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Double Play Broken Up-- Urinary Issues

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Posted 10/6/2018 4:20 AM (GMT 0)
After extensive due diligence about treatment alternatives, including the help of my friends here on HW, I decided to go with the "double play" combination of IMRT with a low dose brachy boost with a doctor at UCSD in San Diego.

A big factor for me was that the Ascende trial showed clear superiority of LD brachy boost over external radiation alone for unfavorable intermediate risk patients, which I technically am because of more than 50% positive cores from my random biopsy. (Although FWIW, all 6 doctors I consulted with said the positive cores factor is a minor consideration,, and that because of my low PSA and low number of G7 cores, I really should be treated as a favorable intermediate risk.)

I am not inclined towards surgery because I have an active lifestyle with biking, weightlifting, and yoga, and don't want to undergo 2-3 months of urinary rehab and another 6 months or more of "accidents" while performing my favorite pelvic-intensive activities.

After undergoing preparatory MRI and bone scans, the doctor had me do a urfoflow test, to see whether I have any urinary issues that might develop into serious problems like strictures as a result of the brachy boost.

I flunked-- the flow was apparently sufficient at 12 ml/s max, 6 ml/s average, but the doctor was concerned about excessive urinary retention in the bladder.

This news was delivered by the nurse, not the doctor. She said my only option at this point is to do 9 weeks of external radiation only. I asked if it would be possible to retake the uroflow test after doing a course of Flomax, but she just repeated that my urinary retention was problematic.

I should add that I don't feel like I have serious urinary issues. I need to urinate about every hour, and I wake up about 1-2 nights a week, but I have no pain, no urgency, no push to start, start and stop, or split-stream urination.

So bottom line is I am very disappointed I can't do the double play.

I have two thoughts at this point:

1) if I stick with radiation therapy, I should do SBRT, and get it over in 1 or 2 weeks, instead of 9 weeks. As far as I can see, no difference between IMRT and SBRT re: likelihood of recurrence and seriousness of side effects.

2) I may need to visit my urologist and see how serious the urinary retention problem really is, and depending on the results, may need to seriously consider surgery to remove the prostate and "open up the waterworks." (Based on the MRI, the RO suspects that the urinary issues are caused by the tumor protruding into the urethra and restricting flow.)

Thoughts? Suggestions? Anything I missed?
Posted 10/6/2018 4:22 AM (GMT 0)
For some reason reason, my profile didn't post.

Here it is:

Age: 62
PSA, 3/18: 6.1
DRE, 4/18: Stage T2a, right side
Biopsy, 6/18: Left = 2/6 positive, G3+3; Right = 6/6 positive, 3 @ G3+3, 3 @ G3+4; PNI identified in 2 cores
mpMRI, 8/18: PIRADS 5 tumor in the right transition zone. No capsular involvement, seminal vesicles and neurovascular bundles appear normal.
MRI-guided biopsy, 9/18: 9 cores from TZ, 1 positive = G3+3
Posted 10/6/2018 4:34 AM (GMT 0)
Don't give up!

You need to push back and at least try Flomax. I had some flow issues, and retention too -- they were concerned that LDR may not be a good idea. Flomax immediately improved the situation -- I was on it for about 7 or 8 weeks before we did the uriflow and retention study. I passed flow, but there were retention issues. I then started 5 mg Cialis, redid retention in a week, it was better but still marginal. Then waited another week, two weeks of Cialis (plus still the Flomax) and passed retention (it wasn't all gone).

My IMRT did set back flow a bit, but three weeks after end of radiation, flow better and I would be satisfied with it.

My LDR is two weeks from today. I suspect you saw the same RO I have as I believe he is the prime UCSD LDR practitioner.

Did your second opinion come in? Same Gleason?
Posted 10/6/2018 4:53 AM (GMT 0)
Thanks, CAdogsRus, that's very helpful information.

Yes, I got a second opinion on the random biopsy from JHU.

It repeated the original biopsy almost data point for data point.

After the biopsy, I did an MRI at UCSD which identified a PIRADS 5 object in the transition zone (interior), which usually means a G8 or G9 tumor, but after a follow-up guided biopsy, they identified only 1 G6 core out of 9.

And yes, I am seeing Dr. E.

Based on your info, I think I will try to set up a phone consult, or failing that office consult, directly with the doctor.
Posted 10/6/2018 5:08 AM (GMT 0)
Also, if you still don't pass flow wise, with your Gleason I'd be less concerned if it's only IMRT. Plus, G7, you've definitely have time to see if any medication improves flow/retention.

