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User
Posted 18 Aug 2022 at 17:45

Hi

Just joined this forum and struggling to summarise/prioritize what I want to ask.

I have a meeting with an Oncology Dr next week( Wednesday)to discuss options of treatments so I think I need some pointers to discuss as to what to ask him.

In summary...age 75 in very good general health...diagnosed with aggressive prostate cancer  in recent weeks Bone and CT scans show cancer has NOT spread out of prostate...cancer is at the edge of the prostate

Gleeson 9....T3....PSA 15( this is all a new language to me).

At first meeting with nurse and before the scans but after the MRI and biopsy she said that due to the location of cancer it was unlikely that removal would be an option. However phone call yesterday  to arrange meeting next week advised that after the  scan results removal of prostate  is now one option.

So...what can I expect to be told/advised next week and what questions should I ask.

While I am not "over-anxious" ( in fact I am surprised at how nonanxious I am) as I am pleased the cancer has not spread I am confused after reading various advices/comments/papers etc .

eg...if cancer is all within the prostate does removal of prostate not remove all the cancer?...and if so why should there be any concern re eventuallyu dying from the cancer?...or re-occurrence of the cancer?...( to the informed this may seem like a stupid question?)

With the option of HT and RT can the RT start right away...reading on this forum it suggests RT starts 3 months after HT has begun?

Removal?...my brother 10 years ago has his prostate removed with massive complications resulting for about 12 months due to damage from the operation to his bowel....so that has me concerned.

So any comment /advice on what I should ensure is covered at my meeting next week would be welcome as a great starter...thanks in advance.

 

User
Posted 18 Aug 2022 at 22:08

Hi Derryilra. I'm sorry that you find yourself here. There is certainly a lot to learn and a lot to think about when you have just been diagnosed. It can get a bit confusing. I'm not sure whether you have explored the publications on the PCa UK website but it's a good place to start. At the time of my diagnosis I was given a copy of Prostate Cancer - A Guide for Men Who've Just Been Diagnosed. I found that was a helpful place to start. You can download a pdf copy.

As you are being given the two options of HT/RT or RP it would be appropriate to talk to both an Oncologist and a Urologist. It's the only way you can make an informed decision on which treatment route to take. The decision really comes down to which set of side effects do you dislike the most. Unfortunately there are no guarantees that whichever route you take that your PCa will be gone for good. The RT might not kill every cancer cell within the prostate or there may already be undetectable cancer/ cancer cells outside of the prostate capsule (the staging of the cancer at diagnosis is not 100 percent accurate). About a third of men who have a radical prostatectomy require salvage radiotherapy at a later date. Your PSA will be monitored for life, so if there is something going on in there you will know about it so that it can be treated accordingly.

Hope this is of some help for starters but I'm sure others will come along with a lot more help and information. Chris

User
Posted 19 Aug 2022 at 00:02

Hi Deriliya, RP always sounds instinctively the best option just get rid of the prostate and all the cancer with it. The problem is, has it started to spread?

As has been mentioned about 30% off RP patients need RT at sometime afterwards (usually about three years after). So with a T3 diagnosis I'd say you have a moderately high chance some cells are outside the prostate. RT is usually given with the full dose being given to the prostate plus a margin of 10mm not to mention a slight spillover meaning the whole pelvis gets at least some radiation. So RT may wipe out cancer cells which have already escaped the prostate. But the spillover may occasionally cause damage to bowel and bladder.

Brachytherapy is a good treatment if offered.

Your life expectancy excluding prostate cancer is 87 so you need to hold this cancer at bay for about 12 years. If you're lucky the treatment will be fully effective and you will be cured. Side effects from RP are likely to be immediate, those from RT are likely to be five to ten years away. You may have no serious side effects from either treatment.

If you have RP and no serious side effects you will be recovered in less than six months. If you have RT with HT you may be on HT for two years, the side effects are tolerable but it is quite a long time.

If RP or RT fail then HT and other treatments will probably keep you alive for another decade.

You are correct that RT is nearly always preceded by three to six months of HT it has been shown to make the RT more effective.

