I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

I need advice

Email this conversation Print this conversation

User

Posted 04 Apr 2019 at 22:39

Hi all,

I need your help/advice please, finally pulled my head from the sand after this weeks biopsy results and I’m lost tbh. I’m 48 just, but was diagnosed at 46.

I was diagnosed last year after dull groin pain didn’t clear up with antibiotics. This led to a PSA test, 5.7, and then had MRI and Biopsy last year. MRI showed a 0.3 (I’m assuming cc volume) lesion left lobe near the apex, and the biopsy results were 4 out of 6 on left lobe, 5% volume Gleason 3 +3. For the record, I totally appreciate how lucky I am, in detecting this early and know I am way more fortunate that many on this forum.

The right lobe was clear, and I was offered AS - which I opted for.

PSA has bounced around over the year and last one was 2.8, but I had another MRI and repeat biopsy anyway as it was a year from initial diagnosis. MRI showed increase in volume to 0.5 (again I’m assuming this is cc) and biopsy results this week were : targeted biopsy this time to lesion on left lobe, 4 out of six positive, volume up to 50%, still Gleason 6. Nothing on right lobe. Consultant said I was ok to continue AS, with another psa in 3 months, Mri and then I can decide next steps. But now I am at the point of considering treatment after it’s all sinked in . I have a family and that’s all good, had vasectomy 8 years ago, so not worried about fertility.

Whats going on in my head is I don’t want to risk it progressing if I have the opportunity to do something now, rather than waiting another 6 -18 months and risk treatment options changing if it progresses.

Can anyone offer any advice based on their experience? Be really grateful, thanks folks

User

Posted 04 Apr 2019 at 23:19

You probably could reasonably continue on AS with a Gleason 3+3, but is there any point in doing so knowing that it’s going to need treatment at some point? If I were in your position I think I’d want to get the treatment over and done with rather than have the knowledge that it needed doing hanging over me. But I’m not you and only you can make that decision.

Has your urologist discussed treatment options with you?

Best wishes,

Chris

User

Posted 04 Apr 2019 at 23:50

Hi Chris,

thanks for your quick reply. Yes my urologist has gone through all the options - he's been a diamond tbh.

You know what it's like, don't really take it all in during the results consultation and I have had 48 hrs to consider my position.

Am swaying towards RP, and just getting on with it, given the increase in volume over the past year and associated uncertainty that as the wee bugger grows it might start getting nastier.

Trying to balance this with the potential side effects of RP. Ho hum.....

User

Posted 04 Apr 2019 at 23:53

Seems sensible to have the next PSA test followed up with an MRI and then I think the thing to ask your consultant is whether s/he believes the cancer has increased from 5% to 50% or whether it was simply because this most recent biopsy was targeted to the area already identified to be a problem.

When lesions are reported in this way, it is usually millimetres not cc so still very small.

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

User

Posted 04 Apr 2019 at 23:54

If the numbers are as reported here in three months, you should go and talk to an oncologist before making any decision re treatment - you may be suitable for brachytherapy or one of the newer treatments.

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

User

Posted 05 Apr 2019 at 00:11

Hi Lyn,

thanks. Yes my consultant did say that the fact it was targeted this time could well be the reason the for the increase in core volume.

Its all just so uncertain, and nothing is really definitive. When I discussed it, it seemed fair to continue with AS, but now I've had the chance to mull it over, am thinking it might be better to get rid and not risk the chance that it could morph/develop beyond a 6.

User

Posted 05 Apr 2019 at 00:37

Hi Colin,

It may or may not be of some consolation to you to learn that some critical illness insurers will not pay out on a Gleason 3+3=6 cancer diagnosis as is it not classed as ‘critical’ or terminal. Some experts say G6 should not be called ‘cancer’ at all.

My friend is in his seventies, is G 3+4=7 and he has been on active surveillance for five years, but with annual consultant appointments and mpMRI scans (private). He has recently seen raised PSA levels so he will have to do something different soon.

