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User
Posted 20 Sep 2017 at 12:39

First of all let me say that this is an excellent site with a lot information and personal stories.

This is my first post after being recently diagnosed with localised prostate cancer on 1 September 2017. 

I had no symptoms but after some routine blood tests I discovered I had an elevated PSA of 22. After being referred to a urologist and having a DRE, which showed a slight anomaly on the right, it was decided I should have a biopsy and also an MRI scan. The biopsy came back positive: 10 out 10 cores right and 1 out of 6 left; with a Gleason of 4+3. I was shocked with the news, although I had a feeling something may show up as my Father had prostate cancer. I have since had a bone scan which was clear and have been staged at T2a N0 M0.

The situation now is that I have spoken to a Surgeon about a prostatectomy by robotic surgery and will speak with an Oncologist in the coming week about high dose brachytherapy with external beam radio therepy.

I have read a lot of information online and also some personal experiences but because both procedures can have some very unpleasant out comes I don't know how I can decide which path to take.

 

Peter

User
Posted 22 Sep 2017 at 11:58

Hi Peter,

I think you need to look at all the options offered to you and ask questions.I had a PSA of 2.19 ,5 out of 12 cores positive and Gleason 3+4 =7.

I looked up all the information i could find talked to members on this site (They all have personal experience on all the options) .I had two options from the specialists to choose from in the end and took the Brachytherapy route (click on my avatar for more).

But as Joshan and others said you need to take in all the options that are suitable for you.I had my Brachytherapy in September 2016 and twelve months on doing well with very little problems so far, the specialists seem happy with my progress so far and have extended the next blood test to January.

Good luck John.

 

 

User
Posted 20 Sep 2017 at 15:04

Hello Peter and welcome to the site

If you go to Publications on this site you can download some information about the various treatments available to you and their possible side effects.

There are a number of men on here who can answer your questions due to personal experience (I can't as my husband had low dose Brachytherapy) so please hang on until somebody comes along.

It's always a shock, that first diagnosis, even if you suspect it might be the case due to family history.

All I can advise is to get as much information as you can before you make a decision. Obviously it has to be personal choice because you are the one who has to live with the results longterm but I'm sure you'll get help putting all the facts together and maybe some hints on questions to ask at the oncologist's meeting.

Best Wishes

Sandra

Edited by member 20 Sep 2017 at 15:05  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 20 Sep 2017 at 18:31

Hi Peter

You say the diagnosis is T2a yet you also indicate that the cancerous cells were found in both side of the prostate (T2c) - can you clarify? The main thing is that cancerous cells are confined to your prostate and from what you say there is no indication the cancer has spread beyond your prostate. 

This would mean you are a candidate for most treatments available and I wouldn't rule out brachytherapy which has as high a success rate as prostatectomy and tends to have less collateral damage! Some hospitals will rule out bracky as they haven't the skills to deal with PSA's of 22. However some hospitals e.g. Leeds and Guildford would consider bracky with a PSA of 22 as they have better facilities and/or the consultants have more experience.

Indecently - how old are you and do you know the size of your prostate?

Johsan is right - we are all shocked when we are fist diagnosed, so many questions and so many fears. My advice is don't panic - generally with localised prostate cancer you have to think as it tends to be a slow growing cancer. You have time to research and decide on the best treatment for you and don't be afraid to decide on a course of treatment that you consultant doesn't recommend unless he has reasons he can truly justify. My fist consultant recommended Da Vinci but I chose bracky and now I am very glad I did!

dl

 

User
Posted 21 Sep 2017 at 15:02

Unfortunately, we can't advise which is the best treatment for you. The success of either of the treatments you have been offered in terms of effectiveness is fairly similar overall but the consultants may feel that one is more suitable in your particular case. If this is not applicable, you may be swayed by the potential 'side effects' of both treatments or other considerations. What then becomes important is that you have a good and experienced surgeon do your op or the RT done at a well regarded hospital which the Christy is for RT. (Don't know where you would have surgery  but that would be something for you to check on).

Good luck and do let us know how you get on.

Edited by member 22 Sep 2017 at 01:27  | Reason: Not specified

Barry
User
Posted 21 Sep 2017 at 22:16

Hi Peter, 

Mine was 4+3 at the biopsy and T2a but close to the edge.  Also only one pin found a few bad cells so it was probably not a very good sample. After the op it was found to be 4+4. 

