I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Change from local to advanced

Email this conversation Print this conversation
User
Posted 21 Nov 2019 at 19:55

Hello everyone,

I have not posted on here for a long time. I was angry and posted some things I definitely should not have. I have tried to apologise to one person in particular but the site won't let me. I am sorry.

Anyway my situation has changed. I was told by my onco only in April that PSA at ~0.2 I should look forward to living well into my eighties! I had to do a longer business trip to Japan so he recommended changing from my 12 weekly Prostap injection to a 24 week Decapeptyl injection which would take me from July up to December 2019. Routine Psa check when I returned and PSA went up to 2.17. CT scan clear, full body bone scan clear but he sent me for a Gallium 68 PSMA scan in London "just to be safe". 

Results from telephone call on Monday are spread to seminal vesicles and a small spot in the Pelvic bone. So it has metastisized and I am now in the "Advanced" prostate cancer club.

Onco wants to put  me on Abiraterone. I have returned for a short business trip to Japan returning 6th December to start the week after. I asked about starting on "PROPEL" trial he advised against as it is not proven yet. I asked about Chemotherapy and he said Abiraterone is his recommended initial treatment. I asked about getting tablets before I left and he said to just wait until I get back. Is waiting for 3 more weeks safe? Does anyone have any advice on my predicament now? 

Richard

Edited by member 21 Nov 2019 at 22:53  | Reason: Not specified

User
Posted 22 Nov 2019 at 11:22
Another 3 weeks is unlikely to make a difference and it probably isn't a good idea to start a new medication & then fly thousands of miles away - you don't know what kind of reaction you might have to the Abiraterone.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Nov 2019 at 23:21

My oh had arberatitone for almost 2 years and he was closely monitored every month as some people have side effects. One of these can be raised blood pressure. The drug works well.Some men have been on it for much longer.

Edited by member 24 Nov 2019 at 16:02  | Reason: Not specified

User
Posted 23 Nov 2019 at 07:39
Hi Rich sorry your cancer has raised its head again.

Pretty sure Old Barry has had his irradiated prostate retreated with FLA or HIFU, also can they treat the spot in your bone with RT?

IRUN is a shining example of how well guys can do on abiraterone.

User
Posted 24 Nov 2019 at 04:08
Hello Rich,

Sorry your original RT did not give you a better result. I know what a downer it is when you think your primary treatment has worked only to learn you need further treatment to eradicate or slow the advance of the cancer.

francij mentioned that I had had follow up HIFU or FLA. It was HIFU within a trial at UCLH in 2015. I will tell you what UCLH told me at the time of the procedure; They said I would not be given HIFU by them or get it anywhere else if it was firmly believed I had any cancer outside the Prostate and gave me the benefit of some doubt. So from what you say I don't think Focal Therapy would be an option for you and it only worked for me to a degree. They don't like the RT path of any subsequent RT to take very similar paths to the original RT, so it's usually reserved for treating a more remote site as a way of killing off that tumour (or small number of tumours - Oligometastases) and/or to reduce pain in bone.

You could get get another opinion on the best way forward but Oncologists can favour slightly different treatment approaches and it's hard to say another would have a better approach in your case.

Barry
User
Posted 24 Nov 2019 at 10:54

An interesting recent paper on the subject:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6390116/

 

User
Posted 24 Nov 2019 at 11:12

You might try contacting a centre which does stereotactic radiotherapy (such as Ciberknife).
They may be willing to treat a few hot spots, and this can sometimes be used after EBRT, depending on the availability of beam paths which haven't had max RT dose already.

User
Posted 24 Nov 2019 at 12:45
The issue will be that the hotspot is on the pelvis, which is likely to be where the radical RT was given.

Was the onco as certain as he could be that the hotspot is cancer? Have you fallen off your bike recently and possibly injured your pelvis?

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

User
Posted 24 Nov 2019 at 13:38

Originally Posted by: Online Community Member
The issue will be that the hotspot is on the pelvis, which is likely to be where the radical RT was given.

Checking back, I think the hotspots were identified with PSMA PET scan, so not liable to be mistaken for an injury (unlike a bone scan).

