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Biochemical recurrence. What next? Age 56

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User
Posted 15 May 2019 at 10:49

My husband had RP in Sept 2016 for Prostate Cancer T2C. Gleason score revised up to 7 in some areas, 6 otherwise. Cancer in both lobes. 50% nerve sparing. 

All tests every 3 months to January 2018 were >0.1 and then he was to have another test in June. He didn't manage to (typical man🙄🙄) get that test until January 2019, after I had nagged him for 6 months. It was 0.3. 

 Back to urologist who was surprised, as the margins were clear and the cancer was supposedly contained in the prostate. (The original MRI had shown it near the prostate wall in one spot but we had been told that was nothing to worry about when they checked it after surgery) 

Repeat PSA in Feb was still 0.3. 

MRI was negative so we went to Heidleberg at considerable expense for the supposedly definitive PSMA Pet Scan. Nothing showed up. They repeated it...still nothing showed up. They suggested waiting till the PSA was about 0.5 and having the scan again. (Not available in Ireland and our insurance won't cover it as it's diagnostic as opposed to being a procedure) 

3 days later we had another PSA test and results this morning are 0.4. 

Our urologist said initially if nothing showed up on either MRI or PSMA scan he would go ahead with radiotherapy anyway. Is this not like trying to kill a mouse hiding under a seat in a football stadium?? 

I don't understand PSA doubling time and maybe we don't have enough tests to predict it yet but it's quadrupled in 16 months from undetectable. The question is should we fire ahead with indiscriminate radiotherapy now and hope it's just localised, or wait and get another PSMA pet scan when the PSA reaches .5? 

Are we even guaranteed they will see it then? It was 0.4 after all when they scanned him. 

Is it very risky to wait for a conclusive PSMA scan? And do we run the risk of another one being inconclusive? We had no idea that might happen. 

My husband is into quality of life, and would hate to have pointless radiotherapy if it's already in the bone. He also questions the long term benefits if any, of ADT. He has made such progress on the ED side and is having improving results without medication now, but would have put up with ED quicker than the moob he grew on one side during all of this (Thankfully it stopped)

More importantly we have 3 teenage children and he wants to be around for a good few years yet....he is only 56,(I'm 51)  so if it's curable he sure as hell wants it cured. 

I am trying to be strong, he is still the love of my life after 30 years together, and my best friend too. He himself is unbelievably strong so I have to pretend to be! I can't really talk about it to my friends. I find this site very helpful. Any advice appreciated, if delivered gently....feeling pretty fragile right now. 

User
Posted 15 May 2019 at 13:25
You could wait for the PSA to reach 0.5, 5 or 50 and still not guarantee that the scans will pick up any mets. On the up side, his PSA is behaving like a classic 'stray cells left in the prostate bed' so RT is probably highly likely to be successful - John's PSA behaved like your OH's and 7 years later it still seems that the RT was worthwhile.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 May 2019 at 14:03
The PSMA scan does not find PCa in about 8% of men due their receptors but for those where it does, the chances of it finding PCa increase with higher PSA levels. MRI does not always show the cancer cells either, particularly where these are thinly distributed rather than concentrated in an area(s). Having RT without a defined target is indeed shooting in the dark. The chances are greater that any cancer will be nearer the site of where the Prostate was so unless there are indications otherwise, oncologists seem to concentrate on this area. Whether to follow this route soon or wait until the cancer may rise to a level where it is more likely to show on a scan is a difficult decision and one best made by a patient in consultation with his consultant. It might also be worth asking about early chemo.

If you are prepared to say how much the actual PSMA now costs in Heidelberg, this could be of interest to others who are contemplating the scan in the UK. Obviously there is the greater cost of traveling to Heidelberg but I found it relatively inexpensive using Ryanair to fly to Hahn and then take the Hahn Express Coach to Heidelberg. Heidelberg is a lovely place to visit and stay for a few days to make a holiday.

