SBRT Procedure : 72 year old diagnosed... - Prostate Cancer N...

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SBRT Procedure

Scvol profile image
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72 year old diagnosed with PCa in 2013. Remained on active surveillance until last year. I’m scheduled to undergo SBRT next month at UCLA Medical Center. Dr Kishan will conduct the procedure,

7/10 (60% pattern 4, grade group 3). Carcinoma present 2 of 3 cores approximately 10% of the tissue. My decipher score is 0.37, Low risk.

I’ve reviewed the side effects. What I’d like to know is what would you do differently both pre and post procedure?

Thanks. Ralph

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Scvol profile image
Scvol
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56 Replies
Tall_Allen profile image
Tall_Allen

I cant stress enough the importance of vigorous exercise. It increases oxygenation, which helps the radiation do its job, while protecting healthy tissue. I took NSAIDs to prevent inflammation - I figure it is easier to prevent inflammation than to stop it once it gets started.

Here are expected side effects:

prostatecancer.news/2018/10...

PTvsPC profile image
PTvsPC in reply toTall_Allen

Tall, is SBRT considered a type of focal therapy? Or is it a different class?

Tall_Allen profile image
Tall_Allen in reply toPTvsPC

No, it is almost always whole-gland.

PTvsPC profile image
PTvsPC in reply toTall_Allen

I can confirm that now. I saw Dr. Kishan yesterday and he said they only do whole-gland SBRT. Support staff told me they're not a fan of any focal therapy. I suspect, as you've been saying for some time now, that it isn't delivering on the hoped outcomes. City of Hope told me I wasn't a good candidate... I suspect they tell everyone the same thing. The UCLA assistant I spoke to nodded when I mentioned that.

I guess it's just not there yet.... It's kind of a shame because in my case, I have a small focus only on the left side. Of course, cancer can start again anywhere... and I guess it's likely that it would - not so different from breast cancer.

addicted2cycling profile image
addicted2cycling in reply toPTvsPC

FOCAL - yes -- no and who do you believe???

grandroundsinurology.com/po...

grandroundsinurology.com/po...

PTvsPC profile image
PTvsPC in reply toaddicted2cycling

Good question! I'm going to watch those videos.

Also, I'm going to see Dr. Reiter on Wed. I'll ask him all about focal therapies.

Is there a reason that focal therapy plus ADT wouldn't work?

What about ADT for a year or two to kick the can down the road hoping for a newer treatment since so many new ones are right around the corner? Maybe that's a dumb question, but I think with the speed of medical/technological advancements, there are no dumb questions.

Thoughts?

addicted2cycling profile image
addicted2cycling in reply toPTvsPC

NOTE - Cryo Focal has been around for some time.

NOTE #2 - It is imperative that a Trans Perineal 3D Prostate MAPPING Biopsy be performed and NOT rely on Imaging methods for locating the PCa.

pubmed.ncbi.nlm.nih.gov/187...

PTvsPC profile image
PTvsPC in reply toaddicted2cycling

So after watching the videos, it seems like the main issue is knowing long-term outcome. One of the issues is that PCa is multi-focal and that it's so commonly underdiagnosed. Whole-gland treatment solves that problem.

It gets back to the idea that we need to figure out what causes PCa and there aren't clear answers for most patients unless there's a genetic predisposition (which I don't have).

Focal treatment might work in the short/mid-term, but there's no real data rearding long-term outcome. And the skills and technologies that are needed to effectively eradicate the main drivers of metastasis is not clearly understood.

Seasid profile image
Seasid in reply toPTvsPC

You could consider Nano knife if you are a suitable candidate and you could even repeat it if you are a suitable candidate.

Professor Stricker internet site about Nano knife focal treatment

phillipstricker.com.au/pros...

PTvsPC profile image
PTvsPC in reply toSeasid

One of my good friends received NanoKnife treatment last year and it seems it was successful so far. I called his doctor's office and they told me they no longer offer it because the doctor wasn't totally satisfied with many of the patient outcomes and also insurance doesn't want to cover it any longer.

