I just completed my history incorrectly as a post. I have not posted before as I have been a silent member without any worrying ongoing elevations in PSA for about four years. I have keenly observed the posts of members and learned a good deal from them.
This post is the follow up on my history post.
I await an appointment at Peter MacCallum Centre in Melbourne Australia. It is a world renowned centre of excellence.
My recurrent state is limited to a relatively low PSA and three avid lymph nodes with no prostate or pelvic avidity after original whole of pelvis radiation and four year ADT holiday
So far as I can see the clinical trials for oligometastatic recurrence concern <5 bone metastases +/-LNs. I can see no trial with LN only so I presume I am a rare lucky bloke.
I had severe acute side effects from initial treatment - the faecal incontinence took two years to abate - so I am looking for a treatment program that minimises side effects as far as possible.
Do any members have a similar recurrence with just a few LNs and what treatments were offered?
Written by
Sisyphus
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Gleason 9 with only 2 Lymph nodes near prostate involved 30 months on Lupron and Zytiga RT 20 sessions of IMRT. now on 5 month vacation to see if "cured" 2 weeks ago PSA came off of undetectable to 0.03. see my profile for more details
Yes, similar it seems although I was 61. As I share, after my unsuccessful salvage RT to bed only, imaging at 0.11 identified five suspicious pelvic lymph nodes. I chose salvage pelvic lymph node surgery with the frozen section pathology method that confirmed six cancerous nodes. Over six years hence and holding 0.03X range, no ADT. All the best.
My journey is not the same a yours (see attached) but my recurrences have been lymph node only vice bone or organ involvement.
The first time (December 2016), we did SRT only to the prostate bed despite my misgivings that with my GS and time to BCR, data from Mayo and emerging CTs indicated likely spread to the PLNs and treatment should include short term ADT and WPLN radiation.
The 2nd time (January 2017), we did triplet therapy. Maybe that was overkill but it brought 4-1/2 years off treatment.
The 3rd time (April 2023) we did SBRT to the lone PLN and 12 months ADT - Orgovyx. My going in position was the SBRT and six months Orgovyx which my radiologist thought was a reasonable approach. My oncologist (new) initial approach was SBRT and 24 months ADT + ARI, curative he thought!
I pushed back on the curative, we settled on 12 months, add the ARI only if the PSA did not drop to undetectable in the first three months on Orgovyx. It did, we didn't add it. At the 12 months point he asked about doing another six months. He didn't have the data to support a change in he outcome - PFS, OS...I didn't have the data to support risk of castration resistance.
We agreed to come off treatment, actively monitor every three months with labs and consult and use the same decision criteria to go back on treatment, three or more consecutive increases spaced 2-4 months apart, PSA between .5-1, image, decide.
I had labs on Monday, PSA .01, T 328...
So far, so good...
How long will this off treatment be, no way of knowing. I can tell you that within 2-3 weeks of coming off Orgovyx, the fatigue, muscle and joint stiffness were gone. The hot flashes, well, they're like fat cells, they refuse to die though they have gotten better!
There are various thoughts on MDT only but generally my sensing is adding short term ADT produces a better response.
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What Treatment - Or No Treatment Advice?
Prostate Cancer Radiation treatments
started treatment plan
Rising PSA After Treatment
\"Deluxe Treatment\" Anything else?