Barry
User
Posted 15 May 2019 at 17:30

Hi Misty, You've done well to get your man to Heidelberg if he's unwilling to have a psa test.  He's a lucky man in that you've done that.  You've obviously done some homework.  I recalled reading something about the benefits of radiotherapy after recurrence and I found it.  Although it's fairly old, 2008 on the John Hopkins website which I find very useful and usually a source of hope.  There are always a lot of particulars about each case but here's an extract from the article and below is the link to it.   Perhaps there are others that people can point out.  After reading this my own opinion would be to get an appointment at Radiotherapy right away but to be honest that would have been my choice anyway.

'Among men who had received radiotherapy for prostate cancer recurrence, the probability of surviving 10 years was 86 percent, compared to 62 percent among those who did not have radiation. For patients with rapidly growing tumors, defined by a PSA doubling time of less than six months, the benefits of salvage radiation therapy existed regardless of Gleason score, a numerical value that measures prostate cancer aggressiveness.'

https://www.hopkinsmedicine.org/news/media/releases/Radiation_Therapy_Prolongs_Life_in_Men_with_Recurrent_Prostate_Cancer

 

User
Posted 15 May 2019 at 20:34
So, Misty,

It is confusing with so many algebraic signs and multiple decimal points, but it seems your Old Man no longer has cancer, just like me!

At my hospital, anything under <0.1 is classed as undetectable, as that’s as low as they go.

I have spoken with three consultants about this, and they all said that testing to multiple decimal points is pointless, save in rare cases.

What is important is successive rises in PSA over a number of tests.

Best of luck.

Cheers, John.

User
Posted 15 May 2019 at 22:28

Originally Posted by: Online Community Member

He is really worried about the potential side effects of (maybe pointless) radiotherapy and even worse ADT. He was told that he will have 7 weeks of it, 5 days a week. If he becomes impotent again as a result, is there any chance of that reversing? And do the side effects of ADT reverse? Finally why consider Chemotherapy now Barry?? That has never been mentioned.

RT and ADT can both cause impotence.

With RT, it doesn't tend to happen immediately, but after some time (typically years later, and gradual), and is permanent if it does, but there are workarounds.

ADT causes loss of libido quite quickly, and no libido can cause impotence. It is often stated that ADT causes impotence, but I'm not sure if there's any direct mechanism besides just loss of libido. I am in this situation - I am still fully potent (if that's a word) having been on ADT for some time, but with no libido, my mind will very easily drift to something else if there's any distraction, and then erection is lost but you can get it back again. Note that you must continue to have regular erections when you have no libido and no desire, in order to keep the penis working properly for when you recover libido after HT. Otherwise the erectile tissue becomes damaged through lack of use, and that's not repairable afterwards (other than with an implant). See https://community.prostatecanceruk.org/posts/t21301-Penis-size#post216227 for more details on this.

Loss of libido can also have serious effects on relationships, something that comes up here quite often. This needs to be fully understood by both partners using good levels of communication to work around the issues.

ADT normally reverses, but some side effects might not go in some people (hot flushes seems to be one that can hang around, but not everyone gets them at all). There are some people for which it doesn't reverse. The longer you are on it, the more chance of permanent effects. Some people do bail out of it early. Growing boobs can be avoided in most people by taking tamoxifen or having a one-shot RT to the breast, but the main problem here is these treatments are often not offered so you need to know watch for the symptoms and to ask for the treatments.

HT and RT are not to be taken lightly, but they may save your life, and you could well come out the other end with everything still working.