I will definitely be asking about all focal therapies when I speak with Dr. Reiter on Wednesday.

Dr. Kishan told me in no uncertain terms that he does NOT do focal SBRT.

The way I look at my job as patient is to get as much info about possible treatments as I can including interviewing several respected doctors. So far, I haven't had any high level uros recommend any focal treatment.

Dr. Finley, my previous uro at Kaiser who I highly respect, initially told me I was a good candidate for HIFU, but later said he was "less enthusiastic" (his words) about it being a good treatment for me. Basically, it sounded like he thought it was just a way to kick the can down the road. At best, I would still have to have regular MRIs/biopsies, etc. At worst, it could still metastasize, although that doesn't seem too likely.

At this point, I'm still open to considering any treatment, although I'm leaning toward the clinical trial of SBRT + Apalutamide. If I go that route, I'll make it my occupation to exercise, eat right and stay mentally focused as much as possible. Work will take a bit of a backseat during treatment.

Tall_Allen profile image
Tall_Allen in reply toPTvsPC

You are quite wrong that we lack long-term data to make a decision. In fact, it didn't take very long to find out. Focal doesn't work! Here is all the data:

prostatecancer.news/2016/12...

prostatecancer.news/2021/03...

I wish there were some intermediate therapy that worked as well as radiation, without the potential side effects. There isn't, no matter how badly you want it.

PTvsPC profile image
PTvsPC in reply toTall_Allen

Thanks for sharing your articles, Tall. I know you’ve done a lot of research on focal therapy, and I truly appreciate and respect that.

However, your response is dismissive and overly absolute. Saying ‘focal doesn’t work’ without room for discussion is a gross oversimplification. Different patients prioritize different factors - what isn’t right for you might be worth considering for someone else, despite the limitations.

Dismissing possibilities outright is short-sighted and shuts down dialog… I’m here for a respectful, open-minded conversation. Let’s keep it constructive and respectful.

Seasid profile image
Seasid in reply toPTvsPC

Professor Stricker internet site about Nano knife focal treatment

phillipstricker.com.au/pros...

PTvsPC profile image
PTvsPC in reply toSeasid

Thanks for the link!

Tall_Allen profile image
Tall_Allen in reply toSeasid

Here is the actual data on IRE:

E. Irreversible Electroporation/NanoKnife (IRE):

In a study of focal IRE, which is largely a non-thermal form of ablation, 4/25 patients (16%) were found to have residual cancer in the ablation zone. In another study that used mpMRI to detect residual cancer up to one year after treatment, 9/30 patients (30%) were found to have residual cancer in the ablation zone. Colletini et al reported in-field treatment failures by 18% of low and intermediate-risk patients detected via mpMRI-targeted biopsy after 6 months. Valerio et al. reported that 6/34 patients (18%) had residual disease. Guenther et al. reported that the recurrence rate at 5 years was 5.6% for Gleason 6, 14.6% for Gleason 7, and 39.5% for Gleason 8–10. Gielchinsky and Lev-Cohain reported that 4/13 (31%) patients had biopsy-detected recurrence. Zhang et al. reported that 6-months after focal IRE, 46% of low- and intermediate-risk cancer still had biopsy-detected cancer outside of the ablation zone and 17% still had cancer inside the ablation zone.

prostatecancer.news/2016/12...

(see the article for clickable links to the peer-reviewed clinical trials on IRE)

IRE electrocutes the patient, so he has to have full heart-stopping anaesthesia and must be on a heart/lung respirator during the procedure. It seems a lot to go through for such poor oncological outcomes.

Seasid profile image
Seasid in reply toTall_Allen

I didn't know about the need for heart lungs machine. It is very interesting to know.

If you are eligible and the procedure is successful that looks good to me. I agree that the selection of the right candidates is crucial.

