Prostate therapy for CLL patient?

[JIDD]

I was diagnosed with CLL in February and have been on Acalbrutinib since April. Lumps in my neck have gone and my bloods are all normal apart from slightly low red cell count. I have now been diagnosed with prostate cancer and MacMillan at UCLH have suggested two treatment options High Intensity Focal Ultrasound and Hormone+Radiation. I am male and turn 76 next week. Two questions -

Has anyone experience of CLL + prostate cancer?

Given my existing CLL and treatment has anyone ideas on the advisability of the two treatment options?

[JIDD]

Thanks justhawk. I have joined the inspire.com prostate group. Nothing obvious popped up so far. Your reservations are a more detailed version of my own so thanks for the detail.

[Wifey21]

Hi JIDD.My husband who is 72 was diagnosed with CLL in Nov 2020 and is on w&w. He was diagnosed with prostate cancer in August this year.

He has in the last week chosen to have brachytherapy. That was a decision he took some time to make, having been offered a range of treatments & full discussion with professionals about the procedures & likely outcome, short & long term side effects & salvage options if further cancer in the future.

He will have his implants in January. It's a lot to consider & I appreciate your choice is narrower. I notice you are on treatment for your CLL in your profile. We found this and the prostate cancer forum invaluable as he processed everything he needed to consider. He is at peace with his decision. I hope you find similar.

[JIDD in reply to Wifey21]

Thanks Wifey21. Had not heard of brachytherapy as an option. Our cases are perhaps not comparable since I was only on w&w for CLL for 2-3 months before they put me on Acalabrutinib plus antibiotics and antivirals to combat reduced immunity.

I just discussed with a friend who was treated for prostate cancer 5 years ago, External radiotherapy to shrink the tumour followed by prostatectomy. He seems to have been OK since.

Cancer seems to be like life - complicated!

[Wifey21 in reply to JIDD]

Sure is! My understanding is that not everyone is suitable for brachytherapy. My husband's cancer has been caught early & is contained with virtually no symptoms. He had to have tests to establish that he was above a certain urine flow & that the size of his prostate was neither too small nor too large. eg. Too small & they can't fit enough seeds. He is on no other treatments & he has no conditions affecting his bowel.

I believe he has made the right decision for him. He didn't want prostatectomy. If he has to have salvage treatment with prostatectomy in the future he would at present have to be treated in London as that is the nearest location for specialists in removing prostate after brachytherapy, but they have said his cancer is fully treatable & it's very rare they've had to send patients there. They treat patients in across our county so see a lot of people .

[Divisidero]

I have been on this excellent site for some years as I have CLL and am on watch and wait. I just take a glance most days mainly to see the circumstances where watch and wait patients need to start treatment. I am pleased for you that your treatment has gone well.

This post is by far the most relevant to me as I expect to be diagnosed with prostate cancer on Monday when I will see my biopsy results.

I have done lots of research on this topic. I have a link with UCL in that I did my PhD at UCL in the chemistry department in a group where 'aromatization' was used every day. My daughter was born in UCLH almost exactly 50 years ago. The first reply was extremely knowledgeable and I would agree with all that was said. My immediate experience is two friends who had prostate removal that did not solve the problem then radiotherapy etc. As Justhawk said they had difficult side effects.

However it is hard to understand your case fully and give an opinion without knowing your PSA, Gleason score and stage. (I do note your age.)

For example a friend in California seemed to be in a similar position to you - with data PSA 5.6, Gleason 3+3, T1c. He was treated many years ago by proton beam therapy(Bragg peak) - totally successfully - no ED or incontinence The question one might ask in his case is the cancer was such low grade that treatment might have been unnecessary but that was 2008.

Can you share your information? Also do you have your PIRADS score from the pmMRI?

I have been looking at HIFU for the several weeks and it seems not to be available on NHS except in a trial. Are you saying you have been offered this on NHS? Or is it a UCLH trial? The view I have picked up is that HIFU is not seen as a real option here in the UK. My understanding also is that it is not accepted in Germany by the insurance companies there.

HIFU treatment is offered at focaltherapy - easily found on google - privately for 14000 pounds. Many of the practitioners are from UCL - eg Raj Nigam.

I watched literally last night, a lecture on a paper by Professor Chris Emberton of UCL who seems to be the leader in the HIFU field. He was describing the results from a huge international trial - he was the leader. He is pro HIFU. At most other centres it is not mentioned is my understanding - again reenforcing the view by your first reply from our American colleague - and this is a view my reading fully backs up -that is surgeons tend to offer RP while radiologists offer RT.

I hope on Monday, at worst, I have a localised cancer where HIFU is a possibility and I will be ringing ringing Emberton's secretary shortly after. To be specific I pray for nothing worse than Gleason 4+ 3 and T2.

But deciding is a minefield.

See for easy reference

prostatematters.co.uk/treat...

[Divisidero]

Thanks so much for your reply. Note I am based in the UK.

Again I agree with virtually all you say. Your caveats about PSA and the Gleason score are well flagged especially on American sites such as the Mayo and Johns Hopkins if I remember correctly. Similarly the newer PIRADS system for MRI uses words very carefully. But there is research going on to correlate PIRADS with Gleason! There optimisation of the MRI machine is important. Many centres in the UK are rated: again UCLH has a top rated machine

BTW one of our mast famous doctors, Henry Marsh, turned up with a PSA I think of 127 so no need for a Biopsy there

I assure you I would feel I have won the lottery if I am told it is only BPH etc.

My friends had RP first which failed and went on to other things with the disadvantages you mention. They have not survived.

I have another friend right now who presented with a PSA exactly the same as mine - 7.4. After biopsy he had RP in a private clinic in Hamburg ( the Martino Clinic) where the only operation they do is RP. Again PSA rose so more treatment RT/hormones and now looking at PET scans etc.

I was not aware of PSMA scan or TULSA-PRO; thank you for this - fascinating.

But most have to go down this evidence gathering route and a urologist will give an opinion.

If I were 3+3 and lowish risk I would opt for active surveillance.

If slightly worse I would see if I could have HIFU hopefully at UCLH

Thanks again for your reply and I wish you well with you CLL. No offence taken. I loved your americanisms! Rodeo and the full enchilada are just great but I see a tricky context.

[Hidden in reply to Divisidero]

Best wishes to you! May you have low numbers! (For prostate anyway)