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Double whammy

User
Posted 12 Sep 2018 at 11:55

Good news of a sort; Lightening can strike twice in the same place but it isn’t necessarily fatal:

 

Earlier this year my partner was diagnosed with Prostate Cancer.  It was moderately aggressive on the Gibson Scale, he required treatment immediately and his options were few.  In fact he was given two options: radiotherapy and hormone treatment or a radical robotic prostatectomy.  We chose the latter, he had surgery immediately and he has been given a very clean bill of health with the usual checks going forward.  His treatment at Guy’s Hospital was exemplary.  About 18 months ago I had my first routine PSA (Prostate Specific Antigen) test.  The reading was 4.5 but my G.P. gave me a digital (that is the gloved finger, not a high tech probe) examination, whereupon he confirmed that the gland was smooth and only slightly enlarged; in his opinion it was probably just inflammation and we should just keep an eye on things for the time being....

 

A few weeks ago I had another PSA test with a score of 5. My G.P. suggested the same course of action but, in the light of Chris' recent experience, I told him that I wished to be referred to Guy's Hospital at London Bridge.  Within days everything was in place and appointments were scheduled.  I was given an MRI scan at my first appointment and a potential date for biopsies was scheduled for six days later, on the understanding that if the MRI results were clear the biopsies would be cancelled.  However, within three days, I received confirmation that the biopsies would need to be harvested.  I was awake throughout the entire procedure and it was totally painless.  An appointment was made for a few days later, where I received the results.  Twenty-four biopsies were taken, out of which seven contained Cancer cells of 3+3 on the Gibson scale ranging from .5mm to 3mm in size. Whilst the grade of the cancer is cause for optimism, the volume of positive biopsies gave them some small concern.

 

This all presented me with a great deal more choice than my partner had been given at the time of his diagnosis.  Almost every option was made available to me: Direct Beam Radio Therapy, Radio Therapy with Hormones,  Brachytherapy (radioactive seeds), Brachytherapy with Hormones,  Radical Robotic Prostatectomy or Active Surveillance.  I was armed with all the information I needed on the statistics and side effects of all the treatments.  The upshot is that they are all effective.  Apart from the potential side effects of Radiotherapy the main issue for me is that, with this particular therapy, if the Cancer should recur later in life (remember I am still only a baby of 62years) surgery is more difficult.  The same applies to Brachytherapy.  However, if they could have confirmed that my willy would glow in the dark after the irradiation thereby lighting my way to the loo in the middle of the night or, more importantly just helping me find the darn thing, I might have considered it as an option for treatment.  However, my initial reaction was and to some extent still is that I want the cancer gone/removed.  At the time I was erring towards Prostatectomy and I felt that my doctors were guiding me in that direction.  I asked for treatment by the same wonderful surgeon who operated on Chris and he entered into the  conversation at this stage.  He would have agreed to carrying out the surgery but he looked at my results and asked me to think again.  He advised that if this was his prostate with these results, he would be opting for Active Surveillance adding that it could remain as it is for twenty years without change.  Active Surveillance means having  PSA tests every six months with MRI scans every one and a half years and biopsies if necessary.  I took his advice based on his experience and his conviction that it would be the correct thing to do.

 

I'm still nervous.  I wake up knowing that I've got Cancer but at least I have more than a little perspective after my consultations with the experts.  I am assured that if I wish to have the Brachytherapy or a Prostatectomy sooner rather than later, they will not stand in my way.  So for now, all my options are open and I am in expert hands.  In fact, I feel so good that I removed all the plaster from the walls of our second bedroom, prior to redecoration.  We are both looking to the future and enjoying ourselves.

 

I posted this on Facebook because I have a great many friends who are either men over 50yrs or who have male partners over 50yrs.  I want them all, unless they have already done so, to insist that their G.Ps. prescribe a PSA test ASAP, with the relevant followup action as required.  Lightening struck twice in our home.  We are both ok and we are going to continue to be ok but it might have been a different story. 