If you're lucky you could avoid full gland radiation and hopefully cured. You could even repeat the procedure. For me it is better than with 3+4 prostate cancer waiting that your PSA is 20 and not doing anything. I know someone like that since his PSA is rising from 10 to 20 in about 5 years. I believe that is also experimenting.

Tall_Allen profile image
Tall_Allen in reply toSeasid

Why would anyone want a less curative treatment when he could get a more curative treatment with low toxicity?

Seasid profile image
Seasid in reply toTall_Allen

I totally agree with you.

Unfortunately some people have a partner etc and can't decide himself. I hope you see my point.

I have seen someone who came with his partner and I understood that his decision making process is totally different than mine.

I can't even understand why would someone with the 3+4 Gleason score cancer wait 5 years than his PSA goes from 10 to 20 and still not considering the sbrt radiation with the MRI Linac Elekta Unity machine? People have different lifes and different priorities. My priority is not the same as their priorities in life.

Seasid profile image
Seasid in reply toSeasid

DeepSeek said

Irreversible Electroporation (IRE) is a non-thermal ablation technique primarily used for tumors in locations where surgery or thermal ablation is high-risk (e.g., near blood vessels, nerves, or ducts). While the procedure involves delivering high-voltage electric pulses to destroy cancer cells, it requires precise synchronization with the cardiac cycle to prevent fatal arrhythmias. This necessitates general anesthesia and, in some cases, temporary cardiac arrest with cardiopulmonary support—a complex and invasive approach. Here’s a breakdown of the considerations:

### **Key Context for IRE Use**

1. **Target Population**:

- Reserved for **inoperable tumors** or cases where other treatments (surgery, chemo, radiation) have failed or pose undue risk.

- Often used for pancreatic, liver, or prostate cancers near critical structures.

2. **Advantages Over Alternatives**:

- **Tissue Sparing**: Preserves blood vessels, ducts, and nerves by selectively targeting cell membranes (sparing extracellular matrix).

- **Non-Thermal**: Avoids heat/cold damage, reducing collateral injury risks compared to radiofrequency or cryoablation.

3. **Oncological Outcomes**:

- **Mixed Evidence**: Outcomes vary by tumor type and location. For example:

- **Pancreatic Cancer**: Some studies show local control and survival benefits in select patients (e.g., LAPC), though not curative.

- **Liver Metastases/Prostate**: May delay progression or alleviate symptoms.

- **Not a Cure**: Typically palliative or bridge-to-surgery, not a standalone solution. Success depends on tumor size, location, and patient health.

### **Risks vs. Benefits**

- **Procedural Risks**:

- Anesthesia complications, infection, bleeding, and rare cardiac events despite precautions.

- High technical skill required to avoid complications (e.g., improper pulse delivery).

- **Benefit Rationale**:

- For patients with limited options, even modest survival extension or symptom relief may justify risks. Quality of life (e.g., pain reduction) is a key factor.

### **Evolving Data and Patient Selection**

- **Improved Outcomes**: Newer studies (e.g., NanoKnife® system) suggest better precision and safety with experience. Patient selection—small tumors (<3–5 cm), early-stage disease—is critical.

- **Ongoing Research**: Trials are exploring IRE combined with immunotherapy/chemotherapy to enhance efficacy.

### **Conclusion**

IRE’s invasiveness and marginal survival benefits make it unsuitable as a first-line treatment. However, in carefully selected patients with otherwise untreatable, strategically located tumors, it offers a valuable niche option. The decision hinges on multidisciplinary evaluation, patient priorities (e.g., palliative vs. curative intent), and evolving evidence. Transparency about expectations (prolonged survival vs. symptom control) is essential.

DeepSeek said

Tall_Allen profile image
Tall_Allen in reply toPTvsPC

Job 1 with any kind of prostate therapy is to thoroughly get rid of all the cancer in the prostate. RP does that. RT does that. As I have shown you, there isn't any kind of focal or whole-gland thermal therapy that does that.