 

I don't know how close to the edge yours is but I considered all delay a risk and wanted it out as quickly as possible.  The surgeon at my post op clinics said I made the right choice without a doubt as 4+4 is a serious disease.  Anyway 9 months later my psa is undetectable.   

 

The op caused me no pain at all.  You have to get used to wearing a catheter for a week, injecting anti coagulant for a month and to wearing a pad. Although I don't wear one now.  I still have ED although I was told one side tried to be spared. 

 

 

We're all different the consultant said some have more tolerance to having a tumour in them and others put big importance on retaining functions.  Those are the opposite to me.  Good luck.

Peter

User
Posted 21 Sep 2017 at 22:35

A minor point but worth noting that not everyone needs anti-coagulants post op.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Sep 2017 at 12:11

Hi PeteOct16,

Thanks for your reply and good to hear you're progressing well. I have cancer in both sides of the prostate, mostly in the right side. I was told after the DRE that the there was a firm edge to the right side. The Biopsy showed 1 sample was cancerous in the left and 10 in the right, all 4+3. 

I won't see an oncologist until 27th Sept. If I opt for surgery I have been told that the nerve on the right would be taken and they would attempt to spare the one on the left. I believe that the oncologist, according to the MDT, will offer high dose brachytherapy, external beam radio therapy and hormone therapy.

Still got a lot of thinking to do.

 

Peter

User
Posted 22 Sep 2017 at 16:06

One of the questions to ask the surgeon is "if I have the op, what is the % chance that I will need adjuvant RT or salvage RT?" You could ask the oncologist "if I have brachy / RT for how long are you recommending that I have the hormones?"

Those two answers should help you clarify your thoughts. John would never have had the op if he had known that the nomogram was predicting a 55% risk of needing salvage treatment.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Sep 2017 at 18:32

Hi Peter,

I had just the low dose implants with no other treatment but my PSA and Gleason was low and you need to look at the numbers as the first number in Gleason is for the higher value cancers found and second is for the lesser cancers in the samples.(ie i was 3+4 so more 3 in sample, and you are 4+3 so more 4 in your sample) i do hope this is not confusing, others may explain it better than me.

I googled as much as i could before my decision but i did have a friend at the time that had Brachytherapy four years before mine, so it may have helped with my choice right or wrong only time will tell

I wish you well but do all the research you can including talking to your specialists as well and ask loads of questions on here as well as members HERE have seen it all and got the tee shirts.

 

Regards John.

 

 

User
Posted 26 Sep 2017 at 22:09
Hi Peter

I have also just been through the same decision process and there is so much help and advice that the mind is awash with options but in the end it is your decision. That’s no real help but it’s where I got to.

I decided on surgery because in my mind I decided that I wanted this cut out of me - nothing more clever than that. There are pros and cons for all the options and no guarantees with any options. I personally am looking that this is the start of a journey for me, hopefully the surgery will remove the PC early and then I have to face the side effects - whatever they may be.

I wish you all the best and hope you can settle your decision in your mind and move forward. Always happy to chat if it help

Rappo

User
Posted 27 Sep 2017 at 10:00

Good Luck Peter with your decision processing I am sure whatever you decide will be the right route for you.

 

I am in a similar situation, I should be going for surgery on Monday (2nd October) - robotic prostatectomy after having been given 3 dates for the op and each having been cancelled - hopefully this Monday I'll get into theatre! :-)

 

Best wishes

 

User
Posted 27 Sep 2017 at 17:03

Hi Rappo, Tinkerbell,

Thanks for your posts and best wishes.

I have been to see the oncologist today (27 Sept). She told me that If I choose the radio therapy path I will start on hormone therapy for 3 months followed by high dose brachytherapy and then 15 sessions of external beam radio therapy. I would then continue on hormone therapy for up to 2 years.

She gave me the impression that this was my best path, as if I chose the surgery I would most likely have to have RT afterwards. Apparently this is because all 10 cores of the biopsy in the right side were cancerous with a gleason of 4+3 and also my high PSA of 22. I did ask about low dose brachytherapy but I wouldn't be a suitable candidate with my stage of cancer.

I am currently leaning to towards the RT solution which would be carried out at The Christie in Manchester, which isn't too far away.

p.s. Tinker and Rappo, I hope your surgery goes well and wish you all the best.

 

Peter

 

User
Posted 28 Sep 2017 at 11:17

Well, Good luck for the start tomorrow Peter and also to Tinkerbell for the 2nd. Hope yours doesn't get cancelled again.

