I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Active surveillance with cribiforms

User
Posted 25 Mar 2023 at 19:15

I'm 63, slim and fit and at present everything works fine I think for my age. I have just been diagnosed with PC Gleason 3+4 with cribiforms, and the advice is for a radical prostatectomy, but I am worried about ED or reduced erection and dry orgasms (if any at all). I was wondering if anyone out there has had a similar diagnosis and has opted for AS, and how long they have managed to do this?

One for the medics: If I opt for AS how likely would it be that the PC would get significantly worse between tests (i.e. basically how viable is AS)? At present a surgeon thinks he can do nerve sparing (on both sides) with 75% chance of re-establising my erection, but that still means 25% chance of loss. Why should I take that chance when everything is working fine and I have no symptoms?

User
Posted 26 Mar 2023 at 02:28

Does the biopsy say "invasive cribiform" or just "cribiform". I ask, because if you Google cribiform prostate cancer most articles say "invasive cribiform" is bad news, so to me that implies that cribiform on its own is not as bad news. Of course it is also possible the person who wrote your biopsy report writes "cribiform" as a short hand for "invasive cribiform" . 

If you read various regular contributors to this site you will notice some have a bias to recommend early prostatectomy, others RT, and you would notice I tend to advocate AS where possible and RT if treatment is necessary. Please bear in mind no one on this forum is a professional or expert, we just see a lot of posts and have picked up bits of knowledge and try and give reasonable advice. Your medics are the only ones who have seen your scans and results, and you are the only person who understands how much you value your life and quality of life. So only you will be able to make the decision.

All I can say from the information provided is that Active Surveillance is very unlikely to be possible, and if it is possible I can't believe you would delay treatment by more than a year, and you would probably reduce your chance of a cure by a significant percentage.

If you are worried about the side effects of RP (and you should be) then ask if RT is an option. Sometimes a tumour is better treated by RP and sometimes better by RT, but most tumours will respond equally well to either treatment, so if the medics think RT is suitable then that may be the better option for you.

Dave

User
Posted 26 Mar 2023 at 09:40

There are no medics here. The only support group I know of which always has consultants available is The FOPS, which currently meets monthly alternating between in-person at Chorleywood (near M25 J18) or on Zoom. Some other local support groups will occasionally have a guest consultant or CNS.

I agree with Dave (except I'm not sure there's a distinction with invasive and non-invasive cribriform).

Cribriform is associated with a higher chance of distant mets, and that's not really consistent with Active Surveillance as there's a higher risk of it going metastatic without first observing more changes in the prostate.

For a prostatectomy, you should certainly ask about your chances of nerve sparing if that's important to you which you have done - this will depend where the cancer is inside the prostate. However, even with nerve sparing, erections don't always recover, and when they do, they usually aren't as good as they were before, although they can still be good enough and things like Viagra/Cialis can help in this case.

It is often suggested that radiotherapy is likely to cause less damage to erections and urinary continence, but although it may be lower risk, that's not risk-free either. Unlike prostatectomy, damage due to radiotherapy is not usually immediate, but if it's going to happen, it tends to start within 2 years and get gradually worse. Radiotherapy does have a higher chance of causing bowel problems, although serious problems are quite rare with modern radiotherapy targeting accuracy. Radiotherapy usually comes with temporary hormone therapy, and you do have to undertake penile physio while on hormone therapy to protect the tissues of the penis so that doesn't damage them.

Unfortunately, no treatment is risk-free, and neither is Active Surveillance. It is a challenge weighing up treatments which are all likely to give you some side effects when you have no sense you have anything wrong with you.

In any support group, you probably get a worse impression than is the reality, because most of those who don't need any more support after treatment don't stay, whereas those with problems are more likely to stay.

I went for radiotherapy because surgery was unlikely to be nerve sparing in my case, and it was thought quite likely I'd need radiotherapy afterwards in any case, so why not skip the surgery and side effects it might bring, and just go for radiotherapy? Some 4 years after making my choice and 3½ years after the radiotherapy, I'm lucky and everything still works exactly as it did beforehand, which is not at all what I was imagining would be the case when I was at your stage. There are no guarantees of this of course. I do have a long term side effect which is minor painless rectal bleeding, but it doesn't impact my quality of life in any way.

