

 

User
Posted 20 Sep 2021 at 19:22
There are also some prostate cancers that don't show up in a PSMA, choline or any other scan even at very high PSA levels.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Sep 2021 at 19:27

 

Well it showed up pre-surgery, so presumably it's the "right" type.

 

User
Posted 20 Sep 2021 at 21:57

You would hope so but ChrisJ's showed up pre-op - post-op his PSA reached 100 and still his scans were clear. Micromets have a nasty ability to make themselves invisible :-(

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

User
Posted 20 Sep 2021 at 22:02
If it is any consolation, your PSA is behaving like classic cells left behind in the prostate bed rather than micromets. However, I find it shocking that your urologist hasn't referred you to oncology yet - he is dragging his heels and I would not be happy if you were my man.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Sep 2021 at 06:31

 

So where were his metastasese Lynn?

If I were referred to an onco now, what dialogue would there be? There would only be guesswork as to where the cells are surely.

 

User
Posted 21 Sep 2021 at 09:27
His eventually turned up in PCs favourite places, suggest you read his bio if you want chapter and verse.

There are only 2 ways a positive scan can change your SRT treatment:

1 If it finds mets outside the pelvis your SRT won't happen as you would be incurable.

2 If it finds mets in your lymph nodes the treatment could be extended beyond the prostate bed to include lymph nodes too.

So waiting to detect stuff on a scan may cost you a 2nd chance at a cure. You could also request they zap your lymph nodes anyway as due to the proximity to the prostate bed this is more effective if done at the same time.

The best person to discuss these risks and issues with is on ONCO not a Urologist

User
Posted 21 Sep 2021 at 09:55

I’ve had a quick look through Lynn’s profile and cannot see the answer readily, but I am viewing it on my phone.

Any tips on how I find a good oncologist? When I was looking for a surgeon it was fairly easy to research them. Not so much with oncologists.

 

User
Posted 21 Sep 2021 at 15:04
It is ChrisJ she was referring to to. You need to check out his profile but remember his case is nothing like yours.

You want an ONCO that specialises in prostate oncology, I had a second opinion from The Royal Marsden. Interestingly it was almost the opposite of my first opinion! No one said this was easy!

User
Posted 21 Sep 2021 at 18:32

Originally Posted by: Online Community Member
It is ChrisJ she was referring to to. You need to check out his profile but remember his case is nothing like yours.

You want an ONCO that specialises in prostate oncology, I had a second opinion from The Royal Marsden. Interestingly it was almost the opposite of my first opinion! No one said this was easy!

 

Ah yes, I see now that I have re-read the thread on a PC.

I have a BUPA GP calling tomorrow, may also see if I can speak to one of their onco nurses and will get a consultation with a prostate oncologist. Even if I don't act on their advice, at least I have had it.

 

 

User
Posted 21 Sep 2021 at 23:25

Piers 

Saw this earlier today, no personal experience of them, but I perhaps should.

"At Guy's hospital in London, a number of prostate cancer clinicians with a specialist interest in recurrent prostate cancer have founded the Recurrent Prostate Cancer (RPC) clinic in order to offer men with recurrent disease access to the latest in diagnostic and therapeutic techniques for the treatment of their disease."

 

Thanks Chris

 

 

User
Posted 22 Sep 2021 at 01:20

Originally Posted by: Online Community Member

 

So where were his metastasese Lynn?

If I were referred to an onco now, what dialogue would there be? There would only be guesswork as to where the cells are surely.

 

 Onco don't use guesswork - they rely on years of experience and data from thousands of men. They look at your diagnostic results, post-op pathology, and your post-op PSA to assess what is likely to be happening. A low post-op PSA which climbs steadily is classic for cells left behind in the prostate bed. A positive margin indicates where cells are most likely to have been left behind. Seminal vesicle invasion does the same. A high post-op PSA that climbs rapidly indicates that the cancer had already escaped before the op. 

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

User
Posted 22 Sep 2021 at 06:51

Originally Posted by: Online Community Member

Piers 

Saw this earlier today, no personal experience of them, but I perhaps should.

"At Guy's hospital in London, a number of prostate cancer clinicians with a specialist interest in recurrent prostate cancer have founded the Recurrent Prostate Cancer (RPC) clinic in order to offer men with recurrent disease access to the latest in diagnostic and therapeutic techniques for the treatment of their disease."

 

Thanks Chris

 

 

Sorry, I missed this. I am going to look into it.

 

 

User
Posted 26 Sep 2021 at 08:06

 

OK so I've booked an onco appointment for Wednesday.

My main questions will be

1. "What course action do you suggest?"

2. "When would you start?"

3. "Is ADT necessary?"

4. What will the side effects be, short and long term?

 

Additional questions:

a. Should I get a PSMA PET scan now?

b. What happens if I do nothing?

Is there anything else I should be asking?

 

 

Edited by member 26 Sep 2021 at 08:30  | Reason: Not specified

User
Posted 26 Sep 2021 at 08:27
Is it worth a PSMA scan?

What happens if I do nothing?

User
Posted 27 Sep 2021 at 20:05

Okay, I've just had a chat with an onco.

These are the answers he has given me:

1. "What course action do you suggest?" - Start on bicalutamide and tamoxifen immediately.

2. "When would you start?" - Radiotherapy to start in 3 weeks.

3. "Is ADT necessary?" - Yes, very much so

4. What will the side effects be, short and long term? - Tiredness, aches and pains (from the bicalutamide). Urgency, frequency and rectal problems.

5. What about long-term? - 10% chance of worsening my current situation regarding continence, EF and gut.

Additional questions:

a. Should I get a PSMA PET scan now?- No, waste of time and money.

b. What happens if I do nothing? - You'll have metastatic disease after about a year, potentially.

What are my chances of survival?

Because I am quite young and had acinar adenocarcinoma:

Life expectancy - 90% 5-year.

10-year chance free from cancer. 65%

10-year 85-90% still alive but with cancer.

User
Posted 27 Sep 2021 at 20:23

I want to obtain at least one additional opinion, can anyone recommend someone please? Ideally someone "progressive" if that makes sense. I want someone who understands that I am quite young and quality of life is paramount.

User
Posted 27 Sep 2021 at 21:22
I am in a similar situation ( see my profile). PSA has been rising steadily since RARP in August 2020. I spoke to my onco who suggested a PSMA scan to see what they could find out. Turns out that the cancer has spread to one of my lymph nodes. He suggests ADT followed by SRT.

He seems to be "on the ball". I tried PMing you but I don't have the necessary post count. I'm not sure whether he does Private but his online profile seems to suggest he may have done so in the past. PM me if you want any more details

User
Posted 27 Sep 2021 at 21:32

 

Sent.

User
Posted 27 Sep 2021 at 21:35

I have to say that the onco tonight played down the sides of bicalutamide. Not quite to the point where he was recommending it as a party drug, but he would have it that it isn't bad news.

Would anyone care to comment, who has been on it?

User
Posted 27 Sep 2021 at 23:24

How long are you to be on ADT in total? My guess would be six months to two years, but have you heard a more precise timescale from the onco.

ADT (nearly) always starts with bicalutamide, but then after two weeks it is often switched to a one month or three month injectable. However some oncos just keep you on bicalutamide for the whole course of ADT. You really need to find out what the whole plan is for ADT, so the person with the most relevant experience can post their comments.

Mind you I don't think you are in a position to worry about side effects, this sounds like the last roll of the dice and I think you need to take your chance whilst you can.

If this fails you may still survive 15 years with metastatic disease, but that will need life long ADT and later chemo, etc. 

Dave

 
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