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User

Posted 19 Aug 2016 at 17:25

Hi All just to introduce myself. I live in France but there is no help like this here. I have recently been diagnosed with Prostate Cancer after spending the last few years watching my PSA grow to 12.3. I have had the usual examinations and last month had a biopsy which resulted in my diagnosis. The Gleason score being 3 + 3. The consultant has suggested that the Prostate should be removed or treated with Radio Therapy. A good friend of mine has just this week be diagnosed in UK with the same PSA and Gleason score. His consultant does not recommend removal as it could have a huge impact on his quality of life. I had resigned myself to the removal but now I am confused as to what to do.

From what I have read the Gleason score indicates that it is the lowest score that indicates cancer and as such it is usually just monitored at this stage.

Any advise would be most welcome

User

Posted 19 Aug 2016 at 18:40

Hi and welcome

It's not a simple comparison.Other factors come into play such as at what rate has the PSA inceased recently, how did the prostate feel on a DRE, what percentage of the cores had cancer cells, age.

You would do better asking your consultant if it's feasible you could wait before having to make a choice - treatment or not.

Ray

User

Posted 19 Aug 2016 at 19:19

Hello dogginut and welcome

3+3 is low and yes, in England I suspect that you would be offered Active Surveillance.

I assume that you have no other health problems, and that the cancer is contained?

Treatment is a very personal thing. What suits one may well not suit another, even if they both have the same Gleason.

Perhaps in France it is automatic for consultants to immediately suggest the operation or RT.

All treatments have the potential to make life altering changes so you must consider very carefully whether you could live with those changes.

We have The Toolkit available from publications on this site and it may help you with information. There are also the specialist hotline nurses on 0800 074 8383 who could perhaps answer more questions for you.

Personally, I would be asking the consultant to explain why he is only offering you those two choices. With the Gleason at 3+3 I would have thought you had greater choices available to you.

Sandra

*****

We can't control the winds - but we can adjust our sails

User

Posted 22 Aug 2016 at 06:26

Hi doggi,

Hope today goes well, let us know how you get on?

The more information and data you have the better we can all relate to you.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 27 Aug 2016 at 15:12

Had a discussion with my consultant about HIFU and he explained that although it is available it is still a clinical trial and they will choose the patient. He said that he thought as I was so young I would not be a good candidate.

Anyway had a Cat scan yesterday and the good news is that there is no other cancers present, big moral boost, and it looks like I will have the Prostate removed but he assured me that there was no rush even though he offered me a date of 28 September. The consultant has carried out a large number of removals and he uses a open surgery technique. What is interesting is that under the French Medical system I can choose the surgeon and the technique, i.e. open, keyhole or robotic.

I am pretty laid back about the whole thing. I guess 22 years in the Army has taught me to accept your fate, I can't change what has happened but I can plan for the future and the problems it will throw in my direction. I have a very loving wife an she is a pillar of strength and will support me all the way even though it is likely she will be doing a little more laundry.

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User

Posted 19 Aug 2016 at 18:40

Hi and welcome

It's not a simple comparison.Other factors come into play such as at what rate has the PSA inceased recently, how did the prostate feel on a DRE, what percentage of the cores had cancer cells, age.

You would do better asking your consultant if it's feasible you could wait before having to make a choice - treatment or not.

Ray

User

Posted 19 Aug 2016 at 19:19

Hello dogginut and welcome

3+3 is low and yes, in England I suspect that you would be offered Active Surveillance.

I assume that you have no other health problems, and that the cancer is contained?

Treatment is a very personal thing. What suits one may well not suit another, even if they both have the same Gleason.

Perhaps in France it is automatic for consultants to immediately suggest the operation or RT.

All treatments have the potential to make life altering changes so you must consider very carefully whether you could live with those changes.

Personally, I would be asking the consultant to explain why he is only offering you those two choices. With the Gleason at 3+3 I would have thought you had greater choices available to you.

Sandra

*****

We can't control the winds - but we can adjust our sails

User

Posted 19 Aug 2016 at 19:39

Thanks for the responses. I have a bone scan next Friday at 9.30 and an appointment with the consultant right after to discuss the scan and the options. The cancer is contained and the left side is larger and that is where the cancer cells are. There are no signs on the right side. There are a lot of questions I need ask the consultant before I proceed but it is really good that I have some one I can talk to in the mean time. Will not have my full Gleason results until Monday when I will post again. After an initial feeling of doom and gloom I have pretty much accepted that whatever hand I am dealt then thats what I have to deal with. Onwards and upwards as they say

User

Posted 19 Aug 2016 at 20:14

Originally Posted by: Online Community Member

Thanks for the responses. I have a bone scan next Friday at 9.30 and an appointment with the consultant right after to discuss the scan and the options. **The cancer is contained** and the left side is larger and that is where the cancer cells are. There are no signs on the right side. There are a lot of questions I need ask the consultant before I proceed but it is really good that I have some one I can talk to in the mean time. ****Will not have my full Gleason results until Monday**** when I will post again. After an initial feeling of doom and gloom I have pretty much accepted that whatever hand I am dealt then thats what I have to deal with. Onwards and upwards as they say

My **bold and asterisked**. Really. Contained? Lucky you.

