Update in my continuing journey - Prostate Cancer N...

Prostate Cancer Network

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Update in my continuing journey

PCInPA
PCInPA

Just a quick update on my continuing journey.

OLD STUFF RECAP

58 yo. Psa 8.4M

MRIpi-rad 4

Fusion plus random 30 cores. Gleason 3+3 and 3+4

97cc prostate

Local uro gave standard answer of surgery good, radiation really bad, downplayed risk of side effects.

NEW INFO

Had bone scan. Results from that look good.

Had Polaris genetic screen. That says I am not great candidate for active surveillance.

NCCN Risk = Favorable Intermediate

Prolaris Molecular Score = 4.2

Risk when pursuing active surveillance= 6.4% DSM (disease specific mortality)

10 year Risk when pursuing active treatment (single modal) = 4.5% METs

Met with urologist / oncologist at Fox Chase (center of excellence). Unlike local uro, he was pretty honest. He feels I am a good candidate for either surgery or radiation with high likelihood of good outcomes either way. He was very honest about risks and his numbers seem consistent with real data versus wishful thinking. TAs checklist of questions was a great help. IF I were to do surgery, I think I would use him but, that is still a big IF. . My spouse did ask the, "what would you do question". Not surprisingly he said surgery but I respect his reason why. He did not say radiation is bad, that you have no options if radiation fails, etc. He said that for him it would be because of the greater certainty which comes from biopsy of the whole gland and being able to use PSA as a measure afterward. Fair enough.

Next week I meet with radiation oncologist at Fox Chase. Hopefully, I can come to a treatment decision after that.

Unless I learn I would not be a good candidate, for me SBRT or Brachy still seems like the lesser of evils. As I told my spouse, for me it is about balancing quality of life with length of life.

My one concern with radiation is that I currently do have BPH. I take daily afuzosin which works well for the retention, no nocturia issues.. I understand that you can have retention issues after radiation and there may not be many options to treat it should that happen?? I'll certainly ask radiologist about that.

In a side note, when this all started I was certain I would go for Tulsa even though I would likely go into debt to do so. Unfortunately, science reared its ugly head and the efficacy data simply is not there. Spending $50k only to then need surgery or other in 2-3 years did not make sense to me.

Stay tuned.

19 Replies

Glad those questions were useful. Which RO are you seeing at Fox Chase? Eric Horwitz is an expert at HDR brachy.

I have this article from the Philadelphia CyberKnife Center. Excellent outcomes. Sadly Luther Brady died a couple of years ago. I don't know who he passed the baton to. Worth a visit:

frontiersin.org/articles/10...

I had BPH, controlled with Rapaflo before SBRT. Was pissing like a racehorse within a couple of months. I think you can expect more acute urinary symptoms with HDR brachy, but they should pass quickly.

Here are questions for SBRT and HDR brachy:

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

I agree that some guys won't feel comfortable not getting a pathology report. I didn't care what was in there, as long as I'm cured. And either way, you have to wait and see what PSA does. That's why I recommended not asking - we're all different. BTW - here are questions to ask yourself:

prostatecancer.news/2017/12...

PCInPA
PCInPA in reply to Tall_Allen

Thanks Allen. I have read through much if your material and found it tremendously helpful. Radiation is a bit more mysterious for us novices. One thing that might be helpful on your "what to ask" document could be corresponding "what you are looking to hear". My fear is that the answers to some of the questions may be meaningless to me. Yes, I shall continue to do my homework but I am drinking from the firehose!

I am meeting with Dr. Hallman although, after reading your message, I have just requested an additional consult with Dr. Horwitz. I have yet to determine who the best prostate SBRT docs in Philly area are.

Any thoughts on CT vs MRI guided SBRT. If it were not on other side of the country I would seriously consider enrolling in MIRAGE study at UCLA. Staying out there for a couple weeks would not be a problem, the follow up visits would be.

Everyone should read your " questions to ask yourself" document.

Thanks again.

