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Which treatment to choose for young men with Gleason 3+3?

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User
Posted 07 Jan 2020 at 17:45

Hi everyone, happy new year and hope everyone has had a great holiday. 

Apologies for this long post and seeking advice, hubby has been diagnosed with gleason 3+3, MRI fusion targeted biopsy shows 3/3 targeted with 3+3, cores at 56%, 58% and 27% positive, plus another four cores of gleason 3+3 with 27%, 6%, 5% and 27%  all in the same quarter of the prostate. We have done both oncotype and prolaris which came back to low scores and concurring for Active Surveillance. 

He was diagnosed last year in his early 40s and has been on active surveillance for about 10months, with a fluctuating PSA between 4.3-5.58, latter being the latest figure. The psychological effect is taking a toll and feeling discomfort in the region, although not sure if it is purely psychological or disease progression? 

We have seen 3 different urologists, one recommending surgery, one saying either surgery or AS and another more leaning towards AS or hifu. As we enter the one year mark, we are getting more concerned and perplexed about what to do next. The most recent psa has risen from 4.5 to 5.58  and hasn’t given us much confidence, despite reading lots of advocacy for AS and saying gleason 6 not treatment worthy. (I do understand that this refers to pure gleason 6 and men over the age of 60. Hard to define whether pure G6 or not unless you take it out though!) 

Would like to ask how you make your decisions regarding AS/ surgery/ HIFU or Focal. 

If going down the surgery route, how do you choose which surgeon to go for? I have gathered a list of names, and have no idea whom to go with and whether we should opt for the new retzius sparing technique or not? Even in the retzius sparing department, I believe there are a few surgeons offering it and how do you make your decision? Does the surgeon’s age also come into play, in terms of hand tremor, a surgeon’s experience, if one is at one’s prime year etc? 

We have small children and obviously living is our absolute priority. The side effects of incontinence and impotence are definitely concerning though... 

Thanks very much to everyone who has taken your time to read this and any experience shared is very much appreciated! 

 

User
Posted 08 Jan 2020 at 00:01
Sorry, I disagree a little bit with my friends here. The % content in the cores was very high - G6 may often be a pussy cat that is best dealt with on AS but the assumption is that these will be very small clusters of cancer whereas if I have understood your post correctly, this is a significant tumour. Have you asked about the position of the cancer in each ore? Is it well into the centre or close to the edge?

Men diagnosed very young often have more determined and persistent cancers than those who are older, so action is going to be needed. On the other hand, AS has its benefits in terms of delaying treatment long enough to just have a bit of normality because undoubtedly, life changes forever post-treatment. But as you have found, AS doesn't really allow you to live as if it never happened.

Choosing less radical treatments may seem enticing; the offset is that they are often less successful than the robust treatment options. As barry says, HIFU has better results as a salvage treatment than as a radical treatment but can be repeated. One member here travelled to America for FLA in very similar circumstances to yours, but I think the cancer has recurred. We would have opted for brachy if it had been available but John was ruled out for being too young.

How do you find a surgeon? Meet a couple, ask them for their data, choose the one that you feel confident about. Consider things like if you go out of area, what impact will that have for aftercare? Keep in mind that the surgeon that many people say is wonderful is also the surgeon that someone says has ruined their life. You can only do your best - there is no space in the decision making for hindsight.

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

User
Posted 12 Jan 2020 at 11:09
Sorry Appletree, I don't take private messages. I don't like the facility and believe it is really important that questions and replies are posted on the open forum where errors, misunderstandings and misleading information can be picked up and challenged by the wider membership.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Feb 2020 at 09:19

Further to the above: I had my 8 week follow-up post RP yesterday. Good news is my PSA is now at zero. Pathology showed the tumour was 0.5mm from the edge of the prostate and clearly planning its next move! So, for me thats confirmation that the RP was the best course of action in my case. 

Had it not been for my father's diagnosis and being told to get check out as an over 40 offspring I suspect it would have been a long while yet before I got any symptoms and a very different scenario.

Edited by member 26 Feb 2020 at 09:23  | Reason: Not specified

User
Posted 07 Jan 2020 at 23:06

Hi Appletree, welcome to the forum, sorry you're here. 

It's not often a post sits unanswered for over five hours, but I think you've got us all flummoxed. It's such a hard decision and such a personal one. I guess none of us would dare try and make that decision for you. Like everyone else on this great forum I'll try and offer support, and some thoughts. 

I like to think that if I had figures like that I would choose AS. The psa and gleason I fully understand, the percent cancer I don't know; is that a lot or a little? I guess if it was a well target biopsy one would expect high percentages, but that is because they didn't bother targeting healthy areas, so maybe it's only a small percentage if you think of the whole prostate.

The young age! he has a lot of years ahead of him. AS is a lot easier if you are in your 60s, "I've nearly had my three score and ten" so I'm not going to go through the side effects of treatment and make the last few years of my life a misery just to live a few more miserable years. When you're in your 40s you've got a lot of fun years ahead and they aren't going to become miserable for a long time, but maybe after treatment they won't be as fun as they could be (quality of life or QOL as it is often referred to). (side note: I know life expectancy is now mid 80s, but the principle is the same). 

