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HT and RT advice

User
Posted 25 Oct 2024 at 20:12

Hope someone can help with my diagnosis?
Had a blood test PSA of 27 which led to urgent referral to hospital where the following results were:

Gleason 4+4 (grade group 4)prostrate cancer in 18/23 cores bilaterally MRI-28cc extensive peripheral zone tumour involvement extending into seminal vesicles T3b

Bone scan no evidence of Mets Staging T3b Nx Mx

There is question mark over lymph nodes in pelvic and abdomen area so require a PSMA PET scan to be done in future.

I have been told that surgery with not be offered due to locally advanced nature of cancer but HT and RT

After reading a number of posts on the site HT and RT are not the ‘preferred’ option 
can anyone reassure me it’s not as bad as posted or is it a case of bite the bullet and see how it goes.

Just to give you some background I went to the doctors about my hearing and said to the nurse would it be possible to have a blood test for prostrate as the flow is very slightly reduced and by the way my brother in law of same age has been diagnosed with prostrate cancer not expecting a PSA of 27 bit of a shock.
How many men are walking around with no idea of this ticking time bomb?

Dave

User
Posted 25 Oct 2024 at 23:39

Originally Posted by: Online Community Member
After reading a number of posts on the site HT and RT are not the ‘preferred’ option

In your situation it most probably is the preferred option. The PSMA PET scan will give you more clarity on spread and if there's lymph nodes involved it might be possible to treat them too, if they're not to distant from the prostate.

The sooner you can get the scan, the better.

I was in a similar situation to you [and Dave64 and Andy] with a locally advanced G9, spread into seminal vesicles and 3 lymph nodes. RT/HT and all clear some 3 years later.

The HT is not a barrel of laughs but it works.

Jules

User
Posted 25 Oct 2024 at 21:48

Your diagnosis is very similar to mine. I had HT and RT, that was six years ago and all is going well so far. Two years of HT is not good, but I didn't find it too bad. 

There are a few varieties of RT so you need to find out exactly what is on offer. Surgery would be unlikely to work, the only other choice is do nothing but, I don't think you would live more than five years, whereas with treatment 15 or 20 years is more than possible.

Edited by member 27 Oct 2024 at 17:24  | Reason: Not specified

Dave

User
Posted 25 Oct 2024 at 22:27

Hi DaveD13 

I'm sorry that you've had to join us but welcome to the forum, mate.

If you put T3b into the search box it will show some conversations on the staging. Here's a recent one:

https://community.prostatecanceruk.org/posts/t30952-T3B-SV1-choice-of-surgery-or-radiotherapy

Good luck with your PSMA PET scan.

User
Posted 26 Oct 2024 at 03:04

Surgery is still a consideration for T3b even if identified in the seminal vesicles, so I don’t understand why they have already ruled it out. It is always good to obtain second opinions. 

User
Posted 26 Oct 2024 at 07:18

Most surgeons won't offer surgery for T3b, as the recurrence rate is too high.

User
Posted 27 Oct 2024 at 04:08

Hi,

Sorry to have you here but then welcome to best place you could be.

Taking into consideration that G8 is classed as aggressive and T3b is already out of prostate, then it is highly likely you would have RT and HT early after operation. RT is said to be as effective as surgery. So the question is why to take side effect of surgery for the sake of few months non RT. If you are to to have surgery, then make sure is a skilled surgeon and possibly operates open surgery.

Best of luck.

User
Posted 27 Oct 2024 at 16:25

If surgery route were to be offered, especially good advice needing a top notch surgeon. I was Gleason 8 and read an NIH study that close to 59% of Gleason 8’s were downgraded to Gleason 7 after surgery. There were other factors that included just two cores or less being Gleason 8 , less than 50% tumor involvement in core, and having a Gleason 3 number on one side or the other in your Gleason cores. I fit that bill, although my Decipher score and ExoDx  score showed likelihood high intermediate to advanced cancer. My being 71 I felt I wanted as much quality of life with my daughter and felt surgery gave me the better option. I don’t know your biopsy report and whether you fit that bill. I met with two Surgical oncologist’s and two Radiation Oncologist’s. One Surgical Oncologist actually encouraged me to seriously even though I planned to, meet with a Radiation Oncologist because of my likely advanced cancer and wanted me to understand I very well might need Radiation treatment and Hormone treatment later right after healing from surgery or a short time later and faced going through the side effects of both treatments. He certainly wanted me to know what I might be facing going the surgery route. I explained though at my age I might miss a window for being able to have surgery (general consensus around 75) as I would get older and even if I was not 75 who knows my health might then preclude me from salvage surgery if after Radiation it came back. He acknowledged again general consensus is it is more difficult to do surgery after Radiation then to do Radiation after Surgery, but said that is changing and salvage surgery is offered by some skilled surgeon’s in that area now.  I was certainly back to all my everyday activities within two weeks of surgery and had no incontinence. I knew the possibility of needing Radiation and HT after but some may say I gambled, but I was accepting of what my outcome would be. I also have read that their are now two schools of thought before starting adjuvant RT or salvage RT. One is post PSA driven treatment watching your PSA go up or doubling to a .2 and now becoming more looked at, image driven treatment waiting until they see where the cancer shows up on a PSMA Pet scan. I also figured I would go the image driven and continue to buy myself more quality of life time. Reaching 75 with a good quality of life is my goal because after that even without cancer your aging brings it down and general life expectancy. If you start two years of RT and HT at 71 it takes you a lot closer to my age cutoff of 75.  Does that mean I want to go at 75, no but I am more willing at that age to accept the quality of life trade offs. That number would likely be different in each person’s unique situation in their mind. For me I ended up in the 59% group, my Gleason 8 was downgraded to a Gleason 7 post surgery and my 3 month PSA was less than .04. My surgery included seminal vesicles, and lymph nodes and although the cancer had focally breeched the capsule EPE, the Surgeon was able to eliminate the initial positive margin. I know everyone’s train of thought is different in their treatment decision, but that is what went into mine.

