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3 month wait for RP?

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User
Posted 07 Apr 2023 at 12:12

Hi, my OH has recently been diagnosed Gleason 7 (4+3) stage T3a/b 8/14 cores positive. We have gone private for a psma pet scan and subject to that being clear OH is leaning towards a RP but we have been told that there is a 3 month waiting list. We do have a meeting with oncology and surgeon on 21st April so can clarify this but should we be worried about a 3 month wait before surgery? Thanks 

User
Posted 07 Apr 2023 at 13:19
I was T3b and my choices were limited to HT and RT because there was too much risk of leaving something behind which would then require HT and RT anyway, so you may find that RP is taken out of the equation….seems to depend on you’re grade, age and to a certain extent which healtboard you’re in.
User
Posted 07 Apr 2023 at 21:13

KD23. I was a T3b diagnosis. The waiting list for RP in my area was at least six months. I was told that while I'm waiting I would be put on HT to stop the cancer in its tracks while I got to the end of what seemed like a very long queue. Part of the reason for opting for RP was so I could avoid HT. In the end I paid to have RP privately.

User
Posted 07 Apr 2023 at 21:58

Hi KD23,
Indeed, though I am now 67!
I was told I initially I was T2 but after the MDT they upgraded it to T3BN0M0. I was quite disappointed in this I must admit as it restricted my choices…but then ChrisBromsgrove (same age) had RP with a grade worse than me. My PSA at diagnosis was 36, he has 37. Cancer only on one side with suspected(only) invasion into the Seminal Vesicle. I was 4+3 on one side 3+3 on other. Cancer found only in. Cores on one side. They must have some way of deciding but I have no idea why I was not given the option of surgery…I was just told too much risk of recurrence as has happened in ChrisBromsgrove’s case.
Anyway choice made for me so just decided to get on with it.
HT at first was dreadful, brought on severe anxiety but Sertraline sorted it.
Then flushes hit me big time, sometimes every 30 mins mainly during the day but sweats at night as well, My personal folding fan goes everywhere with me. The turning point for me seemed to be the acupuncture which I started before Christmas. I had 6 sessions in total and at the end of it I was much better.
I’ve been gradually improving since then, I still get flushes but not as severe nor frequent, and you kind of learn to deal with them. That’s 9 months I’ve been on HT now due to delays and false starts that had nothing to do with me, and I’ve just started my RT this week.
Libido is more ore less non existent but it’s strange…I thought I would be frustrated at not being able to have a full sex life, but what I see is frustration from those that have had RP…they still have their libido but have ED which must be really frustrating. I am the opposite, I do have some ED but not totally - that might change after RT mind you, but I’m prepared for that. We’ve found other ways of giving and receiving pleasure and still share a lot of intimacy 😊
I’ve been having some trouble with joint ache and stiffness, but I think I might have been overdoing the walking a bit and it’s a bit better now.


HT has not stopped my life…..far from it, I walk, cycle, jet off to the sun whenever I can and be good to myself and my family. I’ve got another 2 years of HT after my RT is finished, so 3 years in total on top of 2 years of COVID being restricted so I’m just going to get on with life as best iI can and not waste it….and have a laugh, so important when you’re going through this ordeal. Writing my poem helped as well which you may have seen on my journey thread.
Finally Maggies, Men’s Cancer Support Group has been so helpful to me in coming to terms with this disease and being able to talk openly about it.
Feel free to ask me anything, if you’d prefer PM me.

Edited by member 08 Apr 2023 at 09:06  | Reason: Not specified

User
Posted 08 Apr 2023 at 07:51

So much valuable info Decho thank you! If OH has to go down HT route then I’ll be encouraging support with acupuncture. And it’s so good to read that HT doesn’t turn you into a complete zombie. These years are so important in terms of enjoying life so just love your attitude to grabbing life and doing as much as you can.