Tall_Allen
Tall_Allen in reply to PCInPA

The purpose of many of the questions is to give you confidence that these things are always considered. It's not important for you to evaluate dose constraints, for example, but I think it is comforting to know that the unintended doses to organs-at-risk are carefully considered. This is a large part of what ROs do, and they seldom get to brag about it - they are usually happy to "show off" and will feel complimented that you are interested (in my experience).

I am intrigued by the Viewray MRIdian linac, and eagerly await the results of Kishan's randomized trial. I have no idea whether it will make a minimally important difference to the patient. It is slower than the arc linac, but equally slow to the cyberknife linac.

You could do the follow-up visits via telemedicine. I found that the RO really didn't physically do anything. I just got PSA and testosterone, and filled out some questionnaires (I was on a clinical trial) - nothing you can't do from Philly. If to need to follow-up with a urologist, you can do that locally.

PCInPA
PCInPA in reply to Tall_Allen

Hmm, this is interesting. I just discovered there are two Viewray Linacs in PA. One at Hershey still being installed, the other is running for over a year at Tower Health in Reading about 40 minutes from me. Looks like one more consult!

Tall_Allen
Tall_Allen in reply to PCInPA

I honestly don't think it's worth traveling for.

PCInPA
PCInPA in reply to Tall_Allen

Thx. Just to clarify. If I do get SBRT, the travel distance will be equivalent for either Viewray MRI guided or other CT guided. Obviously, the experience and outcomes of the docs is a big factor.

Assuming I am comfortable with experience and skill of either RadOnc, should the choice of system impact my decision?

Tall_Allen
Tall_Allen in reply to PCInPA

Not as far as we know. Amar Kishan at UCLA is running a randomized clinical trial to see if there is a perceptible difference for the patient. The biggest known benefit is that no invasive fiducial placement is required with Viewray. The biggest downside is that it is a lot slower than an arc linac (but similar to a CyberKnife linac)

PCInPA
PCInPA in reply to Tall_Allen

All other things being equal, skipping an invasive procedure, fiducial placement, seems like a significant benefit?

Tall_Allen
Tall_Allen in reply to PCInPA

They just insert 3 gold fiducials, the size of rice grains, and it is increasingly done transperineal to avoid sepsis. Because they are only putting it in and not yanking tissue out, it is less painful. It helps if the Uro slowly injects lidocaine on the way in. I didn't find it to be a big deal, but I agree that avoiding invasive procedures altogether (fiducials and SpaceOAR) is ideal. I did like the very short VMAT treatments (<10 minutes) however. A full bladder for 40 minutes might be a problem for some, especially if they have urinary difficulties already.

PCInPA
PCInPA in reply to Tall_Allen

Thanks TA, insightful as always. I meet with radiation oncologist this week so first step is to see what they say in my case.

Because I like to drive myself crazy, and am a techie at heart, it looks like the other big player similar to Viewray is the Elektra unity system which uses a 1.5t mri versus the .35 of the Viewray. I see they have that system at MD Anderson in Camden which is essentially same distance as my going to Philly or Reading.

elekta.com/radiotherapy/tre...

Tall_Allen
Tall_Allen in reply to PCInPA

The one at UCLA is the Viewray MRIdian with a 1.5T MRI. They used to have the .35T MRI until a few years ago. I saw the images the older model produced, and it was poor. But I've seen the images on the 1.5T Viewray, and they are excellent.

My advice to you is to not fall in love with the technology. You'd be amazed at how little difference it makes - which is why Dr Kishan is running a clinical trial - if it were obvious, he wouldn't bother. Between CyberKnife, Viewray or Elekta 1.5T, or any VMAT linac, go with the one that entails less driving - a much more important consideration. If equidistant, go with the RO that has the most prostate experience. Unlike technology (at this level), anatomy and care in planning can make a big difference.

PCInPA
PCInPA in reply to Tall_Allen

You are indeed a living encyclopedia on prostate care! I was not aware that Viewray's newer systems are 1.5t.