Worrying that the gleason may be higher than the biopsy revealed is counter productive. Yes I know sometimes after RP the surgeon says "you're lucky I got that it was worse than we thought, aren't I clever"; they don't often say "sorry I ruined your sex life, turns out it wasn't that bad after all". So if the biopsy says g3+3 I'd take it at face value. 

The genetic tests suggest AS. Well OK but they are probably assuming you're 60, and the QOL calculations may be different if you're younger, as you have already concluded. 

Living with AS might be hard, it depends on his attitude to risk. If he likes dangerous sports AS is probably the best way to go. If he prefers a cup of horlicks before bed AS might be too stressful. (note in this paragraph I'm talking about him not you). PCa is a problem for both people in a relationship, the side effects will effect both of you, but they will effect him much more. 

I didn't have to make these choices my figures suggest I needed treatment. I didn't really investigate the treatment options much, I just thought "these doctors probably know best, I'll leave it to them". I'm not usually that deferential to the medical profession, but as you have seen it is so hard to see the wood for the trees. 

I get the impression most of the medics, tests etc. suggest AS but the psychological problems are what are pushing you toward treatment. Maybe the solution is counselling to ease the anxiety. Never tried it myself, yet another option to consider. 

I doubt anything I have said has helped, just more for you to mull over. 

Dave

User
Posted 07 Jan 2020 at 23:13

As you have learnt there is a difference in the approach Professionals suggest and I am sure that would be the way patients see it too, as you could make a case for and against each way of tackling the situation. Most, but by no means all patients feel they chose the best option for them but no treatment is 100% certain to be curative even where this looked highly likely. Also, by having radical treatment there is a risk a man may suffer serious short or long term side effects that could be life changing and in some cases this could be unnecessary because the cancer might never develop to the point that it ever needed treatment. So you could say that surgery would provide the best chance of iradicating the cancer but with the risk of earliest severe side effects. AS would defer side effects and there would be a good chance of having radical treatment while it would still be effective if you were carefully monitored, although slightly more risky than if  surgery or a form of RT was not delayed. Not all men can live with the knowledge that they have untreated cancer even where the grade is low.

As regards HIFU, it may be that it's success as a primary treatment is not quite as good in terms of eradicating PCa as surgery or radiation but the side effects are less severe and it can in need be repeated or the patient be subsequently treated by surgery or radiation. If HIFU is used as a primary treatment best results would be on a single small tumour, so hubby's suitability needs to be very carefully evaluated for this option I think.

A recent study I read (and must post when I find it again) showed when compared to Radiation, Surgery is more successful than RT although some trials show RT comprising Brachytherapy seeds plus IMRT Radiation has given better results in dealing with PCa so conflicting analysis there but the latter increasing the risk of initiating further cancer many years on, perhaps the reason why younger men are more often steered towards surgery. RT can be given after surgery if needed but very few surgeons will remove a previously radiated Prostate because it means working on a very damaged one.  

Really, however others might proceed in the circumstances, hubby should not be influenced by what a few men might do in his circumstances but on the way he sees it. I would study the 'Tool Kit' available from the Publication Department of this Charity if he has not already obtained it. A talk with the Specialist Nurses might also be helpful although they will not have seen his scans and full biopsy findings so they are limited in giving personal advice. Prostates differ and if hubby does elect for surgery one method may be considered preferable to others and it follows that an experience of the surgeon and his/her results is an important consideration.

Edited by member 29 Mar 2020 at 12:21  | Reason: Not specified

Barry
User
Posted 08 Jan 2020 at 12:52

Thanks so much , Andrew, for this very balanced and informative reply. Definitely addressed a lot of my questions. 

Really appreciate the advice regarding teamwork, hubby has sort been in denial for the past year and is kind of coming around now since we recently saw a local urologist who was adamant that “Statements like HIFU works and Gleason 6 doesn’t kill are absolutely jokes.” He further went on saying that “pca cells are circulating all around you and these cells keep shedding everyday. Pca def kills even if it’s a Gleason 6.” 

As you can imagine, this really shook us to the core, especially when PSA was first flagged up as elevated in a medical routine check and he kept saying that it would just be prostatitis and advised against the biopsy. It was us who decided to go elsewhere for the biopsy since PSA remained between 4-5 and got Gleason 6 diagnosis. 

His 180 degree turn is definitely shocking and not to mention the lack of reassurance with all the talk about cells circulating, seeding, death etc... 

 

We did see one urologist from the Royal Marsden who sort of said that we had woken up the sleeping dog. With all these extreme views and those in the middle, we are certainly very confused! 


Thanks again for your kind reply, really helpful. 

 

 

User
Posted 09 Jan 2020 at 02:49

The problem is that accurate diagnosis and potential for progression of PCa is not certain . PCa is an evolving disease and there are a lot of ifs and buts and evaluation of risk can differ. There is a view that Gleason 3+3 doesn't even count as cancer but there is no absolute assurance that some of the cells are not grade 4 and yes the amount and position of PCa can make a difference and in a young man there is more time for cancer to evolve and mutate. Due to uncertainties and differing medical opinions the difficulty of men choosing between options is compounded. Best chance of beating cancer from what we are told in this particular case starts (and hopefully ends) with surgery but with biggest chance of early side effects some of which could be for life have to be taken on aboard. Consultants can even have differing view on some general approaches. For instance, more recently it has become more the case that more men should be treated shortly after surgery with RT perhaps as a belt and braces approach. However, the latest trial seems to indicate there is no advantage in doing this rather than wait for the need for RT to be given as the requirement becomes necessary. https://www.sciencedaily.com/releases/2019/09/190927095316.htm

 

Barry
User
Posted 12 Jan 2020 at 09:41
When I first read your post I assumed you were in the US and thus you should ignore any pressure to go down the radical treatment route and make your own mind up.

