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Active Surveillance or Not

User
Posted 02 Oct 2018 at 14:14

I have just been diagnosed with PCa at 54 years of age, and feel highly sensitised to the subject after having lost 2 uncles to PCa and my Father having had RP in 2009.

My gleason score is 3+4 from 2 out of 12 cores taken during TRUS biopsy, and my latest PSA 4.9.

I have been told this is contained, and that AS is one of the options.  However, because they also said it was borderline I also have a raft of other treatment options to choose from.

The odd thing is the 3 cores taken from the suspect area from the MRI showed nothing, and the 2 cores that came back positive weren't from the suspect area.

Now I have to work out what to do next.

User
Posted 03 Oct 2018 at 07:33

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member


Interestingly I now eat anything since my Vege wife ******* off and have never felt happier!!

 

Sorry francij, I know that is a terrible situation but it made me splurt my tea :-/ 

 

Great situation now though Lyn!!  Having mutually enjoyable sex and a sausage sandwich in bed at weekends - that never happened before!!

User
Posted 03 Oct 2018 at 09:34

The fact that Mac has already been offered active surveillance by his clinicians on the flimsy evidence of a TRUS biopsy, shows they have some confidence in watch and wait.

If I were in my early fifties, faced with potentially the end of erections, ejaculations, orgasms, impotence, permanent incontinence and penis shrinkage I would put off any treatment as long as possible.

I have only “suffered“ four of the above, but have been told I am cured! ๐Ÿ˜‰ ๐Ÿคž 

Edited by member 03 Oct 2018 at 13:11  | Reason: Not specified

User
Posted 02 Oct 2018 at 18:08
There seem to be no benefits to AS. You're a young man, so it's not as if you can "wait out" the cancer. The longer you leave it, the further it will spread, and the lower the probability of a curative treatment. I'd get rid of it now if I were in your position. AS simply postpones the inevitable and reduces the chance of the optimal outcome.

Chris

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User
Posted 02 Oct 2018 at 15:30
I think the fact you have some Gleason 4 AND family history means you need to do something.

User
Posted 02 Oct 2018 at 15:46

You say latest PSA 4.9, was the MRI and biopsy done because PSA is rising?

If PSA is rising at a significant rate with your family history I would guess it is time to consider getting treatment.

 

Regards

Alan

 

Edited by member 02 Oct 2018 at 15:47  | Reason: typo

User
Posted 02 Oct 2018 at 16:47

Hi,  I had a similar set of details to you, except my gleason was 8, my options were surgery or Radiotherapy, like you there is a family history, I chose surgery, I am 5 weeks on from LRP and doing ok, hopefully back to work next week, if it helps and LRP is available in your area it was a very easy operation, hour and 3/4, and home the next day, I have nearly regained continence and feeling pretty good, and to be honest very glad I do not have the cancer still in there. Obviously I have some time to go yet but my surgeons told me it was a very good outcome and the histology backed them up. Blood tests still to come but I will deal with them as and when they happen.

Hope this helps you in some way?

 

User
Posted 02 Oct 2018 at 18:08
There seem to be no benefits to AS. You're a young man, so it's not as if you can "wait out" the cancer. The longer you leave it, the further it will spread, and the lower the probability of a curative treatment. I'd get rid of it now if I were in your position. AS simply postpones the inevitable and reduces the chance of the optimal outcome.

Chris

User
Posted 02 Oct 2018 at 18:12

I am not sure that family history is relevant here - 70% of men in their 70s have some prostate cancer so just about every man has a family history of some sort. It would be more significant if any of the men in the family had been diagnosed young though.

If you were my brother or friend, what would sway me towards treatment is the element of 4 in your Gleason score - in some areas, AS wouldn't be offered to a man with G7.

Edited by member 02 Oct 2018 at 21:01  | Reason: Not specified

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

User
Posted 02 Oct 2018 at 20:50

It isn't a theory ndav - it was a big European post mortem research project. 60% of men in their 60s, 70% of men in their 70s and 80% of men in their 80s had some prostate cancer regardless of cause of death.

Only a tiny proportion of prostate cancers are thought to be genetic, often those that are diagnosed young or with unusual features. Rather more are likely to be environmental; the uncles and dad may all have grown up in the same area breathing the same air, eating the same food cooked in the same way in the same pans, they possibly drank the same water from the same old water pipes. 