User
Posted 15 May 2019 at 23:32
John stopped the hormones after 6 months because he hated how they made him feel - but he has no ED from the RT and hasn't experienced any of the side effects like bowel problems. As Bazza says, for a chance of full remission it seems a no brainer to most men (but not all).
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Jun 2019 at 20:54

Misty

To state the obvious this is a very difficult one and he will have to come to his own decision with your input. I faced the same choice just over a year ago. Reluctantly I went for SRT and had to push for 6 months hormone therapy. My reason for doing so was to give myself the greatest chance of survival given that I am relatively young (turned 60 recently) and if i was going to do the SRT then I wanted to maximise its chances by adding HT. In for a penny in for a pound! I am not sure that I have taken the right decision because I may have had a re-occurence and this will be confirmed or not in my next PSA test in a couple of weeks. However you can only kick the balls as they come on to the pitch and the odds of "blind" radiation seem quite good. The radiation itself was OK. The hormone therapy was not great lots of hot flushes which disturbed sleeping patterns. The way I looked at it was not doing it was pretty much potentially giving up on the option of a cure at my age unless we all get lucky and something new is developed and gets to market relatively soon although I accept that some can get remission with other treatments. I wish you both all the best with your decision and hope it works out well whatever you decide to do.

 

Good luck

 

 

User
Posted 29 Nov 2019 at 16:29
Hi Misty if you’ve followed my story you will see I’ve just left my cancer since op in June 15. I had 2 PET scans at psa roughly 3 and never found anything. Essentially the greater the psa the better hopes of seeing something. My psa is now over 200 and after years of scans etc they have eventually found spread meaning I will have to start HT or Chemo etc. I too have put all treatment off and have loved the 4 1/2 yrs freedom it gave me with full recovery from surgery in all areas. His psa is still very low so no panic yet hopefully. I too have always said no treatment but I guess when you get there then you have to. I decide in Feb after final scan analysis. Good luck
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User
Posted 15 May 2019 at 12:54
There is a correspondent here who has had all the scans under the sun, but no metastases can be found. He has eschewed HT and RT, although his PSA is increasing, and was at the last count, in the eighties. He is still enjoying life.

Just today, my mate who had a prostatectomy this year had his first PSA post-op which was 0.1. He has had the most expensive scans money can buy, yet they can’t pin-point any metastases. He is looking at HT and RT.

I think in your case HT should be started immediately, and thereafter whatever your oncologist recommends.

Best of luck.

Cheers, John.

User
Posted 15 May 2019 at 13:25
You could wait for the PSA to reach 0.5, 5 or 50 and still not guarantee that the scans will pick up any mets. On the up side, his PSA is behaving like a classic 'stray cells left in the prostate bed' so RT is probably highly likely to be successful - John's PSA behaved like your OH's and 7 years later it still seems that the RT was worthwhile.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 May 2019 at 14:03
The PSMA scan does not find PCa in about 8% of men due their receptors but for those where it does, the chances of it finding PCa increase with higher PSA levels. MRI does not always show the cancer cells either, particularly where these are thinly distributed rather than concentrated in an area(s). Having RT without a defined target is indeed shooting in the dark. The chances are greater that any cancer will be nearer the site of where the Prostate was so unless there are indications otherwise, oncologists seem to concentrate on this area. Whether to follow this route soon or wait until the cancer may rise to a level where it is more likely to show on a scan is a difficult decision and one best made by a patient in consultation with his consultant. It might also be worth asking about early chemo.

If you are prepared to say how much the actual PSMA now costs in Heidelberg, this could be of interest to others who are contemplating the scan in the UK. Obviously there is the greater cost of traveling to Heidelberg but I found it relatively inexpensive using Ryanair to fly to Hahn and then take the Hahn Express Coach to Heidelberg. Heidelberg is a lovely place to visit and stay for a few days to make a holiday.

Barry
User
Posted 15 May 2019 at 17:30

Hi Misty, You've done well to get your man to Heidelberg if he's unwilling to have a psa test.  He's a lucky man in that you've done that.  You've obviously done some homework.  I recalled reading something about the benefits of radiotherapy after recurrence and I found it.  Although it's fairly old, 2008 on the John Hopkins website which I find very useful and usually a source of hope.  There are always a lot of particulars about each case but here's an extract from the article and below is the link to it.   Perhaps there are others that people can point out.  After reading this my own opinion would be to get an appointment at Radiotherapy right away but to be honest that would have been my choice anyway.

