Information overload and now decision time!

[Mike58]

Okay, so I am at that stage of making a decision.

Mind you I am about to embark on a 10 week overseas 45th anniversary trip. Dr says that should be fine. So whatever decision i come up with now could change by late November.

So then a month ago, I had 42 biopsy samples taken and 8 of them were found to be Gleason 4+4 and all are in the LHS of the prostate. Petscan shows no metastatic growth.

I'm 65yo. No health issues, no symptoms, and everything is functioning as normal, My last PSA level prior to Biopsy was 8.

Do I do robotic prostatectomy or do I have 4 weeks of RT at 5 days a week? Neither will actually start until early December.

The urologist says prostatectomy and the Radiology Oncologist suggests RT with HT as a backup.

Neither sounds great, but having done some research I am leaning towards RT but delaying HT for a few months just to see if the RT has done the trick. Is this unreasonable to do this? Has anyone else in a similar position to me actually delayed HT or even not done it at all and just did the RT and had success?

The only issue I have with doing RT is that my urologist has said that RT will mess with the prostate so that in the future if you do want it gone then all hope of salvaging any continence or erectile function is pretty well shot and at worse you could end up with a bladder bag for life. Is this correct or maybe just an exaggeration? Again has anyone actually been through this experience?

So many things to try and digest, so any thoughts from others who have been there, and done that, would be great.

Thanks to all in advance, and hopefully Tall_Allen can throw me his valued and informative opinion as well.

Keep positive all!

[Tall_Allen]

(1) "Neither sounds great, but having done some research I am leaning towards RT but delaying HT for a few months just to see if the RT has done the trick. Is this unreasonable to do this? "

Unfortunately, you can't do it that way. The whole point is that hormone therapy improves the results of the radiation. The only way to get a cure is to combine them. The SOC for high-risk patients like yourself is 2 years of hormone therapy after external beam radiation.

Also, consider this clinical trial, which features are shorter, less intense hormone therapy for high-risk patients with lower genomic risk (you can check if there is a site nearby):

clinicaltrials.gov/study/NC...

By the time you are ready to be treated in December, this clinical trial should be recruiting too, and you can enroll in both. It randomizes patients to a much shorter course of radiation treatments:

clinicaltrials.gov/study/NC...

(2) "The only issue I have with doing RT is that my urologist has said that RT will mess with the prostate so that in the future if you do want it gone then all hope of salvaging any continence or erectile function is pretty well shot and at worse you could end up with a bladder bag for life. Is this correct or maybe just an exaggeration? Again has anyone actually been through this experience?"

It's half true and very common for urologists to say that. The half that's true is that one should never have a salvage prostatectomy - it can be disastrous. The half that's false, is that salvage for local failure of primary radiation is more radiation, either focally (brachytherapy) or whole gland (SBRT or whole gland HDR brachytherapy). Thermal ablation (cryo or HIFU) is also possible as salvage. Read this:

prostatecancer.news/2017/09...

If you should have a non-local recurrence in the pelvic lymph nodes, they can be treated with radiation.

[Mike58 in reply to Tall_Allen]

Thanks Tall_Allen. You have certainly lived up to your name. I'm from Australia and your name is now being referred to on our local PC forums. Hence my question, on this forum, hoping to hear back from you.

My dillemma is that I'm due for retirement in June 2024 and so starting the HT therapy 6 months earlier will have a significant bearing on my capacity to work those last 6 months. Hence why I asked if the HT side of things could be delayed for a few months after the RT.

The other option is that I start everything up in June 2024 but of course that may be irresponsible due to the 4+4 score. My urologist here in Australia said that during Covid many PC patients had no alternative but to defer their scheduled treatments and the data showed that in the majority of cases (even the high risk ones) that the patient circumstances had changed very little over time. Some had to defer 18 months but still no metatastic issues.

If only we knew how long we have before we need to get something started. Anyway, if you have any thoughts on the above, I'd love to hear from you.

[Tall_Allen in reply to Mike58]

I have no idea why you think that hormone therapy will impact your ability to work. Are you operating heavy machinery? Many men on hormone therapy continue to work without problem.

[Mike58 in reply to Tall_Allen]

Ok, - so no I don't operate any heavy machinery but I am involved in Keynote speaking work which takes me overseas including to the USA. From my understanding, the Hormone Therapy can cloud the mind and make you feel very mentally drained and that is something that doesn't bode well for public presentation work. This information is only based on hearsay - perhaps others will tell me that this is not the case at all. I'd love to hear others thoughts about this.

