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User
Posted 24 Jun 2024 at 19:01

Been reading this chat for a few days and the suport and advice is amazing. I had a UTI and went for PSA which was 3.3. sent for MRI awaiting Biopsy. I have a young family and this has floored me. any advice the Nurse says until biopsy they cant confirm. Thank you.

Prostate volume: 30.5 cc.
PSA Density: 0.11 ng/ml/cc.

Poorly defined T2 hypointense area with matching diffusion restriction and early arterial hypervascularity in
the left peripheral zone extending from gland base to apex between 3 and 6 o'clock position
measuring 33 x 23 X 19 mm in maximum dimensions consistent with PI-RADS V lesion. The abnormality appears to cross the surgical capsule on the left posterolateral aspect at the mid gland level and involves the left posterior transitional zone. The lesion contacts the left seminal vesicle hence, (If malignancy confirmed) early seminal vesicle involvement cannot be entirely excluded. In addition, the broad capsular contact is concerning for early extracapsular extension. There is a small PI-RADS IV lesion in the apical peripheral zone at between 7 and 8 o'clock position measuring 6 mm in diameter (12/31, 5/9 & 7/20).
Neurovascular bundle: Right Normal;  Left .... > Possibly infiltrated.
Bladder neck & Bladder wall: Normal.
External sphincter: Normal.
Rectal wall: Normal.
Lymph nodes: No size significant pelvic lymph nodes.

User
Posted 24 Jun 2024 at 22:27

Hi Simon

I'm sorry that you have had to find us but I'm glad that you have. Welcome to the forum.

 You would not be normal if you weren't anxious, we all have been. You are quite a bit younger than most of us old fogies , but they're are a few about the same age as you who regularly post on here.

As your nurse states, the biopsy will shed more light on your condition. Your PSA is quite low.

It's now a waiting game mate. My only advice is, take and deal with one procedure at a time. If you continue your story on here you'll get loads of help, support and advice.

Best of luck with the biopsy and I hope the results are favourable.

 

 

User
Posted 25 Jun 2024 at 09:49

Hi Simon 

I’m really sorry you find yourself here and so worried! It’s a horrible time and when you have a young family I’m sure it’s difficult. 

My husband is 58 and I has just had his prostate removed after receiving a diagnosis of Gleason 9 prostate cancer. 
As I’m sure you know PIRADs 5 is usually found to be cancer and my husband had PIRADS but the consultant did say that not all are cancer! 

However if it is then I would say this is the most difficult time because once you get over all the scans and appointments and stuff and they give you a treatment plan (and they will) then things seem to calm down a little bit! 

You won’t always feel in this heightened state of anxiety. 
Also no matter what diagnosis they give you this disease has lots of options for most people in lots of forms. 
I would say take one day at a time it’s hard I know we struggled very much in the early days waiting. 
I would try not to google as I found so much of the stuff was out of date and some of it wrong. 
I would come on here to ask your questions there are loads of people who have great experience of the disease and treatments. 

I hope you get your appointments quickly and you can either put your mind at rest or move forward with a treatment plan! 
Very Best Wishes 

M

User
Posted 25 Jun 2024 at 10:42

I agree with what has been said and until all the results are in you will not know your situation. You don't know yet whether you have cancer and if so which type. Should cancer be confirmed you will most likely be told which options you qualify for and the choice may well be left to you because there are pros and cons to all treatments. Those that post here or their representatives , (often a family member), are likely to view treament according to their experience which may not be typical.. If you would like to learn more about PCa and be in a good position to ask questions about your personal situation should the need arise, I sugest you study the impartial information provided by this charity as given in the 'Tool Kit' as here https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100.

Most people have either Prostatectomy or Radiotheraphy of which there are different kinds, although there are other options as stated in the link.

Edited by member 25 Jun 2024 at 10:45  | Reason: to highlight link

Barry
User
Posted 24 Jun 2024 at 19:01

Been reading this chat for a few days and the suport and advice is amazing. I had a UTI and went for PSA which was 3.3. sent for MRI awaiting Biopsy. I have a young family and this has floored me. any advice the Nurse says until biopsy they cant confirm. Thank you.