The fact you are in the UK and you are receiving consultations like that is frankly rather shocking. So first thing to do is find a Urologist and probably an Oncologist too who will give you research based advice without the flowery language. My view of consultants who do that is that they are more interested in boosting their own ego while scaring the s*** out the patient.

I was 54 when my PSA started going up significantly, it had been down around 2.8 since my early 40s then over the space of a year jumped to 4.8. I had a targeted biopsy and it discovered 3+3 but my tumour was also large and near the edge and was graded a T2B. I was told I was a candidate for AS but I was likely to require intervention at some point due to my youngish age and the tumour size.

I opted for surgery, it nearly killed me (3 weeks in hospital) , prompted my wife of 34 years to leave, and I still have a persistent low PSA.

So would I do the same again? Well probably but this time I would do my research first, I would certainly heed the advice of both urologists who both said study the options and outcomes and make an informed decision.

So the fact you are on here is good, but your husband really needs to be engaged too.

Interestingly my stage was upgraded to T3A but my Gleason stayed the same (despite having a second opinion on the pathology) so you can have a G6 that will leave the prostate.

User
Posted 12 Jan 2020 at 15:17

I Agree with francij, words like: “pca cells are circulating all around you and these cells keep shedding everyday. Pca def kills even if it’s a Gleason 6.” are not helpful. My first thoughts were "is he on commission? ". 

If hubby were T4 those statements would be factually correct. But though hubby is at risk, all you can say is that there is a chance somewhere between 0-100% that the cancer is spreading. If he is T2 he is much nearer the 0% end. 

As I said in my earlier post I think people's attitude to risk affects the choices they make more than the facts of the disease.

Dave

User
Posted 12 Jan 2020 at 16:46

Dear Appletree

You have received lots of useful replies from many members and at the end of the day it will be your/hubby's choice. I

I have copied my response to another similar question few months ago. This may give some insight inot my thought process,  but not going to argue this is best for you guys.

I am not 40, but was in prime health when diagnosed.

 

I am 52 and had 3+3 in biopsy and PSA 10.

 

I chose surgery and the cancer was upgraded to 3+4. 

 

The point I am making is the degree of cancer I am told gets generally upgraded following surgical histopathology as was in my case.

 

3+4 becomes intermediate risk and more risk of needing Radiotherapy etc over time.

 

There is also the fact that the surgeon can strive to preserve your nerves needing for erection if surgery at an early. Delay in surgery can also lead to something called positive surgical margin. (which has happened in my case and awaiting the first PSA test anxiously).

 

Becoming infertile and losing erection function (in early cancer if nerve sparing may not be a long term problem) are small prices to pay to have your cancer treated without radiotherapy and harmone treatment etc, in my view and hence I agreed for surgery.

 

Hope this helps you in making your choice.

 

Thala

User
Posted 13 Jan 2020 at 21:13
Haven't properly read all of the replies so sorry if this is a repeat. My husband is (maybe was!) 3+4 and went down the RP route. We used the https://www.baus.org.uk website to look at surgeons complications rates. I totally get that these can be skewed by anything but it helped us to have something to use. Also maybe useful to know that on the NHS you are able to choose your surgeon should you wish (& many flit between NHS and private). If you are considering RP, I would discuss with the surgeon whether nerve sparing looked likely given to position of the tumor (as far as they can see) and whether a super-pubic catheter was a likely option (lowers IC risk). Make them aware of any previous surgeries in the lower abdomen area before asking such questions. Best of luck.
User
Posted 14 Jan 2020 at 22:04

Dear Appletree

I have just read your post and the replies.

I am older than you, 59, PSA was monitored over a number of years and reached 6.8 when I had template biopsy which confirmed Gleason score of 3+4.

Like you I was offered AS and all treatment options.  After months of consideration I opted for RARP with top surgeon in London.

I was worried about SE but my experience proved very positive and I enjoyed a very swift and full recovery with very limited SE. I had no incontinence, limited penile shortening and no ED.

Today I had the result of my 6 week post op PSA reading today; 0.02 and confirmation of negative margin in the tissue removed with the prostate.  Next PSA blood test in 4 months when I hope the reading will be undetected.

I have no regret about choosing the RP treatment route.  

If there is anything you want to know about my own research or experience please do not hesitate to ask.

Best wishes

Grant60

User
Posted 17 Jan 2020 at 00:20

Hi Appletree,

Sorry I could not reply to your message but the system would not let me do so hence my response here in the public forum:

I can well understand that you are both getting twitchy remaining on AS and seemingly nothing (intervention wise) is happening. My most recent blood tests have shown that my PSA is continuing to rise. My consultant has said not to panic, that they will review again in April but a further MRI and targeted biopsy is likely. He made that point that usually a targeted biopsy results in an upgrade of the diagnosis and this being the case some intervention would become more pressing. In my case we would look to HIFU. RP would only be considered as an absolute last resort. So I am just trying to keep my nerve and "not panic".