Best Wishes to both of you


***

We can't control the winds - but we can adjust our sails
User
Posted 02 Oct 2017 at 16:26
Hi Peter, I hope the side effects are minimal and that you're treatment goes well now you have decided your treatment path.

Best wishes, Ian.

Ido4

User
Posted 03 Oct 2017 at 05:01

Hi Pete,

I think it's a bit easier once you have made the decision and get an idea and time scale of events it did with me.Good luck with your treatment and keep us all in the loop.

John.

User
Posted 31 Oct 2017 at 16:41

Hi all am recently diagnosed Gleason 6 PSA 6, 5.9 then 6.1 (following well-man check on reaching 60 - am now nearly 62)
Just trying to get my head round my options - I see consultant tomorrow for bone scan results.
The info above is helpful - just wanted to offer my thanks at this stage
Jeff

Show Most Thanked Posts
User
Posted 20 Sep 2017 at 15:04

Hello Peter and welcome to the site

If you go to Publications on this site you can download some information about the various treatments available to you and their possible side effects.

There are a number of men on here who can answer your questions due to personal experience (I can't as my husband had low dose Brachytherapy) so please hang on until somebody comes along.

It's always a shock, that first diagnosis, even if you suspect it might be the case due to family history.

All I can advise is to get as much information as you can before you make a decision. Obviously it has to be personal choice because you are the one who has to live with the results longterm but I'm sure you'll get help putting all the facts together and maybe some hints on questions to ask at the oncologist's meeting.

Best Wishes

Sandra

Edited by member 20 Sep 2017 at 15:05  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 20 Sep 2017 at 18:31

Hi Peter

You say the diagnosis is T2a yet you also indicate that the cancerous cells were found in both side of the prostate (T2c) - can you clarify? The main thing is that cancerous cells are confined to your prostate and from what you say there is no indication the cancer has spread beyond your prostate. 

This would mean you are a candidate for most treatments available and I wouldn't rule out brachytherapy which has as high a success rate as prostatectomy and tends to have less collateral damage! Some hospitals will rule out bracky as they haven't the skills to deal with PSA's of 22. However some hospitals e.g. Leeds and Guildford would consider bracky with a PSA of 22 as they have better facilities and/or the consultants have more experience.

Indecently - how old are you and do you know the size of your prostate?

Johsan is right - we are all shocked when we are fist diagnosed, so many questions and so many fears. My advice is don't panic - generally with localised prostate cancer you have to think as it tends to be a slow growing cancer. You have time to research and decide on the best treatment for you and don't be afraid to decide on a course of treatment that you consultant doesn't recommend unless he has reasons he can truly justify. My fist consultant recommended Da Vinci but I chose bracky and now I am very glad I did!

dl

 

User
Posted 21 Sep 2017 at 12:03

Hi Devon, Sandra,

Thanks for your reply.

Having read several publications on prostate cancer and staging I think my staging at T2a is incorrect as I was confirmed with cancer in both sides. It may have been a dictated error to the consultants secretary.

I don't know the size of my prostate other than it being enlarged. I was told if I went for Brachytherapy it would be high dose with external beam radio therapy as well as hormone therapy. I read that this treatment can also have side effects: urine retention; bowel problems etc.

If I opted for Brachytherapy it would be carried out at the Christy in Manchester, which is about 20 miles away.

Im 63 and retired.

 

Peter

User
Posted 21 Sep 2017 at 15:02

Unfortunately, we can't advise which is the best treatment for you. The success of either of the treatments you have been offered in terms of effectiveness is fairly similar overall but the consultants may feel that one is more suitable in your particular case. If this is not applicable, you may be swayed by the potential 'side effects' of both treatments or other considerations. What then becomes important is that you have a good and experienced surgeon do your op or the RT done at a well regarded hospital which the Christy is for RT. (Don't know where you would have surgery  but that would be something for you to check on).

Good luck and do let us know how you get on.

Edited by member 22 Sep 2017 at 01:27  | Reason: Not specified

Barry
User
Posted 21 Sep 2017 at 22:16

Hi Peter, 

Mine was 4+3 at the biopsy and T2a but close to the edge.  Also only one pin found a few bad cells so it was probably not a very good sample. After the op it was found to be 4+4. 

 

I don't know how close to the edge yours is but I considered all delay a risk and wanted it out as quickly as possible.  The surgeon at my post op clinics said I made the right choice without a doubt as 4+4 is a serious disease.  Anyway 9 months later my psa is undetectable.   