Dave

User
Posted 19 Aug 2022 at 01:27

Hi,

With a G9 and T3 diagnosis and based on my own and others experiences I think there is a high chance that it may have already spread microscopically beyond the prostate. If that is the case then surgery and its side effects may be a additional burden that hindsight will show could have been avoided. Unfortunately you dont know till after the event. 

Question the surgeon/oncologist closely on this point though and note how they respond before you make a decision.

Cheers

John

User
Posted 19 Aug 2022 at 02:39

Suggest you carefully consider the Tool Kit to examine Pros and Cons of Treatment https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

Outcomes and side effects can vary considerably and of course it helps if the treatment is well administered and understood that further treatment of one sort or another may be subsequently required. The type of PCa you have and how well it is contained are some of the other factors that can influence choice and how adverse you are to potential side effects. You touch on another aspect and that is accepting your diagnosis and not worry about it to the extent that some men do, thereby robbing them of some of their quality time. The chances of having PCa increases with age although most men die with it rather than of it but for some men treatment is very beneficial.

Edited by member 19 Aug 2022 at 02:42  | Reason: Not specified

Barry
User
Posted 19 Aug 2022 at 08:09

Originally Posted by: Online Community Member
Gleeson 9....T3....PSA 15( this is all a new language to me). At first meeting with nurse and before the scans but after the MRI

 

You're in a similar position to where I started off and the same age. The scans you've had are adequate for finding cancer in the prostate but they might not pick up metastases in, for example, nearby glands. A number of people here, including myself, have had PSMA PET scans that in most cases will pick up more than an MRI can.

If you have RT and HT now it will almost certainly mean that you can't use it again if mets turn up later. If you have a prostatectomy and there's either local recurrence, or it later turns out that the cancer has spread to glands [or elsewhere], RT is an option to deal with the residue.

I'm a fan of PSMA PET scans, probably because they picked up some nearby mets in glands which were targeted in my treatment but I know everyone doesn't agree.

 

Jules

User
Posted 19 Aug 2022 at 21:31
You are in the position very many of us on this forum have been through, and to be honest there is no "right" answer, you just have to make a decision you are happy with.

The way I saw it there were a number of factors to consider:

- none of the treatments is much more effective than another, judging by the statistics on recurrence. But remember techniques improve, and data on 5-year survival rates assess on the technologies of 5+ years ago etc. The most modern radiotherapy machines (introduced in the last 5 years) focus the beam on the target area much better so may work better (and cause fewer side effects in nearby organs) whereas surgical approaches remain much the same.

- all treatments are no fun to go through, and have side effects. You need to read about these. Only you can decide what you can best put up with.

- age may be a factor, prostate surgery is pretty major and the younger you are the better the body heals on average (of course you may not be average). On the other side of the coin, some of the radiotherapy side effects are pretty long term (20 years plus) which becomes less worrisome if you are older.

- if surgery is suitable, once the prostate is removed there should be no PSA-producing cells left meaning recurrence can be detected very sensitively and dealt with by radiotherapy. With radiotherapy there will still be PSA produced by the remaining normal cells making changes harder to detect, and surgery no longer is available as a salvage treatment.

You will find it tough making a decision because it is tough! Read all the PCUK booklets, talk to your family, and decide what is best for you and your particular situation. Good luck!

Show Most Thanked Posts
User
Posted 18 Aug 2022 at 22:08

Hi Derryilra. I'm sorry that you find yourself here. There is certainly a lot to learn and a lot to think about when you have just been diagnosed. It can get a bit confusing. I'm not sure whether you have explored the publications on the PCa UK website but it's a good place to start. At the time of my diagnosis I was given a copy of Prostate Cancer - A Guide for Men Who've Just Been Diagnosed. I found that was a helpful place to start. You can download a pdf copy.