User
Posted 26 Mar 2023 at 15:10
Thanks guys. The Oncologist (who specialises in RT) said that I would not be suitable for more focussed RT as I have cancer on both sides of my prostate. I did not ask for a fuller explanation which perhaps I should have done. But she was quite dismissive of the idea of RT overall and thinks I'd be better off with surgery.
User
Posted 26 Mar 2023 at 18:40

My cancer was throughout my prostate it certainly ruled out focal treatment, but RT is generally not considered a focal treatment in fact sometimes the beam is deliberately widened to include more of the pelvis in the hope of picking up any stray cells.

We have to assume the oncologist is right in advocating RP over RT, but the onco will be balancing the pro and cons against how well they think an average person can handle the side effects as opposed to how well YOU can handle the side effects.

For the sake of argument let's say that RP has a 70% chance of curing you but RT only a 60% chance. Then clearly it seems best to steer you to RP. However if RP has a 40% chance of leaving you with ED but RT only has a 30% chance of leaving you with ED, then if you value your erections more than your life RT is the best option.

Of course the above percentages are just examples we don't know the real percentages and we don't know all the possible side effects of each treatment. Only you know how important you rate quality of life over quantity of life.

Most newly diagnosed people are so fearful of death that they want the most aggressive treatment whatever the consequences, it is only when they are "cured" and have a clear head that they realise what they have lost and perhaps a less aggressive treatment would have been better. 

If you know anything about "survivor bias" you will realise the above argument, has the problem that those who chose the least aggressive treatment are probably dead and don't have the luxury of complaining about ED.

The good news is you are thinking with a clearer head than most people in your position absolutely no one will be able to give you precise percentages for cure and side effects, and even knowing 70% cure rate has no real use to you, because you will either be 100% dead or 100% alive. At least you can now have a more informed discussion with the oncologist and see if your preferences are enough to justify a change in treatment plan.

 

Dave

User
Posted 26 Mar 2023 at 18:50

My Personal experience with PC Diagnosis , Dec 2020  Gleeson 3+4   PSA 9.7.

My consultant strongly recommended a RALP, but  also put me  in touch with an Oncologist for a second opinion, who said to me that my PC was a low to medium risk and I'd have 6 months thinking time to decide what to do next! She also went on to say that RALP to treat my PC would be like cracking a nut with a Sledge Hammer! She went on to recommend Brachytherapy to treat my PC and also said that there was no rush to make my mind up as risks of spreading was low!

I opted for the RALP after careful consideration and discussions with people on this forum and had this done 4 months later as soon as it was offered to me.

After surgery histology results staged my cancer at T3a with a 10 mm  positive margin, meaning thank goodness I chose the RALP and didn't wait the 6 months as suggested by the Oncologist.

After the operation my surgeon went on to tell my wife that there was more cancer than he'd expected there to be.

So, as far as surveillance is concerned, I can't, hand on heart tell you to take this course of action.

Of course, this is my experience only and will not necessarily be the same for you but something to consider when deciding for yourself.

I'm now just 2 years post RALP and all my PSA tests  have remained at 0.1. Now only need testing annually!

Best wishes and get back if you need to discuss further Van.

 

 

 

 

 

 

User
Posted 26 Mar 2023 at 20:57

Van, good that your PSA is staying at 0.1 We often have posts where the surgeon reports the cancer was more extensive than anticipated, this clearly shows that diagnostic images are not as good as we would want.

My assumption is that the more the cancer has advanced the more likely RT would have been the best treatment choice rather than RP. Ofcourse we have to make the choice on the information we have at the time. In the case of RT no one gets to look at the prostate in a petri dish so we never hear how inaccurate the diagnostic images were in those cases.

 

Dave

User
Posted 26 Mar 2023 at 21:50
Cribriform is aggressive and highly invasive- no reputable doctor is going to tell you it is suitable for AS.

Of course, the doctors cannot make you have treatment against your wishes but you will be opting for no action which is not the same as AS. My father-in-law opted for no treatment because he was concerned about his sex life. He was dead in 4 years and he didn't have the additional complexity of cribriform pattern!

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

 
Forum Jump  
©2024 Prostate Cancer UK