Diagnosis understanding

User

Posted 18 May 2017 at 22:32

I am 62 years old and just received the news I have Adenocarcinoma with Gleason score of 3+3. Estimated prostate volume 48cms3. MRI was a T1c. Out of 14 biopsies 4 out of 6 were positive on the right hand side. The tumour is 7mm in length. I have been told this is early stage so no need to rush into any immediate decisions but the hospital seem to be suggesting Active Surveillance.

The thing is, I hear the words about it not being an immediate problem, its non-aggressive and read the info that has been provided but I'm really trying to come to terms with how bad this is and how quickly it is likely to progress.

The thoughts buzzing round my head and my main concerns are:-

-has all the cancer been found, how certain is it that there isn’t cancer on the side of the prostate that can’t be felt or seen or outside biopsy scope

-how sure can we be that it hasn’t already spread or could spread in between surveillance activities if I go down that route.

-how quickly will the tumour grow and therefore symptoms be felt that necessitate surgery. I was trying to understand what slow growing means in prostate cancer terms for someone of my age (62) and when it is likely to become a problem. I know it is hard to be specific but in general for someone that is diagnosed with early slow growing cancer how long is it before treatment is likely to be necessary? I have read this is normally between 3 and 6 years.

-I have come across the term latent/indolent tumour. Given that I have been told that the cancer is slow growing could this be the type of tumour that has been found?

I understand it is difficult/not possible to be specific about my situation but I'd welcome any insights that folks can provide me with to address my concerns.

Many thanks

User

Posted 19 May 2017 at 00:36

Some men stay on active surveillance for the rest of their life and never have any problems. Others choose AS for a year or so while they research all the options.

The point I suppose is that AS is a proactive choice rather than just doing nothing - your consultant and medical team know how to monitor you effectively so that if anything changes it is picked up quickly. Your cancer would be unlikely to run rampant around your body in 3 months. Plus during the early AS days you will quickly get a sense of whether you have the personality to cope with it.

I don't think you should assume that you would have surgery at some point. While on AS you can take time to meet an oncologist to discuss brachytherapy (if you meet the criteria) radiotherapy and other possibilities if you wish.

What was your PSA?

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

User

Posted 19 May 2017 at 08:18

Lyne is quite right regarding having time to think the whole thing through without rushing into surgery.

My husband was on AS for a year before he decided what to do. In that time his PSA crept up a bit so a decision on treatment was made and he was adamant that he did not want surgery so opted for low dose seed Brachytherapy.

He hopes that at his age (now 76) it will be the only treatment he will ever need.

You still have "youth" on your side. Listen carefully to all that is advised but don't rush off to do any of it. You have to live with the possible consequences of whichever route you take to be certain what you want and what you are prepared to risk in respect of long term side effects.

John was lucky with his seed Brachytherapy.

All very straight forward for him but for others on here not so much, but then I think they are the unlucky ones and maybe for them, whatever treatment path they took might have been fraught with problems

You can download the Toolkit from this site which may help you when looking at treatment choices and their possible side effects.

Ask on here any questions you might have, rather than doing a general Google search which isn't always helpful

Best Wishes

Sandra

*****

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

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User

Posted 19 May 2017 at 00:36

Some men stay on active surveillance for the rest of their life and never have any problems. Others choose AS for a year or so while they research all the options.

What was your PSA?

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

User

Posted 19 May 2017 at 08:18

Lyne is quite right regarding having time to think the whole thing through without rushing into surgery.

He hopes that at his age (now 76) it will be the only treatment he will ever need.

John was lucky with his seed Brachytherapy.

You can download the Toolkit from this site which may help you when looking at treatment choices and their possible side effects.