Now then. Here is a schedule i have for next year and I would greatly appreciate what treatment you would suggest might help facilitate the best outcome for achieving the schedule successfully and at the same time effectively treating my PC diagnosis. As mentioned I am a 4+4 no spread and treatment starting in late November. If I choose Surgery it cant be done until Dec 12th (yes urologists are that booked up!)

Next year from March 27th I have an extensive tour to Europe planned with some speaking engagements. I return early June (9 weeks away altogether)

Do I bite the bullet and go for RP surgery and hope that any incontinence issues are all good by the end of March or do I do the 4 weeks RT also in Dec and start HT as well and just hope that I'll feel reasonable to do this trip at the end of March?.

I just don't know what the answer is and will be guided by the expertise of this forum. Also I've only written the above as a reply to Tall_Allen and so I hope the others who have kindly taken the time to reply to my original question will also see this. And thanks to you all for taking the time to write, - very kind of you all and also very informative.

Keep positive everyone. I look forward to any responses.

[Tall_Allen in reply to Mike58]

It is understandable that you read about all the side effects that can happen, and you worry that it will happen. Most men do not experience as a result of ADT the kind of brain fog you describe (it's not at all like chemo brain), especially not with adjuvant use. To prevent that, and to prevent fatigue, exercise as much as possible.

[Mike58 in reply to Tall_Allen]

So I am guessing that with my circumstances for travel at the end of March next year that you are recommending RT over Surgery, as of Dec this year. Am I correct?

If I could be guaranteed that incontinence would not be a problem 12 weeks after Surgery, then I would probably lean towards that as an outcome but from what I can gather in reading many posts, there is likely to still be the need to be wearing pads and that does not bode well with travelling. But is that a better trade off than possible bowel issues with RT and dosing up on HT as well?

Your thoughts?

Thanks

[Tall_Allen in reply to Mike58]

It is not in my ability to recommend anything. It's your life and only you can decide what's important to you. All I can do is provide relevant info and correct misinformation.

The stats are for incontinence (any pad use) after surgery are these:

baseline: 2%

6 months: 46%

12 months: 26%

24 months: 20%

The stats for bowel function after EBRT (EPIC scores: best is 100%):

baseline: 93%

6 months: 86%

12 months: 90%

24 months: 90%

prostatecancer.news/2016/09...

[Mike58 in reply to Tall_Allen]

Thanks for this data. It is rather compelling.

Just a few questions, and sorry for my ignorance.

1: How many times can you keep having RT if the PCa keeps returning?

2: As we have mentioned in the past, many urologists will tell you that after RT the prostate is so damaged that any removal of it becomes very messy. My question is, Why would there be a need to remove the prostate after going with RT?

3: If HT causes fatigue, can you offset that with energy supplements / drinks or is that a no no?

Thanks for any input. 🙂

[Tall_Allen in reply to Mike58]

1. After salvage RT after primary RT, that seldom happens. Local control is very good with RT, which is why ROs also use it to destroy cancer in painful metastases. If there is a recurrence it is usually occult or distant, not local.

prostatecancer.news/2016/08...

2. As I showed you, there is never a good reason to do salvage surgery after primary radiation. It should never be done.

3. Exercise is the best way to prevent ADT-induced fatigue. There is a trial of combining exercise and ritalin:

classic.clinicaltrials.gov/...

[Mike58 in reply to Tall_Allen]

Hi again Tall_Allen. Thanks for being our go-to person for some good info and data on anything to do with PCa. I do have a few more questions;

Do you have any data on the following;

1: What is the ratio these days of people electing to do RT /HT vs. just RP and is it correct that both procedures seem to have an even outcome on the success rates of OS?

2: Is there any data that suggests that even after RP that there will be a need for RT/HT as well?

3: What are the long-term effects of HT on the body?

4: What are the chances of developing more cancers (bowel/bladder) when using RT and are there any particular types of RT that are worse than others for this happening? Urologists here seem to suggest this is one of the reasons why RP is better than RT.

Thanks again for all your help. Have you ever posted what your story is? Would be great to know. 🙂

[Tall_Allen in reply to Mike58]

1. IDK. OS is definitely the wrong endpoint.

2. mskcc.org/nomograms/prostat...

3. You mean after adjuvant HT? There are no long-term effects as long as testosterone recovers that I am aware of.

4. No one knows for sure, but on the order of 1 in a thousand. Less with very precise IGRT radiation delivery like SBRT.

prostatecancer.news/2016/08...

jamanetwork.com/journals/ja...

thegreenjournal.com/article...

[Mike58 in reply to Tall_Allen]

Wow, very fast with the responses. Thank you so much.

