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

Notification

Error

Why does the consultant give a 53 year old the option to monitor when it is likely to get worse ?

Email this conversation Print this conversation
User
Posted 17 Jun 2020 at 17:24

I had no symptons, however, following a routine blood test in February and subsequent MRI & biopsy, I was diagnosed 2 weeks ago. I am just 53 and have a PSA of 7.1 and Gleeson score of 7 (3+4). Eight of the 27 samples are showing moderate although it is contained within my prostate (albeit in 2 of the 4 sections). This is fortunately stage 2 and because of my age, health and fitness, radiotherapy is not being recommended due to longer term side effects. The nurse indicated radical surgery and removal although I may have a choice and option to monitor with surveillance. My mindset and research is suggesting that I should have it removed and deal with the side effects, but the consultant today has confused me, by saying that I have to decide on the action, but would not guide me as the expert and best way forward. My thinking is that it will not get better and that I will need another unpleasant biopsy in 12 - 18 months time, before I know if it is the same or got worse.  Are there others in my position who decided to monitor and then end up with surgery 18 months later or even worse find that the cancer had spread.  Your experience and feedback will be appreciated.   

User
Posted 17 Jun 2020 at 21:27

Hi Jon sorry to hear you've been diagnosed with this. You will find that a lot of people on this forum have been in exactly your situation, and I'm sure they will be letting you know their stories soon. My cancer was more advanced than yours so I had far fewer choices, and I'm glad about that, because it's a bit unfair expecting the patient to make a complicated decision when they are far from being an expert on the subject. 


There is quite a strong psychological desire to just cut the cancer out and be rid of it. But the side effects of any treatment are not very pleasant, probably not as bad as other cancers, and in most people's opinion (but not everyone's) better than dying from the disease. If you have the stomach for it there is a lot to be said for surveillance, if you can tolerate the uncertainty of having the disease inside of you, which may (but may not get worse). Delaying the treatment for a few years will give you a better quality of life.


Some people would say it's only going to get worse so you may as well grasp the bull by the horns. I don't agree with that argument, I'd say it would be like having all your teeth pulled out and dentures fitted because you'll probably end up with false teeth at some time and you may as well get it over with.


So the above are arguments that surveillance is sensible, but the contrary is that the disease does advance and may spread, in which case not treating early will look very foolish. I think you have to keep a close eye on the doctors who are alledgedly monitoring you, there are stories of the disease's advance not being picked up in time. 


I think most people on here would say with any G4 in the prostate it probably needs treating early.


In the end your going to have to make the decision about when to treat. Our stories are about our individual treatment they are not a scientific sample, but they may give you food for thought. 

Dave

User
Posted 18 Jun 2020 at 09:17
Hi Jon

I had scans biopsy,s etc from January of this year and was finally diagnosed on 3rd of March ,and had a radical prostatectomy on the 28th April unlike you I had no choice as I was told the cancer was very aggressive.i am 55 and always knew that after surgery the sexual side would be a big issue for me , lucky for me ( I hope ) the surgeon did save the nerves on my right side and was told with drugs and time I should have some activity back in that department. Having said that I just wanted to say having been told this I have had some real down days with thoughts of what if nothing returns , just think you need to be aware of the mental health side of it ,and only in my opinion everyone is quick to tell the physical side of this horrible disease but not the mental side . Jon I hope this post hasn't made you feel any worse than you already feel ,but just thought you need to be aware that the surgery side of things may only be the beginning

Good luck and best wishes
User
Posted 17 Jun 2020 at 21:00

Hi Jon, 


I didn't choose Active Surveillance.  


Doctors almost always leave it to the patient.


Some people accuse doctors of over-treatment.  Cases that could wait for years being given treatment right away.   I was offered Active Surveillance if I had a template biopsy.  I knew it was wasting good time.


Some people prefer to have a few more years of normal sex and take the risk the cancer is slow growing.  It often is.  Although with a 4 in it that's a risky judgement.


Some people find they're a higher grade when the prostate is removed and taken to the lab.   Mine was upgraded from 4+3 to 4+4.  Negative margins was the better news.


I don't like encouraging people to go down a route although it's hard to resist saying that for me getting it out asap was the utmost priority.  Nothing came near.