I too had a Gleason score of 3 + 3, and was told it was contained. Prior to pathology. Its all guess work, a "guesstimation" prior to pathology.

I do not know of anyone who has had their Gleason downgraded after pathology. Sad to say.

After my RRP and the subsequent pathology, in the dish, in the Laboratory, the only accurate way of determining staging as far as I am aware, I was "upgraded", and that is not a good thing like as in from Ryan Air Economy, outside hanging from the wing, to British Airways Business Class, I was upgraded to 3 + 4, touching the wall of the capsule, and about to burst through and spread. Pizzas me off to this day.

****wrong****. You will not have your full Gleason score until you have the pathology report.

If this sounds harsh, and you don't like it, ignore it. But you are not assessing with a full deck, IMHO.

What is really GOOD, is that you have arrived at the stage of acceptance, already.

It takes some of us a lot longer to reach that stage, a lot more time and a lot more beer or whatever support.

If I were you, I would not be so accepting of everything you have been told. I would question and question and then question again. And make notes.

Chase up appointments.

Badger for treatment ASAP.

You will only have once chance to get this right, first time.

Don't waste it.

Lots of good sympathetic advice here, but at some point there has to be a wake up smell the coffee moment.

Anyway, despite my upgrading, I am 3.5 years down the line, PSA <0.01, not pissing myself uncontrollably, able to have mundane and tedious sex. Regularly.

But, at your stage I questioned everything I was told, and then probed further. I accepted nothing I was told without checking and then rechecking what I had been told.

I was aggressive, belligerent and relentless in my research of treatment options, and equally aggressive and thorough in my subsequent post operation support.

Atb

dave

If any of this offends you, let me know, I will delete it. But someone needs to say wake up, face up to the hard reality. I had to. We all had to.

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 20 Aug 2016 at 06:38

Thanks country boy I like straight talking. Sad thing is I had the report in my hand and the consultant nabbed it. I get a copy on Monday. My main worry is at 63 I am otherwise healthy and fit and I am not looking forward to a lack of stiffness and wet pants. I have had no other symptoms other than the high PSA. Here in France you have regular blood tests after the age of 55 so if I had been UK resident I probably wouldn't know I had a Prostate problem. The report will be in my hands on Monday morning so I will have the full information then.

User

Posted 20 Aug 2016 at 08:53

Originally Posted by: Online Community Member

The lack of general PCa related symptoms is in my uneducated and laypersons opinion a positive for you. I cling onto the thought that as the disease had not impaired my body function too much, or at all, it is hopefully not running round inside of me. A form of Optimism and Logic, or optilogic.

The fact that you are otherwise healthy and fit will be in your favour. Some treatment options are not available to you if you are unfit or too overweight.

The "lack of stiffness and wet pants", well they are not a foregone conclusion. They are all possible side effects just as much as a longer life is a potential side effect of your treatment. "Life" is the intended one, the others, unwelcome visitors IF they occur, and IF they persist.

The worst part of this is the not knowing, the imagination is worse than the reality. And, Dr Google is a cruel physician.

I hope you have a good weekend, there is nothing you can do now to change anything, and I really hope that your report and results on Monday are kind to you.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 20 Aug 2016 at 08:57

You might be missing the point dogginutt as Dave meant that the only way to be sure is when the prostate is being analysed after it has been removed. It is only then that you have "all the facts" not the ones from the initial diagnosis that are purely the assessment of the specialist which may or may not be correct but him getting it wrong does not affect him for the rest of his life like it does you.

Sorry for being upfront but that is how it is.

I had Gleason 3+4=7 with PSA 63 and T2 , I was not offered a prostectomy as my prostate was too close to the rectum wall and there was a danger of leaving some cells or breaking through the wall. I had HT and RT which so far has been ok and in my mind I am glad that I did not have to make the decision about having a RRP but not sure what I would have done if it had been on the table. I am happy with the way things are and my PSA is down to undetectable levels, less than 0.001. I know I would not have liked the incontinence issues and long term ED but have loss of libido and ed problems with some penile atrophy so taking evasive actions. If you go down the HT/RT rout be sure to organise the ED/ penile rehab problem with your specialist nurse or ED nurse( mine happened to be the same person)

Regards Chris/Woody

Life seems different upside down, take another viewpoint

Edited by member 20 Aug 2016 at 08:57 | Reason: Not specified

User

Posted 20 Aug 2016 at 13:39

Even before your treatment choice (there should always be a choice), you need ALL the diagnostics: MRI, bone scan, biopsy, and more - until then, your consultant is guessing.