You are quite young, so I would advise you to defer any radical treatment as long as possible, or as long as you feel comfortable with, based on the advice of your doctors, of course.

Best of luck.

Cheers, John.

User

Posted 05 Apr 2019 at 04:37

By deferring treatment you are also obviating the risk of the treatment and it's side effects until the event but you should be carefully monitored. You should consider whether you want to bank your sperm before having any treatment.

Barry

User

Posted 05 Apr 2019 at 07:11

Hi Colin , I too was 46 at first problems and had surgery at 48. Click my picture and read my profile if you want to. I must admit I’m a negative person but have every right to be nearly 4 yrs on and now incurable. Just be aware that whatever treatment path you choose , then your life will change forever. There is no easy option it seems with regards to side effects. The effects of surgery on your love life are devastating and shocking to a young man and fixing the problem can take years. It’s not a decision to take lightly. In your position I would defer treatment until someone told you it was vitally necessary. It’s just a horror once you’re on the rollercoaster unless you get very lucky. Best wishes and great people and advice on here b

User

Posted 05 Apr 2019 at 10:13

I would agree with Chris. From my perspective, I would want to delay the rollercoaster for as long as possible - once I went down the treatment path, there was no going back, and the side effects really are quite impacting. Obviously a personal choice though, I was Gleason 9 so really there wasn't an option.

I'm intrigued by the idea of the Gleason rating increasing. I seem to recall asking my oncologist if that is how PCa progresses, and she didn't give me a clear answer. Did my cancer start out as a 4 (or 5), or did it start as a 3 and develop into something more meaningful from there?

User

Posted 05 Apr 2019 at 10:41

Generally speaking the Gleason stays the same throughout - a G3 does not morph into a G5 over time.

However, the G score is a report of the most prevalent pattern. It might be that a tiny proportion of 4 or 5 is not spotted in the early years but progresses more quickly than the 3+3 over the years and becomes the more prevalent pattern. That is why regular biopsies are an essential element of active surveillance.

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

User

Posted 05 Apr 2019 at 10:47

I was 46 when diagnosed 2.5 years ago. I was T3a at diagnosis and Gleason 7. The urologist and oncologist told me I couldn't wait and needed treatment. Both recommended surgery because of my age. Post surgery pathology came back pT3b and Gleason 9, so I'm glad I went for the surgery. I've since had to have salvage radiotherapy and i'm currently on hormone therapy. The effects of the treatment are devastating, and whilst difficult for any man, the younger you are, the earlier you miss out on a proper sex life and the earlier you have to deal with the other side effects.

Looking at your story, it seems to me you can take a great deal of reassurance from your AS test results. I'm risk averse and so would naturally lean towards treatment, but having lived through all the side effects, I'd really urge caution. They are not to be under-estimated and, if they can safely be put off, I'd do that. However, it's a very personal choice and you have to live with that decision, and for some men, that's easier said than done.

Ulsterman

User

Posted 05 Apr 2019 at 10:49

A lot of people urging delay with reasonable supporting arguments, but I sense from your OP that you’ve already decided to treat as with your age as it is then treatment at some point is certain. Why not do it when the burden and pathology are at their most favourable?Just as sometimes surgery leaves you problems, so too does AS lead to missed opportunity for cure.

“if it were done, when ‘‘tis done then ’twere well it were done quickly”. There’s wisdom there but it’s only ever swapping one uncertainty for another, albeit hopefully progressively less life-threatening ones.

User

Posted 05 Apr 2019 at 11:07

There is nothing wrong with that advice sumdumbloke; my point was only to wait the 3 months and another MRI before making a decision whether to treat. My guess is that the further MRI may be a more detailed one. If he changes his mind now and asks for another urology appointment to discuss possible treatments, he could be waiting the 3 months anyway and end up having the discussion without the facts needed.

