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User
Posted 06 Nov 2024 at 10:03

Hi, I would like some help or opinion on my Prostate cancer going forward.

I was diagnosed in 2020 with localised T2a- T1c 3+4 Cancer, 50 samples. Since then I have been monitoring PSA levels of 8.49 in 29/0920 to 10.00 in 13/09/23

This year I have 11.8/10.8/12.8, so I was asked to have a MP MRI they found no difference, so I was asked to have another Biopsy. This resulted in the cancer being downgraded to 3+3 present in 10 of 27 samples. I had a call from the Consultant and he was quite insistent on having surgery or Radiology. I quoted to him that Don Gleeson said that 3+3 should not be called Cancer. He couldn't explain to me why the PSA was so high and I was not showing any deterioration and what was the point in having another MRI and Biopsy if we revert back to the PSA level. I have refused and he is sending me another blood test for 3 months in the hope it has decreased and we will talk again after the blood test. I have told him to tell them at their meetings I will only consider Brachytherapy as it's the one with the best results and they can't promise me not to get impotency or incontinence from Surgery or Radiology. Brachytherapy is not done at this hospital, so I think that's why it's not offered. 

Any guidance would be appreciated.

User
Posted 06 Nov 2024 at 10:54
I think the problem is that PSA, MRI and biopsy do not identify the extent of the malignancy or aggressiveness accurately. This is only determined following a prostatectomy when a pathologist can view the whole prostate. If you look at posts on this forum very frequently the Gleason score is upgraded and more rarely downgraded and more extensive malignancy is identified. My husband’s PSA was similar to yours, he also had a very large prostate and initially following a MRI he was diagnosed as having one lesion, one side of the prostate but following his surgery he was found to have four lesions sited both sides of the prostate. These additional lesions were not identified on the MRI or by a targeted and systematic biopsy. They were small but not insignificant tumours.

I think whatever decision you reach you just need to be mindful that you and your consultants may not be fully aware of the extent or grading of your cancer even after repeated MRI and biopsies.

We still need to be led by our consultants it is just that we need to be mindful that they may not know fully what is going on. There have been a couple of cautionary tales posted recently about AS and some nasty surprises. At the end of the day of course it is your decision and yes radical treatments can impact on quality of life so careful consideration is a must.

User
Posted 06 Nov 2024 at 12:01

With 10 out of 27 cores showing cancer, it is looking like something will need doing soon. You were 3+4 now you are 3+3, I don't think the 4 has gone away they just didn't hit it with a needle this time, but I guess that does mean it must be a small quantity.

The treatment you prefer may not be the best treatment on clinical grounds, also there may be newer treatments you are not aware of for example SABR. If you are only being offered limited treatments because that is all the hospital can do then definitely get referred elsewhere for a better choice. 

Dave

User
Posted 06 Nov 2024 at 12:31

Yes, I would also go with the 4 hasn't gone away, just the biopsy was less effective. And this brings up the issue of how accurate are diagnosis anyway?

User
Posted 06 Nov 2024 at 14:05

Hi i had a choice of Robotic surgery or Brachytherapy but like you my local hospital did not do Brachytherapy but at the consultations a Brachytherapy specialist was at the hospital and he said he  thought  Brachytherapy was a good options with my numbers but i would have to travel to his hospital Mount Vernon about twenty miles away.

I agreed with this and had Brachytherapy in September 2016.  PSA 2.19 Gleason 3+4=7 T2 No Mo age 70.

I have had a good run with no real side affects, Click on my Avatar and see my journey so far.I was not sure what procedure to take as they all have risks and i can't guarantee the results as there are many variables in each case.

Good luck John.

Edited by member 06 Nov 2024 at 14:09  | Reason: Not specified

User
Posted 06 Nov 2024 at 17:03

Hi I just had a general anaesthetic just a needle in back of my hand and remember nothing until waking in recovery room, they gave me a cup pf tea and i had no real discomfort at all.No catheter at any time and was asked to pass urine into bottles to be checked for escaped seeds.

I was amazed at the lack of pain and was given pain killers.I was only really ready to eat and had a good nights sleep. you will get ED and depending on age and at 70 i expected it.I get 4 viagra a month but found morning erections came back after a while but will vary with different people. My PSA dropped slowly over the following years and is under <0.

John.

User
Posted 06 Nov 2024 at 20:36

Hello, I had Brachytherapy almost two years ago at the age of 63. Hopefully this link will take you to my treatment post.

https://community.prostatecanceruk.org/posts/t28690-LDR-Brachytherapy--Davekc10-s-treatment-journey

My latest PSA is 0.6

Update. Last month I was in hospital for five days due to a Urinary Tract Infection (UTI). A retired Consultant Urologist told me that I may be more prone to such things due to the radiation. He then informed me that the infection can travel from the prostate to the kidney which I had never heard of.