So, here’s my problem:  I’m trying to be optimistic and retain perspective and humour but I’m scared.  I’m not psychologically designed for active surveillance.  I wake every morning knowing I have cancer and, even with the very positive outcome my partner has thus far experienced,  this unwelcome visitor in our lives is casting a cloud.  I’d be grateful for any perspective on active surveillance.

Edited by member 12 Sep 2018 at 15:52  | Reason: Not specified

User
Posted 12 Sep 2018 at 12:44
I think the most useful way to think of AS is to acknowledge that it is the least permanent of all the treatment options - as soon as anything changes, you can revert to the "get it out of me / radiate it to a frazzle" options. The essential thing is to make sure AS is done correctly - as you say, PSA three monthly, annual DRE, regular mpMRI (your consultant says 18 monthly but I thought NICE recommended annual - I could be wrong or they could have changed their stance) and biopsies if thought necessary.

The only reason AS went wrong in our case was because the hospital refused to do the follow up scans.

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

User
Posted 12 Sep 2018 at 12:11

AS seems like an excellent choice for Gleason 3+3 PCa to me, Sam. Why put yourself through life-changing treatment if you don't need to? You can still have the treatment if the cancer starts to become more active, but your surgeon's absolutely right in saying that that could be 20 years down the line - or never. One thing that's for sure is that 3+3 PCa is not going to kill you!

Your feelings are absolutely normal. It took me a good two months to come to terms with my diagnosis, but now I'm completely comfortable with my choice (I have 3+4 PCa and am going for HT+RT) and am enjoying life again. It may seem difficult to believe, but one day soon you'll wake up in the morning and not think about cancer. It becomes the new "normal".

I wish you and your partner every success for the future,

Chris

Edited by member 12 Sep 2018 at 12:12  | Reason: Not specified

User
Posted 12 Sep 2018 at 14:12

I have a friend in his early seventies with Gleason 3+4=7, who has been on active surveillance for several years, and is still, as I put it, inelegantly as ever, ‘getting away with it’. He has no symptoms apart from raised PSA and no treatment, and no problems. What’s not to like?

He does however, have three-monthly PSA tests, annual mpMRI scans and consultations with his urologist. He pays privately. His consultant is more than happy for him to keep calm and carry on with AS.

If you opt for AS, as from what you have said I think you should, make sure you have the tests my mate has and as recommended by Matron above, and don’t let the NHS short-change you by stretching out the intervals any longer to ‘save money’ which could cost it far more in the future.

There is a school of thought amongst some urologists, as reported recently here by a fellow correspondent, that Gleason 3+3=6 should not even be referred to as ‘cancer’, and given some other less alarmist nomenclature. My suggestion of ‘a little bit of difficulty down below’ is unlikely to be adopted by the medical profession!

All options are available during active surveillance, but I don’t think that is still an option if you choose any of the other treatments you mentioned at the start.

Best of luck anyway.

Cheers, John

Edited by member 12 Sep 2018 at 14:29  | Reason: Not specified

User
Posted 12 Sep 2018 at 15:50
With a very similar diagnosis ( low risk 3+3 but high volume) my husband opted for a focal laser ablation (FLA) in the USA.

I mention only because people don’t always know about it.

He wanted to avoid an over treatment so if this hadn’t been an option would have gone with AS.

I am pleased to see an increase in surgeons recommending AS for G6 diagnosis. Ours recommended immediate removal but my husband is pleased to still have his prostate and has avoided the big risks of radical treatments, which are all still available should things change.

Good luck

Clare

User
Posted 12 Sep 2018 at 17:06
Until you have a T3a 3+3 like me and others on this site and you nearly miss your treatment window because of AS!

Also, the only "genetically" tracked prostate cancer patient to have been tested from diagnosis to death (19 years later) it was proven that the cancer that killed him was originally a G3 that "evolved".