I wish you both well.

Kind regards,

Simon

 

User
Posted 23 Feb 2020 at 10:54

Hi Applegate,

I saw your direct message but the website won't let me reply direct (spam risk apparently - if only that was all we had to worry about eh?)

My fist biopsy was in August 2017, aged 45, (Gleason 3+3. Max length 3mm. Cores 3 out of 24. MRI pirad 2) following which I was placed on Active Surveillance, which seemed to be Guy's Hospital policy for a Gleason 6.

In Sept 2019 I had a second biopsy (Gleason 3+4. Max length 5mm. Cores 8 of 22) and at Gleason 7 was told by the Consultant 'this is only going in one direction, it is time to consider treatment.' Given my age, he recommended the RP. 

I was equally daunted by the side effects of incontinence and ED, so before deciding spoke to a mate who is senior consultant, another private senior consultant he recommended (in case there was a treatment option the NHS didn't offer), the senior oncologist and the Senior nurse specialist. They all separately confirmed the same recommended course of action, so my wife and I figured it was the way to go. The plus side was hopefully being cancer free afterwards, so not having the worrying of the cancer coming back 2 years later. Also, with other treatments, if unsuccessful, it was better to decide on the RP now rather than deciding on the same course of action but when 15 years older.  I had the surgery on Jan 2nd 2020.

Recovery-wise, I was home the next afternoon. The catheter is the most unpleasant aspect of the procedure, its uncomfortable (Ibuprofen is your best friend but strangely wasn't mentioned at discharge) but when it comes out you will feel 80% recovered instantly (and the removal was something I was terrified of, but was a breeze). The abdominal pain isn't too bad either, sore but not like a broken limb (my only other personal frame of reference).

The incontinence was much less of an issue than I feared. As I understood it, the removal of the prostate took with it the main valve that controls continence. So, I thought I would be squeezing my pelvic floor muscle every waking moment otherwise it would be an uncontrolled waterfall wherever I went. In actual fact by 6 weeks I was no longer wearing pads (I've since learnt in certain settings its reassuring to have one in, mainly when I first went out and had a few beers or got carried away digging in the garden - but thats more about understanding stress continence and remembering that 4 pints is still bad for you!)

ED. They kept both nerves so it should end happily, but so far nothing to report! I understand why the medical professionals give broad outcome stats like "8 out of 10, within 2 years" but I would have liked more specific guidelines like "under 50, both nerves, you should expect x to happen by 6 months", just so I had a target to aim for and the reassurance not to worry too quickly. 

I've no experience of fatigue, so can't comment on that I'm afraid. 

Hope that helps? Feel free to DM me again with any questions - I've emailed tech support to try and get the spam setting overruled! Best of luck with it.

Caveat: this is just my personal experience and opinion, it may be very different for anyone else.

 

Edited by moderator 23 Feb 2020 at 13:28  | Reason: Doctors name removed by moderator

User
Posted 01 Mar 2020 at 16:36

Appletree:   sorry your husband has joined our club.   I also found deciding on AS or treatment very difficult.

My story is in my profile, as well as a conversation I started.   I was monitored for 5+ years due to high and increasing PSA before Gleason 6 was found in April 2019.   i had started checking forums before that, as in back of mind I expected that eIentually they would fine "cancer".    I found that US based forums, you get many more strong opinions that Gleason 6 "is not cancer", without any consideration of other factors such as PSA level and trend, volume detected, etc..   I found this forum more balanced.

I did not find this video until after I had made my decision on next steps,  but while it is six years old,  it is has a lot of great information on AS.   In the full video, he starts talking about AS at about the 21 minute mark,  and goes into more detail on what should be done in AS at about the 26:30 mark.    And repeat biopsies (which are necessary as part of AS) do have negative side effects.

https://pccntoronto.ca/2014/06/06/video-dr-tony-finelli-20-years-in-prostate-cancer-care-where-we-were-and-where-were-headed/

Talks also about HIFU (this is an old video), and robotic surgery in rest of video.

The doctor in the video is my uro-oncologist and my surgeon.   He is now chief of Urology at the largest hospital group in Toronto,  and the Genitourinary site lead at the top cancer research center in Canada 

 

   

 

 

Edited by member 01 Mar 2020 at 16:42  | Reason: Not specified

User
Posted 29 Mar 2020 at 09:03

Hi AT

Your inbox full again :-)

From the best of my knowledgeable to use the private route and get it fully funded you would have needed a policy in place before symptoms were diagnosed. 

I don’t have contacts as just use standard switchboard and get routed through to the cancer team for claims. All very simple and they have been fantastic. 

TG

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User
Posted 07 Jan 2020 at 23:06

Hi Appletree, welcome to the forum, sorry you're here. 

It's not often a post sits unanswered for over five hours, but I think you've got us all flummoxed. It's such a hard decision and such a personal one. I guess none of us would dare try and make that decision for you. Like everyone else on this great forum I'll try and offer support, and some thoughts. 

I like to think that if I had figures like that I would choose AS. The psa and gleason I fully understand, the percent cancer I don't know; is that a lot or a little? I guess if it was a well target biopsy one would expect high percentages, but that is because they didn't bother targeting healthy areas, so maybe it's only a small percentage if you think of the whole prostate.

