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Salvage radiation timing

User
Posted 24 Jan 2024 at 11:22

Hi all

 Following a RARP in March last year I was happy to get two  successive undetectable PSA tests. 

Unfortunately, the last three tests have shown a rise, with a rapid (7 week) doubling time. I believe my PSA is now around 0.45.

 I had a MRI  scan a fortnight ago and have been told that it shows an enlarged pelvic lymph node. A psma scan has been completed at a different hospital (long story), but I have not officially been given the result as yet. Hormone therapy and salvage radiotherapy have been advised along with a transfer from urology to oncology

 Does anyone on the forum have any recent experience of waiting times for radiotherapy to begin ?  My urology department (Blackpool ) could not give me any estimation of this. I was looking forward to a holiday in the USA in April -this has been re -booked as I missed my  holiday last year because of my prostatectomy op . I lost my money as I did not have insurance. My insurance quotation this year is £1500 for the week in USA. largely I think because of the uncertainty over my treatment.

Any advice would be most appreciated.

John

User
Posted 24 Jan 2024 at 12:03
Hi John,

generally, you would be on hormone therapy for 3 to 6 months before having the radiotherapy so I think your holiday in April is safe.

Even if the oncologist said you didn't need HT, they will be happy to wait until you return from your trip before starting RT.

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

User
Posted 24 Jan 2024 at 12:01

Originally Posted by: Online Community Member

Hi again John.

I'm afraid I cant help you with any of queries. The furthest I travel is to Cleethorpes, but I know there are several lads on here who are dealing with a similar situation as yours. I'm sure they'll be along and help you out. I just wanted to say I'm sorry you've had disappointing results, and best of luck going forward.

I had the same op a month before you. Do you mind giving the cancer staging and Gleason score of the removed prostate? Mine weren't too promising, increasing the likelihood of needing salvage treatment in the future. 

Hi Adrianus- My Gleeson score was upgraded from 4+ 3 =7 to 4+5 =9 after the op. No nodal involvement at the time and no seminal vesicle involvement. Possible positive margin.  

 To be honest I was expecting a recurrence- but a few years grace would have been nice. I was 57 at diagnosis.

John

User
Posted 24 Jan 2024 at 12:29

Originally Posted by: Online Community Member
Hi Adrianus- My Gleeson score was upgraded from 4+ 3 =7 to 4+5 =9 after the op. No nodal involvement at the time and no seminal vesicle involvement. Possible positive margin.  

 To be honest I was expecting a recurrence- but a few years grace would have been nice. I was 57 at diagnosis.

Thanks for your prompt and helpful reply John.

Same Gleason 9 (4+5) as mine. My staging was T3a and there was EPE (extra prostatic extension)

Adrian.

Edited by member 24 Jan 2024 at 12:30  | Reason: Not specified

User
Posted 24 Jan 2024 at 19:13

I was in a similar situation to you.  I was put on hormone therapy (bicalutimide) for 3 months before I started radiotherapy.  I agree with Lynn that your holiday is safe, but you might need to update your insurance company.

User
Posted 24 Jan 2024 at 20:05
have a look at insurancewith.com and their travel insurance , they ask the right questions and if asked may do you a policy without cancer perhaps .

Gave me a quote of £150 for my wife and self for 2 weeks in the Canary Islands I am Type 2 diabetic too and my wife is asmatic.

Hope you find reasonable cover somewhere and really enjoy a holiday .

MIKE

User
Posted 24 Jan 2024 at 23:29

Originally Posted by: Online Community Member
Is it possible to completely exclude the condition from a policy so the cancer is at my own risk ?

It is possible but the insurance company isn't protecting themselves from you dying of prostate cancer (or any other cause) on holiday - the risk for them is exactly the situation you are in now - a person books a holiday and then has to cancel it & wants their money back due to a change of treatment plan, appointment timing, new treatment causing new side effects, etc. Since you don't know yet what your oncologist is going to recommend, it would be madness to opt for a policy that excludes PCa right now! 