Edited by member 02 Oct 2018 at 21:05  | Reason: Not specified

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

User
Posted 02 Oct 2018 at 21:05

Hi,    I have been on Active Surveillance for 4 years now, I am also 54, my father died of PCa and my brother was dia when he was 55 his had spread out of the prostate so has had radiotherapy and hormone treatment , he is now 60. Don’t rule out Active Surveillance as an option, but listen to all the advice and make your own decision.  It is hard on Active Surveillance mentally and I am finding more difficult as I near my brothers diagnosed age.  I wish you well and just go with the decision that you feel is right for you.  Good luck

User
Posted 02 Oct 2018 at 23:02

I was told family history is significant if PC killed a relative "young" and quickly. Eg my Dad was diagnosed at 65 and was dead 3 years later despite curative intent RT and Zoladex.

I guess genetic testing would be the way to to see if familial history is significant or not.

Regarding environmental factors my dad was a big meat eater and grew up in the city, I was a vegetarian from a young age and grew up in the country - we both got prostate cancer.

Interestingly I now eat anything since my Vege wife ****** off and have never felt happier!!

Edited by moderator 02 Oct 2018 at 23:05  | Reason: Not specified

User
Posted 02 Oct 2018 at 23:07

Originally Posted by: Online Community Member


Interestingly I now eat anything since my Vege wife ******* off and have never felt happier!!

 

Sorry francij, I know that is a terrible situation but it made me splurt my tea :-/ 

Edited by moderator 02 Oct 2018 at 23:09  | Reason: Not specified

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

User
Posted 03 Oct 2018 at 05:56
My friend is in his early 70s and he is Gleason 3+4=7 and has been on active surveillance for some years (must ask him exactly how long). He has seen the finest consultants money can buy, and two advised surgery, two advised active surveillance, and one radiotherapy.

He even visited the prostate clinic in Offenbach Germany, where they are famous for the Nano-Knife procedure. He decided on AS, and he now has quarterly PSA tests, annual MRIs and an annual consultation with his favourite specialist. He is doing great on it, but AS with G3+4=7 is a gamble, as is life!

If I were you, I would ask for a template biopsy to give you a more accurate picture of the state of your tumour, and then, armed with the result, check with your doctors to see if AS is appropriate for the time being, and follow a similar regime to my friendโ€™s above.

Best of luck.

Cheers, John.

User
Posted 03 Oct 2018 at 07:28

Originally Posted by: Online Community Member
My friend is in his early 70s and he is Gleason 3+4=7 and has been on active surveillance for some years (must ask him exactly how long). He has seen the finest consultants money can buy, and two advised surgery, two advised active surveillance, and one radiotherapy.

He even visited the prostate clinic in Offenbach Germany, where they are famous for the Nano-Knife procedure. He decided on AS, and he now has quarterly PSA tests, annual MRIs and an annual consultation with his favourite specialist. He is doing great on it, but AS with G3+4=7 is a gamble, as is life!

If I were you, I would ask for a template biopsy to give you a more accurate picture of the state of your tumour, and then, armed with the result, check with your doctors to see if AS is appropriate for the time being, and follow a similar regime to my friend’s above.

Best of luck.

Cheers, John.

He is also in his early 70s big difference to early 50s in terms of AS

User
Posted 03 Oct 2018 at 07:33

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member


Interestingly I now eat anything since my Vege wife ******* off and have never felt happier!!

 

Sorry francij, I know that is a terrible situation but it made me splurt my tea :-/ 

 

Great situation now though Lyn!!  Having mutually enjoyable sex and a sausage sandwich in bed at weekends - that never happened before!!

User
Posted 03 Oct 2018 at 08:55

The great thing about AS is that it's always possible to change your mind when you get each PSA result. That's why it's called surveillance.

Radiotherapy and surgery is something you can never change.

For what it's worth, I had all options open to me, but chose RT to get it over and done with. Turned out well!

 

Edited by member 03 Oct 2018 at 09:34  | Reason: Not specified

User
Posted 03 Oct 2018 at 09:34

The fact that Mac has already been offered active surveillance by his clinicians on the flimsy evidence of a TRUS biopsy, shows they have some confidence in watch and wait.