You may be right that there are some patients out there who don't want a cure. I can't imagine going through a procedure and paying money out of pocket to not be cured, but those people will never be convinced by actual data. I think they suffer from confirmation bias that is clouding their judgment.

I don't fault patients. They have been duped by doctors and institutions that see a lucrative cash cow in focal therapy. Notably, the FDA looked at all the available data at that time (as you have seen if you read the articles, there is much more damning data now) and refused to approve HIFU as a treatment for prostate cancer. The lawyers then came back and asked for approval of HIFU to remove prostate tissue.

If you have data that I have not included, show it. Rather than being general, I have been very specific. If you have any data that I have not included, I will look at it.

PTvsPC profile image
PTvsPC in reply toTall_Allen

The idea that surgery or radiation “thoroughly get(s) rid of all the cancer in the prostate” is an inaccurate assumption considering significant recurrence rates. If the standard is 100% cancer elimination, then no treatment truly achieves that. Then it becomes an issue of how best to manage the possibility of cancer returning and weighing that against age, quality of life and other issues.

I think it’s unfair to suggest that patients who consider focal therapy don’t want a cure. The decision-making process is more personal and nuanced than that.

Also, your point about doctors/institutions and financial incentives is valid, but it doesn’t automatically invalidate all focal therapies. That’s why I’m exploring all options and discussing them with respected doctors who are at the cutting edge.

I don’t currently have any data that contradicts yours, but I’m open to seeing new studies and advancements as they become available.

Tall_Allen profile image
Tall_Allen in reply toPTvsPC

Surgery obviously eliminates all cancer in the prostate. Cancer that has already spread outside of the prostate is not eliminated by surgery or by thermal ablation within the prostate.

BRFS with SBRT in intermediate risk patients is about 97% for intermediate risk patients in 5 years with very low toxicity. Only about 20% of the recurrent cancer is within the prostate, so radiation gets rid of intra-prostate prostate cancer in 99+% (virtually all) intermediate risk patients. I expect it will be all with universal PSMA PET/CT screening of unfavorable intermediate risk patients.

prostatecancer.news/2016/09...

By contrast, the clinical recurrence rate at 2 years with HIFU is consistently about 40%-50%. With longer follow-up it only gets worse.

"I think it’s unfair to suggest that patients who consider focal therapy don’t want a cure." I'm saying, they have low odds of getting a cure. What "nuance" is there to getting a non-curative treatment.

"automatically invalidate all focal therapies. That’s why I’m exploring all options and discussing them with respected doctors who are at the cutting edge."

If you would read that review article, you would see that the lack of cure applies to all thermal ablation therapies. The doctors who are more like used car salesman, always say that they are different, but when they publish, if they publish, they aren't. I've suggested to some I talked to to do a study among all their clinical failures to determine why it fails. But so far, crickets.

"I don’t currently have any data that contradicts yours..." Then why are you debating my conclusions?

PTvsPC profile image
PTvsPC in reply toTall_Allen

To be clear, I'm not debating your conclusions. I'm trying my best, in a diplomatic way, to have an open discussion about this topic and where focal therapy might be headed because I'm going to be making choices about my own treatment. I have my own concerns about my own QOL and well being and, at the moment, ALL options are on the table. What I don't need is somebody telling what does and does not work FOR ME. I'm not a statistic and I have my own unique set of circumstances that my doctor and I will carefully evaluate. Until then, I'm doing my due diligence.

I'm avoiding absolutism in my remarks because it doesn't very well serve the spirit of discussion. Nobody discounts the effort you put into the research you've done, but you don't have a corner on the truth either. So, while I appreciate your comments and short, often condescending, dismissive and defensive responses, I know that the REAL answers will come from the doctors I'm carefully choosing.

I've carefully read all the articles you've thrown at me. I've also put them into AI models to be sure I'm understanding the nuances. It's been helpful.