That is part of the issue with PC it is often multifocal, genetically a bit random and hence you see patients with G5s living for 15+ years and patients with G3 ultimately dying of PC.

AS "plays the statistics game" which is great until you find out that you could have achieved a durable remission if you had treated it 12 months earlier.

So what's the point of this ramble? If you have a diagnosis of PC stay informed and make sure you research your options. Provided you do all that you will probably get the best outcome for yourself.

As for me would I have done anything different? Yes!! I would have had the op a year earlier and ignored the advice of medical professionals who it turned out knew less than I did!!

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User
Posted 12 Sep 2018 at 12:11

AS seems like an excellent choice for Gleason 3+3 PCa to me, Sam. Why put yourself through life-changing treatment if you don't need to? You can still have the treatment if the cancer starts to become more active, but your surgeon's absolutely right in saying that that could be 20 years down the line - or never. One thing that's for sure is that 3+3 PCa is not going to kill you!

Your feelings are absolutely normal. It took me a good two months to come to terms with my diagnosis, but now I'm completely comfortable with my choice (I have 3+4 PCa and am going for HT+RT) and am enjoying life again. It may seem difficult to believe, but one day soon you'll wake up in the morning and not think about cancer. It becomes the new "normal".

I wish you and your partner every success for the future,

Chris

Edited by member 12 Sep 2018 at 12:12  | Reason: Not specified

User
Posted 12 Sep 2018 at 12:25

Thank you Chris for your very kind reply.

Best....S

User
Posted 12 Sep 2018 at 12:44
I think the most useful way to think of AS is to acknowledge that it is the least permanent of all the treatment options - as soon as anything changes, you can revert to the "get it out of me / radiate it to a frazzle" options. The essential thing is to make sure AS is done correctly - as you say, PSA three monthly, annual DRE, regular mpMRI (your consultant says 18 monthly but I thought NICE recommended annual - I could be wrong or they could have changed their stance) and biopsies if thought necessary.

The only reason AS went wrong in our case was because the hospital refused to do the follow up scans.

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

User
Posted 12 Sep 2018 at 14:12

I have a friend in his early seventies with Gleason 3+4=7, who has been on active surveillance for several years, and is still, as I put it, inelegantly as ever, ‘getting away with it’. He has no symptoms apart from raised PSA and no treatment, and no problems. What’s not to like?

He does however, have three-monthly PSA tests, annual mpMRI scans and consultations with his urologist. He pays privately. His consultant is more than happy for him to keep calm and carry on with AS.

If you opt for AS, as from what you have said I think you should, make sure you have the tests my mate has and as recommended by Matron above, and don’t let the NHS short-change you by stretching out the intervals any longer to ‘save money’ which could cost it far more in the future.

There is a school of thought amongst some urologists, as reported recently here by a fellow correspondent, that Gleason 3+3=6 should not even be referred to as ‘cancer’, and given some other less alarmist nomenclature. My suggestion of ‘a little bit of difficulty down below’ is unlikely to be adopted by the medical profession!

All options are available during active surveillance, but I don’t think that is still an option if you choose any of the other treatments you mentioned at the start.

Best of luck anyway.

Cheers, John

Edited by member 12 Sep 2018 at 14:29  | Reason: Not specified

User
Posted 12 Sep 2018 at 15:50
With a very similar diagnosis ( low risk 3+3 but high volume) my husband opted for a focal laser ablation (FLA) in the USA.

I mention only because people don’t always know about it.

He wanted to avoid an over treatment so if this hadn’t been an option would have gone with AS.

I am pleased to see an increase in surgeons recommending AS for G6 diagnosis. Ours recommended immediate removal but my husband is pleased to still have his prostate and has avoided the big risks of radical treatments, which are all still available should things change.

Good luck

Clare

User
Posted 12 Sep 2018 at 17:06
Until you have a T3a 3+3 like me and others on this site and you nearly miss your treatment window because of AS!

