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My head is spinning

User
Posted 31 Aug 2017 at 09:24

Hi All

Just been diagnosed with PC only yesterday! my score is G6, T2 NO, I had no symptoms prior 8 weeks ago just asked doc for a PSA test as I recently turned 55, i am fit and healthy otherwise. What a roller coater 8 weeks, my psa came back slightly raised so urine sample, then another blood test still slightly raised, I was referred to see a urologist within a week, then an MRI scan was arranged within a further 5 days where by the result showed some abnormalities on both left and right side, biopsy then arranged within five days and results yesterday.

I have been advised that the options are radiotherapy or surgery, the MDT team are reviewing my case on Friday 1st Sept (tomorrow) I have a meeting with the radiotherapy nurse this pm to talk to me about that option and early next week with the surgeon.

Its all happening too fast, a great credit to our wonderful NHS however what does it all mean? I am going out of my mind yet trying to stay strong for my wife but just the mere thought of having Cancer in my body scares the living daylights out of me.... need some help and strong advice, i have never felt so scared and alone in my entire life.....

I am a strong person normally and not new to Cancer as over the years have lost both of my parents to this horrid f**$%^ disease 

Sorry for the mixed up head....

User
Posted 31 Aug 2017 at 10:28

Hi

It is very hard to take it all in when first diagnosed and it takes time for it to all sink in but your numbers give you a good chance for treatment and i would suggest looking into all the options and side affects as you will probably get a choice of two or more and you need to have a good idea of the options for treatment before you meet the consultants and as with me they both thought theirs was the best option.

I had a Gleason of 3+4=7 and was offered a full radical removal or Brachytherapy and took the Brachytherapy (click my avatar to see my journey so far) and 11 months on i am doing well with PSA dropping.

I think the main reason i took the brachytherapy route was that i had a friend that had it done three years earlier and it seemed the best route for me with less complications but of course no guarantees over any other procedures.

Please come back if you need any other questions answered .

 

John.

User
Posted 31 Aug 2017 at 11:21

Hello Robin and welcome to the site

With a Gleason of 6 you should have a lot of options available to you including possibly doing nothing !!

That sounds a bit contradictory doesn't it but a Gleason of 6 is the lowest there is and, like John above, my husband was also 3+4=7 and had all options open to him. He too eventually opted for permanent seed brachytherapy and that was three years ago and he is well.

My John had a year on what is known as Active Surveillance which is where you are closely monitored but there is no invasive treatment. As soon as things change (as in the case of my husband and his PSA started to rise) then the PC can be addressed.

What, by the way, was you PSA as it may have a bearing on your future treatment?

Go to publications on this website (main page) and download the Toolkit and it might give you information for your meetings.

All I would strongly advise at present is to weigh up your options very very carefully.

You are a relatively young man (unlike my husband who is now coming up for 77) and you have many years  ahead of you, hopefully with a strong and active sex life.

Please check out what will be available to you before you jump in feet first. The thought of having cancer inside you can be terrifying but with Prostate Cancer, if you have the slow growing version then you have time (possibly a lot of time) before you need to panic.

So first question to ask all of them. Do I have an aggressive form that is fast growing.

A surgeon (especially one dealing with an "easy" patient (low PSA, Low Gleason of 6) will rub his hands with glee because he knows that from his point of view he can do a good job. The long term after affects for you aren't really his concern once he's done his job. Cynical attitude perhaps but that's how I see it.

The same with the oncologist. All consultants will (probably - though not always) push their own treatments at you and it is down to you to get as much information as possible before you opt for any treatment.

We can offer advice and support but we cannot make those decisions for you.

Please ask about the aggressiveness and get your full facts first (and tell us what your latest PSA was)

All the best.

You've some to the right place for help and support

Sandra

*****

Edited by member 31 Aug 2017 at 11:23  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 02 Sep 2017 at 01:54

I have been reading this today. For anyone diagnosed with a low risk Gleason 6 I think it's worth a read

https://www.amazon.co.uk/Invasion-Prostate-Snatchers-Essential-Managing/dp/1590515153/ref=sr_1_1?ie=UTF8&qid=1504313637&sr=8-1&keywords=Invasion+of+the+prostate+snatchers

Regards

Clare

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User
Posted 31 Aug 2017 at 10:28

Hi

It is very hard to take it all in when first diagnosed and it takes time for it to all sink in but your numbers give you a good chance for treatment and i would suggest looking into all the options and side affects as you will probably get a choice of two or more and you need to have a good idea of the options for treatment before you meet the consultants and as with me they both thought theirs was the best option.

I had a Gleason of 3+4=7 and was offered a full radical removal or Brachytherapy and took the Brachytherapy (click my avatar to see my journey so far) and 11 months on i am doing well with PSA dropping.

I think the main reason i took the brachytherapy route was that i had a friend that had it done three years earlier and it seemed the best route for me with less complications but of course no guarantees over any other procedures.

Please come back if you need any other questions answered .

 

John.

User
Posted 31 Aug 2017 at 11:21

Hello Robin and welcome to the site

With a Gleason of 6 you should have a lot of options available to you including possibly doing nothing !!

That sounds a bit contradictory doesn't it but a Gleason of 6 is the lowest there is and, like John above, my husband was also 3+4=7 and had all options open to him. He too eventually opted for permanent seed brachytherapy and that was three years ago and he is well.

My John had a year on what is known as Active Surveillance which is where you are closely monitored but there is no invasive treatment. As soon as things change (as in the case of my husband and his PSA started to rise) then the PC can be addressed.

What, by the way, was you PSA as it may have a bearing on your future treatment?

Go to publications on this website (main page) and download the Toolkit and it might give you information for your meetings.

All I would strongly advise at present is to weigh up your options very very carefully.