'Among men who had received radiotherapy for prostate cancer recurrence, the probability of surviving 10 years was 86 percent, compared to 62 percent among those who did not have radiation. For patients with rapidly growing tumors, defined by a PSA doubling time of less than six months, the benefits of salvage radiation therapy existed regardless of Gleason score, a numerical value that measures prostate cancer aggressiveness.'

https://www.hopkinsmedicine.org/news/media/releases/Radiation_Therapy_Prolongs_Life_in_Men_with_Recurrent_Prostate_Cancer

 

User
Posted 15 May 2019 at 19:13

Thanks for all your replies😊. The Scan in Heidelberg cost us approx E2000 with flights, hiring a car and a hotel for two nights on top of that. ... an expensive but worthy weekend away, (Heidelberg IS SO beautiful).  All fine and good once you get to know where your cancer is!

In fairness to my OH, Peter, it wasn't that he didn't want to have a PSA test; it was more that he was extremely busy, combined with the difficulty of getting an appointment with his GP that didn't involve waiting around for about 2 hours🙄.  I also think, he was convinced he was cured, so this has been a bit of a blow. (Thank you for that hopeful article!)

This afternoon, my cousin, a radiologist in the USA, has suggested that as it looks like there is a steady growth, he would go with the urologists recommendations to take care of the microscopic disease as Lyn has also suggested.  My husband's response is that while before RP he talked a lot about not being too bothered about the prospects of ED in comparison to being alive, now having experienced being dead from the waist down, he is not in a hurry to go back there again. We have become even closer during our efforts to regain an active sex life, since the surgery.  He took it for granted before and often allowed it to wane with stresses of work and child-rearing getting in the way. Ironically we had just started to enjoy regular nights away without the kids the year this happened.

He is really worried about the potential side effects of (maybe pointless) radiotherapy and even worse ADT. He was told that he will have 7 weeks of it, 5 days a week. If he becomes impotent again as a result, is there any chance of that reversing? And do the side effects of ADT reverse? Finally why consider Chemotherapy now Barry?? That has never been mentioned.

User
Posted 15 May 2019 at 19:17

By the way got my signs mixed up....his tests were less than 0.1. I wondered why they weren't less than 0.01 but nobody listened to me and Chris did point out that everywhere has a different way of measuring. They did say undetectable.

User
Posted 15 May 2019 at 20:34
So, Misty,

It is confusing with so many algebraic signs and multiple decimal points, but it seems your Old Man no longer has cancer, just like me!

At my hospital, anything under <0.1 is classed as undetectable, as that’s as low as they go.

I have spoken with three consultants about this, and they all said that testing to multiple decimal points is pointless, save in rare cases.

What is important is successive rises in PSA over a number of tests.

Best of luck.

Cheers, John.

User
Posted 15 May 2019 at 20:57

I meant the original tests after RP sadly Bollinge. He has since had a biochemical recurrence with PSA now 0.4

User
Posted 15 May 2019 at 22:28

Originally Posted by: Online Community Member

He is really worried about the potential side effects of (maybe pointless) radiotherapy and even worse ADT. He was told that he will have 7 weeks of it, 5 days a week. If he becomes impotent again as a result, is there any chance of that reversing? And do the side effects of ADT reverse? Finally why consider Chemotherapy now Barry?? That has never been mentioned.

RT and ADT can both cause impotence.

With RT, it doesn't tend to happen immediately, but after some time (typically years later, and gradual), and is permanent if it does, but there are workarounds.

ADT causes loss of libido quite quickly, and no libido can cause impotence. It is often stated that ADT causes impotence, but I'm not sure if there's any direct mechanism besides just loss of libido. I am in this situation - I am still fully potent (if that's a word) having been on ADT for some time, but with no libido, my mind will very easily drift to something else if there's any distraction, and then erection is lost but you can get it back again. Note that you must continue to have regular erections when you have no libido and no desire, in order to keep the penis working properly for when you recover libido after HT. Otherwise the erectile tissue becomes damaged through lack of use, and that's not repairable afterwards (other than with an implant). See https://community.prostatecanceruk.org/posts/t21301-Penis-size#post216227 for more details on this.