I take the good with the bad when speaking with you, sir. I appreciate and tolerate you simultaneously, but mostly I am grateful for the work and research you've done and posted here.

Tall_Allen profile image
Tall_Allen in reply toPTvsPC

"What I don't need is somebody telling what does and does not work FOR ME." So, elucidate me, what works FOR YOU? If getting rid of the cancer isn't Job1 FOR YOU, what is?

When I was hunting for the best treatment FOR ME, I was choosing among options that could all cure me, first of all. After that, MY main requirement was to find the option that retained my erectile function the best. If cure isn't Job 1 FOR YOU, what is? You don't seem able to answer that. You use terms like "it's nuanced." Well, can you express in words what that vague nuance is? I've found that the only way for a patient to get what he wants is to define what he wants.

Seasid profile image
Seasid in reply toTall_Allen

Maybe he can't decide for himself because he is not single like you and me? Etc. Etc.

PTvsPC profile image
PTvsPC in reply toTall_Allen

I thought it was obvious what I wanted. But since it isn't, I'll explain....

Before I do, first of all Tall, the reason I'm on this site is to have another layer of support and learning. I'm currently weighing options based on what doctors are telling me. For example, based on where my tumor is located, two surgeons have told me I have 100% chance of lifelong side effects as they'll need to take the left nerve bundle. OTOH, having surgery will give me the clearest answer of whether the cancer was successfully "cured" or not. Being SINGLE, young (60) and in excellent shape (I still play high intensity sports), I have to decide if I can live with those QOL problems if I go with surgery. One of the surgeons says there are studies coming out that may show I can get by on just the right nerve bundles.... but I need to learn more. If that's true, maybe surgery is still in the running.

Since I live in LA, I have access to UCLA, City of Hope, Cedars Sinai, etc. I've been to COH and met with two docs there - a surgeon and RO (to discuss Exablate). I went to UCLA last week to discuss SBRT/ADT and Wed I'll see a surgeon/MO to discuss surgery and other options, if there are any, including trials. In a few weeks, I'll meet with Dr. Ahdoot who practices the Retzius surgical technique at Cedars.

What do I want?? I want no cancer and I want maximum QOL. I fully expect to live to be 100 years old. But what's the point if life sucks as I age?

For me, there's no treatment that'll 100% guarantee both. Current focal therapy most likely just kicks the can down the road, but gives me little or no side effects today and the possibility that a newer, more effective treatment will emerge to finally cure it. SBRT+ADT potentially cures me, but screws my QOL up for at least a year. Surgery potentially cures me, but most likely really screws up my QOL.

Right now, I'm leaning towards SBRT+ADT. I still have a PSMA PET scan coming up that will give more information and help inform the best treatment.

So, I've NOT been arguing your research, Tall. I'm asking about it. I'm asking anybody and everybody about it: clients of mine, anybody on this site, other support groups I'm in and the top doctors in Los Angeles... or anywhere for that matter. I'm looking for more than just an absolute answer and being told I'm an idiot for considering everything that's available. I'm looking for thoughtful discussion - something you haven't offered at all, while many others here have and for which I'm grateful.

As I speak to more experts, yes, I might consider focal therapy knowing that it most likely doesn't cure me today. I personally can live with that pending more information from experts who are at the cutting edge. I have my own level of risk tolerance which is balanced between my desire to live a long healthy life and minimal side effects. If the experts tell me the risk is too high for metastasis in my case, that would end the discussion. Otherwise, my treatment might travel on a larger arc. For you, that apparently would be a non-starter.

What you don't see is that each person has their own approach to the disease. You think what has worked best for you is what needs to work best for everyone. Rather than have a thoughtful conversation, you strong-arm your opinions on folks. You get defensive about anyone questioning your research. It's exhausting frankly.