All things considered I am glad I went for the Brachytherapy.

Hope this helps.

Rgds
Dave

Edited by member 06 Nov 2024 at 20:36  | Reason: Not specified

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User
Posted 06 Nov 2024 at 10:54
I think the problem is that PSA, MRI and biopsy do not identify the extent of the malignancy or aggressiveness accurately. This is only determined following a prostatectomy when a pathologist can view the whole prostate. If you look at posts on this forum very frequently the Gleason score is upgraded and more rarely downgraded and more extensive malignancy is identified. My husband’s PSA was similar to yours, he also had a very large prostate and initially following a MRI he was diagnosed as having one lesion, one side of the prostate but following his surgery he was found to have four lesions sited both sides of the prostate. These additional lesions were not identified on the MRI or by a targeted and systematic biopsy. They were small but not insignificant tumours.

I think whatever decision you reach you just need to be mindful that you and your consultants may not be fully aware of the extent or grading of your cancer even after repeated MRI and biopsies.

We still need to be led by our consultants it is just that we need to be mindful that they may not know fully what is going on. There have been a couple of cautionary tales posted recently about AS and some nasty surprises. At the end of the day of course it is your decision and yes radical treatments can impact on quality of life so careful consideration is a must.

User
Posted 06 Nov 2024 at 12:01

With 10 out of 27 cores showing cancer, it is looking like something will need doing soon. You were 3+4 now you are 3+3, I don't think the 4 has gone away they just didn't hit it with a needle this time, but I guess that does mean it must be a small quantity.

The treatment you prefer may not be the best treatment on clinical grounds, also there may be newer treatments you are not aware of for example SABR. If you are only being offered limited treatments because that is all the hospital can do then definitely get referred elsewhere for a better choice. 

Dave

User
Posted 06 Nov 2024 at 12:31

Yes, I would also go with the 4 hasn't gone away, just the biopsy was less effective. And this brings up the issue of how accurate are diagnosis anyway?

User
Posted 06 Nov 2024 at 14:05

Hi i had a choice of Robotic surgery or Brachytherapy but like you my local hospital did not do Brachytherapy but at the consultations a Brachytherapy specialist was at the hospital and he said he  thought  Brachytherapy was a good options with my numbers but i would have to travel to his hospital Mount Vernon about twenty miles away.

I agreed with this and had Brachytherapy in September 2016.  PSA 2.19 Gleason 3+4=7 T2 No Mo age 70.

I have had a good run with no real side affects, Click on my Avatar and see my journey so far.I was not sure what procedure to take as they all have risks and i can't guarantee the results as there are many variables in each case.

Good luck John.

Edited by member 06 Nov 2024 at 14:09  | Reason: Not specified

User
Posted 06 Nov 2024 at 15:19

Hi John

Thanks for the reply. I am glad it has gone well for you.

Did you have a general anaesthetic or spinal injection. did you have a catheter or problems passing Urine or any other problems, antibiotics etc.

I am just interested in the side effects of the Brachytherapy.

 

Regards Kezzer

User
Posted 06 Nov 2024 at 17:03

Hi I just had a general anaesthetic just a needle in back of my hand and remember nothing until waking in recovery room, they gave me a cup pf tea and i had no real discomfort at all.No catheter at any time and was asked to pass urine into bottles to be checked for escaped seeds.

I was amazed at the lack of pain and was given pain killers.I was only really ready to eat and had a good nights sleep. you will get ED and depending on age and at 70 i expected it.I get 4 viagra a month but found morning erections came back after a while but will vary with different people. My PSA dropped slowly over the following years and is under <0.

John.

User
Posted 06 Nov 2024 at 20:36

Hello, I had Brachytherapy almost two years ago at the age of 63. Hopefully this link will take you to my treatment post.

https://community.prostatecanceruk.org/posts/t28690-LDR-Brachytherapy--Davekc10-s-treatment-journey

My latest PSA is 0.6

Update. Last month I was in hospital for five days due to a Urinary Tract Infection (UTI). A retired Consultant Urologist told me that I may be more prone to such things due to the radiation. He then informed me that the infection can travel from the prostate to the kidney which I had never heard of.

All things considered I am glad I went for the Brachytherapy.

Hope this helps.

Rgds
Dave

Edited by member 06 Nov 2024 at 20:36  | Reason: Not specified

 
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