All the best
Peter

User
Posted 17 Jun 2020 at 21:08

Jon, at your age it will certainly need treatment eventually, but for some men sexual function is a big deal, so they delay loss of such function as long as possible. Only you can make the decision of how to balance the consequences of life-changing surgery (and make no mistake: it IS life-changing) with the knowledge that you will unquestionably need treatment at some point.


Some people want treatment at the earliest opportunity while others want to delay it as long as possible. Which camp you fall into only you know.


Best wishes,


Chris

Edited by member 17 Jun 2020 at 21:08  | Reason: Not specified

User
Posted 18 Jun 2020 at 00:57
As has been said, the decision it down to you. The surgeon apparently did not give reasons for what seems to be further late thoughts about the AS option but perhaps s/he wanted you to be sure that you wanted to go ahead at this time as surgery can have moderate to very severe side effects and it is possible that these could be deferred for some time albeit with careful monitoring. However, your d cancer might be rather more advanced than is presently thought. This has sometimes happened to some others who were in a similar position to you but decided to have a Prostatectomy and it was found to be the case when examined in the lab and they had been glad that had had the surgery. On the other hand, other men have a varying period of AS before radical treatment and this has worked for them. Even your surgeon can't give a guarantee one way or the other, so it's really up to you how you see it.

It's a rotten thing to have to consider and I wish you well, whatever you finally decide.
Barry
User
Posted 18 Jun 2020 at 07:50

Hi Jon M


I monitored for a couple of years and then had surgery. Although it was 3 + 4, it was just 2 cores at less than 5% and nothing on MRI. T1a


Main reason was I was in a new relationship and wasn't ready to deal with any side effects and the consultant was happy that I had some time.


Had surgery in the end - was T2C from histology report.


I think it took me quite some time to get my head around possible side effects. In the end they don't appear anything like as bad as I was imagining..... but every case is different and none of it comes with guarantees.


Good luck in your decision - you certainly seem to be getting there a lot quicker than I did


 

User
Posted 18 Jun 2020 at 10:15

No symptons


Was having 2 yearly PSA check and then saw a rise of 1.01 to 2.9. Because it was a rise of over 1 got sent for further checks and saw further rise which prompted MRI (nothing found) Biopsy (TRUS)  was 2 out of 12 cores less than 5% Gleason was 3+4


Didn't have any further biopsies but latest scan picked up 10mm tumour and stages as T2a


Histology report  was T2c Gleason 3+4 - so slightly worse than scan picked up.

User
Posted 18 Jun 2020 at 12:22

Good luck Jon M


Once I decided on surgery my priority was looking for a surgeon that specialised in nerve sparing operations and with a good reputation. I am sure someone can post you a link to case results from surgeons. There was also a link to a Daily Mail list of top 10 surgeons on this site ( must have been in the last week) My guy was on there as it happens although I chose him based on a recommendation from a doctor friend and 2 colleagues who he had operated on. Fortunately he was local to me as well. I was fortunate in that I went private although I think you do get a degree of choice on the NHS as well ( I think) 

User
Posted 18 Jun 2020 at 13:29

Originally Posted by: Online Community Member


Thank you Mike, my PSA is 7.1 and Gleason 7 but what concerns me overnight is that I am probably T2C and on my results and booklet it just says T2. I will be talking to the nurse and now pushing for surgery asap. Best wishes Jon



 


Worth checking with the nurse but they would usually be reluctant to suggest AS with a T2b or T2c so I wonder if the surgeon chucked it in as a possibility just because of COVID? 


I don't see anywhere that you have seen an oncologist yet - it is worth doing so before making a final decision re surgery. Surgeons generally recommend their own discipline and based on the stats you have given, it would make sense to fully explore brachytherapy and EBRT first. 

Edited by member 18 Jun 2020 at 16:27  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Show Most Thanked Posts
User
Posted 17 Jun 2020 at 21:00

Hi Jon, 


I didn't choose Active Surveillance.  


Doctors almost always leave it to the patient.


Some people accuse doctors of over-treatment.  Cases that could wait for years being given treatment right away.   I was offered Active Surveillance if I had a template biopsy.  I knew it was wasting good time.


Some people prefer to have a few more years of normal sex and take the risk the cancer is slow growing.  It often is.  Although with a 4 in it that's a risky judgement.


Some people find they're a higher grade when the prostate is removed and taken to the lab.   Mine was upgraded from 4+3 to 4+4.  Negative margins was the better news.