As you are being given the two options of HT/RT or RP it would be appropriate to talk to both an Oncologist and a Urologist. It's the only way you can make an informed decision on which treatment route to take. The decision really comes down to which set of side effects do you dislike the most. Unfortunately there are no guarantees that whichever route you take that your PCa will be gone for good. The RT might not kill every cancer cell within the prostate or there may already be undetectable cancer/ cancer cells outside of the prostate capsule (the staging of the cancer at diagnosis is not 100 percent accurate). About a third of men who have a radical prostatectomy require salvage radiotherapy at a later date. Your PSA will be monitored for life, so if there is something going on in there you will know about it so that it can be treated accordingly.

Hope this is of some help for starters but I'm sure others will come along with a lot more help and information. Chris

User
Posted 19 Aug 2022 at 00:02

Hi Deriliya, RP always sounds instinctively the best option just get rid of the prostate and all the cancer with it. The problem is, has it started to spread?

As has been mentioned about 30% off RP patients need RT at sometime afterwards (usually about three years after). So with a T3 diagnosis I'd say you have a moderately high chance some cells are outside the prostate. RT is usually given with the full dose being given to the prostate plus a margin of 10mm not to mention a slight spillover meaning the whole pelvis gets at least some radiation. So RT may wipe out cancer cells which have already escaped the prostate. But the spillover may occasionally cause damage to bowel and bladder.

Brachytherapy is a good treatment if offered.

Your life expectancy excluding prostate cancer is 87 so you need to hold this cancer at bay for about 12 years. If you're lucky the treatment will be fully effective and you will be cured. Side effects from RP are likely to be immediate, those from RT are likely to be five to ten years away. You may have no serious side effects from either treatment.

If you have RP and no serious side effects you will be recovered in less than six months. If you have RT with HT you may be on HT for two years, the side effects are tolerable but it is quite a long time.

If RP or RT fail then HT and other treatments will probably keep you alive for another decade.

You are correct that RT is nearly always preceded by three to six months of HT it has been shown to make the RT more effective.

Dave

User
Posted 19 Aug 2022 at 01:27

Hi,

With a G9 and T3 diagnosis and based on my own and others experiences I think there is a high chance that it may have already spread microscopically beyond the prostate. If that is the case then surgery and its side effects may be a additional burden that hindsight will show could have been avoided. Unfortunately you dont know till after the event. 

Question the surgeon/oncologist closely on this point though and note how they respond before you make a decision.

Cheers

John

User
Posted 19 Aug 2022 at 02:39

Suggest you carefully consider the Tool Kit to examine Pros and Cons of Treatment https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

Outcomes and side effects can vary considerably and of course it helps if the treatment is well administered and understood that further treatment of one sort or another may be subsequently required. The type of PCa you have and how well it is contained are some of the other factors that can influence choice and how adverse you are to potential side effects. You touch on another aspect and that is accepting your diagnosis and not worry about it to the extent that some men do, thereby robbing them of some of their quality time. The chances of having PCa increases with age although most men die with it rather than of it but for some men treatment is very beneficial.

Edited by member 19 Aug 2022 at 02:42  | Reason: Not specified

Barry
User
Posted 19 Aug 2022 at 08:09

Originally Posted by: Online Community Member
Gleeson 9....T3....PSA 15( this is all a new language to me). At first meeting with nurse and before the scans but after the MRI

 

You're in a similar position to where I started off and the same age. The scans you've had are adequate for finding cancer in the prostate but they might not pick up metastases in, for example, nearby glands. A number of people here, including myself, have had PSMA PET scans that in most cases will pick up more than an MRI can.

If you have RT and HT now it will almost certainly mean that you can't use it again if mets turn up later. If you have a prostatectomy and there's either local recurrence, or it later turns out that the cancer has spread to glands [or elsewhere], RT is an option to deal with the residue.

I'm a fan of PSMA PET scans, probably because they picked up some nearby mets in glands which were targeted in my treatment but I know everyone doesn't agree.

 

Jules

User
Posted 19 Aug 2022 at 21:31
You are in the position very many of us on this forum have been through, and to be honest there is no "right" answer, you just have to make a decision you are happy with.

