BPH symptoms while on ADT

oldspice · January 3

Hey guys,

Im 73 YO, diagnosed with PC 11/23, prostate measures a whopping 88cc, PIRAD5, Gleason 4+3, T3N1M0. 3 of 12 cores positive grades1-3 with grade 3 being 4+3 with pattern 4 @65% of tissue. Currently on ADT/ FIRMAGON for 1 month then another late January then 3 month ELIGARD injection.

My question is I am expecting side effects of some sort down the road but right now BPH urinary retention is acting up. Been taking FLOMAX for years and it’s worked well but now not so much. I plan to talk to my urologist soon regarding this issue but was curious if anyone out there has been in same position while doing ADT. Is it common with FIRMAGON or is it the cancer symptoms which I had none before or BPH. I was doing fine then boom can barely urinate in AM. Better during the day once I’m up and ok at night but mornings very bad. Can a non invasive surgery be done now and what has worked for any of you who may have had same experience. Will radiation later on make it worse and will ADT make it better? Just looking for hints before I talk to the urologist but just dealing with it right now. Maybe it’s just a blip. Chime in guys

centralPA · January 3

Here's a trial targeting your situation. Treating urinary issues prior to radiation. You should call or email them and chat.

https://www.cancer.gov/research/participate/clinical-trials-search/v?id=NCI-2022-04174

I had the HoLEP procedure knowing I have PCa. All good.

oldspice · January 3

https://csn.cancer.org/discussion/comment/1711976#Comment_1711976

Thanks@centralPA I will research that and see what’s next. When did you have it done and what were the side effects like? Do you think it’s advisable prior to radiation?

centralPA · January 4

Here’s a journal article on HoLEP prior to radiation therapy. In short, no problem doing it while you have cancer and urinary problems.

https://pubmed.ncbi.nlm.nih.gov/36463424/

As for my experience, it was a 3 hour surgery. Overnight with a catheter. Some dribbles for a few days, really about 90 days for the system to adjust to the fact that my previously worn out and clogged up urinary system was now flowing like a 16 year old’s. Like getting a knee replacement and learning how to walk again. Works great almost 2 years out. My PSA dropped from 5.7-ish to 0.4, back up to 0.87 now, and holding steady.

They removed 100cc of my 140cc prostate, and examined it in pathology. It was clean. All of the cancer remains there.

A RALP Surgery will obviously fix the BPH problems. But if you have BPH and are inclined to radiation, I think it is a smart first step. Radiation can cause urinary problems. Getting the prostate hogged out in advance avoids those, and reduces the amount of tissue to radiate. The trial I linked to has the hypothesis that it is beneficial to the treatment outcome.

But…it is surgery. Make no mistake on that.

oldspice · January 4

https://csn.cancer.org/discussion/comment/1711985#Comment_1711985

I really appreciate your feedback and personal experience. I plan to dig deep on this because BPH and prostatitis over the years has brought me down at times. For whatever reason I never had an issue while sleeping and only a problem in the mornings and when the prostatitis reared it’s ugly head. My urologist was amazed about that as well. The FIRMAGON must be affecting something IMO because I know it’s not the infection. I dread interrupting the cancer treatments at any point for this issue but that would be just like me to do so. Lots to consider. They also have something called “aqua therapy” developed at Cleveland Clinic which is only 1 hour away here in Ohio. Thanks for the input. I’ll post about it at some point down the road

VascodaGama · January 4

https://csn.cancer.org/discussion/comment/1711985#Comment_1711985

Central,

I also appreciate your feedback and personal experience with HoLEP. I wonder if it avoids the risks of TURP. Could it be a good substitute?

Whising you the best outcome in your journey.

Thanks

VG

VascodaGama · January 4

OldSpice,

Can you provide your PSA histology.

I read your profile information and the previous thread, and I became curious about the exams you have done for the diagnosis process.

Did you have a PET before the biopsy? Was it a PET-CT or PET-MRI?