User

Posted 21 Aug 2016 at 12:52

Originally Posted by: Online Community Member

My main worry is at 63 I am otherwise healthy and fit and I am not looking forward to a lack of stiffness and wet pants. I have had no other symptoms other than the high PSA.

Hi..

It's not necessarily all doom and gloom...

Other comments about being offered active surveillance... and other treatments other than op or traditional RT are very valid. There should be other options available to you unless there are other complications that haven't been mentioned.. e.g. enlarged prosate which may preclude some treatments

Your diagnosis much like mine.. read my profile for progress.

KRO...

User

Posted 22 Aug 2016 at 06:26

Hi doggi,

Hope today goes well, let us know how you get on?

The more information and data you have the better we can all relate to you.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 22 Aug 2016 at 12:51

Thanks for that it seems I was slightly missing the point.

Dave

User

Posted 22 Aug 2016 at 15:45

OK I now have the scores on the doors

Left side Cancer(mm) Right Side Cancer(mm)

size size

Top 10 2 12 0

Mid 12 2 15 0

Base 12 0 20 0

Total 34 4 3 + 3

Gleason 3 + 3 = 6

There is a full report from the Path lab but I still have to translate but the above seems to be the most important bit.

User

Posted 22 Aug 2016 at 15:55

See my profile. I'm fit , about your age. Zero symptoms. T2 upgraded to T3 post op. Only had PSA tests due to Family History.

As others have posted .. In my opinion keep informed, 'google' as much current info and treatments. Early detection (which you have) is key, you can make informed decisions. Ie PSA data etc is irrelevant now in many ways, biopsy is only a 'guide'. No one can predict the speed of change in my opinion. The one thing I remember my consultant saying as I was told after my biopsy results and I questioned quite a lot.. its not the amount of tumorous material, it's the degree and type of change.

Yes, I could have been over treated, I'll live with that. Gleason 3+4 so my decision was very easy. 1. Do nothing 2. Surgery 3. Radiotherapy (Note : Do ask about Internal radiotherapy - Brachy. )

My consultant didn't offer Brachy (I didn't know this option until someone on here had posted, with good results it seems) and wife and I decided 1. was not an option.

2 and 3 was difficult .. and no we didn't through a coin ! We choose 2.

I would also keep notes (as often things get blurred ), especially as from your post - you don't appear to have copy of results. Things are obviously done in differing timelines, sequence. Mine seemed very logically

GP referral (he was out the loop then in many ways) to Hosp (NHS, nothing private)

MRI for targeted Biopsy
Biopsy about 10 days later
Results
CT Scan
Bone scan
MDT (Multi disciplinary team - discuss case etc)
Decision time
Pre - Med
OP

About 3 months (Nov to Feb) from GP to Surgery

Hope this helps.

*** EDITED 15:58 *** Added this :

I didn't see your data post as I posted. My results were never shown to me in that way at all. I have no idea where the biopsy cores had been targeted or the location etc .. I only knew both sides in my case had tumours. Do ask about all options as this may be low grade and very slow growing. My older brother (he's 69) lives in Australia and pays for detailed MRI scan of prostate, and has circa 5 - 6 value PSA and has had a quite a few symptoms. To date however no biopsy. He has BPH.

Edited by member 22 Aug 2016 at 16:10 | Reason: Not specified

User

Posted 23 Aug 2016 at 01:41

An important factor here is where the cancer is in the prostate. If it's thought to be well contained, there is a good chance of being able to remove all the cancer by surgery soon or before very long. it would also mean a smaller area on which to focus RT if this treatment chosen. If however, the cancer is thought to be very close to the margin, there becomes an increased risk that in the event a surgeon might not be able to remove all cancer with the prostate. Should this prove to be the case, it is highly likely that RT would be given as a follow up.

It might be too difficult to reach but otherwise with the cancer only one side you could ask whether HIFU might be a suitable option. I would have thought that this procedure would have been more widely done in France, one of the 2 main delivery systems being the French 'Ablatherm'.

Barry

User

Posted 23 Aug 2016 at 09:07

Thanks Barry for that I have not heard about Ablatherm HIFU treatment and I will certainly be asking that question.

User

Posted 27 Aug 2016 at 15:12

User

Posted 27 Aug 2016 at 17:45

Good news in the circumstance dogginut.

Sounds like you have got your head in a good place, that can be more than half the battle.

Also good to have a supportive partner in your corner with you.

have a good weekend.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

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