Also, the only "genetically" tracked prostate cancer patient to have been tested from diagnosis to death (19 years later) it was proven that the cancer that killed him was originally a G3 that "evolved".

That is part of the issue with PC it is often multifocal, genetically a bit random and hence you see patients with G5s living for 15+ years and patients with G3 ultimately dying of PC.

AS "plays the statistics game" which is great until you find out that you could have achieved a durable remission if you had treated it 12 months earlier.

So what's the point of this ramble? If you have a diagnosis of PC stay informed and make sure you research your options. Provided you do all that you will probably get the best outcome for yourself.

As for me would I have done anything different? Yes!! I would have had the op a year earlier and ignored the advice of medical professionals who it turned out knew less than I did!!

User
Posted 12 Sep 2018 at 17:30
So, Did you have a template biopsy to fully determine the extent of your cancer, and at what resolution was your MRI scan? 1.5T or 3T?

There are more advanced PET scans available, often not on the NHS, of which I think the most accurate costs £2600 a pop privately.

These factors are crucial for someone marginal like yourself to be fully informed so as to make the correct decision on the way forward.

Cheers, John

User
Posted 12 Sep 2018 at 17:38

Originally Posted by: Online Community Member

That is part of the issue with PC it is often multifocal, genetically a bit random and hence you see patients with G5s living for 15+ years and patients with G3 ultimately dying of PC.

AS "plays the statistics game" which is great until you find out that you could have achieved a durable remission if you had treated it 12 months earlier.

As for me would I have done anything different? Yes!! I would have had the op a year earlier and ignored the advice of medical professionals who it turned out knew less than I did!!

I don’t want to hijack this thread but will start a new one. Francij, I love you. Needless to say that I think these are the smartest statements I have seen. I just finished a very disappointing consultation today and challenged the consultant on a number of points. And tested a lot of what we often use as default understanding. Most of the good consultants know by the way that the stratification of prostate cancer by Gleason is dead as a prognostic indicator of aggressiveness. Structural stratification is no indicator of PCa aggressiveness. The reason we all think this is a lottery and use terms like “everyone’s PCa is different“ is precisely because those pussy cats were never pussycats in the first place.

Fresh

Edited by member 12 Sep 2018 at 17:39  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 12 Sep 2018 at 21:02
Some men just can't accept the thought of cancer within them, even if it is low risk and they want it removed with their Prostate or otherwise destroyed by RT or another method. This may give them some piece of mind knowing that it is very unlikely to develop but means that in the vast majority of cases they would be having treatment that was unnecessary, at least so early on and experience premature side effects. So comes down to the way a man sees it.

As has been said, when a man opts for AS it is most important that he is well monitored because with a 3+3 Gleason there are sometimes cancer cells of grade 4 that were not found or mutation makes these these more aggressive. Then again as shown here

by franci1 the unlikely sometimes happens.

In an interesting talk by a leading urologist, he stated that if you looked hard enough that there would be quite a strong chance of finding insignificant cancers in many men over 50. This is one of the reasons it has been decided in the UK and in many other countries not to routinely PSA test men as they become 50 years of age on the basis that many will go on to have treatment and suffer unnecessary harm. Of course, many men who have have diagnosis and treatment when the cancer is shown to have moved past an early stage are likely to think they should have had a PSA and earlier diagnosis earlier, so they could have decided earlier whether to be tested. But this would also put many men in the position of Sam.

Barry
User
Posted 12 Sep 2018 at 21:29

Thank you for contributing to the conversation.  I chose to follow up my recent PSA test because of my partner’s experience and because I was guaranteed a swift diagnosis.  My partner was left to wait eight weeks for biopsy results by local NHS before being put in the very capable hands of Guy’s.  By the time he got his biopsy results, we had convinced ourselves that he was clear.  It’s for that reason that I chose to have my entire investigation done by Guy’s Hospital.  Despite the feelings I currently have about the presence of the cancer, I am quite certain that I prefer to know.  It puts me in control; I just need to find a way to own the situation rather than have the situation own me.  Unfortunately my first AS seminar is not until November, which is my reason for opening the discussion here.  Thank you again.