Prostate volume: 30.5 cc.
PSA Density: 0.11 ng/ml/cc.

Poorly defined T2 hypointense area with matching diffusion restriction and early arterial hypervascularity in
the left peripheral zone extending from gland base to apex between 3 and 6 o'clock position
measuring 33 x 23 X 19 mm in maximum dimensions consistent with PI-RADS V lesion. The abnormality appears to cross the surgical capsule on the left posterolateral aspect at the mid gland level and involves the left posterior transitional zone. The lesion contacts the left seminal vesicle hence, (If malignancy confirmed) early seminal vesicle involvement cannot be entirely excluded. In addition, the broad capsular contact is concerning for early extracapsular extension. There is a small PI-RADS IV lesion in the apical peripheral zone at between 7 and 8 o'clock position measuring 6 mm in diameter (12/31, 5/9 & 7/20).
Neurovascular bundle: Right Normal;  Left .... > Possibly infiltrated.
Bladder neck & Bladder wall: Normal.
External sphincter: Normal.
Rectal wall: Normal.
Lymph nodes: No size significant pelvic lymph nodes.

User
Posted 04 Aug 2024 at 19:09

Hi Simon.

Although your results could have been better, your cancer is curable.

I'm nearly 20 years older than you. I ended up Gleason 9(4+5), 20 out of 24 cores, T3a, capsule breached. I had my op 18 months ago, prostate, seminal vesicles and 9 lymph nodes removed. My PSA is currently still undetectable. I do not intend dying any faster than before I was diagnosed with cancer.

It maybe because you are T3b, that they think radiology rather than surgery is the best way to go.

Good luck mate.

Edited by member 04 Aug 2024 at 19:42  | Reason: Additional text

User
Posted 04 Aug 2024 at 20:32

Simon74. I was T3b with Gleason 8. The MDT actually recommended surgery in my case but there are other people on here with T3b staging where the MDT as not recommended surgery. Like Tarkadahl, I opted for RP knowing it might not be enough. As it turned out it wasn't enough. I had SRT and HT 6 months later. It's now 18 months since finishing HT and so far so good. My surgeon performed open surgery because he felt it would offer a better chance of getting it all out. It is good news that you have no evidence of lymph node invasion but with a T3 staging there is always a risk there are undetectable micro mets in the local nodes. My scan also gave a negative result for lymph node invasion but the surgeon wanted to throw the kitchen sink at it and removed 34 nodes. One of them turned out to be positive. If you are given a surgical option you need to find out what the approach would be with the lymph nodes. 

In answer to your question to Tarkadahl, if you have a look at his bio, his PSA is on the rise, so not yet cured.

Good luck.

User
Posted 05 Aug 2024 at 08:36

Hello Simon,

I'm very similar to you, age 48 with T3b staging early seminal vesicle invasion, 3+4 N0M0. The worry and and waiting for results has been the worst. I was advised by different professionals to go down both RP and HT/RT. The surgeons seems to favour RT and the oncologists surgery!

I've opted for HT/RT, I've just finished the 28 days of Bical, and am due my second injection of Zoladex at the end of the week. I'm pretty happy with my choice, but who knows if it will prove to be the best one, oh for a magic crystal ball to see the out come of both routes. The second surgeon I spoke to favoured HT/RT based quality of life, as he said with T3b, the surgery would be extensive with no nerve sparing, and also quite likely would require follow up RT. I'd initially thought surgery would be my route of choice, as I really didn't like the sound of HT side effects and was worried about increased risk of cancers later in life. Being young I felt I had enough time left for this to be a problem. 

However speaking to the oncologist, there is obviously an increased chance, however it is small overall. I thought if I'm likely to need RT anyway, why have all the side effects of surgery as well.