But, as you are doing, you have to in the end be your own case manager -- the doctors and staff do care, but you've got the most skin in the game.
Posted 10/6/2018 12:38 PM (GMT 0)
Rich, after 4 months of testing and research, I took the advice of consulting UR and RT regarding not doing the Brachy boost since I already had urinary retention. I was advised that it might worsen it, although it would add some power for attacking cancer. I seem to have a similar profile to you and of course, I was also interested in SBRT too. It appeared from my review of the SBRT clinical studies and various consulting physicians advice that I wasn't a good candidate for SBRT. Hypofractionated SBRT for PC was recommended for low-risk 3+3 or favorable 3+4 only. There just wasn't enough supporting evidence for me to do it. I had been considering AS at first so it wasn't that I wasn't willing to take some risks. However, my consult with MD Anderson Proton Center and their pathology interpretation of a 4+3 spooked me into requesting a 3-month Lupron shot that day. Their interpretation wasn't supported by any percentages and John Hopkins and UNM both agreed with my original 3+4=7. My RT MD seemed to change his mind but never said so. Still taking into account reoccurrence I am glad I went with the 6 months on Lupron. I have 1 1/2 months to go. Also, I went with 44 higher dose 79.2 rather than 39 at 70.2. There was a recent (8 years) clinical study comparing both with similar mortality results yet there was less reoccurrence for the higher dose. Science Daily has an easy to understand article on this, ithttps://www.sciencedaily.com/releases/2018/03/180315110643.htm Because the 44 traditional approach might lead to greater side effects I also used the SpaceOar originally recommended by MD Anderson and done by UNM RT. I also requested a cystoscopy from my UR with urethral dilation a week prior to starting RT treatment. You seem to be a comprehensive cancer center. You should be able to get everything you need right there. Take your time and feel conformable with your decision.

================
68 yrs., 9 of 44 79.2 gray treatments, PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 93 yrs. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. TURP & scaring 2003, Finasteride 5 milligrams daily since 2002.

Post Edited (SantaZia) : 10/6/2018 8:14:28 AM (GMT-6)

Posted 10/6/2018 1:24 PM (GMT 0)
Depends on why you are failing the flow test and how experienced your RO is

I had triple play treatment, with urinary issues starting out.

I had an enlarged odd shaped prostate,with prostate tissue impinging on the urethra. That ongoing problem had caused a thickening of the bladder wall over time.

My RO had the experience to work around those seemingly insurmountable issues, that one would think should preclude me from the treatment I wanted

First, the external beam and ADT shrank the prostate from 61cm to 29cm within two months. After the initial treatment, the flow test was done and I failed. The shrunken prostate potentially could have eliminated the blockage, but it didn't, so I needed a "green light laser" haircut, just a trim. 6 weeks later, I had LDR, with the standard side effects one should expect.

From what the office told me, it was a fairly common work around for them, Dattoli cancer center They have a urologist they work with specifically for this issue.

5 years out now and doing great
Posted 10/6/2018 2:01 PM (GMT 0)
You are intermediate favorable risk and likely a mono-therapy would be enough. Surgery is often a better option for guys with flow issues. SBRT would be another good option.

However, a mono-therapy with just beam or just seeds should be curable. In the unlikely case it should fail, you can also add the second RT down the road. Honestly, I would find it odd that IMRT wouldn't zap all that PC to an alternative dimension with just the standard treatment.

Andrew
Posted 10/6/2018 3:35 PM (GMT 0)
I also had brachy boost treatment (HDR) and the only SE I have is a somewhat reduced flow. I take a Rapaflo every few days and it's fine--even without the medication it's manageable. But it's definitely changed post-treatment.

If I were you and had a preferred treatment, I'd want to explore the urinary issue more with your doctor. But at the same time, as Andrew points out, with your diagnosis you have lots of options that can should do the trick. In particular, I'd want to look at SBRT.
Posted 10/6/2018 3:53 PM (GMT 0)
PIRADS-5 worries me. My MRI (Dec '17) gave a single region with PIRADS-5 but my Jan '18 26 core biopsy showed no cancer. A July '18 MRI showed the same size PIRADS-5 region and my doc urged a second biopsy. It came back G8 in 3 cores out of 16. I was hoping for nothing more than G3+4 but it wasn't to be. Perhaps you should ask about a 2nd MRI & biopsy to make sure.

Edit: On second thought it may not matter. If you've already made the decision on therapy, as slight change in Gleason won't likely change the course. Perhaps others could weigh in.
Posted 10/6/2018 7:03 PM (GMT 0)
Thanks, guys. Lots of good information and advice.

Fauntleroy: we have similar numbers, so I'm a bit curious why you did ADT. The doctors I spoke to were unanimous in saying that ADT was not necessary/recommended for me. Maybe the difference is that you had ECE, and I (hopefully) do not.

Jim: I hear you about PIRADS-5, but a followup biopsy would actually be No. 3 for me, so not eager to repeat that experience so quickly (No. 1 was in June).