What type of radiopharmaceutical was used in your PET PSMA scan?

I would think that your urologist have suggested radiotherapy due to the " positive internal iliac lymph node" detected in the scan. The clinical stage T3N1M0 means exactly that.

Probably the lymph node location cannot be accessed in robotic surgeries leading to the typical recommendation of ADT as a starter and radiation later.

In open surgeries (not typical nowadays) surgeons manage to reach those areas dissecting a series of nodes. In my case back in 2000 they took 11 nodes, all negative for PCa.

The intent of the LHRH antagonist is to try reducing the size of the prostate and at the same time to "help" in the effectiveness of the radiotherapy.

Rare case with Firmagon, but ADT could have caused a sudden increase of the testosterone in the initial two weeks (flare) which could have affected the retention you experienced.

I think you are doing well in gathering as much information as it is possible. There are several "types" of radiotherapy from which to choose. Get second opinions for peace of mind.

Best wishes and luck in this your journey.

VGama

oldspice · January 4

https://csn.cancer.org/discussion/comment/1711992#Comment_1711992

VG thanks for response. My PSA was 6.4 in Jan 2023 but has fluctuated up down forever. Then in July 2023 it doubled to 12.4 ng. So we did the MRI which indicated cancer and possible lymph node. Then we did the biopsy. Once things were verified we did the PSMA scan verifying prostate/one node/ clean everywhere else. Met with Urologist and Radiation oncologist/former medical oncologist and the decision was made to proceed with hormone therapy 5 months and then radiation for 45 visits. They both agreed my age(73) and prostate being so large that surgery would be devastating for me in terms of side effects. Their opinion was that the FIRMAGON would stop further spread and also help to shrink the prostate to enable a more feasible radiation cure. Oncologist said the shrinkage and hormone therapy would also lower my PSA. So now in the meantime I got this BPH urine retention thing going and fear complete blockage. FIRMAGON does not have tumor flare because it’s an antagonist so I am surprised it’s happening. So far two a day FLOMAX seems to help settle it down but I just wonder where does the BPH end. Will shrinking the prostate with FIRMAGON/ELIGARD make it better or worse before radiation and then what will radiation do concerning it? I plan to address this soon to my Urologist but just wanted others opinions first. Thanks

centralPA · January 4

I highly recommend sending an email to the trial team I linked to. They responded when I did (I wasn't a fit for the trial) and at a bare minimum you'd get to talk with a group of experts that is working with a 100 or so patients in your exact shoes. Wise medical advice for free!

VascodaGama · January 7

Hi again,

OldSpice

I think you are doing well in inquiring about the effects of RT in large size glands before advancing.

In the above post I mistakenly wrote a "sudden increase of the testosterone" but I wanted to refer to dihydrotestosterone.

In the trials of 2010th, there have been rare cases of patients on Firmagon, showing a flare of dihydrotestoste at the initial period of action of the drug.

The testosterone is lowered to castrate levels quickly (in 3 days) but the dihydrotestosterone which is metbolized from androgens (including the testosterone), didn't follow the same path. Androstenedione (Ketotestosterone), etc, also plays a role in the metabolic pathways where significant androgens are synthesized to dihydrotestosterone.

In addition, many researchers have attributed the involvement of dihydrotestoste as the cause of prostate enlargement BPH, leading to recommend 5-Alfa Redutace Inhibitors (Avodart, Finasteride) in BPH cases, to avoid the synthesis.

I wonder if you have a histology of the Testosterone or if you have ever done analysis for dihydrotestosterone. In your shoes I would include these markers tested periodically together with the PSA to evaluate your progress in the treatment.

Hopefully everything is cleared up and you reach to a comfortable decision.

Best wishes

VG

dcarden2012 · July 31

Did you ever get this resolved? I'm having the exact same issue but on orgovyx.. seems like it has gotten worse actually. sigh..

BPH symptoms while on ADT

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