Loss of libido can also have serious effects on relationships, something that comes up here quite often. This needs to be fully understood by both partners using good levels of communication to work around the issues.

ADT normally reverses, but some side effects might not go in some people (hot flushes seems to be one that can hang around, but not everyone gets them at all). There are some people for which it doesn't reverse. The longer you are on it, the more chance of permanent effects. Some people do bail out of it early. Growing boobs can be avoided in most people by taking tamoxifen or having a one-shot RT to the breast, but the main problem here is these treatments are often not offered so you need to know watch for the symptoms and to ask for the treatments.

HT and RT are not to be taken lightly, but they may save your life, and you could well come out the other end with everything still working.

User
Posted 15 May 2019 at 23:21

I had very similar. It worked for 14 months then failed when I went on ht. it’s so minimally invasive and so accurately targeted these days that in my view it’s worth the gamble. Of course microscopic mets could be in bones and be dormant in which case your OH will reoccur some time in the future - but what if those stray cells are just in the prostate bed? Then if RT was successful you’d be talking total cure. In my view (and I’m 10 years post dx,) salvage rt is a no brainier. If you don’t do it and your oh reoccurs, you’ll kick yourselves in the leg that you never took the chance while you had one.

good luck 

User
Posted 15 May 2019 at 23:32
John stopped the hormones after 6 months because he hated how they made him feel - but he has no ED from the RT and hasn't experienced any of the side effects like bowel problems. As Bazza says, for a chance of full remission it seems a no brainer to most men (but not all).
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 May 2019 at 10:49

Hi John. Can you send me a link to read his profile? Or can you remember what his username is? Would be interesting to read! 

User
Posted 16 May 2019 at 11:07

Hi again all. You are so great to get back to me. Lyn I hear ED comes on slowly after RT and is irreversible. At 7 years out do you think you are past the point it might otherwise have started? Also is your husband and his team still happy with his PSA scores? Is he considered cured or "living with cancer"? 

My husband this morning saying no way to prospects of HT, he'd rather die younger and happy ....but maybe he's being dramatic...he hasn't been up to now so I am going with it! He will go for RT when push comes to shove. Your post is hopeful. I wonder if there are any other younger men who have survived RT intact down the line! Doesn't seem to be a thread on that...or else I cant find it. 

I am also very interested in Arthur-Dents SpaceOAR gel implant to protect the bowel and have emailed the contact about availability in Ireland. Quite sure it's not available here or covered by insurance! We have known about the biochemical recurrence since January and despite going privately still creaking along waiting for a meeting to discuss treatment. I can't take credit for the PSMA Pet Scan though! 

Chris told me about that and while I was ready to ask about it the urologist came right out with it himself! 

User
Posted 16 May 2019 at 11:28
I don't think SpaceOAR is used where there is no longer a prostate.

Cheers, John.

User
Posted 16 May 2019 at 19:52

Originally Posted by: Online Community Member

Hi again all. You are so great to get back to me. Lyn I hear ED comes on slowly after RT and is irreversible. At 7 years out do you think you are past the point it might otherwise have started? Also is your husband and his team still happy with his PSA scores? Is he considered cured or "living with cancer"?

Yes, generally if it happens it develops over time and gets worse rather than better. Some men on here didn’t see problems until 10-15 years after RT so plenty of time yet. 

I suppose he is in a no man’s land at the moment - he isn’t in remission but nor does he officially have a recurrence so there is nothing to have to disclose to the travel insurer!