I don't like encouraging people to go down a route although it's hard to resist saying that for me getting it out asap was the utmost priority.  Nothing came near.


All the best
Peter

User
Posted 17 Jun 2020 at 21:08

Jon, at your age it will certainly need treatment eventually, but for some men sexual function is a big deal, so they delay loss of such function as long as possible. Only you can make the decision of how to balance the consequences of life-changing surgery (and make no mistake: it IS life-changing) with the knowledge that you will unquestionably need treatment at some point.


Some people want treatment at the earliest opportunity while others want to delay it as long as possible. Which camp you fall into only you know.


Best wishes,


Chris

Edited by member 17 Jun 2020 at 21:08  | Reason: Not specified

User
Posted 17 Jun 2020 at 21:27

Hi Jon sorry to hear you've been diagnosed with this. You will find that a lot of people on this forum have been in exactly your situation, and I'm sure they will be letting you know their stories soon. My cancer was more advanced than yours so I had far fewer choices, and I'm glad about that, because it's a bit unfair expecting the patient to make a complicated decision when they are far from being an expert on the subject. 


There is quite a strong psychological desire to just cut the cancer out and be rid of it. But the side effects of any treatment are not very pleasant, probably not as bad as other cancers, and in most people's opinion (but not everyone's) better than dying from the disease. If you have the stomach for it there is a lot to be said for surveillance, if you can tolerate the uncertainty of having the disease inside of you, which may (but may not get worse). Delaying the treatment for a few years will give you a better quality of life.


Some people would say it's only going to get worse so you may as well grasp the bull by the horns. I don't agree with that argument, I'd say it would be like having all your teeth pulled out and dentures fitted because you'll probably end up with false teeth at some time and you may as well get it over with.


So the above are arguments that surveillance is sensible, but the contrary is that the disease does advance and may spread, in which case not treating early will look very foolish. I think you have to keep a close eye on the doctors who are alledgedly monitoring you, there are stories of the disease's advance not being picked up in time. 


I think most people on here would say with any G4 in the prostate it probably needs treating early.


In the end your going to have to make the decision about when to treat. Our stories are about our individual treatment they are not a scientific sample, but they may give you food for thought. 

Dave

User
Posted 17 Jun 2020 at 21:28

Thank you Peter for taking time to share your experience. I have accepted surgery but was confused today when the consultant suggested monitoring. I hope you are ok today, best wishes Jon

User
Posted 17 Jun 2020 at 21:37

Thank you Chris, you certainly have to learn very quickly and take guidance from others, who have been through the experience. I am a decisive person, so provided that I accept the side effects/impacts, then I prefer to have some control/prevention over leaving something to chance. Thank you for taking the time to share your thoughts. I hope you are also ok today, best wishes Jon

User
Posted 17 Jun 2020 at 21:53

Sorry to learn about your experience Dave. It is interesting to learn that some people decide to take the waiting game, should this be an option. 
I personally am not a high risk taker and would like to have re-assurance, that surgery to remove is a positive step, provided that I accept the side effects. 
Very helpful to read and hear from other people and how they are handling so many different situations.


Covid has also no doubt affected some people needing treatment during 2020 and I hope that the excellent NHS team catch up soon. Best wishes on your continued treatment and future health, Jon

User
Posted 18 Jun 2020 at 00:57
As has been said, the decision it down to you. The surgeon apparently did not give reasons for what seems to be further late thoughts about the AS option but perhaps s/he wanted you to be sure that you wanted to go ahead at this time as surgery can have moderate to very severe side effects and it is possible that these could be deferred for some time albeit with careful monitoring. However, your d cancer might be rather more advanced than is presently thought. This has sometimes happened to some others who were in a similar position to you but decided to have a Prostatectomy and it was found to be the case when examined in the lab and they had been glad that had had the surgery. On the other hand, other men have a varying period of AS before radical treatment and this has worked for them. Even your surgeon can't give a guarantee one way or the other, so it's really up to you how you see it.

It's a rotten thing to have to consider and I wish you well, whatever you finally decide.
Barry
User
Posted 18 Jun 2020 at 07:50

Hi Jon M


I monitored for a couple of years and then had surgery. Although it was 3 + 4, it was just 2 cores at less than 5% and nothing on MRI. T1a


Main reason was I was in a new relationship and wasn't ready to deal with any side effects and the consultant was happy that I had some time.