I know its only been just over a month, but I've not really had any side effects from HT other than maybe feeling a bit more tired than usual, and some loss of libido but I've felt like that anyway since starting this journey just through the worry and lack of sleep! Anyway no hot flushes, sore nipples and boob growth. I've taken the advice of another member on here (Decho) to keep active so I'm cycling and doing some weights, to try and stave of muscle wastage as much as possible.

All the best with which route you take, everyone is different and unfortunately there no definite right answer it seems. I've been told I'll be on HT for a total of 2 years with 4 weeks of RT around mid October

 

User
Posted 05 Aug 2024 at 11:09
Sorry to read about your situation especially given your age.

Although I was under-diagnosed at the time and underwent RARP, a slowly growing PSA post surgery meant that I needed HT and Salvage RT which wasn't too bad at all - the daily drive to the hospital was the hardest part :)

Post SRT my PSA is down to 0.03 and expected to go lower over time.

It's hard to say I am "cured" as there is always a chance that something may pop up again in 5-10 years time but it is no longer life limiting and I expect to die from something unrelated in about 20+ years time :)

There is going to be some adjustment needed in your sex life as a result so that's a good conversation to start having early on with your partner. There are many ways to approach it.

Wishing you the very best - remember that the anticipation and worry is 100x worse than the treatment.

User
Posted 05 Aug 2024 at 18:23

Originally Posted by: Online Community Member

Hello Simon,

I'm very similar to you, age 48 with T3b staging early seminal vesicle invasion, 3+4 N0M0. The worry and and waiting for results has been the worst. I was advised by different professionals to go down both RP and HT/RT. The surgeons seems to favour RT and the oncologists surgery!

I've opted for HT/RT, I've just finished the 28 days of Bical, and am due my second injection of Zoladex at the end of the week. I'm pretty happy with my choice, but who knows if it will prove to be the best one, oh for a magic crystal ball to see the out come of both routes. The second surgeon I spoke to favoured HT/RT based quality of life, as he said with T3b, the surgery would be extensive with no nerve sparing, and also quite likely would require follow up RT. I'd initially thought surgery would be my route of choice, as I really didn't like the sound of HT side effects and was worried about increased risk of cancers later in life. Being young I felt I had enough time left for this to be a problem. 

However speaking to the oncologist, there is obviously an increased chance, however it is small overall. I thought if I'm likely to need RT anyway, why have all the 

I know its only been just over a month, but I've not really had any side effects from HT other than maybe feeling a bit more tired than usual, and some loss of libido but I've felt like that anyway since starting this journey just through the worry and lack of sleep! Anyway no hot flushes, sore nipples and boob growth. I've taken the advice of another member on here (Decho) to keep active so I'm cycling and doing some weights, to try and stave of muscle wastage as much as possible.

All the best with which route you take, everyone is different and unfortunately there no definite right answer it seems. I've been told I'll be on HT for a total of 2 years with 4 weeks of RT around mid October

I can understand your choice John and I’m glad you took my advice about staying active. Keep at it….PLEASE🙏 I think far more advice and support should be given to men on HT to keep them exercising. I never had sore nipples or boob growth, just a little flab around them(moobs). I think it’s more likely to get this if you are permanently on Bicalutamide so hopefully you’ll be ok. Most people start by getting a warm feeling and think ‘Oh what’s all the fuss about?’ And then bang! It’s hits🥵🥵🥵 if they’re really bad there’s a drug they can give you to help with them. Maybe though you’ll be one of the lucky ones and not suffer, keep us posted.

All the best with your RT when it comes and keep us posted on your progress😊

Derek

User
Posted 09 Aug 2024 at 11:47
Hi Simon, I was 54 when diagnosed as T3b, PET scan showed the cancer had spread to my lymph nodes so no option except radiation and HT. I got my diagnosis 2 days before my wife was due to do her IVF transfer which made for some interesting conversations !