One bit of background info that I did not include in the initial post-- my urinary problems did not begin until about 2 years ago, when my PSA first broke 4. At the time I thought it was prostatitis/inflammation from heavy biking, and indeed, PSA dropped a full point, to below 4, after doing a course of Cipro and refraining from biking for 2 weeks before the next 2 PSA tests.

I think I need to find a new urologist who is neutral on the surgery vs. radiation issue and can give me disinterested advice on the best way to deal with the urinary issues and their relation to my PC treatment. My current urologist is very skilled and a great guy, but strongly pro-surgery, so once he sees my uroflow numbers, he is going to say just forget about RT and any work-arounds necessary to achieve it.
Posted 10/6/2018 10:53 PM (GMT 0)
If you're looking for a "neutral" opinion on surgery vs radiation and since you're in Southern California, consider consulting with Prostate Oncology Specialists in Marina del Rey. While the main doctor there--Dr Scholz--wrote a book that would be considered anti-surgery (Invasion of the Prostate Snatchers), I myself found no anti-surgery bias there with Dr Lam. While he leaned toward radiation in my case (triple play) he was very straightforward in presenting pros and cons of each treatment in my case and certainly didn't try to talk me out of surgery. (I was leaning that way when I first came in.) And I can think of someone here that was specifically recommended surgery due to his unique situation, so I don't think he puts everyone in the same box.
Posted 10/7/2018 12:15 AM (GMT 0)
I did ADT cause my RO advised me to and I didn't question it. I trusted his knowledge and experience and was comfortable with the "full monty." as it was also only for 9 months and I thought better to hit it hard for the primary attempt at a cure. So short term ADT didn't seem like that much added risk. Radio sensitize the errant cells and all that..

To the best of my recollection, probably a combination of having high core percentages, both lobes and tumors in the apex, peri-neural invasion on the biopsy report and ECE from the color doppler ultra sound. Add to that, the potential break between the external beam and the brachy to deal with the urinary issues.
Posted 10/7/2018 12:43 AM (GMT 0)
Fauntleroy: makes sense. Thanks for your reply. Glad it turned out well for you.

Michael_T: I have seen several other people on this board highly recommend Prostate Oncology Specialists, and depending on the outcome of my conversation with the RO, will seriously consider setting up a consult with them.
Posted 10/7/2018 10:59 AM (GMT 0)
There's a lot of stress in the decision-making regarding treatments. It's unfortunate, but with so many competing options it's a complicated disease to treat.

I had IGRT by IMRT with ADT2 for my G9 case. In 2013, adding the brachy boost was becoming more common and the side effects better understood. Brachy boost comes with a recognized tradeoff for some increased cancer control with a higher risk of urinary strictures.

The risk of those strictures is like rolling the dice, but if you do end up with that side effect you 100% have to deal with it. You might want to consider what life is like if you are unlucky. Talk to people about how you would handle that, and make sure you're ok dealing with that. Doctors tend to hand-wave about these things, since they don't live with the result. You do.

I'm only sharing this as a perspective to keep in mind as you ponder what to do. The doctors do have ways to deal with lots of the potential side effects.

All the best to you, and I hope you end up with a treatment plan and doctors in which you have confidence. There will never be 100% certainty! Select treatment with a constellation of side effects, and risks, that you're comfortable with.
Posted 10/7/2018 4:21 PM (GMT 0)
Thanks for the sage advice, Redwing57.

Your backstory was also very helpful as a harbinger of the road ahead. It's not an easy road, but if you take it one step at a time...
Posted 10/7/2018 4:28 PM (GMT 0)
CAdogsRus, could you please PM me?

I'd like to get more details of your treatment.

My email address is in my profile.

Thanks!

Richard
Posted 10/7/2018 8:26 PM (GMT 0)
Done.
Posted 10/8/2018 10:22 AM (GMT 0)
Rich, you've commented above that you need to find a urologist who is OK with radiation as an option: You may find one, but they are rare. Urologists are surgeons, they know surgery, they recommend it, because that is what they are good at. For radiation expertise, you need to be talking to the radiation oncologists. And, even more frustrating, is that because there are so many flavors of radiation therapy, you need to talk to experts in each of the types.

It's kind of like trying to get high level service on your Mercedes from a Ford dealer--or asking a plumber how to fix your roof.
Posted 10/8/2018 6:44 PM (GMT 0)
Agreed, Halbert, looking for a RT-neutral urologist is like looking for an ambidextrous unicorn.

I'm going to continue to pursue the double play with my RO per CAdogsRus' suggestion, and if that doesn't pan out, then I may set up up a consult with Prostate Oncology Specialists per Michael_T's suggestion.
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