The young age! he has a lot of years ahead of him. AS is a lot easier if you are in your 60s, "I've nearly had my three score and ten" so I'm not going to go through the side effects of treatment and make the last few years of my life a misery just to live a few more miserable years. When you're in your 40s you've got a lot of fun years ahead and they aren't going to become miserable for a long time, but maybe after treatment they won't be as fun as they could be (quality of life or QOL as it is often referred to). (side note: I know life expectancy is now mid 80s, but the principle is the same). 

Worrying that the gleason may be higher than the biopsy revealed is counter productive. Yes I know sometimes after RP the surgeon says "you're lucky I got that it was worse than we thought, aren't I clever"; they don't often say "sorry I ruined your sex life, turns out it wasn't that bad after all". So if the biopsy says g3+3 I'd take it at face value. 

The genetic tests suggest AS. Well OK but they are probably assuming you're 60, and the QOL calculations may be different if you're younger, as you have already concluded. 

Living with AS might be hard, it depends on his attitude to risk. If he likes dangerous sports AS is probably the best way to go. If he prefers a cup of horlicks before bed AS might be too stressful. (note in this paragraph I'm talking about him not you). PCa is a problem for both people in a relationship, the side effects will effect both of you, but they will effect him much more. 

I didn't have to make these choices my figures suggest I needed treatment. I didn't really investigate the treatment options much, I just thought "these doctors probably know best, I'll leave it to them". I'm not usually that deferential to the medical profession, but as you have seen it is so hard to see the wood for the trees. 

I get the impression most of the medics, tests etc. suggest AS but the psychological problems are what are pushing you toward treatment. Maybe the solution is counselling to ease the anxiety. Never tried it myself, yet another option to consider. 

I doubt anything I have said has helped, just more for you to mull over. 

Dave

User
Posted 07 Jan 2020 at 23:13

As you have learnt there is a difference in the approach Professionals suggest and I am sure that would be the way patients see it too, as you could make a case for and against each way of tackling the situation. Most, but by no means all patients feel they chose the best option for them but no treatment is 100% certain to be curative even where this looked highly likely. Also, by having radical treatment there is a risk a man may suffer serious short or long term side effects that could be life changing and in some cases this could be unnecessary because the cancer might never develop to the point that it ever needed treatment. So you could say that surgery would provide the best chance of iradicating the cancer but with the risk of earliest severe side effects. AS would defer side effects and there would be a good chance of having radical treatment while it would still be effective if you were carefully monitored, although slightly more risky than if  surgery or a form of RT was not delayed. Not all men can live with the knowledge that they have untreated cancer even where the grade is low.

As regards HIFU, it may be that it's success as a primary treatment is not quite as good in terms of eradicating PCa as surgery or radiation but the side effects are less severe and it can in need be repeated or the patient be subsequently treated by surgery or radiation. If HIFU is used as a primary treatment best results would be on a single small tumour, so hubby's suitability needs to be very carefully evaluated for this option I think.

A recent study I read (and must post when I find it again) showed when compared to Radiation, Surgery is more successful than RT although some trials show RT comprising Brachytherapy seeds plus IMRT Radiation has given better results in dealing with PCa so conflicting analysis there but the latter increasing the risk of initiating further cancer many years on, perhaps the reason why younger men are more often steered towards surgery. RT can be given after surgery if needed but very few surgeons will remove a previously radiated Prostate because it means working on a very damaged one.  

Really, however others might proceed in the circumstances, hubby should not be influenced by what a few men might do in his circumstances but on the way he sees it. I would study the 'Tool Kit' available from the Publication Department of this Charity if he has not already obtained it. A talk with the Specialist Nurses might also be helpful although they will not have seen his scans and full biopsy findings so they are limited in giving personal advice. Prostates differ and if hubby does elect for surgery one method may be considered preferable to others and it follows that an experience of the surgeon and his/her results is an important consideration.

Edited by member 29 Mar 2020 at 12:21  | Reason: Not specified

Barry
User
Posted 08 Jan 2020 at 00:01
Sorry, I disagree a little bit with my friends here. The % content in the cores was very high - G6 may often be a pussy cat that is best dealt with on AS but the assumption is that these will be very small clusters of cancer whereas if I have understood your post correctly, this is a significant tumour. Have you asked about the position of the cancer in each ore? Is it well into the centre or close to the edge?

Men diagnosed very young often have more determined and persistent cancers than those who are older, so action is going to be needed. On the other hand, AS has its benefits in terms of delaying treatment long enough to just have a bit of normality because undoubtedly, life changes forever post-treatment. But as you have found, AS doesn't really allow you to live as if it never happened.

Choosing less radical treatments may seem enticing; the offset is that they are often less successful than the robust treatment options. As barry says, HIFU has better results as a salvage treatment than as a radical treatment but can be repeated. One member here travelled to America for FLA in very similar circumstances to yours, but I think the cancer has recurred. We would have opted for brachy if it had been available but John was ruled out for being too young.

How do you find a surgeon? Meet a couple, ask them for their data, choose the one that you feel confident about. Consider things like if you go out of area, what impact will that have for aftercare? Keep in mind that the surgeon that many people say is wonderful is also the surgeon that someone says has ruined their life. You can only do your best - there is no space in the decision making for hindsight.