OH’s PSA was only 6.5 compared to yours and ChrisBromsgroves so can’t see that this will make him a priority for a RP 


Thanks once again 

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User
Posted 07 Apr 2023 at 13:19
I was T3b and my choices were limited to HT and RT because there was too much risk of leaving something behind which would then require HT and RT anyway, so you may find that RP is taken out of the equation….seems to depend on you’re grade, age and to a certain extent which healtboard you’re in.
User
Posted 07 Apr 2023 at 13:26

Thanks Decho- we were v surprised to be offered the option of RP because on the MRI the tumour was described as abutting the anterior wall of the rectum and I thought that it would be hard to remove the tumour with a clear margin without damaging the rectal wall given its location. Initially staged at T4 N0 on the mri. But at the MDT they decided to downgrade and offer RP. Must admit I’m a bit dubious 

User
Posted 07 Apr 2023 at 13:34

Just an add on Decho- can see your same age at my OH and on his mri there was evidence of seminal vesicle invasion in left side.


How are you getting on with the acupuncture? And any other problems with the HT? 

User
Posted 07 Apr 2023 at 21:13

KD23. I was a T3b diagnosis. The waiting list for RP in my area was at least six months. I was told that while I'm waiting I would be put on HT to stop the cancer in its tracks while I got to the end of what seemed like a very long queue. Part of the reason for opting for RP was so I could avoid HT. In the end I paid to have RP privately.

User
Posted 07 Apr 2023 at 21:58

Hi KD23,
Indeed, though I am now 67!
I was told I initially I was T2 but after the MDT they upgraded it to T3BN0M0. I was quite disappointed in this I must admit as it restricted my choices…but then ChrisBromsgrove (same age) had RP with a grade worse than me. My PSA at diagnosis was 36, he has 37. Cancer only on one side with suspected(only) invasion into the Seminal Vesicle. I was 4+3 on one side 3+3 on other. Cancer found only in. Cores on one side. They must have some way of deciding but I have no idea why I was not given the option of surgery…I was just told too much risk of recurrence as has happened in ChrisBromsgrove’s case.
Anyway choice made for me so just decided to get on with it.
HT at first was dreadful, brought on severe anxiety but Sertraline sorted it.
Then flushes hit me big time, sometimes every 30 mins mainly during the day but sweats at night as well, My personal folding fan goes everywhere with me. The turning point for me seemed to be the acupuncture which I started before Christmas. I had 6 sessions in total and at the end of it I was much better.
I’ve been gradually improving since then, I still get flushes but not as severe nor frequent, and you kind of learn to deal with them. That’s 9 months I’ve been on HT now due to delays and false starts that had nothing to do with me, and I’ve just started my RT this week.
Libido is more ore less non existent but it’s strange…I thought I would be frustrated at not being able to have a full sex life, but what I see is frustration from those that have had RP…they still have their libido but have ED which must be really frustrating. I am the opposite, I do have some ED but not totally - that might change after RT mind you, but I’m prepared for that. We’ve found other ways of giving and receiving pleasure and still share a lot of intimacy 😊
I’ve been having some trouble with joint ache and stiffness, but I think I might have been overdoing the walking a bit and it’s a bit better now.


HT has not stopped my life…..far from it, I walk, cycle, jet off to the sun whenever I can and be good to myself and my family. I’ve got another 2 years of HT after my RT is finished, so 3 years in total on top of 2 years of COVID being restricted so I’m just going to get on with life as best iI can and not waste it….and have a laugh, so important when you’re going through this ordeal. Writing my poem helped as well which you may have seen on my journey thread.
Finally Maggies, Men’s Cancer Support Group has been so helpful to me in coming to terms with this disease and being able to talk openly about it.
Feel free to ask me anything, if you’d prefer PM me.

Edited by member 08 Apr 2023 at 09:06  | Reason: Not specified

User
Posted 08 Apr 2023 at 07:43

Thanks ChrisBromsgrove- that’s exactly what I’m expecting and what my OH wanted to avoid…so in the end you get the side effects from both lots of treatment! But at least I know now that 3 months wait isn’t unusual.

User
Posted 08 Apr 2023 at 07:51

So much valuable info Decho thank you! If OH has to go down HT route then I’ll be encouraging support with acupuncture. And it’s so good to read that HT doesn’t turn you into a complete zombie. These years are so important in terms of enjoying life so just love your attitude to grabbing life and doing as much as you can.


OH’s PSA was only 6.5 compared to yours and ChrisBromsgroves so can’t see that this will make him a priority for a RP 


Thanks once again 

 
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