I was lucky to have a very good oncologist plus access to an SBRT machine that had a built in MRI, meaning that they can target the cancer very precisely and they can also go back and give me more radiation if it returns. I had a SpaceOar thing inserted before starting radiation. I took zytiga for 2 years, and had ADT injections every 6 months for 3 years (have finally had my last one). I had the usual reaction we all get to ADT (hot flushes, no libido, extra weight, etc) but the thing that saved me was really getting into a really good exercise routine. This kept me mostly in shape mentally and physically and has allowed me to get through the ADT whilst holding down a tough job, etc. I also have a beautiful baby daughter, so have a lot to live for - like you I’m sure !

At the time of diagnosis I felt in great shape, no outward signs at all but looking back at my prior blood tests realised that the indications for PCa had been there for several years but just missed by the doctors at the time (incredible I know).

So keep your chin up, you have a strong chance for cure as others have pointed out, happy to chat in more detail about my own experience. Cheers, J

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User
Posted 24 Jun 2024 at 22:27

Hi Simon

I'm sorry that you have had to find us but I'm glad that you have. Welcome to the forum.

 You would not be normal if you weren't anxious, we all have been. You are quite a bit younger than most of us old fogies , but they're are a few about the same age as you who regularly post on here.

As your nurse states, the biopsy will shed more light on your condition. Your PSA is quite low.

It's now a waiting game mate. My only advice is, take and deal with one procedure at a time. If you continue your story on here you'll get loads of help, support and advice.

Best of luck with the biopsy and I hope the results are favourable.

 

 

User
Posted 25 Jun 2024 at 09:49

Hi Simon 

I’m really sorry you find yourself here and so worried! It’s a horrible time and when you have a young family I’m sure it’s difficult. 

My husband is 58 and I has just had his prostate removed after receiving a diagnosis of Gleason 9 prostate cancer. 
As I’m sure you know PIRADs 5 is usually found to be cancer and my husband had PIRADS but the consultant did say that not all are cancer! 

However if it is then I would say this is the most difficult time because once you get over all the scans and appointments and stuff and they give you a treatment plan (and they will) then things seem to calm down a little bit! 

You won’t always feel in this heightened state of anxiety. 
Also no matter what diagnosis they give you this disease has lots of options for most people in lots of forms. 
I would say take one day at a time it’s hard I know we struggled very much in the early days waiting. 
I would try not to google as I found so much of the stuff was out of date and some of it wrong. 
I would come on here to ask your questions there are loads of people who have great experience of the disease and treatments. 

I hope you get your appointments quickly and you can either put your mind at rest or move forward with a treatment plan! 
Very Best Wishes 

M

User
Posted 25 Jun 2024 at 10:42

I agree with what has been said and until all the results are in you will not know your situation. You don't know yet whether you have cancer and if so which type. Should cancer be confirmed you will most likely be told which options you qualify for and the choice may well be left to you because there are pros and cons to all treatments. Those that post here or their representatives , (often a family member), are likely to view treament according to their experience which may not be typical.. If you would like to learn more about PCa and be in a good position to ask questions about your personal situation should the need arise, I sugest you study the impartial information provided by this charity as given in the 'Tool Kit' as here https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100.

Most people have either Prostatectomy or Radiotheraphy of which there are different kinds, although there are other options as stated in the link.

Edited by member 25 Jun 2024 at 10:45  | Reason: to highlight link

Barry
User
Posted 04 Aug 2024 at 11:45

Got my results and it’s not great..

15 out of 25 samples with Cancer

gleeson 4+5 (9) Cambridge group 5

T3b staging early seminal vescal invasion

and just broke in the outer capsule 

no Lymph node invasion.

immediate start on Bicalutamide

with first dose of Decapeptyl in  2 weeks

RT to follow. 
asked about Radical Prostectemy but they said MDT don’t want to do that.  As quality of life afterwards. Have yet to see oncology but I’m prepared to have RP with Salvage RT . I’m not sure if the treatment plan is right for me. And Im worried about my life expectancy as I’m only 49.  This has come as a devastating blow.  I feel lost right now

User
Posted 04 Aug 2024 at 17:44

Hi Simon I was 48 in 2018 diagnosed in a very similar way to you except I was 3a not 3b.  I think because of my age I was given the RP knowing it would probably not be enough then the follow up adjuvant radiotherapy, as they thought this would give me the best chance.  Interesting to read they are looking at you differently.  It's a horrible position to be in and I think age does really matter in terms of feeling more aggrieved and more worried about missing out on years and things like a pension.  Despite my radical treatment I'm living with prostate cancer, as positive as I can be.  My advice keep calm, query the decision for your treatment and seek out knowledge and be confident enough to push back.  You should be in control of your treatment path.  I would also seek out counselling as it really helped me keep perspective.  All best.