If I were in my early fifties, faced with potentially the end of erections, ejaculations, orgasms, impotence, permanent incontinence and penis shrinkage I would put off any treatment as long as possible.

I have only “suffered“ four of the above, but have been told I am cured! ๐Ÿ˜‰ ๐Ÿคž 

Edited by member 03 Oct 2018 at 13:11  | Reason: Not specified

User
Posted 03 Oct 2018 at 10:40

I agree, Bollinge. It's very easy to think that AS is the "do nothing" option. It isn't.

Other than another 3 months of worrying (if we are the worrying kind), it's neither here nor their in the journey we set off on.

Act in haste, repent at leisure, perhaps

Edited by member 03 Oct 2018 at 10:45  | Reason: Not specified

User
Posted 03 Oct 2018 at 15:17

There is doubtless a considerable difference in the way we view risk , though in view of potential side effects very few men are likely to want to rush into radical treatment when it's side effects could be deferred by adopting AS for at least a short time. My approach in the circumstances of machine46 would be to have a PSA test and a template biopsy within 3 months. Doing this should show how close any significant cancer is to the outer area of the Prostate. If it is well contained, I would opt for AS. If it is close to the outside of the Prostate, I would prefer radical treatment. One does not wish to miss the opportunity of a good result if delay might well mean missing this. My Gleason at diagnosis was 3+4=7 but staging was T3A and the surgeon thought it unlikely he could remove all the cancer so that option was ruled out. I was therefore diagnosed too late but had I been diagnosed earlier and on AS there is a good chance that surgery could have removed everything if done earlier. Clearly the consultants differ in the case of machine 46 on the way they assess the risk in his particular case so leave it to him to decide how he sees it.

Edited by member 04 Oct 2018 at 02:14  | Reason: Not specified

Barry
User
Posted 03 Oct 2018 at 16:47
I had two TRUS biopsies.

The first showed ASAP cells and the second PCA.

I decided to act based on the latter.

Side effects but no regrets.

Iโ€™ve seen similar conversations on a US prostate cancer board I am on. The battle between action and inaction (either through informed choice or fear) is a difficult one. The thing is that if there is a suggestion of higher risk, it is surely better to take some action and fix as you go rather than take no action and be too late.

User
Posted 03 Oct 2018 at 17:13
AS is a good option for some men in some circumstances - it is essential that it is done properly though. My father in law opted for AS for a G7 but it went wrong, mainly because he was getting watchful waiting instead and we didn't understand the difference. So instead of the NICE recommended 3 monthly PSA test / annual DRE / annual MRI and additional biopsies if indicated, he only got the PSA test and DRE. Even when we pushed, scans were consistently refused because his PSA was falling rather than rising. PSA alone is inadequate as a measure of cancer activity.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Oct 2018 at 19:47
Not an easy decision at first. I found that the "answer" became clear though.

Diagnosed at 50 with a small volume of Gleason 6 and some family history (father diagnosed late with stage 4 and bone mets). This by MRI and template biopsy.

The diagnosing consultant advised RP but was happy enough to support me going through my own choice process so I saw surgeons and oncologists before making my decision.

None of them liked the idea of AS for me, primarily because of age they said, but also family history. I did challenge this on the grounds that I (being fully functional) had it all to loose. The response to this (from a surgeon, though not the one who ultimately did the op) was that I also had the most to gain with early action giving the best chance of the best result with regard to nerve sparing and minimising the (hopefully small) possibility of spread.

Likewise, RT was not favoured as being young was felt to increase the chance of late side effects. The exception to this was brachytherapy but that was ruled out in my case due to prostate size.

A history of prostate symptoms related to chronic inflammation and large size rather than PCa also influenced my decision as did my somewhat anxious nature which tends to the old surgical saw "the only good carcinoma is the one in the bucket".

At this point, approaching 4 months post op, and despite some untypical post op complications, I'm content with my decision. I'm fully continent, ED is controlled by drugs (nasty hangovers though) and improving and PSA more or less unmeasurable.

Hope this helps a little and I wish you well in your journey

Nick

User
Posted 04 Oct 2018 at 11:00

Thanks for the advice, and in particular the link to the story on yananow which I found very interesting.

User
Posted 04 Oct 2018 at 11:04

Hi yes I should put that into context.