Most of the pelvis (bone) won't have received anywhere near max lifetime dose - the further from the original target area, the less dose received. It may be more difficult treating the seminal vesicles again, as I presume they must already have had full dose, being graded originally T3b. That does make one wonder why cancer survived there though - it's rare for cancer to survive in the target area, and when it reoccurs, it's usually outside the RT target area.

User
Posted 24 Nov 2019 at 15:24
I contacted the Royal Marsden when there was some doubt about a lymph node of mine beeing infected. (By three hospitals to one it was subsequently thought this was not the case). However, due to the possibility I asked the Marsden if they would connsider treating me with Cyberknife which they have and was told they would need to consider this in the light of the paths my original RT was delivered. So this supports what I said previously and also what Lyn said. I think the conclusion to the linked article is relevant "In the absence of strong evidence, treatment should be personalized, established by agreement with well-informed patients, and the patient circumstances and preferences should be taken into account."

Rich has had a PSMA scan which has produced findings but is does not, because with present technology this cannot be determined, identfy micro mets even should there be some there. It seems to me that Rich might do well to use his forthcoming meeting to discuss with his Oncologist, not only what is suggested now but alternatives that may be suitable at some stage to stop or slow advance. So this might include other possibilities such as radium 223 and immuno therapy treatments at appropriate time.

Barry
User
Posted 11 Dec 2019 at 23:56

I hope you do well on arberatitone. My oh took it for almost two years and did very well with hardly any side effects. Other patients did well for much longer and as each person is so different, it is hoped that you will be one of the lucky ones who can remain on it for a long time -it did bring the psa down significantly.

I wish you the very best for the future

 

User
Posted 12 Dec 2019 at 00:53
It might be several years - if you are concerned that your onco might be a bit too risk averse, you can ask for a referral to another oncologist or to a hospital that is involved in trials.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Dec 2019 at 21:36
No, you have already had your full quota of RT to the area so there can't be any further RT to the seminal vesicles.

Are you still on HT since the RT or did you stop after RT and then start again when your PSA began to rise?

You are not terminal but it does seem that the ono was suggesting that you are now in the incurable camp. He may just be a little ray of sunshine so perhaps contact your nurse specialist if you have one, or talk to the nurses here.

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

User
Posted 13 Dec 2019 at 14:54
Hi I think several means they don’t really know. But you can read the stories of many men on here whose several was and is a lot more than 2 or 3

Bri

User
Posted 19 Dec 2019 at 19:19

Hi Rich
Have a look at my profile ,I had early Chemo ,there maybe something in there to help you
Regards Barry

Show Most Thanked Posts
User
Posted 22 Nov 2019 at 11:22
Another 3 weeks is unlikely to make a difference and it probably isn't a good idea to start a new medication & then fly thousands of miles away - you don't know what kind of reaction you might have to the Abiraterone.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Nov 2019 at 23:21

My oh had arberatitone for almost 2 years and he was closely monitored every month as some people have side effects. One of these can be raised blood pressure. The drug works well.Some men have been on it for much longer.

Edited by member 24 Nov 2019 at 16:02  | Reason: Not specified

User
Posted 23 Nov 2019 at 06:44
Thanks for the replies. I just have to hope for the treatment to work as well as possible for as long as possible. Just like the thousands of others in similar positions! I have started reading Irvin Yalom's "staring at the sun" again and I will probably read Kathryn Mannix's "With the end in mind" as that helped last year. Does anyone have any other good suggestions for coping with shock test results and diagnosis?
User
Posted 23 Nov 2019 at 07:39
Hi Rich sorry your cancer has raised its head again.

Pretty sure Old Barry has had his irradiated prostate retreated with FLA or HIFU, also can they treat the spot in your bone with RT?

IRUN is a shining example of how well guys can do on abiraterone.