User
Posted 12 Sep 2018 at 23:31

Francij could you share the references about genetically tracked prostate cancer patient please?

very informative thank you

User
Posted 12 Sep 2018 at 23:50

Originally Posted by: Online Community Member
So, Did you have a template biopsy to fully determine the extent of your cancer, and at what resolution was your MRI scan? 1.5T or 3T?

There are more advanced PET scans available, often not on the NHS, of which I think the most accurate costs £2600 a pop privately.

These factors are crucial for someone marginal like yourself to be fully informed so as to make the correct decision on the way forward.

Cheers, John

No template I had a raised PSA (3.2) at 52ish.  The GP called me in because he was concerned and did a "finger jobbie" and promptly said it felt alright re-test in 6 months.  1st mistake GPs aren't qualified to diagnose PC using their finger so don't bother letting a GP stick his finger where the sun don't shine!!

6 months later PSA 3.8, different GP and because I was now in "denial mode" I was happy to take his advice and wait another 6 months - WTF why?? Should have insisted on a referral there and then. 

6 months later PSA 4.2 different GP again, but when I ask her straight what would she do finally I get a referral.

So Urologists sees me and after a private 3TMRI and targeted TRUS I get the G3+3 T2B diagnosis. At this stage I was told all treatment options were open to me including AS. Interestingly the URO I saw didn't do operations but did deal with the results of RP's and RT in his NHS clinic so had no normal URO bias to surgery? When I asked him what he would do he said:

No to RT of any kind because I was to young

No to AS because of family history and the MRI showed how close to the edge my tumour was

Yes to surgery because it offered a durable remission and was unlikely to leave me with permanent side effects.

When I left him after he referred me to the URO who would operate I asked him if I could have done anything different? He said yes I should have seen him 12 months before! 

The rest is history post op pathology upgraded to T3A but still 3+3 so a template biopsy would not have changed anything. 

I have even questioned my final G score as it's so unusual to have a T3a 3+3 and was told all pathology is done twice to eliminate human error. So here I am 3 years on detectable but stable PSA do I regret not seeing a urologists 12 months prior? Damn right I do I might have kept that 1 nerve bundle and had a "less than" PSA now.

 

User
Posted 13 Sep 2018 at 00:22

Originally Posted by: Online Community Member

Francij could you share the references about genetically tracked prostate cancer patient please?

very informative thank you

Sorry I can't find it. It came from one of the US sites I read it about 2 years ago and it was a study of a single individual who agreed to be tracked via repeat biopsy through out his PC journey. 

All the tumours in his prostate were genetically profiled and this allowed the researchers at his death (19 years later) to identify which of the PC tumour cells killed him. It turned out that what killed him had stemmed from a G3 cell ( not the G4 and 5) that he also had.

User
Posted 14 Sep 2018 at 00:00

Thanks I will try to find it.

also did you have information on surgery after FLA? I thought I saw a comment but now can’t see it?

 

regards

User
Posted 14 Sep 2018 at 07:59

Originally Posted by: Online Community Member

Thanks I will try to find it.

also did you have information on surgery after FLA? I thought I saw a comment but now can’t see it?

 

regards

 

here is the FLA prior to RARP study:

https://www.renalandurologynews.com/prostate-cancer/prostate-cancer-salvage-robotic-prostatectomy-feasible-after-focal-therapy-failure/article/665455/

Remember that all "salvage" curative intent treatments tend to have worse outcomes than when used as the primary treatment eg radiation after RARP is 50% successful whereas as a primary treatment it is 66% successful. 

So don't lose sleep over this study if your choice is FLA!!

 
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