User
Posted 04 Aug 2024 at 18:30

Did you get a cure ? 

User
Posted 04 Aug 2024 at 19:09

Hi Simon.

Although your results could have been better, your cancer is curable.

I'm nearly 20 years older than you. I ended up Gleason 9(4+5), 20 out of 24 cores, T3a, capsule breached. I had my op 18 months ago, prostate, seminal vesicles and 9 lymph nodes removed. My PSA is currently still undetectable. I do not intend dying any faster than before I was diagnosed with cancer.

It maybe because you are T3b, that they think radiology rather than surgery is the best way to go.

Good luck mate.

Edited by member 04 Aug 2024 at 19:42  | Reason: Additional text

User
Posted 04 Aug 2024 at 20:32

Simon74. I was T3b with Gleason 8. The MDT actually recommended surgery in my case but there are other people on here with T3b staging where the MDT as not recommended surgery. Like Tarkadahl, I opted for RP knowing it might not be enough. As it turned out it wasn't enough. I had SRT and HT 6 months later. It's now 18 months since finishing HT and so far so good. My surgeon performed open surgery because he felt it would offer a better chance of getting it all out. It is good news that you have no evidence of lymph node invasion but with a T3 staging there is always a risk there are undetectable micro mets in the local nodes. My scan also gave a negative result for lymph node invasion but the surgeon wanted to throw the kitchen sink at it and removed 34 nodes. One of them turned out to be positive. If you are given a surgical option you need to find out what the approach would be with the lymph nodes. 

In answer to your question to Tarkadahl, if you have a look at his bio, his PSA is on the rise, so not yet cured.

Good luck.

User
Posted 05 Aug 2024 at 08:36

Hello Simon,

I'm very similar to you, age 48 with T3b staging early seminal vesicle invasion, 3+4 N0M0. The worry and and waiting for results has been the worst. I was advised by different professionals to go down both RP and HT/RT. The surgeons seems to favour RT and the oncologists surgery!

I've opted for HT/RT, I've just finished the 28 days of Bical, and am due my second injection of Zoladex at the end of the week. I'm pretty happy with my choice, but who knows if it will prove to be the best one, oh for a magic crystal ball to see the out come of both routes. The second surgeon I spoke to favoured HT/RT based quality of life, as he said with T3b, the surgery would be extensive with no nerve sparing, and also quite likely would require follow up RT. I'd initially thought surgery would be my route of choice, as I really didn't like the sound of HT side effects and was worried about increased risk of cancers later in life. Being young I felt I had enough time left for this to be a problem. 

However speaking to the oncologist, there is obviously an increased chance, however it is small overall. I thought if I'm likely to need RT anyway, why have all the side effects of surgery as well.

I know its only been just over a month, but I've not really had any side effects from HT other than maybe feeling a bit more tired than usual, and some loss of libido but I've felt like that anyway since starting this journey just through the worry and lack of sleep! Anyway no hot flushes, sore nipples and boob growth. I've taken the advice of another member on here (Decho) to keep active so I'm cycling and doing some weights, to try and stave of muscle wastage as much as possible.

All the best with which route you take, everyone is different and unfortunately there no definite right answer it seems. I've been told I'll be on HT for a total of 2 years with 4 weeks of RT around mid October

 

User
Posted 05 Aug 2024 at 11:09
Sorry to read about your situation especially given your age.

Although I was under-diagnosed at the time and underwent RARP, a slowly growing PSA post surgery meant that I needed HT and Salvage RT which wasn't too bad at all - the daily drive to the hospital was the hardest part :)

Post SRT my PSA is down to 0.03 and expected to go lower over time.