Ask on here any questions you might have, rather than doing a general Google search which isn't always helpful

Best Wishes

Sandra

*****

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

User

Posted 19 May 2017 at 10:04

Thanks for your prompt reply Lynne and Johsan. I have had two PSA tests. The first was 7+ the second one 3.76 both pre biopsy. I have read various threads on this community where people have opted for removal and post op analysis has upgraded the cancer. So this makes you think/worried that even though I have been given the gleason 6 score is it actually worst especially given the 'random' nature of the biopsy. a 7mm tumour of whatever type seems quite large to me.

I do agree with the point on 'time to think', as it seems like a minefield of options and terminology, where you are potentially opting for the least worst approach for your situation. New techniques also seem to be being developed as well. I have read through the toolkit atleast 3 times which has helped me prepared for my hospital appointment next week.

Thanks

Rick

User

Posted 19 May 2017 at 10:08

Hi,

I was in a similar situation in Oct last year. Only difference was my Gleason was 3+4. I think this ( with PSA 5 and t1c) is sometimes considered for AS but I was never offered that.
I had surgical removal last week on the 8th May. I'm happy to say waterworks are improving daily and I was only in hospital two days. The surgeon was able to spare the nerves on one side so there may still be some erectile functionality.
It's also my understanding that early stage, localised PCa is unlikely to grow or spread for a couple of years but for myself I was happy that the treatment was done quite quickly.
If there is anything I can help with please just ask.

Good luck with everything.

Gordon.

User

Posted 19 May 2017 at 10:24

Thanks Andrew that's helpful.

I think my thoughts at the moment at to go down the AS route and train myself to put this (these concerns you have answered) at the back of my mind rather than thinking about it every minute of the day as I am now.

Do you know whether most people get a second opinion or just take the original diagnosis as fact?

User

Posted 19 May 2017 at 10:30

Gordon, thanks for your reply and I'm glad your operation seems to have gone well. There is a bit of me that says go down the AS route at the moment but another that says if it is just 2 years until action needs to be taken then perhaps I'd rather just get on with it. The problem is, right now, as with the other feedback on this thread that is an unknown.

User

Posted 19 May 2017 at 12:09

Hi
I've been on AS for 4.5 years so far. The important thing is to have confidence in your consultant and their team, you must feel certain that any progression will be detected soon enough to allow the correct action to be taken.
I also make sure that I have some control of the process, I arrange my own PSA test at GPs and always make sure hospital appointments are correct. Hospital appointment bureaus seem to consider AS monitoring to be a routine check up which can be postponed. I currently have 3 monthly PSA tests which is more than in the guidelines, but I would not be comfortable with a longer interval.
I am lucky to have an excellent consultant who explains everything in plain understandable terms. Also I have 2 specialist nurses who are always available to answer any queries and discuss at length any issues.
On diagnosis I was offered surgery or RT as well as AS. I have been told that at any time I can choose to end AS and undergo some radical treatment, on several occasions I have thought about this but decided that for me AS is still my best option.

Alan

User

Posted 19 May 2017 at 13:06

Yeah I know what you mean. There's so much to try and get you head around. My own team in the NHS in Glasgow are always extremely helpful and knowledgeable and I'm sure that is the case where you are too. I've no doubt they will keep you right if it's safe to wait or if something needs attention.

All the best ,

Gordon.

User

Posted 19 May 2017 at 14:28

My OH has been on AS for a year, his PSA has slowly crept up from 6.6 to 10.2, gleason 6+6 his recent MRI scan had shown that the there was a bulge in the prostrate and is booked in for Robotic surgery on the 31st May. We have managed to get on with our lives and not think about it too much, wish you the best what ever you decide.

User

Posted 19 May 2017 at 17:39

"Do you know whether most people get a second opinion or just take the original diagnosis as fact?"

You could ask about this at your next appointment. At many hospitals these days, the results of all the tests are reviewed by a multidisciplinary team who will come to a shared agreement about a) your diagnosis and b) which options are available to you. So it would be useful for you to know whether the recommendation of AS was made by a number of people from different expertise or simply the opinion of your urologist. If your uro has acted alone then it would be very sensible of you to ask for an appointment with an oncologist before you make any decisions.

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

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