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

User
Posted 24 Jan 2024 at 23:44

HI,

I wonder if your psma was at Liverpool.   I'm being treated at Preston and they said they'd send me there if it got to 0.4 which I thought was too high, but that's another story.

When I had my op I had a holiday to Australia booked and I cancelled payments that became due before I knew the operation date, or asked if they'd allow the booking to be deferred.  The airline was the best as they said they'd allow postponement up to 24hrs before flight.  It ended up that I went as planned 8 weeks after my op.

I think your RT will be at Preston.  My psa is stable at a detectable level so I still have regular psa tests 7yrs after the op.  They told me over a year ago if my psa reaches 0.2 I'd be referred to Oncology and would expect an appointment in 2-3 weeks which may or may not result in scans and hormones before RT.   I'd think that with hormones they could put off RT for a long time and sometimes they put people on hold by using hormones.

I think I'd be wanting to get started if hormones were needed in case there are reactions and you can then know about them and take whatever's needed.  It seems to me that you have a good case to ask for an early referral especially if you make your case about the holiday.

I didn't know about the cancer when I took out the insurance so they didn't ask for any extra as far as i can recall.   I've been on holiday since and excluded existing medical conditions although they said for the cancer if I wasn't being treated they would cover.      Going to the USA is always a difficult one as their health costs are high, my insurance is always Worldwide excluding USA.

Preston and Blackpool have Macmillan Nurses so I assume you have a named nurse to pursue.  I try not to bother them but if I feel a need I don't hesitate to ask.  They've always tried to help.  The Macmillan Nurses at Preston cover both surgery and oncology and can offer advice on both, I'm not sure if Blackpool's do that.

All the best Peter

 

p.s. I've just seen what Lyn has just written and yes there is a risk in excluding conditions.  If you've paid just the deposit you could perhaps hold off spending on insurance and lose the deposit if the insurance is a lot more.  Then pay for the insurance just before you need to pay the full price.  You might have met the Oncologist by then.    On insurance it's a risk not being insured no doubt and it needs thinking about.

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User
Posted 24 Jan 2024 at 11:46

Hi again John.

I'm afraid I cant help you with any of queries. The furthest I travel is to Cleethorpes, but I know there are several lads on here who are dealing with a similar situation as yours. I'm sure they'll be along and help you out. I just wanted to say I'm sorry you've had disappointing results, and best of luck going forward.

I had the same op a month before you. Do you mind giving the cancer staging and Gleason score of the removed prostate? Mine weren't too promising, increasing the likelihood of needing salvage treatment in the future. 

Edited by member 24 Jan 2024 at 11:56  | Reason: Additional text.

User
Posted 24 Jan 2024 at 12:01

Originally Posted by: Online Community Member

Hi again John.

I'm afraid I cant help you with any of queries. The furthest I travel is to Cleethorpes, but I know there are several lads on here who are dealing with a similar situation as yours. I'm sure they'll be along and help you out. I just wanted to say I'm sorry you've had disappointing results, and best of luck going forward.

I had the same op a month before you. Do you mind giving the cancer staging and Gleason score of the removed prostate? Mine weren't too promising, increasing the likelihood of needing salvage treatment in the future. 

Hi Adrianus- My Gleeson score was upgraded from 4+ 3 =7 to 4+5 =9 after the op. No nodal involvement at the time and no seminal vesicle involvement. Possible positive margin.  

 To be honest I was expecting a recurrence- but a few years grace would have been nice. I was 57 at diagnosis.

John

User
Posted 24 Jan 2024 at 12:03
Hi John,

generally, you would be on hormone therapy for 3 to 6 months before having the radiotherapy so I think your holiday in April is safe.

Even if the oncologist said you didn't need HT, they will be happy to wait until you return from your trip before starting RT.

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

User
Posted 24 Jan 2024 at 12:29

Originally Posted by: Online Community Member
Hi Adrianus- My Gleeson score was upgraded from 4+ 3 =7 to 4+5 =9 after the op. No nodal involvement at the time and no seminal vesicle involvement. Possible positive margin.  

 To be honest I was expecting a recurrence- but a few years grace would have been nice. I was 57 at diagnosis.

Thanks for your prompt and helpful reply John.