It's hard to say I am "cured" as there is always a chance that something may pop up again in 5-10 years time but it is no longer life limiting and I expect to die from something unrelated in about 20+ years time :)

There is going to be some adjustment needed in your sex life as a result so that's a good conversation to start having early on with your partner. There are many ways to approach it.

Wishing you the very best - remember that the anticipation and worry is 100x worse than the treatment.

User
Posted 05 Aug 2024 at 18:23

Originally Posted by: Online Community Member

Hello Simon,

I'm very similar to you, age 48 with T3b staging early seminal vesicle invasion, 3+4 N0M0. The worry and and waiting for results has been the worst. I was advised by different professionals to go down both RP and HT/RT. The surgeons seems to favour RT and the oncologists surgery!

I've opted for HT/RT, I've just finished the 28 days of Bical, and am due my second injection of Zoladex at the end of the week. I'm pretty happy with my choice, but who knows if it will prove to be the best one, oh for a magic crystal ball to see the out come of both routes. The second surgeon I spoke to favoured HT/RT based quality of life, as he said with T3b, the surgery would be extensive with no nerve sparing, and also quite likely would require follow up RT. I'd initially thought surgery would be my route of choice, as I really didn't like the sound of HT side effects and was worried about increased risk of cancers later in life. Being young I felt I had enough time left for this to be a problem. 

However speaking to the oncologist, there is obviously an increased chance, however it is small overall. I thought if I'm likely to need RT anyway, why have all the 

I know its only been just over a month, but I've not really had any side effects from HT other than maybe feeling a bit more tired than usual, and some loss of libido but I've felt like that anyway since starting this journey just through the worry and lack of sleep! Anyway no hot flushes, sore nipples and boob growth. I've taken the advice of another member on here (Decho) to keep active so I'm cycling and doing some weights, to try and stave of muscle wastage as much as possible.

All the best with which route you take, everyone is different and unfortunately there no definite right answer it seems. I've been told I'll be on HT for a total of 2 years with 4 weeks of RT around mid October

I can understand your choice John and I’m glad you took my advice about staying active. Keep at it….PLEASE🙏 I think far more advice and support should be given to men on HT to keep them exercising. I never had sore nipples or boob growth, just a little flab around them(moobs). I think it’s more likely to get this if you are permanently on Bicalutamide so hopefully you’ll be ok. Most people start by getting a warm feeling and think ‘Oh what’s all the fuss about?’ And then bang! It’s hits🥵🥵🥵 if they’re really bad there’s a drug they can give you to help with them. Maybe though you’ll be one of the lucky ones and not suffer, keep us posted.

All the best with your RT when it comes and keep us posted on your progress😊

Derek

User
Posted 09 Aug 2024 at 11:47
Hi Simon, I was 54 when diagnosed as T3b, PET scan showed the cancer had spread to my lymph nodes so no option except radiation and HT. I got my diagnosis 2 days before my wife was due to do her IVF transfer which made for some interesting conversations !

I was lucky to have a very good oncologist plus access to an SBRT machine that had a built in MRI, meaning that they can target the cancer very precisely and they can also go back and give me more radiation if it returns. I had a SpaceOar thing inserted before starting radiation. I took zytiga for 2 years, and had ADT injections every 6 months for 3 years (have finally had my last one). I had the usual reaction we all get to ADT (hot flushes, no libido, extra weight, etc) but the thing that saved me was really getting into a really good exercise routine. This kept me mostly in shape mentally and physically and has allowed me to get through the ADT whilst holding down a tough job, etc. I also have a beautiful baby daughter, so have a lot to live for - like you I’m sure !

At the time of diagnosis I felt in great shape, no outward signs at all but looking back at my prior blood tests realised that the indications for PCa had been there for several years but just missed by the doctors at the time (incredible I know).

So keep your chin up, you have a strong chance for cure as others have pointed out, happy to chat in more detail about my own experience. Cheers, J

 
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