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

User
Posted 08 Jan 2020 at 12:52

Thanks so much , Andrew, for this very balanced and informative reply. Definitely addressed a lot of my questions. 

Really appreciate the advice regarding teamwork, hubby has sort been in denial for the past year and is kind of coming around now since we recently saw a local urologist who was adamant that “Statements like HIFU works and Gleason 6 doesn’t kill are absolutely jokes.” He further went on saying that “pca cells are circulating all around you and these cells keep shedding everyday. Pca def kills even if it’s a Gleason 6.” 

As you can imagine, this really shook us to the core, especially when PSA was first flagged up as elevated in a medical routine check and he kept saying that it would just be prostatitis and advised against the biopsy. It was us who decided to go elsewhere for the biopsy since PSA remained between 4-5 and got Gleason 6 diagnosis. 

His 180 degree turn is definitely shocking and not to mention the lack of reassurance with all the talk about cells circulating, seeding, death etc... 

 

We did see one urologist from the Royal Marsden who sort of said that we had woken up the sleeping dog. With all these extreme views and those in the middle, we are certainly very confused! 


Thanks again for your kind reply, really helpful. 

 

 

User
Posted 09 Jan 2020 at 02:49

The problem is that accurate diagnosis and potential for progression of PCa is not certain . PCa is an evolving disease and there are a lot of ifs and buts and evaluation of risk can differ. There is a view that Gleason 3+3 doesn't even count as cancer but there is no absolute assurance that some of the cells are not grade 4 and yes the amount and position of PCa can make a difference and in a young man there is more time for cancer to evolve and mutate. Due to uncertainties and differing medical opinions the difficulty of men choosing between options is compounded. Best chance of beating cancer from what we are told in this particular case starts (and hopefully ends) with surgery but with biggest chance of early side effects some of which could be for life have to be taken on aboard. Consultants can even have differing view on some general approaches. For instance, more recently it has become more the case that more men should be treated shortly after surgery with RT perhaps as a belt and braces approach. However, the latest trial seems to indicate there is no advantage in doing this rather than wait for the need for RT to be given as the requirement becomes necessary. https://www.sciencedaily.com/releases/2019/09/190927095316.htm

 

Barry
User
Posted 12 Jan 2020 at 08:42

Thanks lots Lyn, I was trying to Pm you but seems like your inbox is full and won’t receive any new msgs unless new space is freed up. Wonder if I may contact you privately? No worries at all if that doesn’t suit. Thanks lots for your very informative reply! 

User
Posted 12 Jan 2020 at 08:46

Thanks very much for for this Dave, all is very helpful and the coping techniques as well. 

User
Posted 12 Jan 2020 at 09:41
When I first read your post I assumed you were in the US and thus you should ignore any pressure to go down the radical treatment route and make your own mind up.

The fact you are in the UK and you are receiving consultations like that is frankly rather shocking. So first thing to do is find a Urologist and probably an Oncologist too who will give you research based advice without the flowery language. My view of consultants who do that is that they are more interested in boosting their own ego while scaring the s*** out the patient.

I was 54 when my PSA started going up significantly, it had been down around 2.8 since my early 40s then over the space of a year jumped to 4.8. I had a targeted biopsy and it discovered 3+3 but my tumour was also large and near the edge and was graded a T2B. I was told I was a candidate for AS but I was likely to require intervention at some point due to my youngish age and the tumour size.

I opted for surgery, it nearly killed me (3 weeks in hospital) , prompted my wife of 34 years to leave, and I still have a persistent low PSA.

So would I do the same again? Well probably but this time I would do my research first, I would certainly heed the advice of both urologists who both said study the options and outcomes and make an informed decision.

So the fact you are on here is good, but your husband really needs to be engaged too.

Interestingly my stage was upgraded to T3A but my Gleason stayed the same (despite having a second opinion on the pathology) so you can have a G6 that will leave the prostate.

User
Posted 12 Jan 2020 at 11:09
Sorry Appletree, I don't take private messages. I don't like the facility and believe it is really important that questions and replies are posted on the open forum where errors, misunderstandings and misleading information can be picked up and challenged by the wider membership.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jan 2020 at 14:20

Thanks very much, Barry! Really appreciate your insight and advice. 

User
Posted 12 Jan 2020 at 15:17

I Agree with francij, words like: “pca cells are circulating all around you and these cells keep shedding everyday. Pca def kills even if it’s a Gleason 6.” are not helpful. My first thoughts were "is he on commission? ". 

If hubby were T4 those statements would be factually correct. But though hubby is at risk, all you can say is that there is a chance somewhere between 0-100% that the cancer is spreading. If he is T2 he is much nearer the 0% end. 

As I said in my earlier post I think people's attitude to risk affects the choices they make more than the facts of the disease.

Dave

User
Posted 12 Jan 2020 at 16:46

Dear Appletree

You have received lots of useful replies from many members and at the end of the day it will be your/hubby's choice. I

I have copied my response to another similar question few months ago. This may give some insight inot my thought process,  but not going to argue this is best for you guys.

I am not 40, but was in prime health when diagnosed.

 

I am 52 and had 3+3 in biopsy and PSA 10.