Yes, I need to be wary of my bias towards newer technology. Totally agree that the person behind the machine is far more important. If you ask me to play a Steinway piano it will still sound like a 4 year old banging on the keyboard!

AlanMeyer
AlanMeyerModerator

I think Tall_Allen has already given you advice as good as any you're likely to get elsewhere on this planet. I'll just add that I think you've done better research and preparation than most of us have done - certainly better than I did before my treatment many years ago.

Best of luck with whatever you finally decide to do.

Alan

I merely approach this from the standpoint of what I did do. At 57 I had numbers similar to yours. My chief concern was living another 30 years. In my way of thinking, riding a cancerous gland from my body just made sense. I had trust in the head of urology at Penn State Hershey who has don’t Thousands of RARP’s. 18 months out no regrets. Bladder cleaned up quickly and sexual function is getting back to normal. The 15% chance or recurrence and the 1% mortality risk is something I can live with.

PCInPA
PCInPA in reply to CHPA

When it comes to this disease, there is no perfect option. We each do what we think is best and once that decision is made we are all taking a roll of the dice.

I have certainly not taken surgery off the table, rather I will weigh the many pros and cons and decide what my own risk tolerance is for each option. There is no right answer, only what is right for each person. The only wrong answer is the one made blindly without doing research and seeking out multiple opinions. That's what is great about these forums, hearing from guys like yourself and the factors you considered.

Another wildcard is where technology and science might be in 10-20 years. If you can control the progression for 10-15 years via an option that preserves QOL, what options might be available if / when you do have a recurrence. Again, a roll of the dice.

So true. If we were twenty years down the road we would probably be getting an mRNA shot at the urologists office and wouldn't be having this conversation. Alas here we are in 2021 with hope on the horizon. If the odds were weighted on surgery or on radiation everyone would go one route or the other and there would be little discussion. Having somewhat equal outcomes it puts the decision in the hands of people who aren't really well trained to make such decisions. I went with my gut, get it out, knowing I could live with the outcome. But I also see the attractiveness in radiation.

My brother in laws brother, was diagnosed with Gleason 10 PCa in his late 50's. He had surgery followed by ADT. When they discovered spread a year or two later he started down a road of kemo and other experimental procedures supervised by Hopkins and the National Cancer Institute. He passed away a few months ago a few weeks before he planned to retired leaving a wife and three adult children. I didn't know him well so no condolences called for. I only mention to keep in mind that while the survival rate of PCa is very high it is still not 100% and aggressive action in my mind is called for. We only have one life... this life. Future generations hopefully will not have to deal with this disease, but we sadly do.

I had HDR Brachy and 25 sessions of IMRT nearly 4 years ago and am still using Rapaflo. Coincidently, just in the last couple of days I tried to wean myself off it, only to go back on it tonight. A man's gotta pee.😬

PCInPA
PCInPA in reply to V10fanatic

I hear you! I've been on BPH meds for about 5 years now, fortunately they do the trick. Started with flomax, did not like that so went to Alfuzosin which was equally efficacious without the retorgrade side effects. Then I heard cialis might actually treat bph while reducing prostate size. That was the best of them as any side effects were beneficial.

Grrrrr!

I met with my original urologist today, mostly because I had appointment set up and to go over most recent test results. My spouse wanted to come along so who am I to argue!

Anyhow, Urologist goes full court press on why someone my age should essentially only be considering surgery and not radiology.

In this case he did not say Surgery is more or less effective at treating the disease. Rather, the essence of the message was:

1. that you are trading off short term risks for long term.

2. Yes, you may have AE's from surgery (incontionence or ED) but all of those can be treated with meds or other surgery.

3. Should you encounter the possible AE's from radiation such as urethral strictures, rectal issues, etc. you are basically out of luck.

4. With surgery you may have AE's early on. With radiation you may have AE's early on and are likely to see other AE's years later.

So now, on top of sorting the facts from the hype, I get the spouse to pile on! Ugh!! Hopefully, when she joins me for meeting with Radonc, on Thursday, he talks her off the ledge.

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