But I get it. You think focal therapy is a scam and that doctors who promote it should be sued. I neither agree nor disagree because I don't have all the facts. As I continue my journey, I will make my decision in a timely manner based on what the experts tell me and what I can live with. That's all I got... except for this story:

My dad's best friend died of prostate cancer a number of years ago. He was a highly respected pastor in West Texas. He was a very young and otherwise healthy 80 year old and very active in the community. He was diagnosed with Mets to the bone. You're not going to like what his decision was, Tall (neither did his wife). After carefully weighing what treatments were offered to him, he chose to... wait for it.... DO NOTHING. He told me he wasn't willing to go through all the treatment processes and suffer like so many of his friends did. His decision, btw, wasn't some weird "god will take care of me" thing. He was a Methodist minister - highly educated in many subjects... not a bible thumper. He made a decision he could live with and he used it as an opportunity to discuss the inevitability of death. He presented death and dying workshops all around the region KNOWING he was going to die fairly soon.... and he did. He died on his own terms. That was his choice. He took the opportunity to do something with his situation that felt meaningful to him. To get to that decision, he engaged in thoughtful discussion with many people including my dad (also a Methodist minister), his wife, other community leaders, doctors, etc, then made his decision.

And while I know I won't make THAT decision, I want to engage in thoughtful discussion for anyone who will engage with me... including you. What I don't want is someone getting offended that I'm willing to turn over every stone while I have time to do so.

I hope that gives you some insight and answers your questions.

Tall_Allen profile image
Tall_Allen in reply toPTvsPC

Thanks, it wasn't at all obvious.

"I want no cancer and I want maximum QOL. " Both RP and RT give you no cancer in the gland. Focal therapy doesn't. You have to make a trade-off. I'm sorry -- I know it sucks, but that's what your options are.

Focal therapy "experts" are scammers, and you take what they say as truth at your peril. I have no skin in the game, and I am showing you all the data available. I'm not asking you to believe me. I'm showing you all the data -- you can and will make up your own mind. But if you want a cure, HIFU ain't it.

As for "experts on the cutting edge..." In HIFU, the cutting edge is using MRI to both gauge treatment dimensions and tissue temperature. Both Lawrence Klotz using TULSA-PRO and Behfar Ehdaie are running trials with such "cutting edge" equipment. As you can see, it doesn't make any difference.

PTvsPC profile image
PTvsPC in reply toTall_Allen

I hear you and I've heard you. I have no argument with you.

If I were to choose HIFU, it's not for a cure today.... it's to address QOL today and kick the can down the road... IF it's safe. It probably isn't prudent, but I'm going to be asking around.

Thank you for your input.

Tall_Allen profile image
Tall_Allen in reply toPTvsPC

Salvage therapy always has worse side effects than primary therapy.

Mike_B21 profile image
Mike_B21 in reply toPTvsPC

The problem with focal is the lesions that have not yet been identified. RP and RT have the same problem but they treat larger areas, leaving smaller areas to worry about.

PTvsPC profile image
PTvsPC in reply toMike_B21

Agreed.

tallguy86 profile image
tallguy86

Ralph, Allen is absolutely correct. Exercise, walking outdoors or indoors is really important. Eating veggies and fruits, keeping well hydrated, maintaining a positive optimism and practicing meditation and mindfulness is really helpful. Those were the things that helped me. I was on AS for almost 5 years before SBRT. My only side effect from the fractions was peeing like crazy! which subsided after 5 days. My RO gave me a prescription for AZO which was stronger than OTC. I used Cialis 2.5 mg a week prior and a month after the SBRT. This site and doing my research on SBRT and other options along with TA's insights really helped. Also speaking with friends and family was also a source of supportive care. Every person is unique. I didn't focus at all on the potential side-effects because I then have the potential to "worry" or become too "anxious" (It's why I seldom read any of the side-effects of medications or else I'd never use them! lol) I really wouldn't do anything different. It's been 5 years since my TX and I am doing great! Best to you! Joe

Scvol profile image
Scvol in reply totallguy86

Great to hear.