 

The op caused me no pain at all.  You have to get used to wearing a catheter for a week, injecting anti coagulant for a month and to wearing a pad. Although I don't wear one now.  I still have ED although I was told one side tried to be spared. 

 

 

We're all different the consultant said some have more tolerance to having a tumour in them and others put big importance on retaining functions.  Those are the opposite to me.  Good luck.

Peter

User
Posted 21 Sep 2017 at 22:35

A minor point but worth noting that not everyone needs anti-coagulants post op.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Sep 2017 at 11:58

Hi Peter,

I think you need to look at all the options offered to you and ask questions.I had a PSA of 2.19 ,5 out of 12 cores positive and Gleason 3+4 =7.

I looked up all the information i could find talked to members on this site (They all have personal experience on all the options) .I had two options from the specialists to choose from in the end and took the Brachytherapy route (click on my avatar for more).

But as Joshan and others said you need to take in all the options that are suitable for you.I had my Brachytherapy in September 2016 and twelve months on doing well with very little problems so far, the specialists seem happy with my progress so far and have extended the next blood test to January.

Good luck John.

 

 

User
Posted 22 Sep 2017 at 12:11

Hi PeteOct16,

Thanks for your reply and good to hear you're progressing well. I have cancer in both sides of the prostate, mostly in the right side. I was told after the DRE that the there was a firm edge to the right side. The Biopsy showed 1 sample was cancerous in the left and 10 in the right, all 4+3. 

I won't see an oncologist until 27th Sept. If I opt for surgery I have been told that the nerve on the right would be taken and they would attempt to spare the one on the left. I believe that the oncologist, according to the MDT, will offer high dose brachytherapy, external beam radio therapy and hormone therapy.

Still got a lot of thinking to do.

 

Peter

User
Posted 22 Sep 2017 at 16:06

One of the questions to ask the surgeon is "if I have the op, what is the % chance that I will need adjuvant RT or salvage RT?" You could ask the oncologist "if I have brachy / RT for how long are you recommending that I have the hormones?"

Those two answers should help you clarify your thoughts. John would never have had the op if he had known that the nomogram was predicting a 55% risk of needing salvage treatment.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Sep 2017 at 17:43

Thanks LynEyre,

I will add those questions to my list. What is the nomogram you refer to?

Peter

User
Posted 22 Sep 2017 at 17:47

Thanks Johntheprint,

Can I ask you which brachytherapy you had. Ive been told I would be offered the high dose version with hormone therapy and EBRT.

 

Peter

User
Posted 22 Sep 2017 at 18:32

Hi Peter,

I had just the low dose implants with no other treatment but my PSA and Gleason was low and you need to look at the numbers as the first number in Gleason is for the higher value cancers found and second is for the lesser cancers in the samples.(ie i was 3+4 so more 3 in sample, and you are 4+3 so more 4 in your sample) i do hope this is not confusing, others may explain it better than me.

I googled as much as i could before my decision but i did have a friend at the time that had Brachytherapy four years before mine, so it may have helped with my choice right or wrong only time will tell

I wish you well but do all the research you can including talking to your specialists as well and ask loads of questions on here as well as members HERE have seen it all and got the tee shirts.

 

Regards John.

 

 

User
Posted 26 Sep 2017 at 22:09
Hi Peter

I have also just been through the same decision process and there is so much help and advice that the mind is awash with options but in the end it is your decision. That’s no real help but it’s where I got to.

I decided on surgery because in my mind I decided that I wanted this cut out of me - nothing more clever than that. There are pros and cons for all the options and no guarantees with any options. I personally am looking that this is the start of a journey for me, hopefully the surgery will remove the PC early and then I have to face the side effects - whatever they may be.

I wish you all the best and hope you can settle your decision in your mind and move forward. Always happy to chat if it help

Rappo

User
Posted 27 Sep 2017 at 10:00

Good Luck Peter with your decision processing I am sure whatever you decide will be the right route for you.

 

I am in a similar situation, I should be going for surgery on Monday (2nd October) - robotic prostatectomy after having been given 3 dates for the op and each having been cancelled - hopefully this Monday I'll get into theatre! :-)

 

Best wishes

 

User
Posted 27 Sep 2017 at 17:03

Hi Rappo, Tinkerbell,

Thanks for your posts and best wishes.

I have been to see the oncologist today (27 Sept). She told me that If I choose the radio therapy path I will start on hormone therapy for 3 months followed by high dose brachytherapy and then 15 sessions of external beam radio therapy. I would then continue on hormone therapy for up to 2 years.