PSA was 1.9 in 2014, 2.27 in 2015, 2.36 in 2016, 3.66 in 2017.

User
Posted 04 Oct 2018 at 11:08

Thanks Blighty, very encouraging to hear you are recovering well.

I am considering RP as this will get rid of the cancer, and I realise that AS is just getting to live with it, but at some point I will need to do something more, and the risk of it getting worse increases.

User
Posted 04 Oct 2018 at 11:27

Thanks Bollinge,

Spoke to my specialist yesterday who confirms what you have said.

Whilst on AS I can change my mind at any time.  I will get quarterly PSA tests, and yearly MRI and template biopsy.  So I should have a better picture if it is changing, and the yearly biopsy can confirm.

I am just wondering if there are any better scans that can be done to confirm the size of the tumour and its containment.

User
Posted 04 Oct 2018 at 11:33

Thanks Old Barry,

I am still considering both options, and appreciate you views which is where my head is now.

User
Posted 04 Oct 2018 at 11:55

Might want to check this out
http://prac.co/l/ya3hbrh6

 

It's a review of AS outcomes and risk for grade 1 and 2 candidates. (3+3 and 3+4 in old money)

User
Posted 04 Oct 2018 at 12:11

Hi Machine46,

I was diagnosed with Gleason 3+4 and PSA 2.19 in September 2016 at the Lister hospital in Stevenage at the age of 70.It was only picked up by my doctor while having a private medical to renew my HGV license when I reached 70 and it was the best £140 i ever spent.

I was only offered radical removal or Brachytherapy but only after asking about the Brachytherapy.I think i had 5 out of 20 samples positive and had the operation at Mount Vernon in September 2016.

The operation went very well and i have very little problem to date,PSA as of June 2018 is 0.39 and checkups stretched to six months.

Click my avatar for more information if you need it, but of course it's your decision what actions you take going forward.

Good luck John.

PS. we have no Prostate cancer in the family at all.

Edited by member 04 Oct 2018 at 12:14  | Reason: Not specified

User
Posted 04 Oct 2018 at 14:22

Originally Posted by: Online Community Member

Thanks Bollinge,

Spoke to my specialist yesterday who confirms what you have said.

I am just wondering if there are any better scans that can be done to confirm the size of the tumour and its containment.

Nice to have a Consultant concur with me as others on here sometimes do not ๐Ÿ˜‰.

There are supposedly more “accurate” scans around, such as Choline PET/PSMA scans, which you may be able to get on the NHS and would likely involve some travel to the centre with the machine, and a more advanced Gallium 68 scan which you probably wouldn’t get on the NHS. At the last count it was £2600 a pop. It uses a Gallium short half-life radioactive isotope which is particularly clingy to cancerous bits and they show up on the scanner. I think there are only two centres that do it in the UK.

So what did your consultant say about AS in your case? Did he advocate any course of action?

Whatever you choose, I wish you the best of luck.

Cheers, John

User
Posted 04 Oct 2018 at 16:11

I'm in a similar situation. Recently diagnosed (9/11/18), Gleason 6, low grade on three biopsy cores. I'm thinking AS but the Doctor says my PSA above 10 (11.6) makes me T2, so we need more tests. Currently 2.5 weeks into a one month wait for results on genomic testing to find out how aggressive the cancer is. Although, I has assumed AS would be the easiest option, I'm now concerned that it may just put cancer in my daily thoughts. I'm 56, so I'll need to deal with this at some point. I'm hoping to live to a ripe old age! Side effects are certainly a concern, given how long some of you have had to deal with them. 

Stay strong everyone! Hopefully we'll all get through this together.

Paul

Edited by member 04 Oct 2018 at 16:13  | Reason: Not specified

User
Posted 04 Oct 2018 at 16:21

Hi Paul,

Why don’t you start your own thread?

Have you had a target/template biopsy and an MRI scan?

Cheers, John.

User
Posted 04 Oct 2018 at 17:46

John,

Thanks, I just did.

Paul

User
Posted 08 Oct 2018 at 07:45

Thanks Nick,

i have made my decision, and RP is the choice.

 I currently suffer side effects from the alpha blockers that I take for an enlarged Prostate, surgery will remove the need for them. It could also be said that I have been living with the cancer for years which may have been the cause of the enlarged prostate since diagnosed in 2015.

