I was recently diagnosed with advanced stage 4 with spine involvement. The docs are debating weather we should do radiation to my metastasized prostate or not because of a past fistula. It developed after a second focal laser ablation back 2017. A hole developed between the prostate and the rectum wall that did heal over about 7 weeks. It was awful! The risk with radiation would be possible damage to that area again and open it up. Has anyone had experience with something like this?
Thanks
How many spinal metastases? If 4 or more, there is no benefit to prostate therapy.
One at T2.
I think the risk of an even worse fistula may outweigh radical RT or RP for you.
Agree with TA. While studies have shown some men have good results by treating the prostate when <4 metastases are found, for many men prostate treatment is of little benefit.......and you already know that a fistula is a very serious thing ....even life-threatening.
Nobody in this group has clinical or personal experience to give an opinion. You need to consult with 2 or more ROs and see what they think.
I have talked with two Radiology Oncologist. They have different opinions on treatment. One says radiation to the prostate carries risk but is minimal and if successful, I may be able to eventually come off of ADT. The other says, the risk is to great given the past fistula complications.I am seeking men that may have experienced this situation.
Agree with Tango65......anecdotal evidence should not guide your decision.
The info here will be anecdotal. Consider consulting with other radiation oncologist such as Dr. Roach at UCSF or Dr. Anthony D'Ámico at the Dana Farber cancer center in Boston.
dana-farber.org/find-a-doct...
radonc.ucsf.edu/about/our-t...
They have been treating patients with PC and radiation for decades.
I had full gland IMRT (~78 grays) after recurrence 1 year after FLA. Like you, the FLA caused a prostate/rectum fistula which healed in about 5 weeks (on catheter). The only concern the (2) RO's I consulted with (OHSU & Compass Oncology) had was about using SpaceOAR gel. If the rectum was sealed but still fused to the prostate, the spacer gel could cause considerable damage so we took an MRI to see if we could see any separation between the rectum and prostate. They were unable to confirm separation and so we did not use spacer gel. Anyway, it is now 18 months later and no problems except the usual RT SE’s. I’m only giving my experience – not recommending any course of action. BTW, I had (probably still do), localized (N0,M0) castrate sensitive PCa.
Thanks for the input Dave5477! The fistula is no joke. Out of curiosity, where did you have your FLA done? I went UTMB.
Yep, the same - UTMB – actually a total of (3) FLA’s from UTMB – all resulted in recurrence, with the last one delivering a Fistula. The only good news is financial - my self insured company I work for paid for all of them.
After FLA, I also looked into LDR Brachytherapy (seeds) but the doc did not want to do it following FLA and especially after I told him I had a previous fistula. Having a fistula can really limit your salvage options.
The RO’s also did not want to use SBRT or hypofractionated (high dose) IMRT. They wanted to go slow and easy because of the fistula.
It does limit indeed. I had my first FLA in 2015 followed by another in 2017 that resulted in the fistula. It was pretty awful! After recurrence in 2020 Walser did Cryoablation. I just recently found out it has metastasized with spine involvement. Do you regret going the FLA route?
Well, I regret that last FLA for sure. After the first one, PSA went from 8 to 1 and I really thought we licked it, but then PSA climbed back up to 8 and another PSMA scan showed it in the other half of my prostate. After the second FLA, PSA only went down to 4 and slowly climbed again. I had another PSMA and is showed it was still localized. That is when I should have stopped the FLA nonsense. BTW, I forgot to say I also looked into Tulsa Pro but Dr. Scionti in Florida did not want to risk it with the fistula. My journey also started in 2015 and my destination is still playing out.
Did the original RT use "Space Oar"? This is a procedure that protects the rectum.
Yes
Yes. They used it before but, there is concern that any manipulation of fistula could actually cause damage.
Would spaceOAR help?
Are you referring to the gel spacer? If so, it’s been discussed. Thanks
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