Treatment for localised cancer

User

Posted 16 May 2022 at 11:21

Hi,

I am posting this to get some help and experience from others. I will give a summary of my case:

I am only 39 years old and a random PSA showed a result of 4.1 (no other symptoms). This raised the alarms from the doctors who felt a small hardening when palpating the prostate.

I was sent for MRI and the results also showed something:

PV: 32mL. Strong suspicion of a 12x9x16 mm tumor in the left posterolateral apex. PIRAD 5. TCL 16mm. ADC 85

Some nonspecific changes in the peripheral zone bilaterally, marked with PIRAD 2. No growth in vesicles or bladder neck.

R. Left side tumor

Due to this I was sent for biopsy which gave "not detected" results. Since the MRI results were not promising I was sent for a 2nd biopsy which was guided through the MRI image and was done only on the target spot. This time the biopsy showed cancer:

Two of the samples showed Adenocarcinoma, Gleason score 3 + 4 = 7 (7/16 mm), 5% grade 4, group grade 2 and the rest were Adenocarcinoma, Gleason score 3 + 3 = 6, grade 1 group.

The summary of the doctor was: The patient is only 39 years old. He has a PSA of 4.0. cT2a. Gleason score 7a or less, with a maximum tumor length of 9 mm. 5% grade 4. Cribriform growth not detected. PSA density 0.12. Meets criteria of Active Prostate Cancer Surveillance but should still be aware that he will likely need prostate cancer treatment within 10 years. The tumor is located at the apex, but is probably available for treatment with HIFU (High-intensity focused ulstrasound).

They are giving me 3 options:

1) Active surveillance with PSA every 3 months and MRI every year.

2) Robotic Prostatectomy. The doctors believe that due to my age they do not expect any side effect with respect to urine leakage or dysfunction erectile.

3) HIFU followed with active surveillance. In this case they say the side effects are much lower but they can't guarantee that the cancer will not come back. Although I can still go for a prostatectomy in the future.

As you might know I feel devastated, I don't know what to do and I think I am too young to got through a prostatectomy. I have been reading and I found that some countries does NanoKnife which is even better (not sure if this is just advertisment from the clinic). Does anybody has any experience with HIFU and/or NanoKnife? Please I will really appreciate your advices.

User

Posted 16 May 2022 at 16:26

Hi Raul, sorry to hear you have cancer. You are surprisingly young to have this, but it does sound like it has been caught early. We do have members on here who have had HIFU and if I were in your situation that is what I would be looking at. Being young would not make you immune from the possible side effects of prostatectomy. Hopefully you have 40 or 50 years of life ahead of you, and a fully functioning penis would be useful. BTW have you or are you planning to have children, because freezing sperm may be a good idea.

Dave

User

Posted 16 May 2022 at 16:56

I fully accept that you don't want to have a prostatectomy - nobody does - but the advantage of doing so would be that that would hopefully be it - the cancer would be permanently sorted and you could get on with your life. With HIFU it likely would need repeating (or other radical treatment) in the future. Everyone feels differently about these things and only you know whether you're mentally up to knowing that you're likely to need more treatment in the future.

At the end of the day all you can do is gather all the information and decide what's right for you.

Best wishes,

Chris

User

Posted 16 May 2022 at 18:39

Thanks for your reply.

I do have 2 small kids. The hospital has also offered to freeze sperm just in case I want more kids in the future.

Has anybody gone for the active surveillance? Another urologist (outside from the first team) has suggested that this is the best option considering the type of tumor and age. I am worried if this will put in risk my life and then regret that it is too late. Although, the doctors said I will be under strict surveillance.

User

Posted 16 May 2022 at 19:22

The key word in "active surveillance" is "active"; they don't just sit back and do nothing. Be aware, though, that if you do opt for AS there will inevitably be more biopsies in the future if and when the cancer makes a move. It will be considerably more disruptive to your life than if you were to opt for treatment now, probably involving regular MRI scans in addition PSA tests.

All the best,

Chris

User

Posted 16 May 2022 at 20:32

AS isn't a final choice either - it can be a good holding position while you get your head round things and do some nice things with the children. If you are suitable for AS but don't fancy that option then HIFU may be a good option for you - have a less intrusive treatment now and then have radical treatment in the future when the children are a little older.

It is hard to make these decisions - probably the best thing you could do is sit down with the HIFU specialist and talk it through, and then talk to the urologist about exactly how AS is managed at your hospital... not all hospitals follow the NICE guidelines.

In the end, I suspect you will go for radical treatment just because prostate cancer can be more aggressive and more persistent in very young men. But pergaps you can delay that a little while.

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

User

Posted 16 May 2022 at 21:01

HIFU may do the job or for some time, (I have had it twice albeit for failed RT). However, as a young man more prone to the cancer extending over the years, I would do what most men of your age do in your position when having treatment and that is to have a Prostatectomy. If needed you could have back up RT as some point. If you settle for surgery but still want a larger family, don't forget to bank your sperm before the operation.

Edited by member 19 May 2022 at 01:35 | Reason: spelling

Barry

User

Posted 18 May 2022 at 11:24

Thank you all for your replies.

Nice if someone else who has gone through HIFU could tell a little bit about his experience.

I had a short call today from the hospital and the HIFU specialist was optimistic. He does think that potency can be slightly reduced or maybe not he said, also maybe a 0-30% recurrence. I asked him also about nanoknife technique and he said that nanoknife will have even lower side effects than HIFU but I might have to be treated in Germany and that there is little data about this technique.

Anybody has done nanoknife?

Edited by member 18 May 2022 at 12:26 | Reason: Not specified

User

Posted 19 May 2022 at 01:51

Very early days for Nanoknife (also called Irreversible Electroporation IRE) in the UK. Not every consultant appears to know it is now available in the UK and you could be lucky and get it at UCLH on the NHS. This member was very happy having his IRE in Germany but having posted a few times about it has not done so for some time.

https://community.prostatecanceruk.org/posts/t27796-IRE

Edited by member 19 May 2022 at 23:46 | Reason: to highlight link

Barry

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