Same Gleason 9 (4+5) as mine. My staging was T3a and there was EPE (extra prostatic extension)

Adrian.

Edited by member 24 Jan 2024 at 12:30  | Reason: Not specified

User
Posted 24 Jan 2024 at 19:13

I was in a similar situation to you.  I was put on hormone therapy (bicalutimide) for 3 months before I started radiotherapy.  I agree with Lynn that your holiday is safe, but you might need to update your insurance company.

User
Posted 24 Jan 2024 at 19:47
The daft thing with the insurance is that my cancer itself isnt likely to cause me problems whilst I am away. It's having an accident or a heart episode that I would worry about and surely this is no more likely than in a person my age without cancer.

Is it possible to completely exclude the condition from a policy so the cancer is at my own risk ?

User
Posted 24 Jan 2024 at 20:05
have a look at insurancewith.com and their travel insurance , they ask the right questions and if asked may do you a policy without cancer perhaps .

Gave me a quote of £150 for my wife and self for 2 weeks in the Canary Islands I am Type 2 diabetic too and my wife is asmatic.

Hope you find reasonable cover somewhere and really enjoy a holiday .

MIKE

User
Posted 24 Jan 2024 at 23:29

Originally Posted by: Online Community Member
Is it possible to completely exclude the condition from a policy so the cancer is at my own risk ?

It is possible but the insurance company isn't protecting themselves from you dying of prostate cancer (or any other cause) on holiday - the risk for them is exactly the situation you are in now - a person books a holiday and then has to cancel it & wants their money back due to a change of treatment plan, appointment timing, new treatment causing new side effects, etc. Since you don't know yet what your oncologist is going to recommend, it would be madness to opt for a policy that excludes PCa right now! 

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

User
Posted 24 Jan 2024 at 23:44

HI,

I wonder if your psma was at Liverpool.   I'm being treated at Preston and they said they'd send me there if it got to 0.4 which I thought was too high, but that's another story.

When I had my op I had a holiday to Australia booked and I cancelled payments that became due before I knew the operation date, or asked if they'd allow the booking to be deferred.  The airline was the best as they said they'd allow postponement up to 24hrs before flight.  It ended up that I went as planned 8 weeks after my op.

I think your RT will be at Preston.  My psa is stable at a detectable level so I still have regular psa tests 7yrs after the op.  They told me over a year ago if my psa reaches 0.2 I'd be referred to Oncology and would expect an appointment in 2-3 weeks which may or may not result in scans and hormones before RT.   I'd think that with hormones they could put off RT for a long time and sometimes they put people on hold by using hormones.

I think I'd be wanting to get started if hormones were needed in case there are reactions and you can then know about them and take whatever's needed.  It seems to me that you have a good case to ask for an early referral especially if you make your case about the holiday.

I didn't know about the cancer when I took out the insurance so they didn't ask for any extra as far as i can recall.   I've been on holiday since and excluded existing medical conditions although they said for the cancer if I wasn't being treated they would cover.      Going to the USA is always a difficult one as their health costs are high, my insurance is always Worldwide excluding USA.

Preston and Blackpool have Macmillan Nurses so I assume you have a named nurse to pursue.  I try not to bother them but if I feel a need I don't hesitate to ask.  They've always tried to help.  The Macmillan Nurses at Preston cover both surgery and oncology and can offer advice on both, I'm not sure if Blackpool's do that.

All the best Peter

 

p.s. I've just seen what Lyn has just written and yes there is a risk in excluding conditions.  If you've paid just the deposit you could perhaps hold off spending on insurance and lose the deposit if the insurance is a lot more.  Then pay for the insurance just before you need to pay the full price.  You might have met the Oncologist by then.    On insurance it's a risk not being insured no doubt and it needs thinking about.

User
Posted 25 Jan 2024 at 07:51

John, things have progressed since my salvage RT nearly 6 years ago. At that time my consultant said he would be criticised for  letting my PSA go above 0.3 before starting treatment. 

There is lots of research out there about the timing of treatment and the optimum levels of PSA to get the best outcomes. 

Thanks Chris 

 
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