My Gleason was 40% grade 4, so bordering on changing to 4+3. 

There is a fair chance the biopsy did not hit the worst cells, as described by so many people post op.

For me, I want the best chance of full removal of the cancer, and the smallest chance of recurrence or side effects.

Feeling positive :-)

 

User
Posted 08 Oct 2018 at 14:06

Nick,

Best of luck with your surgery. Sending good thoughts your way!

best,

Paul

User
Posted 08 Oct 2018 at 14:13

Good luck.  I wish you all the best for the future.

User
Posted 09 Oct 2018 at 08:24
Good luck, keep us informed as to your progress.
User
Posted 26 Oct 2018 at 15:10

Hi everyone,

well I have had the surgery 3 days ago, and I am now starting my recovery.

i ended up with a top surgical team, they removed the prostate without issues. The other good news is that there was no adhesion of the nerves, so sparing was carried out.

i had lots of difficulty after the surgery, but I did get discharged the following day.

Thanks to all for the advice and good wishes,

until later..

User
Posted 26 Oct 2018 at 17:14
Well done and good luck!

Look after yourself while you recover and don't forgett to treat yourself :)

User
Posted 26 Oct 2018 at 17:22

All the very best with your recovery and future outcomes.

Neil.

User
Posted 27 Oct 2018 at 00:41

Good luck with your recovery.

Ian

Edited by member 27 Oct 2018 at 00:42  | Reason: Not specified

User
Posted 04 Nov 2018 at 20:27

 Hope the recovery is going well ?

I find myself with a similar prognosis, and have to make the decision. Somewhat worried about the side effects of surgery.

Cheers 

Mark

User
Posted 04 Nov 2018 at 21:30

Hi Mark,

The recovery is going well now, I am walking, eating and don’t have much pain. I had really itchy skin from the anaesthetics, chills from the heparin, and hot flushes as my hormones balanced out. It is almost 2 weeks now and I almost forget my condition. The catheter is part of my life for 4 more days , then I can discover how much control I will have.

when making the choice you have to weigh up the benefits with the risks, it is a personal choice which can be informed by the medical team, but is ultimately your decision.  I am convinced I made the right choice for me, and will work hard to ensure the lasting effects are minimal.

Good luck with your journey.

User
Posted 05 Nov 2018 at 06:29

Although still early days, I have already had some erectile activity and feel everything, including pain.

i was reminded the other day, that my father choose RP and is still with us. Both my Uncles choose other treatment options and have both passed on.

Edited by member 05 Nov 2018 at 06:30  | Reason: Not specified

User
Posted 27 Nov 2018 at 17:46

Just got my pathology results.

The staging that was T1 Gleason 3+4 before surgery turns out to be T3 Gleason 4+3 after removal.

This just goes to show how much of a lottery it can be making a decision on treatment based on the inadequate testing, and varying advice from the various consultants.

I took charge, and assumed the worst. The surgery had clear margins, and now I just need to get the PSA tested in January. I consider myself lucky as this could have been much worse had I waited.

User
Posted 27 Nov 2018 at 18:05

Hi Mark,

Like you say, could have been much worse. Clear margins is a 'positive'  so i wish you all the best for the future.

Neil.

User
Posted 27 Nov 2018 at 18:30
I hope your recovery goes well and PSA is undetectable.
User
Posted 23 Dec 2018 at 18:53
PSA is now undetectable, just need to regain continence.
User
Posted 23 Dec 2018 at 23:55

That's good news. Wish you all the very best for the future. 

User
Posted 24 Dec 2018 at 02:45
A good and call on your part and yes it does show how indefinite the tools of pre-treatment assessment available to consultant's and opinion to patients can be.

Hope you make a good recovery.

Barry
User
Posted 24 Dec 2018 at 10:08

Originally Posted by: Online Community Member

Just got my pathology results.

The staging that was T1 Gleason 3+4 before surgery turns out to be T3 Gleason 4+3 after removal.

This just goes to show how much of a lottery it can be making a decision on treatment based on the inadequate testing, and varying advice from the various consultants.

 

That's what worries me about men who go for active surveillance. The tests are still not sufficiently accurate to show the exact status of the disease.

Merry Xmas and a Happy New Year to everyone.

Ann

 
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