Had surgery in the end - was T2C from histology report.


I think it took me quite some time to get my head around possible side effects. In the end they don't appear anything like as bad as I was imagining..... but every case is different and none of it comes with guarantees.


Good luck in your decision - you certainly seem to be getting there a lot quicker than I did


 

User
Posted 18 Jun 2020 at 09:17
Hi Jon

I had scans biopsy,s etc from January of this year and was finally diagnosed on 3rd of March ,and had a radical prostatectomy on the 28th April unlike you I had no choice as I was told the cancer was very aggressive.i am 55 and always knew that after surgery the sexual side would be a big issue for me , lucky for me ( I hope ) the surgeon did save the nerves on my right side and was told with drugs and time I should have some activity back in that department. Having said that I just wanted to say having been told this I have had some real down days with thoughts of what if nothing returns , just think you need to be aware of the mental health side of it ,and only in my opinion everyone is quick to tell the physical side of this horrible disease but not the mental side . Jon I hope this post hasn't made you feel any worse than you already feel ,but just thought you need to be aware that the surgery side of things may only be the beginning

Good luck and best wishes
User
Posted 18 Jun 2020 at 09:19

Thank you Barry for your valued feedback. It is becoming clearer that the individual has to understand the risks and is willing to you ahead with surgery now rather than delay which for some people and their early/less aggressive condition may be appropriate. Best wishes Jon

User
Posted 18 Jun 2020 at 09:31

Thank you for your feedback. Do you mind me asking if you had any symptoms before the blood test and do you mind sharing your biopsy results. We’re the results found worse after removal and test? Sorry about all the questions but thanks again for sharing your experience. Best wishes on a positive recovery and long future, Jon

User
Posted 18 Jun 2020 at 10:15

No symptons


Was having 2 yearly PSA check and then saw a rise of 1.01 to 2.9. Because it was a rise of over 1 got sent for further checks and saw further rise which prompted MRI (nothing found) Biopsy (TRUS)  was 2 out of 12 cores less than 5% Gleason was 3+4


Didn't have any further biopsies but latest scan picked up 10mm tumour and stages as T2a


Histology report  was T2c Gleason 3+4 - so slightly worse than scan picked up.

User
Posted 18 Jun 2020 at 12:02

Thank you Mike, my PSA is 7.1 and Gleason 7 but what concerns me overnight is that I am probably T2C and on my results and booklet it just says T2. I will be talking to the nurse and now pushing for surgery asap. Best wishes Jon

User
Posted 18 Jun 2020 at 12:22

Good luck Jon M


Once I decided on surgery my priority was looking for a surgeon that specialised in nerve sparing operations and with a good reputation. I am sure someone can post you a link to case results from surgeons. There was also a link to a Daily Mail list of top 10 surgeons on this site ( must have been in the last week) My guy was on there as it happens although I chose him based on a recommendation from a doctor friend and 2 colleagues who he had operated on. Fortunately he was local to me as well. I was fortunate in that I went private although I think you do get a degree of choice on the NHS as well ( I think) 

User
Posted 18 Jun 2020 at 13:29

Originally Posted by: Online Community Member


Thank you Mike, my PSA is 7.1 and Gleason 7 but what concerns me overnight is that I am probably T2C and on my results and booklet it just says T2. I will be talking to the nurse and now pushing for surgery asap. Best wishes Jon



 


Worth checking with the nurse but they would usually be reluctant to suggest AS with a T2b or T2c so I wonder if the surgeon chucked it in as a possibility just because of COVID? 


I don't see anywhere that you have seen an oncologist yet - it is worth doing so before making a final decision re surgery. Surgeons generally recommend their own discipline and based on the stats you have given, it would make sense to fully explore brachytherapy and EBRT first. 

Edited by member 18 Jun 2020 at 16:27  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Jun 2020 at 18:56

I spoke to the Uro-Oncology specialist nurse again today and they have confirmed 2C but it is contained within my small prostate. I have asked for surgery as my current situation and travel obstacles make it reasonable timing (if there ever is a good time).  I also have a very supportive family with the decision, and we plan to travel even more in the next two years, by which time, I hope the medical and health situation has improved. Nevertheless, it is surprising how many people are given different options and each have different views/motivation. Fingers crossed and best wishes to everyone who are having or had to make decisions regarding their prostate cancer results.

 
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