PTvsPC profile image
PTvsPC in reply totallguy86

Dr. Kishan STRONGLY suggested maintaining a diligent workout schedule.

rosenjpj profile image
rosenjpj

Agree that excercise and heart healthy diet (low fat, low carb) are the best things you can do for yourself before and after. Try to do what you can to stay centered (meditation, yoga) as well. Do your homework and join a prostate cancer support group. You are not alone and it really helps to talk with others who are going through similar challenges.

PTvsPC profile image
PTvsPC

I'm meeting with Dr. Kishan this Friday for the first time. Thanks for posting your questions and thanks to everyone who's replying - it's very helpful.

I'm meeting with Dr. Reiter the following week to discuss any other options as well.

Scvol profile image
Scvol

please let us know what you find that may be useful. Thanks

PTvsPC profile image
PTvsPC in reply toScvol

There's a new clinical trial to try Apalutamide on men (like me) with 3+4 intermediate favorable. The idea is that rather than shutting down testosterone generation, it blocks testosterone receptors. That means the body never stops making testosterone. Blood tests will show a HIGHER level of testosterone in the body, but the receptors won't receive it. It's also possible that Ap will be even more effective since it blocks other male hormones that may or may not contribute to cancer growth. The other benefit is that once off it, recovery is much more complete since the body didn't stop making testosterone. The downside is that patients have to take it 6 months longer since it only takes about a month for it to exit the system vs Lupron taking 6 months to exit. It's sort of a zero sum gain, I suppose.

It's not clear yet if I need hormone therapy, but he's leaning toward it. He says he doesn't want to under-treat in my situation since I have some large cribriform pattern and possibly EPE. PSMA PET scan is scheduled for a few weeks from now.

PTvsPC profile image
PTvsPC in reply toPTvsPC

And my Decipher score is .67 which is why he's leaning toward hormone therapy.

I asked if I could "force" myself to maintain a somewhat normal libido. He said it's not impossible, but would be very difficult.

I also asked if I could still build any muscle without testosterone. He said that's also very difficult if not impossible. Maintaining what you have is possible, though. He said he had a couple of recent patients that were in the fitness industry and were very concerned about losing their muscle mass. He said they both worked VERY hard to maintain it - it's their livelihood. He said they did a very good job, but it was hard work. I'm hoping to speak with those patients to get more details. If so, I'll share it here.

Hope4Happiness profile image
Hope4Happiness

I was going to the gym three times a week before my diagnosis, but I really ramped up the cardio right before my first treatment. I had also been vegan for many years before my diagnosis. During treatment, I didn't hit the gym, but I walked about two miles a day.

Right after treatment, I was prescribed low-dose sildenafil. At this point -- 3.5 years since treatment -- I don't know if it is making a difference, but I still take it as some type of "psychological security blanket."

PTvsPC profile image
PTvsPC in reply toHope4Happiness

Why didn't you hit the gym during treatment? Were you too fatigued? That's what I'm worried about and I wonder if I can power through. I've really been hitting it hard... doing 165 push-ups twice a week (not at once, but multiple sets), running sprints in between sets, walking a lot when not in the gym (via disc golf 1-2x's a week which is 3-5 miles each outing) and other exercise.

I really would like to continue sports - playing basketball, etc.... I'm worried I'll be too tired.

Hope4Happiness profile image
Hope4Happiness in reply toPTvsPC

I guess I could have pushed myself after each treatment, but it was less than a two-week period. I just took the time to relax. I just wanted to take it easy because there was some fatigue, but I just didn't want to be around other folks during my treatment. In 2021, there were still heavy COVID concerns.

Mike_B21 profile image
Mike_B21

12 years on AS sounds like a real victory. I hope you dont mind me asking, what changed to prompt your move to SBRT at this time? Wishing you the best of luck.