You are a relatively young man (unlike my husband who is now coming up for 77) and you have many years  ahead of you, hopefully with a strong and active sex life.

Please check out what will be available to you before you jump in feet first. The thought of having cancer inside you can be terrifying but with Prostate Cancer, if you have the slow growing version then you have time (possibly a lot of time) before you need to panic.

So first question to ask all of them. Do I have an aggressive form that is fast growing.

A surgeon (especially one dealing with an "easy" patient (low PSA, Low Gleason of 6) will rub his hands with glee because he knows that from his point of view he can do a good job. The long term after affects for you aren't really his concern once he's done his job. Cynical attitude perhaps but that's how I see it.

The same with the oncologist. All consultants will (probably - though not always) push their own treatments at you and it is down to you to get as much information as possible before you opt for any treatment.

We can offer advice and support but we cannot make those decisions for you.

Please ask about the aggressiveness and get your full facts first (and tell us what your latest PSA was)

All the best.

You've some to the right place for help and support

Sandra

*****

Edited by member 31 Aug 2017 at 11:23  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 31 Aug 2017 at 15:12

I think Sandra is right and the December 2016 audit shows the UK are still over treating some Gleason 6 cases which may never cause any problems as it is not aggressive.

Taking a radical solution needs a lot of research and thought as the side effects on erectile function and continence are so major.

My husband was offered Active Surveillance for his Gleason 6 so I would certainly be asking why this hasn't been offered.

I wouldn't make a rush decision with. G6 diagnosis - doing nothing should be given real consideration.

Good luck

Clare

User
Posted 31 Aug 2017 at 17:47

Robin, there is a school of thought that a Gleason 6 rating after biopsy indicates abnormalities that are not yet cancer at all. Millions of men have this level of abnormality without being aware of any problem and die normally in blissful ignorance of the condition. Read up about it, especially the Active Surveillance approach, satisfy yourself that this will probably make no difference to your life at all, learn to be relaxed about it and get on with your life. Panic won't help you one little bit.

As you get more information from scans etc, post it in your biography here and we can all be more helpful. You certainly have loads of time to decide on treatment options. Take that time and don't allow the medics to rush you. I doubt if they would these days but remember it is your body, you are in charge of your complaint and treatment, the NHS people are there to advise you and implement your decisions.

Good Luck and stay positive for your own sake and for those who love you.

AC

User
Posted 31 Aug 2017 at 18:02

My OH is the same around the same age as you, klick on my bio and you will see his journey, Gleason score was 6 and he stayed on AS for a year

User
Posted 31 Aug 2017 at 19:36

Hi

 

I fully understand your concerns.

Please do not rush though.   Click on my 'bio' and others.  You will see the different paths we are following.

Hopefully Friday goes well,  are you able to post PSA value(s) as this can help.   

There are numerous options.

Did you have an mpMRI scan ?  - ie have you been told size of lesion(s) ? and position within prostate ?

So much to take in, I appreciate

All the very best

Gordon

 

User
Posted 31 Aug 2017 at 21:16

I know exactly how you feel, I've been through this twice (NHL in 1996 and PC in 2016). The first thing I can tell you is (and believe me) that the deep sickening feeling in the pit of your stomach will subside and you will quickly rationalise things and come to terms with what is. You will do that by focusing on the positives and in your case you have LOTS of positives to focus on, not least because your numbers are very low. The next thing I would add is don't panic, PC is a slow moving cancer and you don't need to make rush decisions. Finally, in making choices/decisions the two significant 'side effects' of treatment are incontinence and erectile disfunction (ED) and both of those can be avoided/minimised/reduced by treatment choices - tell them that you want those functions and start from there.

User
Posted 02 Sep 2017 at 01:54

I have been reading this today. For anyone diagnosed with a low risk Gleason 6 I think it's worth a read

https://www.amazon.co.uk/Invasion-Prostate-Snatchers-Essential-Managing/dp/1590515153/ref=sr_1_1?ie=UTF8&qid=1504313637&sr=8-1&keywords=Invasion+of+the+prostate+snatchers

Regards

Clare

User
Posted 02 Sep 2017 at 19:36

It is important not to lump all G6s together. Robin is T2 with bilateral tumours which were visible on the scan; his MDT has far more information than the rest of us and there are presumably good reasons for them recommending radical treatment. It may be that Robin's cancer, viewed within the cores, is towards the outer edge of the gland whereas low risk G6 tumours are more likely to be in the central zone. Nor do we know how many cores or what % of each were cancerous.

Robin, how did the consultation go?

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

User
Posted 02 Sep 2017 at 20:28

I agree that a small G6 is a different beast to a large and/ or bilateral one. a was bilateral T2c and the tumour was large on one side.

All our consultants have agreed that the use of the MPMRI scanner has made the "can be seen on a scan' position in need of a revisit so sometimes apples are being compared with oranges.

Lynn I am much more sceptical about the whole rely on the MDT approach and think the individual needs to take time and get fully informed. Plus the over treatment of G6 in the UK is a documented fact .

Just my opinion of course - no medical training here!

Thanks

Clare

User
Posted 02 Sep 2017 at 22:33

I doubt there will ever be the stats but it would be good to see how many men went against the advice of the MDT and instead listened to a group of individuals who can only relate their own experiences. I'd put a decent bet on it that the outcomes would not be as positive as those who listened and took the clinical advice.
Bri

User
Posted 02 Sep 2017 at 23:27

But the facts about over treatment are well documented.

https://prostatecanceruk.org/about-us/news-and-views/2016/12/national-prostate-cancer-audit-results-most-men-happy-with-curative-treatment-but-overtreatment-still-a-problem

Just something all need to be aware of.

 
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