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

User
Posted 02 Jun 2019 at 20:54

Misty

To state the obvious this is a very difficult one and he will have to come to his own decision with your input. I faced the same choice just over a year ago. Reluctantly I went for SRT and had to push for 6 months hormone therapy. My reason for doing so was to give myself the greatest chance of survival given that I am relatively young (turned 60 recently) and if i was going to do the SRT then I wanted to maximise its chances by adding HT. In for a penny in for a pound! I am not sure that I have taken the right decision because I may have had a re-occurence and this will be confirmed or not in my next PSA test in a couple of weeks. However you can only kick the balls as they come on to the pitch and the odds of "blind" radiation seem quite good. The radiation itself was OK. The hormone therapy was not great lots of hot flushes which disturbed sleeping patterns. The way I looked at it was not doing it was pretty much potentially giving up on the option of a cure at my age unless we all get lucky and something new is developed and gets to market relatively soon although I accept that some can get remission with other treatments. I wish you both all the best with your decision and hope it works out well whatever you decide to do.

 

Good luck

 

 

User
Posted 29 Nov 2019 at 15:51

Hi All. It was decided not to do RT on my OH after we failed to get a result in Heidelberg. The urologist recommended waiting until the psa went up a little indicating that the cancer has become a little bigger and then go to Heidelberg again. We had a repeat test in August and psa was still 0.4 but now in November it has jumped to 0.6 indicating a doubling time of 9 months since the last 0.3 result in February. I guess that isn't great.

So OH saw the urologist today and we will go to Heidelberg again in January. I am worried that we may get another negative result because OH may be a non responder, but he tells me they told him it didnt show up last time because it was too small and he doesnt seem to want to know about other reasons for not getting a result. Is there any way of telling if you are a "non responder" or just somebody whose cancer is too microscopic for the machine to detect? They actually ran the test twice when he was there so maybe they felt he wasnt a "non responder" and it really was just too small to detect.

The big thing now is to find out where we are at. My OH is still saying he'd prefer to have 10 years being himself than 15 or 20 with incontinence. He is adamant no ADT and doubtful about RT but open to persuasion if it can be targeted...which we wont know till we see if scan works.

Are there people on here who have had RT and not had side effects? I know Lyn's husband John hasn't at 7 years after it. Is there a fairly standard amount of time you get before incontinence will occur after RT and how long is it? What are the odds?  He will just want facts and figures!

I have been putting my head in the sand for the last 6 months because parking it is the only way I can deal with it. I am not able to talk about it as my OH is self employed and doesnt want his work to be affected. Our kids dont know yet because we have no plan and talking about it just makes it more real and makes me more anxious. Am I being selfish in thinking that in many ways it's harder for the person who is going to be left behind? I am only 52. My mother and sister were both widowed at 60 and my mother never got over it. I am so afraid I will be too. We live in a small city that is not our native city and my kids can't wait to leave for more exciting destinations...I will be very alone.

Any thoughts or advice welcome.

User
Posted 29 Nov 2019 at 16:29
Hi Misty if you’ve followed my story you will see I’ve just left my cancer since op in June 15. I had 2 PET scans at psa roughly 3 and never found anything. Essentially the greater the psa the better hopes of seeing something. My psa is now over 200 and after years of scans etc they have eventually found spread meaning I will have to start HT or Chemo etc. I too have put all treatment off and have loved the 4 1/2 yrs freedom it gave me with full recovery from surgery in all areas. His psa is still very low so no panic yet hopefully. I too have always said no treatment but I guess when you get there then you have to. I decide in Feb after final scan analysis. Good luck
User
Posted 29 Nov 2019 at 18:52

Best of luck in Feb Chris! You still have your prostate don't you? Is that why your psa scores are so high? (Or did they take it out in 2015? )

It seems you are unusual in that you chose not to have treatment...but then my OH is unusual too😁😁😏😏.

User
Posted 29 Nov 2019 at 19:18
Removal June ‘15 but multiple lymph involvement they hadn’t spotted. They offered RT several times but doubted it would be curative so I left it. I had a breakdown in hospital after surgery and wanted to be left alone. I’ve been pretty good up till now but feel like another one is coming :-((
 
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