User
Posted 27 Oct 2024 at 20:48

Hi DaveD13. You are similar diagnosis to me, although in my case the urologist did offer me surgery as an option. He also stressed that there was a good possibility I would need salvage SRT at some point. I opted for surgery, mainly because I hated the idea of three years on HT (it was also the preferred option of the MDT). I didn’t have the benefit of a PSMA PET scan prior to surgery but nothing showed up on MRI in the pelvic lymph nodes. Nevertheless 34 were taken out during the prostatectomy, one of which was subsequently found to be positive. If you do go down the surgery route, then it is likely you will have lymph nodes removed and you will need to appreciate that procedure comes with its own potential side effects (Lymphocele and Lymphoedema). In my case the surgery was not successful, and I needed follow up SRT six months later to the prostate bed and pelvic surgical area . Two years later my PSA remains undetectable, but I am stuck with Lymphoedema in my right leg as a result of the SRT.

At this moment in time, it seems the dilemma of which radical treatment to choose has been chosen for you. If you do manage to find a surgeon who is prepared to do a RP then you have to make the difficult choice of whether it is the right route for you to take. Statistics seem to indicate the long-term outcomes of RP vs RT/HT are about the same. It boils down to which potential side effects would you rather have.

User
Posted 27 Oct 2024 at 22:32
I had a fairly similar diagnosis to yours. My PSA was 31 and there was a strong suspicion of "micro mets" in the lymph nodes, although nothing actually visible on a scan. I had "whole pelvis" RT and two years HT. It wasn't a great experience (took my bowels close on a year to recover from radiation damage), but on the other hand it wasn't awful either. You get through it because it's what needs to be done.

I had bicalutimide as a primary HT because my oncologist reckoned it had fewer side-effects than the injected drugs more commonly used. It doesn't work for everyone, but it worked for me. Might be worth asking your oncologist about that.

Five and a half years now after RT and my PSA is stable at 1.0 where it's been (give or take 0.1) for the last two years. My oncologist said that he'd regard my treatment as a success if my nadir (minimum) PSA was 2 or below, so I'm well pleased.

Very best wishes for your treatment,

Chris

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User
Posted 25 Oct 2024 at 21:48

Your diagnosis is very similar to mine. I had HT and RT, that was six years ago and all is going well so far. Two years of HT is not good, but I didn't find it too bad. 

There are a few varieties of RT so you need to find out exactly what is on offer. Surgery would be unlikely to work, the only other choice is do nothing but, I don't think you would live more than five years, whereas with treatment 15 or 20 years is more than possible.

Edited by member 27 Oct 2024 at 17:24  | Reason: Not specified

Dave

User
Posted 25 Oct 2024 at 22:27

Hi DaveD13 

I'm sorry that you've had to join us but welcome to the forum, mate.

If you put T3b into the search box it will show some conversations on the staging. Here's a recent one:

https://community.prostatecanceruk.org/posts/t30952-T3B-SV1-choice-of-surgery-or-radiotherapy

Good luck with your PSMA PET scan.

User
Posted 25 Oct 2024 at 23:39

Originally Posted by: Online Community Member
After reading a number of posts on the site HT and RT are not the ‘preferred’ option

In your situation it most probably is the preferred option. The PSMA PET scan will give you more clarity on spread and if there's lymph nodes involved it might be possible to treat them too, if they're not to distant from the prostate.

The sooner you can get the scan, the better.

I was in a similar situation to you [and Dave64 and Andy] with a locally advanced G9, spread into seminal vesicles and 3 lymph nodes. RT/HT and all clear some 3 years later.

The HT is not a barrel of laughs but it works.

Jules

User
Posted 26 Oct 2024 at 03:04

Surgery is still a consideration for T3b even if identified in the seminal vesicles, so I don’t understand why they have already ruled it out. It is always good to obtain second opinions. 

User
Posted 26 Oct 2024 at 07:18

Most surgeons won't offer surgery for T3b, as the recurrence rate is too high.

User
Posted 27 Oct 2024 at 04:08

Hi,

Sorry to have you here but then welcome to best place you could be.

