Update #2 in my continuing journey

[PCInPA]

The roller coaster ride continues. Please pass the Prozac.

I met with radiation oncologist at Fox Chase earlier today. Like everyone I have me there he was pleasant, knowledgeable and really spent a lot of time discussing options.

Per me prior update, I have been desperately trying to avoid the surgical route as I fear becoming an incontinent, suicidal hermit with ED and a malformed tool. My own research has been holding out high hopes for SBRT, either with Spaceoar or MRI guided. Have also considered brachy but suspect my 96cc prostate along with taking bph meds makes me a poor candidate.

So, radiologist feels that:

Brachy is not a good option. The enlarged prostate makes placement of the seeds a challenge.

In terms of treating the cancer, likelihood of recurrence, radiation on par with surgery.

Spaceoar. Probably not a good option due to size of prostate.

EBRT becomes the remaining option. However, the have concerns about urinary complications with SBRT. Again, comes down to prostate size and history. That leaves traditional 8 week daily treatment. Guided conformal using Calypso markers. He seems to think this is less risky in my situation than SBRT however he still feels that there could be short and / or longer term risk of complication. Short term can likely be dealt with, longer term more if an unknown. He did not seem to think there is significant risk of urethral stricture or rectal fisures.

When my spouse inevitably asked the what would you do question he did not give a definitive answer (which I do respect). However, even I could read between the lines that he thinks I am probably a better candidate for surgery than for radiation.

It's one thing when the urologist/surgeon is telling you that surgery is your best option, quite another when RadOnc is essentially saying the same.

I have one more consult next week with multiple specialists at another, smaller, COE. For now, the cards are not falling as I might have hoped.

[Tall_Allen]

Be careful about "reading between the lines." You are probably projecting. It's a good idea to decide not to decide until all info is in.

This meeting was obviously not with Eric Horwitz. He does a kind of brachytherapy called "high dose rate brachytherapy" where there is no prostate size limit. I strongly suggest you talk to him.

There is also no prostate size limit for SBRT. I think I gave you the name of a high-repute SBRT facility in Philly.

[PCInPA in reply to Tall_Allen]

Thanks TA. It was not Horwitz, rather one of his associates. Apparently they now only do high dose brachy at Fox Chase.

I'll go back and look for center you suggested.

I think their big concern seemed to be the combo of the enlarged prostate and that I am on meds to keep flow going. 5+ years ago when I first encountered BPH I went into urinary retention and had a cath for a week until the meds kicked in. While the meds have been effective, they really seemed to heavily weigh my once having needed the Cath.

Given size of my prostate, they also seemed a bit surprised that I have not had other symptoms (urgency, nocturia, etc.). I am 6' so maybe that gives it more room!

Stay tuned.

[Tall_Allen in reply to PCInPA]

I'm confused. You wrote, "The enlarged prostate makes placement of the seeds a challenge." There are no seeds with HDR brachy. They use catheters (like straws, about 15 of them) and use Ir-192 needles through the catheters. Size of prostate is not an issue as it is for seeds.

brachyjournal.com/article/S...

ncbi.nlm.nih.gov/pmc/articl...

But I agree that with your history of urinary retention, brachy therapy (even with HDR brachy) is not a good idea. SBRT does not carry the same risk of acute urinary retention.

[PCInPA in reply to Tall_Allen]

My bad, i am incorrectly mixing terms. It is the targeting of the brachy needles that presents the problem.

[Wigwam777]

Thank you for the update on your position, I am in the UK but we seem to be in a similar position in deciding the next step for treatment. Must admit at times I feel very alone in trying to make the right decision, making a decision and sticking to it has never been an issue in the past but this is very different. Covid lockdown and accessing Doctors is not helpful. Again thank you for sharing your experience, much appreciated.

[PCInPA]

Glad you find it helpful. I do believe that this is one of those things you can never truly know until you've been there. I find it really valuable hearing about others experiences and decision making process, I would be remiss if I did not share my own. I do wish there was a site with patient reported outcomes over time where you could search by proceedure, doctor who performed, etc. That seems to be a closely guarded trade secret.

It does suck. I came into this trying to avoid the surgical option at all costs. The only real positive I have heard there is, "I am alive and I know it is out". While that is pretty important in the grand scheme of things, as people open up it is all to often couched with comments like, "but yeah, I've resigned myself to peeing my pants every time I stand up for the rest of my life". Unfortunately, that could still be me. While I have not given up, it feels like the non surgical doors keep closing on me. If it were not for the 96cc prostate with bph, I would probably be scheduled for SBRT or Brachy already.

As an aside, I asked my primary uro, who is adamantly against radiology, how many RPs he has done. He responded, "oh, over 1,000. ... That's my bread and butter". Yeah, poor choice of phrasing there.

[PCInPA]

Hmm, I just noticed something on the biopsy eval from Fox Chase that was not on the original pathology report.

For 2 of the three gleason 7, 3+4s it says "perineural invasion is identified". That may be meaningless but it can't be good! Does it influence choice of therapy either way?

[Justfor_ in reply to PCInPA]

PIN of varying degree is almost always identified. It is important in the case of no cancerous cells found. Otherwise, it doesn't make things worse than the GS dictates.