She gave me the impression that this was my best path, as if I chose the surgery I would most likely have to have RT afterwards. Apparently this is because all 10 cores of the biopsy in the right side were cancerous with a gleason of 4+3 and also my high PSA of 22. I did ask about low dose brachytherapy but I wouldn't be a suitable candidate with my stage of cancer.

I am currently leaning to towards the RT solution which would be carried out at The Christie in Manchester, which isn't too far away.

p.s. Tinker and Rappo, I hope your surgery goes well and wish you all the best.

 

Peter

 

User
Posted 27 Sep 2017 at 22:37

Hi Peter,

Does that mean you haven't finally decided or are you waiting to be called for hormone treatment?

If they'd said to me I'd probably need RT after RP then I'd likely be reluctantly accepting their advice.  I almost got the impression that hormone treatment would start immediately if I went that way and I've read good things about brachytherapy, which I wasn't offered.

It's interesting that the biopsy result and PSA level are determining their opinion and no mention of the MRI.  The urologist at my local hospital said the biopsy was uncertain as only 1 pin found any bad cells and that the tumour could be bigger than they thought and offered a template biopsy.  Although the surgeon who was at a different hospital said the MRI showed it was 13mm diameter near the apex on one side, fairly common.  The surgeon was very matter of fact and said little, although he was very experienced in RP.

I've read that surgeons are reluctant to operate on people with a psa sometimes more than 10 and other times 15.  So perhaps that's all steering towards not having an RP. When you know what you're going to do it seems more straight forward.

Keep us informed.

Regards

Peter

 

User
Posted 28 Sep 2017 at 10:17

Hi Peter,

Yes I have decided to take the Brachytherapy route and will be starting my hormone course tomorrow when I call at the hospital. I missed stating that the MRI scan was also taken in to consideration. The biopsy for the right side of my prostate had 10 out of 10 cores cancerous, Gleason 4+3, at 80% also the cancer was pushing at the edge of capsule but still contained. I think if the cancer was just in one side and less of it I would have considered RP.

Im happy now Ive come to a decision and just want to start ridding myself of the pernicious thing.

 

Peter

User
Posted 28 Sep 2017 at 11:17

Well, Good luck for the start tomorrow Peter and also to Tinkerbell for the 2nd. Hope yours doesn't get cancelled again.

Best Wishes to both of you


***

We can't control the winds - but we can adjust our sails
User
Posted 02 Oct 2017 at 16:08

Have started with HT today. 150 mg Bicalutamide once a day, don't know what side effects I'm going to have or when I'll have them. Will be taking them for at least 9 months, Brachytherapy in 3 months.

Edited by member 04 Oct 2017 at 17:20  | Reason: Not specified

User
Posted 02 Oct 2017 at 16:26
Hi Peter, I hope the side effects are minimal and that you're treatment goes well now you have decided your treatment path.

Best wishes, Ian.

Ido4

User
Posted 03 Oct 2017 at 05:01

Hi Pete,

I think it's a bit easier once you have made the decision and get an idea and time scale of events it did with me.Good luck with your treatment and keep us all in the loop.

John.

User
Posted 31 Oct 2017 at 16:41

Hi all am recently diagnosed Gleason 6 PSA 6, 5.9 then 6.1 (following well-man check on reaching 60 - am now nearly 62)
Just trying to get my head round my options - I see consultant tomorrow for bone scan results.
The info above is helpful - just wanted to offer my thanks at this stage
Jeff

User
Posted 31 Oct 2017 at 22:36

Gleason score is important as it indicates the degree to which the greatest number and next most numerous cancer cells have deviated from normal cells. However, the Gleason arrived at following biopsy is not always what is determined when removed Prostates are examined in the lab. Where these assessments differ, the Gleason is more often upgraded than downgraded. What is of more importance is the staging. If scans/biopsies lead to the consultants believing the cancer is well contained the chances of a Prostatetectomy being successful are improved. If the cancer is about to burst out of the capsule the likelihood of needing to add RT to the surgical operation greatly increases. (RT can go beyond the limits of the knife). In such a situation some men will conclude that they should go straight to RT (usually accompanied with HT) rather than experience the potential side effects of Surgery too.

Barry
User
Posted 01 Nov 2017 at 17:17

Thanks Old Barry

Have got results of bone scan and that's clear so it's a localised pc - so my decision is Surgery(robot assisted) by a very experienced surgeon,   or EBRT or Active Surveillance . My initial reaction is to go for surgery and remove the "trouble". 

Jeff s

 
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