Taking into consideration that G8 is classed as aggressive and T3b is already out of prostate, then it is highly likely you would have RT and HT early after operation. RT is said to be as effective as surgery. So the question is why to take side effect of surgery for the sake of few months non RT. If you are to to have surgery, then make sure is a skilled surgeon and possibly operates open surgery.

Best of luck.

User
Posted 27 Oct 2024 at 16:25

If surgery route were to be offered, especially good advice needing a top notch surgeon. I was Gleason 8 and read an NIH study that close to 59% of Gleason 8’s were downgraded to Gleason 7 after surgery. There were other factors that included just two cores or less being Gleason 8 , less than 50% tumor involvement in core, and having a Gleason 3 number on one side or the other in your Gleason cores. I fit that bill, although my Decipher score and ExoDx  score showed likelihood high intermediate to advanced cancer. My being 71 I felt I wanted as much quality of life with my daughter and felt surgery gave me the better option. I don’t know your biopsy report and whether you fit that bill. I met with two Surgical oncologist’s and two Radiation Oncologist’s. One Surgical Oncologist actually encouraged me to seriously even though I planned to, meet with a Radiation Oncologist because of my likely advanced cancer and wanted me to understand I very well might need Radiation treatment and Hormone treatment later right after healing from surgery or a short time later and faced going through the side effects of both treatments. He certainly wanted me to know what I might be facing going the surgery route. I explained though at my age I might miss a window for being able to have surgery (general consensus around 75) as I would get older and even if I was not 75 who knows my health might then preclude me from salvage surgery if after Radiation it came back. He acknowledged again general consensus is it is more difficult to do surgery after Radiation then to do Radiation after Surgery, but said that is changing and salvage surgery is offered by some skilled surgeon’s in that area now.  I was certainly back to all my everyday activities within two weeks of surgery and had no incontinence. I knew the possibility of needing Radiation and HT after but some may say I gambled, but I was accepting of what my outcome would be. I also have read that their are now two schools of thought before starting adjuvant RT or salvage RT. One is post PSA driven treatment watching your PSA go up or doubling to a .2 and now becoming more looked at, image driven treatment waiting until they see where the cancer shows up on a PSMA Pet scan. I also figured I would go the image driven and continue to buy myself more quality of life time. Reaching 75 with a good quality of life is my goal because after that even without cancer your aging brings it down and general life expectancy. If you start two years of RT and HT at 71 it takes you a lot closer to my age cutoff of 75.  Does that mean I want to go at 75, no but I am more willing at that age to accept the quality of life trade offs. That number would likely be different in each person’s unique situation in their mind. For me I ended up in the 59% group, my Gleason 8 was downgraded to a Gleason 7 post surgery and my 3 month PSA was less than .04. My surgery included seminal vesicles, and lymph nodes and although the cancer had focally breeched the capsule EPE, the Surgeon was able to eliminate the initial positive margin. I know everyone’s train of thought is different in their treatment decision, but that is what went into mine.

User
Posted 27 Oct 2024 at 20:48

Hi DaveD13. You are similar diagnosis to me, although in my case the urologist did offer me surgery as an option. He also stressed that there was a good possibility I would need salvage SRT at some point. I opted for surgery, mainly because I hated the idea of three years on HT (it was also the preferred option of the MDT). I didn’t have the benefit of a PSMA PET scan prior to surgery but nothing showed up on MRI in the pelvic lymph nodes. Nevertheless 34 were taken out during the prostatectomy, one of which was subsequently found to be positive. If you do go down the surgery route, then it is likely you will have lymph nodes removed and you will need to appreciate that procedure comes with its own potential side effects (Lymphocele and Lymphoedema). In my case the surgery was not successful, and I needed follow up SRT six months later to the prostate bed and pelvic surgical area . Two years later my PSA remains undetectable, but I am stuck with Lymphoedema in my right leg as a result of the SRT.

At this moment in time, it seems the dilemma of which radical treatment to choose has been chosen for you. If you do manage to find a surgeon who is prepared to do a RP then you have to make the difficult choice of whether it is the right route for you to take. Statistics seem to indicate the long-term outcomes of RP vs RT/HT are about the same. It boils down to which potential side effects would you rather have.

User
Posted 27 Oct 2024 at 22:32
I had a fairly similar diagnosis to yours. My PSA was 31 and there was a strong suspicion of "micro mets" in the lymph nodes, although nothing actually visible on a scan. I had "whole pelvis" RT and two years HT. It wasn't a great experience (took my bowels close on a year to recover from radiation damage), but on the other hand it wasn't awful either. You get through it because it's what needs to be done.

I had bicalutimide as a primary HT because my oncologist reckoned it had fewer side-effects than the injected drugs more commonly used. It doesn't work for everyone, but it worked for me. Might be worth asking your oncologist about that.

Five and a half years now after RT and my PSA is stable at 1.0 where it's been (give or take 0.1) for the last two years. My oncologist said that he'd regard my treatment as a success if my nadir (minimum) PSA was 2 or below, so I'm well pleased.

Very best wishes for your treatment,

Chris

 
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