User
Posted 23 Nov 2019 at 08:02
Thanks for that. I was under the impression that RT is only given to areas of the bone for pain relief? Bear in mind I have never had any pain of any kind from prostate cancer! I understand that will most definitely change now it is just a matter of time.
User
Posted 24 Nov 2019 at 04:08
Hello Rich,

Sorry your original RT did not give you a better result. I know what a downer it is when you think your primary treatment has worked only to learn you need further treatment to eradicate or slow the advance of the cancer.

francij mentioned that I had had follow up HIFU or FLA. It was HIFU within a trial at UCLH in 2015. I will tell you what UCLH told me at the time of the procedure; They said I would not be given HIFU by them or get it anywhere else if it was firmly believed I had any cancer outside the Prostate and gave me the benefit of some doubt. So from what you say I don't think Focal Therapy would be an option for you and it only worked for me to a degree. They don't like the RT path of any subsequent RT to take very similar paths to the original RT, so it's usually reserved for treating a more remote site as a way of killing off that tumour (or small number of tumours - Oligometastases) and/or to reduce pain in bone.

You could get get another opinion on the best way forward but Oncologists can favour slightly different treatment approaches and it's hard to say another would have a better approach in your case.

Barry
User
Posted 24 Nov 2019 at 10:54

An interesting recent paper on the subject:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6390116/

 

User
Posted 24 Nov 2019 at 11:12

You might try contacting a centre which does stereotactic radiotherapy (such as Ciberknife).
They may be willing to treat a few hot spots, and this can sometimes be used after EBRT, depending on the availability of beam paths which haven't had max RT dose already.

User
Posted 24 Nov 2019 at 12:45
The issue will be that the hotspot is on the pelvis, which is likely to be where the radical RT was given.

Was the onco as certain as he could be that the hotspot is cancer? Have you fallen off your bike recently and possibly injured your pelvis?

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

User
Posted 24 Nov 2019 at 13:35

This was a short call on the telephone last Monday. I see him privately so only get to see him on Wednesday nights. I haven't been on my bike outside this year as I've been here in Japan for more than a hundred nights. I will need to ask other questions when I see him next. I saw the scans and sort of knew were a couple of dodgy findings. The seminal vesicle BCR is fairly easy to see and after he said the pelvic site I reckon I can see that (I know I'm not qualified). The question I have is that Abiraterone is next single attempt to treat alongside Prostap. I will need to ask him about SBRT as he has already said Abi is his prefered next step. This was not picked up on CT scan or full body bone scan. 

User
Posted 24 Nov 2019 at 13:38

Originally Posted by: Online Community Member
The issue will be that the hotspot is on the pelvis, which is likely to be where the radical RT was given.

Checking back, I think the hotspots were identified with PSMA PET scan, so not liable to be mistaken for an injury (unlike a bone scan).

Most of the pelvis (bone) won't have received anywhere near max lifetime dose - the further from the original target area, the less dose received. It may be more difficult treating the seminal vesicles again, as I presume they must already have had full dose, being graded originally T3b. That does make one wonder why cancer survived there though - it's rare for cancer to survive in the target area, and when it reoccurs, it's usually outside the RT target area.

User
Posted 24 Nov 2019 at 15:24
I contacted the Royal Marsden when there was some doubt about a lymph node of mine beeing infected. (By three hospitals to one it was subsequently thought this was not the case). However, due to the possibility I asked the Marsden if they would connsider treating me with Cyberknife which they have and was told they would need to consider this in the light of the paths my original RT was delivered. So this supports what I said previously and also what Lyn said. I think the conclusion to the linked article is relevant "In the absence of strong evidence, treatment should be personalized, established by agreement with well-informed patients, and the patient circumstances and preferences should be taken into account."

Rich has had a PSMA scan which has produced findings but is does not, because with present technology this cannot be determined, identfy micro mets even should there be some there. It seems to me that Rich might do well to use his forthcoming meeting to discuss with his Oncologist, not only what is suggested now but alternatives that may be suitable at some stage to stop or slow advance. So this might include other possibilities such as radium 223 and immuno therapy treatments at appropriate time.

Barry
User
Posted 11 Dec 2019 at 23:19
I have just returned from my consultation. I am to start Abiraterone in the next few days as I was told. I recorded the conversation and there is one particularly disturbing part. My oncologist says, "this is a setback but it is something we can deal with and I am still confident that we are talking several years. I realise that is maybe not as long as you want when you are your age."