 

I chose surgery and the cancer was upgraded to 3+4. 

 

The point I am making is the degree of cancer I am told gets generally upgraded following surgical histopathology as was in my case.

 

3+4 becomes intermediate risk and more risk of needing Radiotherapy etc over time.

 

There is also the fact that the surgeon can strive to preserve your nerves needing for erection if surgery at an early. Delay in surgery can also lead to something called positive surgical margin. (which has happened in my case and awaiting the first PSA test anxiously).

 

Becoming infertile and losing erection function (in early cancer if nerve sparing may not be a long term problem) are small prices to pay to have your cancer treated without radiotherapy and harmone treatment etc, in my view and hence I agreed for surgery.

 

Hope this helps you in making your choice.

 

Thala

User
Posted 13 Jan 2020 at 21:13
Haven't properly read all of the replies so sorry if this is a repeat. My husband is (maybe was!) 3+4 and went down the RP route. We used the https://www.baus.org.uk website to look at surgeons complications rates. I totally get that these can be skewed by anything but it helped us to have something to use. Also maybe useful to know that on the NHS you are able to choose your surgeon should you wish (& many flit between NHS and private). If you are considering RP, I would discuss with the surgeon whether nerve sparing looked likely given to position of the tumor (as far as they can see) and whether a super-pubic catheter was a likely option (lowers IC risk). Make them aware of any previous surgeries in the lower abdomen area before asking such questions. Best of luck.
User
Posted 14 Jan 2020 at 22:04

Dear Appletree

I have just read your post and the replies.

I am older than you, 59, PSA was monitored over a number of years and reached 6.8 when I had template biopsy which confirmed Gleason score of 3+4.

Like you I was offered AS and all treatment options.  After months of consideration I opted for RARP with top surgeon in London.

I was worried about SE but my experience proved very positive and I enjoyed a very swift and full recovery with very limited SE. I had no incontinence, limited penile shortening and no ED.

Today I had the result of my 6 week post op PSA reading today; 0.02 and confirmation of negative margin in the tissue removed with the prostate.  Next PSA blood test in 4 months when I hope the reading will be undetected.

I have no regret about choosing the RP treatment route.  

If there is anything you want to know about my own research or experience please do not hesitate to ask.

Best wishes

Grant60

User
Posted 17 Jan 2020 at 00:20

Hi Appletree,

Sorry I could not reply to your message but the system would not let me do so hence my response here in the public forum:

I can well understand that you are both getting twitchy remaining on AS and seemingly nothing (intervention wise) is happening. My most recent blood tests have shown that my PSA is continuing to rise. My consultant has said not to panic, that they will review again in April but a further MRI and targeted biopsy is likely. He made that point that usually a targeted biopsy results in an upgrade of the diagnosis and this being the case some intervention would become more pressing. In my case we would look to HIFU. RP would only be considered as an absolute last resort. So I am just trying to keep my nerve and "not panic".

I wish you both well.

Kind regards,

Simon

 

User
Posted 18 Jan 2020 at 13:17

Thanks lots for this Simon, best of luck with the upcoming tests! 

User
Posted 23 Jan 2020 at 17:36

Hi - not easy and I think with the myriad of treatments out there it maybe comes down to the personality and 'makeup' of the person!

I was Gleason 3+3 T2a with a low PSA (0.7) when finally diagnosed (after 5 months). I was having some issues with discomfort in 'that area' which prompted me to keep looking for the reason. Once I knew, and that surgery had a very good chance or eradicating, then it was a no-brainer given I suffer from anxiety!

My consultant said that I was a good candidate for active surveillance but I already knew that it would eat away at me (the regular tests etc) and I decided just to whip it out! I still maintain it was the best decision for me despite the fact we are all subject to regular PSA tests (so the test anxiety is ever-present!). I have a friend who took an entirely different route (brachytherapy) and seems to be ok on that too. I just wanted it removed! It has been a bit of a journey with getting continence back (luckily quickly for me) and ED is a bit of a nightmare just now for some reason...but still, as I am anxious, it was the best decision for me to go with surgery!

If your OH is getting anxious too, then going for surgery or another treatment earlier rather than later may have no impact on the actual outcome as opposed to active surveillance, but I think the fact that 'something is being done proactively' can ease the mind!

Take care,

Mark

User
Posted 23 Feb 2020 at 10:54

Hi Applegate,

I saw your direct message but the website won't let me reply direct (spam risk apparently - if only that was all we had to worry about eh?)

My fist biopsy was in August 2017, aged 45, (Gleason 3+3. Max length 3mm. Cores 3 out of 24. MRI pirad 2) following which I was placed on Active Surveillance, which seemed to be Guy's Hospital policy for a Gleason 6.

In Sept 2019 I had a second biopsy (Gleason 3+4. Max length 5mm. Cores 8 of 22) and at Gleason 7 was told by the Consultant 'this is only going in one direction, it is time to consider treatment.' Given my age, he recommended the RP. 

I was equally daunted by the side effects of incontinence and ED, so before deciding spoke to a mate who is senior consultant, another private senior consultant he recommended (in case there was a treatment option the NHS didn't offer), the senior oncologist and the Senior nurse specialist. They all separately confirmed the same recommended course of action, so my wife and I figured it was the way to go. The plus side was hopefully being cancer free afterwards, so not having the worrying of the cancer coming back 2 years later. Also, with other treatments, if unsuccessful, it was better to decide on the RP now rather than deciding on the same course of action but when 15 years older.  I had the surgery on Jan 2nd 2020.