The way I saw it there were a number of factors to consider:

- none of the treatments is much more effective than another, judging by the statistics on recurrence. But remember techniques improve, and data on 5-year survival rates assess on the technologies of 5+ years ago etc. The most modern radiotherapy machines (introduced in the last 5 years) focus the beam on the target area much better so may work better (and cause fewer side effects in nearby organs) whereas surgical approaches remain much the same.

- all treatments are no fun to go through, and have side effects. You need to read about these. Only you can decide what you can best put up with.

- age may be a factor, prostate surgery is pretty major and the younger you are the better the body heals on average (of course you may not be average). On the other side of the coin, some of the radiotherapy side effects are pretty long term (20 years plus) which becomes less worrisome if you are older.

- if surgery is suitable, once the prostate is removed there should be no PSA-producing cells left meaning recurrence can be detected very sensitively and dealt with by radiotherapy. With radiotherapy there will still be PSA produced by the remaining normal cells making changes harder to detect, and surgery no longer is available as a salvage treatment.

You will find it tough making a decision because it is tough! Read all the PCUK booklets, talk to your family, and decide what is best for you and your particular situation. Good luck!

User
Posted 22 Aug 2022 at 09:01

thanks all for constructive informative replies. Has given me some points/questions to put at my Wednesday meeting ...which points I would not necessarily have thought to even mention. I now appreciate better that no-one actually knows the correct answer /decision  re treatment options. In one sense its better however to have options....but still feel like I am in primary 1 where the subject is a University degree course!..onwards and upwards.

User
Posted 26 Aug 2022 at 09:52
The only advice I can give you, is my own logic - choose the "least invasive treatment" in other words, the more they hack you about, the more difficult it will be to recover from it.

I know you will be guided by your Oncologist - & rightly too, but IF you do have a choice - choose the least invasive is my advice.

I had the choice of RT & HT or Prostectamy - I chose the former, it takes quite a bit longer, but all of what I started out with is still there. (If a bit squashy now !)

Good luck in whatever route you follow.

User
Posted 26 Aug 2022 at 13:24
thanks...and have decided the HT/RT route after discussion with the Oncologist and some relatives who have had the issue in previous years. Treatment started with pills and shortly injections ....with RT in coming months.A great relief to be advised that while the cancer is aggressive and Gleeson9 its still all within the prostate...and good feeling to have made the decision.

Just "pot luck" that when I was in re blood pressure testing I had asked my Dr to do a PSA test ...where I had NIL symptoms.

Again many thanks to all who commented....the comments were all very helpful.

User
Posted 26 Aug 2022 at 16:01

Originally Posted by: Online Community Member
thanks...and have decided the HT/RT route after discussion with the Oncologist and some relatives who have had the issue in previous years. Treatment started with pills and shortly injections ....with RT in coming months.A great relief to be advised that while the cancer is aggressive and Gleeson9 its still all within the prostate...and good feeling to have made the decision.
Just "pot luck" that when I was in re blood pressure testing I had asked my Dr to do a PSA test ...where I had NIL symptoms.
Again many thanks to all who commented....the comments were all very helpful.

Yes, mine was found in a similar way - a different Dr, a Tummy upset & because my Dad died from PC, he thought it a good idea to do a PSA test - which came back 27, but a slow grower.
I believe all men over 60, should have a PSA test, & younger if they have a family history of it.

I wish you all the luck in the world with your treatment. The HT, is not nice, but try & keep active - without overdoing it. You will feel weak, a bit Girly ! Sex drive will go (But later return) - I expect you will have the 3 month lasting injection - that is the best way.

The month of RT, do follow all the diet advice - you do not want to be "Windy" if you can help it.

My RT, was done at Addenbrooks in Cambridge, & I cannot speak highly enough of them - it is a daily grind for a month,  though You will probably be on HT for some time afterwards, then 6 monthly PSA tests for the rest of your life.

My last one was 0.33, which they seem quite happy about - ED improves once you stop taking the HT - it can be helped with Tadalafil - (A weak daily Viagra) - though that can give some Heartburn. I could say more, but this is a public forum!!

 
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