Advice needed on treatment options

[bathingcape]

Hi everyone, I am a longtime lurker first time poster in Cambridge, UK. I am 62. I had brachytherapy on prostate cancer in 2015 stage T2c, Gleason 3 + 3. My PSA fell from from 4.27 to 0.82 by the end of 2017. Then the PSA started gradually rising, reaching 2.86 by the end of 2021 and I started experiencing lower back pain. After multiple PSMA-PET scans it looked like I had a lesion on my sacro iliac. They wouldn't do a bone biopsy, but I had a new prostate biopsy in August 2023 which showed renewed cancer there and my back was getting pretty sore. My PSA was up to 3.9 by November 2023. My oncologist observed that the rise was less than he would expect. In January this year I started taking 150mg of Bicalutamide daily. The back pain has almost vanished and apart from sore throat and losing muscle definition I am in reasonable health (I cold water swim for 25 mins a day, winter and summer). My oncologist is now offering me SABRE treatment on my prostate. The previous brachytherapy left me with bleeding from damage to the wall of my colon so I am aware that no treatment is without side effects. I have few prostate cancer symptoms from the primary tumour at present - a little bit of soreness now and then, but no urgency. Should I do the SABRE? Or wait to be symptomatic? What are other treatment options (mostly in the UK but I could travel if need be)? I feel like I have an untypical cancer, so it's hard to make these decisions.

[Justfor_]

In my opinion, too high a dosage of Bicalutamide will shorten it's effectiveness period. My current dosage is 150 mg per month, yes, you read correctly monthly NOT daily. You can read my monthly documentation in a thread entitled: "An engineer's Bicalutamide maneuvers".

[bathingcape in reply to Justfor_]

I was intrigued by your experience. The treatment is giving me a very sore throat/dry mouth and I would like to lower my dose or take a break from treatment to see if this can be mitigated without raising my risks too much. What strategy would you recommend based on your own tests?

[Justfor_ in reply to bathingcape]

I started on an "aggressive" way implementing steps of 1/2 dosage followed by monthly PSA test and readjustment. As you can see in my documented diary this worked well during the first steps, yet derailed my control loop at low PSA values. After this, I assumed a more conservative attitude implementing adjustment steps of about 20% or less. As an example, dosage was half a tablet every 5 days and was lowered to half a tablet every 6 days (83%) taking my PSA from 0.009 to 0.026, which is IMO ok as a ballpark, but then went back to half a tablet every 4.7 days. My experience can be summarized into:

1) Due to the long half life of Bicalutamide (6-7 days) plus the delayed response of the cancerous cells being affected by it, it will take at least two months for the PSA to stabilize after every dosage change. In general, I would advise to hold off adjusting dosage more frequently than 3 monthly.

2) Due to 1) it is good practice to even out the dosage, as for example: it is better to split the tablet into two and get one half daily as compared to taking a full tablet every other day.

3) Dividing the tablet more than into two is not practical, so eventually, there are days to skip. I am scheduling all my PSA tests on the day, but before taking it when the Bicalutamide concentration is at its minimum.

4) As the equilibrium point is reached the sensitivity increases, i.e the rate of change between Bicalutamide concentration and PSA becomes steeper. Fine tuning must then come into play.

[Tall_Allen]

Your basic treatment is ADT (Lupron, Orgovyx, etc.). If you want to have more radiation to the prostate and the visible bone metastases, that may or may not help (no one really knows). We now have proof from 2 clinical trials that adding a year of either enzalutamide or apalutamide may give you a chance at a long vacation from drugs:

prostatecancer.news/2023/05...

prostatecancer.news/2022/09...

(note: those two trial used only conventional imaging (bone scan/CT), not PET scans, so you are in a similar situation)

[Doctorsceptic]

Hi. Yes go for the SABRE - nothing to lose there, I cant see any reason for not doing so. I presume you are receiving bicalutamide plus leuprolide? I am older than you at 78 and had bad experiences with enzalutamide and apalutamide, and have stopped everything for the time being. My view is that the data on enzal' and apal' is pretty marginal for someone of my age but for you they are certainly worth discussing with the oncologist.

I am a great bveliever in QualityOL before QuantityOL so always bear that issue in mind when discussing options wih the oncologist. It is an important trade off. I dont think enough attention is given by oncologists to ensuring that patients are FULLY informed about all the drug side effects - ie trivial but common and serious but rare or uncommon! Testosterone deprivation has a lot of effects on energy, brain, bones, muscle etc and it is worth doing your own research to be fully informed.

Hope that helps. (PS I am UK based too)

[Ashski]

I’m interested in your situation being originally Gleason 3+3 PSA 4.27. and Brachytherapy treated.

My PSA has hovered around 3.0 for 5 yrs since diagnosis. Gleason 3+3. I’m on active surveillance. My urologist does Brachytherapy & thinks it is the way to go when the time comes & we decide to treat. I see him next month.

I’m wondering should I treat, thinking I’m just kicking the can down the road & concerned of course the can might turn into a bucket. Your situation reinforces that thought.

Hmmmm.

I’m going to ask him to prescribe Ivermectin but doubt he’ll be willing.

[bathingcape in reply to Ashski]

If it helps you my decision to do brachytherapy originally was influenced by the fact that my older brother had been diagnosed (and treated with external beam therapy) around the same time (2014). Both my dad and paternal grandfather died in their early sixties of cancer (lung and pancreas) although both were heavy smokers. In the case of our generation the prostate cancer returned after an interval. My brother has since had a prostatectomy and seems clear of cancer though not unaffected by problems with continence.

[Ashski in reply to bathingcape]

Thank you for the feedback. My father had a prostatectomy 25yrs ago, he's 87 now. Has had elevated PSA over the years controlled by periodic hormone therapy. He was continent for the first 5yrs post op but started suffering as soon as he commenced hormone therapy injections.

What I find interesting about your case is the fact treatment on a low Gleason grade of 3+3 wasn't successful. In hindsight would you have chosen a prostatectomy instead of Brachytherapy?

[bathingcape in reply to Ashski]

I wouldn't have hurried into it, given the side effects I have witnessed with prostatectomies. But if I had known more about the genetics of the cancer maybe I would have been more radical and taken the risk.

[vintage42]

So you had brachytherapy 9 years ago, now have recurrence in prostate and a met on the spine. For ADT, you are taking Bicalutamide (Casodex) which does not affect testosterone production but blocks its effects. For the prostate, you are being offered stereotactic ablative radiotherapy (SABR), known as stereotactic body radiation therapy (SBRT) in the US.

I would take the salvage SABR for my recurrence, but it is too soon for me, as I am only 3 years out from external radiation. I think your Casodex mono therapy has almost no side effects compared to more modern doublet or triplet therapy, but is also much less effective.