Anecdotally, the younger a man is at diagnosis the more aggressive and persistent the cancer eventually turns out to be. But waiting 3 months for another round of diagnostics seems sensible to me.

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

User

Posted 05 Apr 2019 at 11:22

I have no quibble with that Lyn. Seems entirely sensible in fact.

I just thought that the tide of advice being to persist as long as possible with AS seemed to be based on factors that weren’t necessarily present in the OP’s circumstances.

User

Posted 05 Apr 2019 at 12:13

Originally Posted by: Online Community Member

If a delay will provide useful additional diagnostic information and allow a better-informed decision about what treatment will be optimal, that seems like a good choice. If it's simply delaying the inevitable, though, then if it were me I'd want to get it over and done with. Is there any doubt that it will eventually require treatment, I wonder? Clearly a prostate cancer diagnosis for a man in his 40s is very different from a diagnosis for a man in his 80s!

Chris

User

Posted 05 Apr 2019 at 12:57

Hi Folks, thanks to all who have taken the time to respond and offer very sound opinion and advice - really appreciated.

I maybe misunderstood my consultants point about progression. I wanted to know if there was a risk of the Gleason score increasing, the longer I waited (continued on AS). My concern was that in the past year, the lesion has almost doubled in size, albeit the grading hasn't changed yet according to the biopsy results. So what I had asked was, as the lesion grows, is there any evidence to suggest that the cell structure changes and advances beyond a 6 - a reasonable question to ask I think - but no definitive answer - might/might not. If anyone has any info on this be grateful if you could post a link.

To clarify where my head is at: I was comfortable on the AS route until the latest biopsy results (Tuesday). I can't fully appreciate the side effects post-treatment, as I haven't gone through them - but it does sound pretty awful from some of your experiences.

In the back of my head there's something saying, do it now - when the pathology is favourable. If I wait it, it could be a different story in 6 months time - and it sounds like no-one actually knows, although it seems more likely that it be the same, but it feels pretty 50/50 right now.

I am young (relatively), have had my family and no plans for any more - but the ED does concern me. I have done a bit of reading up on this and it seems there's different types/or approaches to nerve sparing surgery. I read recently Mani Menon's website about precision prostatectomy which was interesting, but it doesn't look like this is available in the UK - anyone know why not?

Thanks again for all your input - its really helping to share this amongst knowledgeable others .... Cheers Colin

User

Posted 05 Apr 2019 at 13:19

Have you spoken to an oncologist yet, in addition to your urologist, Colin? Urologists do surgery and hence naturally tend to focus on that aspect of treatment. Oncologists do non-surgical treatment such as radiotherapy and brachytherapy and can advise on those. Surgery and radiation-based treatments have similar success rates, and radiation treatment can have fewer side-effects than surgery.

If you've not already done so, I'd suggest downloading or ordering the "Toolkit" from the information area of this site. It contains excellent information on the pros and cons of all the different types of treatment available for prostate cancer.

Best wishes,

Chris

User

Posted 05 Apr 2019 at 13:29

Originally Posted by: Online Community Member

So what I had asked was, as the lesion grows, is there any evidence to suggest that the cell structure changes and advances beyond a 6 - a reasonable question to ask I think - but no definitive answer - might/might not.

I already answered this above - a G3 pattern does not become a G4 or G5 pattern over time. However, you may have tiny amounts of G4 or G5 pattern that are not currently identified but which could over time, progress more rapidly than the 3s so your Gleason score could change to 3+4, 4+3 or 5+5 depending on the proportions.

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

User

Posted 05 Apr 2019 at 13:40

Another aspect to consider is that a biopsy, by its very nature, is a random sampling of the cancer cells in the prostate, and won't necessarily pick up everything that's there. It's rather common for the pathology examination of a removed prostate to reveal more active and/or more widespread cancer than a biopsy and scans suggested.

Chris

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

I need advice

Similar Topics

Join the online community now.