It is definitely not as long as I want!

He emphasised that the seminal vesicals had full dose RT so the recurrence there is not good. The hot spot in the bone could be treated by several different ways but he couldn't rule out the existence of micro-mets.

Merry Christmas Richard!

User
Posted 11 Dec 2019 at 23:56

I hope you do well on arberatitone. My oh took it for almost two years and did very well with hardly any side effects. Other patients did well for much longer and as each person is so different, it is hoped that you will be one of the lucky ones who can remain on it for a long time -it did bring the psa down significantly.

I wish you the very best for the future

 

User
Posted 12 Dec 2019 at 00:53
It might be several years - if you are concerned that your onco might be a bit too risk averse, you can ask for a referral to another oncologist or to a hospital that is involved in trials.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Dec 2019 at 20:48

What am I missing? I didn't fully understand what he had told me about living for several years until I listened back to the recording. I thought he was saying how long he expected the Abiraterone to work! He always said there are still lots of tools in the bag yet I have not even started the second one and I am already terminal????

What is the significance of the recurrence/presence in the seminal vesicals? Can that not be treated again?

Edited by member 12 Dec 2019 at 21:08  | Reason: Not specified

User
Posted 12 Dec 2019 at 21:36
No, you have already had your full quota of RT to the area so there can't be any further RT to the seminal vesicles.

Are you still on HT since the RT or did you stop after RT and then start again when your PSA began to rise?

You are not terminal but it does seem that the ono was suggesting that you are now in the incurable camp. He may just be a little ray of sunshine so perhaps contact your nurse specialist if you have one, or talk to the nurses here.

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

User
Posted 13 Dec 2019 at 07:28

Thanks Lyn. I am still on Prostap and he said that would continue. I have just over a year of that left. I just find it such a strange thing to say? I mean what does several mean - a number more than 2 or 3 but not many?

User
Posted 13 Dec 2019 at 14:54
Hi I think several means they don’t really know. But you can read the stories of many men on here whose several was and is a lot more than 2 or 3

Bri

User
Posted 19 Dec 2019 at 19:19

Hi Rich
Have a look at my profile ,I had early Chemo ,there maybe something in there to help you
Regards Barry

User
Posted 20 Dec 2019 at 14:15
Thank you Barry. Was your chemo intravenous (docetaxyl?) or oral (Abiraterone or Enzolutamide?)?
User
Posted 20 Dec 2019 at 21:08


PSA from yesterday is now 4.4. That is a rapidly accelerating doubling rate. I suppose it makes no difference to treatment having only just started Abi today but it is not good is it? I am starting to feel a lot less worried as the possible outcomes are homing in to one thing! BTW Testerone <o.1 nmol/L :( 

Edited by member 20 Dec 2019 at 22:31  | Reason: Not specified

User
Posted 21 Dec 2019 at 05:29
The rapid rise is not good news, fingers crossed you will have a durable response with Abbi.

The fact your cancer can be seen with PSMA scans will mean it may be treatable with leutineum. Have you considered early treatment with that??

User
Posted 14 Sep 2020 at 11:45

I go to Freeman Hospital this afternoon for my first of 5 SABR treatments. This will be 50 Grays compared to the 2/3 Gray I had for the 37 tomotherapy sessions. My Onco says "I am confident that the SABR will be effective for the disease in the right ilium and that the Abiraterone will continue to be effective on the prostate and SV. Given the result of your PSMA PET CT i do not believe you have anything else to worry about.

I saw the scan for the first time and it is ~6.1cm at it's longest and on my RH hip. It all looked white on the scan but the Dr said it was "diffuse with a hot spot" that I could not differentiate. A radiotherapy Dr showed me the scan not my Onco.

My other worry is that my PSA has jumped to 6.13 on 3rd September from 3.18 on 9th July. I emailed him and said I was concerned about this but I suppose we need to see how effective the SABR is. He didn't reply...........?

User
Posted 14 Sep 2020 at 21:20
Good luck Rich, hope it sorts you out...
 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK