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Update on my journey. Get second opinions

User
Posted 29 Jun 2024 at 08:49

Hello everyone.   It has been a while since I first posted seeking assurances that I was not alone.   Of course I wasn’t and I am extremely grateful to have had the supportive messages since I posted.   I wanted to give an update on where I have got to and also wanted to share my experiences in the hope that it might help others who have been recently diagnosed. 

I am 56 had no symptoms and a blood test picked up a PSA of 4.07.   That resulted in a scan, biopsy and first consultation.   I want to pick up the story from there because there were some things I think are useful to bear in mind at that point.  

1. It is scary and disorienting to be in that position.  That’s fine.  Accept that this is not where you expected to be but that it is ok to have all sorts of emotions.  

2. Press your consultant to give clear advice.  My experience sadly was not great.  I accept this is a personal view but, being diagnosed with Pca is personal isn’t it.    My consultant seemed to be very breezy and in 30 minutes told me in a pretty round about way I had cancer.  He ( to me at least) seemed to rattle through two options. Robotic surgery or radiotherapy.  But he didn’t do any surgery and wasn’t able to give much detail on either options.    This is my first observation.    If you don’t feel you are getting the right support from your consultant get a second opinion.   It is I think crucial you speak to someone you have confidence in and has done a lot of operations ( if that is the route you are considering).   I was given a Macmillan booklet which had the back page torn out and where the diagnosis sections had been underlined by the consultant.     I was not filled with confidence.  

I asked to be referred to a surgeon who would do the operation and had a shortlist that I showed my consultant.    He was quite happy to refer me elsewhere.     That was a big decision and whilst I will not know for certain, I think was the best decision I made. 

2. Do your research.    This is not an area I knew anything about prior to my diagnosis but the internet can be a great tool ( but don’t get lost down a rabbit hole).  I searched under prostate cancer and treatment and pretty soon the same names kept appearing.   I won’t name them here but you can easily find out which surgeons have done a lot of operations and are experienced.   Choose the ones that have done a lot.   That is I think really important 

 

3. I then had my appointment with consultant number 2.   This was a game changer for me.    Again, a personal view but I felt this guy was listening to me.   He took control of the conversation which I needed. It is easy to get lost in detail that is not familiar.   He suggested a second opinion on the Gleason scoring ( the day before consultant 1 called me to say it had been upgraded to 8 but there was uncertainty about it).  I was referred to a radiotherapy consultant and had a PET scan booked in.  All of a sudden things were moving. I didn’t get this from consultant 1.

  This showed me that different consultants can have very different approaches.  Something I would not have known about if I hadn’t asked for a second opinion. 

the radiologist was excellent. He was thorough and went through the options and advised that he didn’t think radiotherapy was the right way to go.   I think I had reached that view as well but it was reassuring he felt this.   As I left he gave me a hug.  A small, but at the same time, massive thing for me.   I felt I was now in the right place.  

Return trip to consultant 2   PET scan was clear thankfully and did not show signs of spreading beyond the gland.    Again a very thorough review of options.   I discussed focal therapy but the Gleason score was too high to give confidence that it wouldn’t return.  For me, I have had some difficulty in coming to terms with the idea of having cancer.  It is such a loaded word and the prospect of waiting for regular PSA tests was a big worry.   But we explored it.   My consultant has done all types of treatment for over 20 years.   He has done over 1000 procedures of different types and gave me confidence he knew what he was talking about.   That is really important I think.  Get a surgeon who has done a lot of operations. 

we decided that an operation was the way forward.   My consultant has done key hole robotic and open and we have decided open surgery. He has done a lot and was confident that was the route with the best possible outcomes.    Hopefully nerve sparing but the hoped for outcome is 70% chance of regaining erections over time. 1 % chance of troublesome incontinence.    Time will tell but those are odds I am going to live with. 

so surgery in 4 weeks time.   4 days in hospital.  6 weeks recovery time is what I’m working on.  

only time will tell if I have made the right choice but I feel I have had a full review and support to arrive at this decision.   What I would urge though is if you are at the early stage do think of getting a second opinion if you can.   The two consultants couldn’t have been more different.    It may just be my own personal experience but whatever the outcome I am happy I landed with the right medical team.  

I hope this helps.    Bit nervous about the next step but I know I have to do this so am having to get my head round the prospect of surgery.   

all the best and have a good weekend everyone.  

 

User
Posted 29 Jun 2024 at 08:49

Hello everyone.   It has been a while since I first posted seeking assurances that I was not alone.   Of course I wasn’t and I am extremely grateful to have had the supportive messages since I posted.   I wanted to give an update on where I have got to and also wanted to share my experiences in the hope that it might help others who have been recently diagnosed. 

I am 56 had no symptoms and a blood test picked up a PSA of 4.07.   That resulted in a scan, biopsy and first consultation.   I want to pick up the story from there because there were some things I think are useful to bear in mind at that point.  

1. It is scary and disorienting to be in that position.  That’s fine.  Accept that this is not where you expected to be but that it is ok to have all sorts of emotions.  

2. Press your consultant to give clear advice.  My experience sadly was not great.  I accept this is a personal view but, being diagnosed with Pca is personal isn’t it.    My consultant seemed to be very breezy and in 30 minutes told me in a pretty round about way I had cancer.  He ( to me at least) seemed to rattle through two options. Robotic surgery or radiotherapy.  But he didn’t do any surgery and wasn’t able to give much detail on either options.    This is my first observation.    If you don’t feel you are getting the right support from your consultant get a second opinion.   It is I think crucial you speak to someone you have confidence in and has done a lot of operations ( if that is the route you are considering).   I was given a Macmillan booklet which had the back page torn out and where the diagnosis sections had been underlined by the consultant.     I was not filled with confidence.  

I asked to be referred to a surgeon who would do the operation and had a shortlist that I showed my consultant.    He was quite happy to refer me elsewhere.     That was a big decision and whilst I will not know for certain, I think was the best decision I made. 

2. Do your research.    This is not an area I knew anything about prior to my diagnosis but the internet can be a great tool ( but don’t get lost down a rabbit hole).  I searched under prostate cancer and treatment and pretty soon the same names kept appearing.   I won’t name them here but you can easily find out which surgeons have done a lot of operations and are experienced.   Choose the ones that have done a lot.   That is I think really important 

 

3. I then had my appointment with consultant number 2.   This was a game changer for me.    Again, a personal view but I felt this guy was listening to me.   He took control of the conversation which I needed. It is easy to get lost in detail that is not familiar.   He suggested a second opinion on the Gleason scoring ( the day before consultant 1 called me to say it had been upgraded to 8 but there was uncertainty about it).  I was referred to a radiotherapy consultant and had a PET scan booked in.  All of a sudden things were moving. I didn’t get this from consultant 1.

  This showed me that different consultants can have very different approaches.  Something I would not have known about if I hadn’t asked for a second opinion. 

the radiologist was excellent. He was thorough and went through the options and advised that he didn’t think radiotherapy was the right way to go.   I think I had reached that view as well but it was reassuring he felt this.   As I left he gave me a hug.  A small, but at the same time, massive thing for me.   I felt I was now in the right place.  

Return trip to consultant 2   PET scan was clear thankfully and did not show signs of spreading beyond the gland.    Again a very thorough review of options.   I discussed focal therapy but the Gleason score was too high to give confidence that it wouldn’t return.  For me, I have had some difficulty in coming to terms with the idea of having cancer.  It is such a loaded word and the prospect of waiting for regular PSA tests was a big worry.   But we explored it.   My consultant has done all types of treatment for over 20 years.   He has done over 1000 procedures of different types and gave me confidence he knew what he was talking about.   That is really important I think.  Get a surgeon who has done a lot of operations. 

we decided that an operation was the way forward.   My consultant has done key hole robotic and open and we have decided open surgery. He has done a lot and was confident that was the route with the best possible outcomes.    Hopefully nerve sparing but the hoped for outcome is 70% chance of regaining erections over time. 1 % chance of troublesome incontinence.    Time will tell but those are odds I am going to live with. 

so surgery in 4 weeks time.   4 days in hospital.  6 weeks recovery time is what I’m working on.  

only time will tell if I have made the right choice but I feel I have had a full review and support to arrive at this decision.   What I would urge though is if you are at the early stage do think of getting a second opinion if you can.   The two consultants couldn’t have been more different.    It may just be my own personal experience but whatever the outcome I am happy I landed with the right medical team.  

I hope this helps.    Bit nervous about the next step but I know I have to do this so am having to get my head round the prospect of surgery.   

all the best and have a good weekend everyone.  

 

User
Posted 29 Jun 2024 at 09:32

Totally agree ref second opinion. Did the same as was in a very similar situation. Thankfully had private insurance so fast and efficient to action. 

2nd Prof surgeon I engaged with had ~4000 ops under his belt and we just connected. 

I’d definitely recommend retzius sparing robotic surgery at a venue with latest kit. Da Vinci Xi or the new Single Port system both being used at Guys Cancer Centre (London Bridge). 

Definitely worth asking if NeuroSAFE is also carried out during surgery as adds significant visibility advantages (in near real-time) while you are open in theatre and enhances best possible nerve preservation without sacrificing potential cancer control. 

Best of luck with the upcoming surgery. I was very nervous also but right away post surgery it truly felt like no more involved than having my tonsils out…less so in many respect but take it very easy for 3 months.

Edited by member 29 Jun 2024 at 09:38  | Reason: Not specified

User
Posted 29 Jun 2024 at 09:40

A great post Matthew. Thank you.

Obviously, consultants, like most professions, will vary enormously. In my experience half were good, and some of those were excellent. The other half were poor, and some of those I wouldn't have paid in washers.

I understand that in the grand scheme of things patients are just a number. Clinicians deal with us day in and day out. However, I would have thought it was still part of their jobs to show compassion and care.

I'm pleased that you now feel that you are in safe hands. I hope that your care plan runs smoothly and that you make a full and speedy recovery.

Best of luck mate.

User
Posted 01 Jul 2024 at 16:21

After an MRI scan followed by a Biopsy

My Surgeon confirmed that it was localised Cancer.

The Surgeon gave me 2 options Radiation or Surgery both options work well with side effects.

I made an appointment with an Oncologist to get his view followed by an appointment with a Robotic Surgeon.

After careful consideration I opted the Surgery route. I did a lot of research about the Robotic Surgery and discovered it was a minimum invasive procedure with quicker recovery time and shorter hospital stay.

I am 2 weeks post op all going well so far. Just the leakage trying to manage as it goes with the procedure.The Robotic insertions for entry healed well with less pain. Take lots of rest no over exertion or straining.

Did a post op visit to the Surgeon was informed that the prostrate biopsy after removal showed localised Cancer it did not spread to nearby Lymph Nodes.

Will follow up in 3 Months.

 

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User
Posted 29 Jun 2024 at 09:32

Totally agree ref second opinion. Did the same as was in a very similar situation. Thankfully had private insurance so fast and efficient to action. 

2nd Prof surgeon I engaged with had ~4000 ops under his belt and we just connected. 

I’d definitely recommend retzius sparing robotic surgery at a venue with latest kit. Da Vinci Xi or the new Single Port system both being used at Guys Cancer Centre (London Bridge). 

Definitely worth asking if NeuroSAFE is also carried out during surgery as adds significant visibility advantages (in near real-time) while you are open in theatre and enhances best possible nerve preservation without sacrificing potential cancer control. 

Best of luck with the upcoming surgery. I was very nervous also but right away post surgery it truly felt like no more involved than having my tonsils out…less so in many respect but take it very easy for 3 months.

Edited by member 29 Jun 2024 at 09:38  | Reason: Not specified

User
Posted 29 Jun 2024 at 09:40

A great post Matthew. Thank you.

Obviously, consultants, like most professions, will vary enormously. In my experience half were good, and some of those were excellent. The other half were poor, and some of those I wouldn't have paid in washers.

I understand that in the grand scheme of things patients are just a number. Clinicians deal with us day in and day out. However, I would have thought it was still part of their jobs to show compassion and care.

I'm pleased that you now feel that you are in safe hands. I hope that your care plan runs smoothly and that you make a full and speedy recovery.

Best of luck mate.

User
Posted 01 Jul 2024 at 16:21

After an MRI scan followed by a Biopsy

My Surgeon confirmed that it was localised Cancer.

The Surgeon gave me 2 options Radiation or Surgery both options work well with side effects.

I made an appointment with an Oncologist to get his view followed by an appointment with a Robotic Surgeon.

After careful consideration I opted the Surgery route. I did a lot of research about the Robotic Surgery and discovered it was a minimum invasive procedure with quicker recovery time and shorter hospital stay.

I am 2 weeks post op all going well so far. Just the leakage trying to manage as it goes with the procedure.The Robotic insertions for entry healed well with less pain. Take lots of rest no over exertion or straining.

Did a post op visit to the Surgeon was informed that the prostrate biopsy after removal showed localised Cancer it did not spread to nearby Lymph Nodes.

Will follow up in 3 Months.

 

 
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