Scvol profile image
Scvol in reply toMike_B21

Not certain if the question was directed at me but I had 7/10 (60% pattern 4, grade group 3). Carcinoma present 2 of 3 cores approximately 10% of the tissue. My decipher score was 0.37, Low risk. I wasn’t confident to remain on AS. I chose SBRT based on studies. I chose UCLA Medical because of their track record and preciseness of treatment. SBRT very precisely targets radiation to the tumor while minimizing exposure to normal tissue, allowing for the delivery of a much higher radiation dose and without risk of postoperative complications and mortality.

Mike_B21 profile image
Mike_B21 in reply toScvol

Yes, I was asking you, thanks. Were those numbers much worse than while you were on AS?

Scvol profile image
Scvol in reply toMike_B21

My PSA started increasing and MRI showed suspicious area and biopsy revealed same. PSA from 2021 to present moved from 5 to 10 in that time frame. I’ve always had higher than the standard PSA readings. Since I was closely monitoring, quarterly tests and annual MRI it was time to pull the trigger. The current biopsy didn’t show any aggressive cancer however the 4 + 3 and 60% was enough to seek treatment. I follow Dr Mark Scholz and value his opinion as others. He has a lot of videos on YouTube that are worthwhile. If you haven’t check them out.

Mike_B21 profile image
Mike_B21 in reply toScvol

Thanks. I agree re Dr. Scholz. Excuse me for my lack of knowledge, I'm a new member of this group so I'm not exactly sure what you mean by your numbers. You have tumors in 10% of 2 cores? and they are Gleason 4+3? after 12 years your Decipher score is 37? Is that right?

Scvol profile image
Scvol in reply toMike_B21

Almost. Since I was monitoring closely I was trending in the wrong direction. I had 7/10 (60% pattern 4, grade group 3). Carcinoma present 2 of 3 cores approximately 10% of the tissue. 4+3=7. My decipher score is 0.37, Low risk. From my latest biopsy. It was time for treatment in my opinion.

Scvol profile image
Scvol in reply toScvol

I also got a second opinion on my biopsy from John’s Hopkins.

Mike_B21 profile image
Mike_B21 in reply toScvol

I hope everything goes well.

Scvol profile image
Scvol in reply toMike_B21

Thank you.

Scvol profile image
Scvol in reply toMike_B21

Mike, no sure I answered all your concerns. Let me know if you’d like to talk and I’ll send my number.

cybertreated2019 profile image
cybertreated2019

SBRT in 2/2019. Favorable intermediate PC. You already have good advice from the others. I run, bike, kayak, resistance train and anything else that doesn’t hurt several times a week. I echo the use of low dose cialys before, during and after treatment. It also made a huge difference in my peeing at night and I still take it every other day. No evening peeing for a long time and no ill side effects for me. I went with the SpaceOar, which may no longer be standard of care, but I still had bowel issues, urgency and frequency, for several months that have mostly subsided. I had a small PSA bounce 3 years post treatment, but went back down and has stayed around .2 the last two years. No regrets

Scvol profile image
Scvol

Thanks. Good stuff.

PTvsPC profile image
PTvsPC

Another question I asked, which may be irrelevant for me and others due to my age (60), was whether or not I could biologically father a child. He said 5% of patients can father a child naturally after treatment. In other words, it's very difficult, but very recently one or two of his patients actually did.

What he told me was that if I really wanted to pursue this, it's best to bank before the procedure. He also said not to try naturally for at least 6 months after treatment since sperm mutations might still be in the system - not good.

Alternatively, sperm extraction could be an option since the testicles will still create it, but now we're talking about IVF and all the issues that come with it including cost.

Again, better to bank it in advance... which is also expensive considering storage costs, etc.

PTvsPC profile image
PTvsPC in reply toPTvsPC

Btw, "expensive" is relative. My understanding is that it costs about $1000 for extraction and $100-$500/year for storage. Also, insurance may or may not cover it. Since I'm 60, Blue Shield may raise their eyebrows....

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