Recovery-wise, I was home the next afternoon. The catheter is the most unpleasant aspect of the procedure, its uncomfortable (Ibuprofen is your best friend but strangely wasn't mentioned at discharge) but when it comes out you will feel 80% recovered instantly (and the removal was something I was terrified of, but was a breeze). The abdominal pain isn't too bad either, sore but not like a broken limb (my only other personal frame of reference).

The incontinence was much less of an issue than I feared. As I understood it, the removal of the prostate took with it the main valve that controls continence. So, I thought I would be squeezing my pelvic floor muscle every waking moment otherwise it would be an uncontrolled waterfall wherever I went. In actual fact by 6 weeks I was no longer wearing pads (I've since learnt in certain settings its reassuring to have one in, mainly when I first went out and had a few beers or got carried away digging in the garden - but thats more about understanding stress continence and remembering that 4 pints is still bad for you!)

ED. They kept both nerves so it should end happily, but so far nothing to report! I understand why the medical professionals give broad outcome stats like "8 out of 10, within 2 years" but I would have liked more specific guidelines like "under 50, both nerves, you should expect x to happen by 6 months", just so I had a target to aim for and the reassurance not to worry too quickly. 

I've no experience of fatigue, so can't comment on that I'm afraid. 

Hope that helps? Feel free to DM me again with any questions - I've emailed tech support to try and get the spam setting overruled! Best of luck with it.

Caveat: this is just my personal experience and opinion, it may be very different for anyone else.

 

Edited by moderator 23 Feb 2020 at 13:28  | Reason: Doctors name removed by moderator

User
Posted 23 Feb 2020 at 11:39
John was 50 and it took 3 years to see any real progress in erectile function (ie with the help of tablets but without a pump or injections)

Best to edit your post - it is against site rules to name medics.

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

User
Posted 23 Feb 2020 at 15:20
Thanks LynEyre - relative newbie so didn't realise the rules! Looks like its been moderated already.
User
Posted 24 Feb 2020 at 16:20

Thanks lots and I just tried to DM you again and see if it works this time? Cheers

User
Posted 26 Feb 2020 at 07:38

Hi there, not sure if you have got my last DM and maybe spam is blocking again? 

I will try to DM my email address to you and see if that works if it’s ok with you? 

thanks lots! 

User
Posted 26 Feb 2020 at 09:19

Further to the above: I had my 8 week follow-up post RP yesterday. Good news is my PSA is now at zero. Pathology showed the tumour was 0.5mm from the edge of the prostate and clearly planning its next move! So, for me thats confirmation that the RP was the best course of action in my case. 

Had it not been for my father's diagnosis and being told to get check out as an over 40 offspring I suspect it would have been a long while yet before I got any symptoms and a very different scenario.

Edited by member 26 Feb 2020 at 09:23  | Reason: Not specified

User
Posted 01 Mar 2020 at 16:36

Appletree:   sorry your husband has joined our club.   I also found deciding on AS or treatment very difficult.

My story is in my profile, as well as a conversation I started.   I was monitored for 5+ years due to high and increasing PSA before Gleason 6 was found in April 2019.   i had started checking forums before that, as in back of mind I expected that eIentually they would fine "cancer".    I found that US based forums, you get many more strong opinions that Gleason 6 "is not cancer", without any consideration of other factors such as PSA level and trend, volume detected, etc..   I found this forum more balanced.

I did not find this video until after I had made my decision on next steps,  but while it is six years old,  it is has a lot of great information on AS.   In the full video, he starts talking about AS at about the 21 minute mark,  and goes into more detail on what should be done in AS at about the 26:30 mark.    And repeat biopsies (which are necessary as part of AS) do have negative side effects.

https://pccntoronto.ca/2014/06/06/video-dr-tony-finelli-20-years-in-prostate-cancer-care-where-we-were-and-where-were-headed/

Talks also about HIFU (this is an old video), and robotic surgery in rest of video.

The doctor in the video is my uro-oncologist and my surgeon.   He is now chief of Urology at the largest hospital group in Toronto,  and the Genitourinary site lead at the top cancer research center in Canada 

 

   

 

 

Edited by member 01 Mar 2020 at 16:42  | Reason: Not specified

User
Posted 06 Mar 2020 at 14:29

Thanks lots for your kind reply, very helpful indeed! Wish you a smooth recovery! 

User
Posted 29 Mar 2020 at 09:03

Hi AT

Your inbox full again :-)

From the best of my knowledgeable to use the private route and get it fully funded you would have needed a policy in place before symptoms were diagnosed. 

I don’t have contacts as just use standard switchboard and get routed through to the cancer team for claims. All very simple and they have been fantastic. 

TG

User
Posted 14 Apr 2020 at 14:22

Hi TG, thanks lots for this, sorry just saw this as I have been checking my inbox for your reply and didn’t realise that it was full. It says 1% only? So strange. 

Since we don’t live in the UK at the moment, this whole insurance business is quite complicated and expensive...

 

Anyway, thanks lots again! 

 
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