[Sandy752 in reply to Tall_Allen]

13 years ago, I had 40 does of radiation but was not on ADT. Back then the standard in Canada was to see if the radiation cured you before adding ADT. It did not cure me and once my PSA was 2 above the low point that (took 30 months) I went on Lupron and am still on it and nothing else.

[Mike58 in reply to Sandy752]

13 years of no cancer after only having RT is a pretty decent outcome. What was your Gleason score? I'm guessing the HT is now doing the job of holding it at bay - more RT coming up . ??

[Sandy752 in reply to Mike58]

Gleason score was 7 with 10 of 12 samples cancerous. PSA currently 0.39. Oncologist says no further medications will be added until PSA reaches 2.0. There was no mention of further radiation.

[maley2711]

Hmmm.....just a guess that delaying HT for 6 months after RT has never been tested......so we couldn't say that would be OK. Longer durations of adjuvant HT have given better results, but IMHO we cannot say that in all cases RT would fail without concurrent HT. while studies have resulted in the SOC of 18-24 months, I recently read a deep dive of some MARCAP data that showed a SIGNIFICANT benefit to "just" 12 months of HT, for a groups of thosuands of patients almost evenly split between intermediate and high risk. men. The endpoint for the study was OS, overall survival, not cancer specific survival........longer than 18-24 months improved metastasis free survival, but not overall survival. what should be our goal then?

[Mike58 in reply to maley2711]

Yeah you make a valid point. I'm not about to become a guinea pig with trying this idea

[tcott54]

In terms of the RT, have you looked into SBRT or HD Brachytherapy. Both appear to have good success rates and much shorter courses of treatment.

[Mike58 in reply to tcott54]

Yes, I'm in discussions with my RO on this at the moment. I just need to see a clear pathway of treatment if I am going to head down the track of RT and HT. Of course, I still have my urologist in the background telling me I'm a good candidate for Surgery as well. This entire decision-making process is fraught with complexity and emotion and sometimes it seems to almost come down to a 50/50 flip of a coin. 😱

[conbio]

I chose NOT to have RP (G 4+5) because the studies show that the combination of ADT, EBRT, and Brachy were more effective - much less recurrence and higher longevity. I had ADT for 18 months and never stopped rock climbing, mountain biking, or ski mountaineering.

When the EBRT was full on (24 sessions) I did get cumulatively tired at the end of the week, bouncing back over the weekend, and tired by the end of the whole session. Working should not be an issue. I was 65 when my treatment started.

[Mike58 in reply to conbio]

Your post gives me great relief Conbio, - but I'm guessing at 65 (same as me) that you are probably a fit human specimen and not an unfit potato like me. 😩

[maley2711 in reply to Mike58]

Yes, there seems to be a consensus that a diligent exercise program generally reduces the severity of HT side effects. If you go that route, it would be a good idea to have ana inexpensive DEXA/bone density scan !! Yes, data show it probably is a 50/50 proposition, unfortunately. No tsure if anyone has mentioned.....one negative is that if RP fails...and it is NOT uncommon for 4+4, then the salvage treatment is radiation......so the side effect profiles of 2 different treatments. With RT and HT simultaneously, in some ways the same problem. Pick your poison??? Or , be positive, and assume you wil be one of the many men who have had little complaint about about either RP or RT+HT options as far as SEs. IT would be great to have a totally unbiased and very astute PCa expert Doc to go thru this with you.....but I think those Docs are in short supply!!

[studioj]

My husband, also a Gleason 8, chose RP because the RT requirement of 18-24months ADT was a dealbreaker for him - his work requires precision concentration and didn't want to risk brain fog. He also had an enlarged prostate and would have needed additional treatment to deal with that, so the surgery for him was a one and done. He's only one week post op and has had an easy recovery, no pain meds or GI issues, catheter out for only one day and he's been walking for hours a day and working from home, wearing pads for minor leaks. So far happy with his decision. As others say, choosing the right surgeon is crucial.

[Mike58 in reply to studioj]

Thanks for sharing your experience thus far. I so hope everything continues on in a positive way for you both. If only the RT would do the job without the dreaded ADT, but thats not the way it works and so I can sort of understand why RP can certainly come into play. All the very best.

[studioj]

The process is overwhelming, especially for G8. Many second, third & fourth opinions. My husband is two years from retirement - loves his work and didn't want 18-24 months of HT to get in the way. Also he has friends/relatives with excellent RP results so that influenced his decision. Obviously no guarantees, no path results yet, but ADT with adjuvant/salvage is usually a much shorter course. And as everyone says, you can have radiation after surgery but not the reverse.

Wishing you the best. You will feel a lot better when you come to a decision. Happy anniversary and happy travels!