Hey! I am a rookie here! So much respect for this site and the great guys and gals that contribute. Any feedback would be appreciated!
I chose RP to deal with my PC
RP February 2019- Gleason 3 + 4 = 7 Tertiary pattern 5
Extraprostatic extension of tumor.
After RP of 2/07/2019-
PSA- Undetectable until 2021- all PSAs below in 2021
March 21- .07
July 21- .11
September 21- .15
December 7- .24
December 15- .17 (different lab)
PSMA November 13, 2021- lymph node concerning on right side of pelvis
IMPRESSION:
Subcentimeter tracer avid node in the right iliac chain most likely representing metastatic lymph node. There is no other tracer avid distant metastases.
I met with local urologist- recommend radiation to prostate area with no ADT. But he did not have the benefit of PSMA.
I met with Dr. Deville at Johns Hopkins and he suggested a 6 month course of Orgovyx and 37 or so radiation treatments. I had been of the mind that there was an increased benefit from the hormone treatment along with the radiation, which he voiced as well. A second opinion at Duke with Dr. Lee agreed with the plan. So I started on the Orgovyx on Christmas eve- so more than a month in. Start radiation at JH February 7th.
As far as the hormones, here are my numbers before ADT on
When there are known cancerous pelvic lymph nodes, at least 2 years of adjuvant ADT is required, possibly with advanced hormone therapy. Consider this randomized clinical trial - it seems perfect for you:
Thank you for advice. I searched this site and the only study that I could find regarding the length and type of ADT is below which does lend credence to the advantage of the use of a 24 months of ADT with radiation in the salvage setting over radiation alone. Are there studies that show that longer than 6 months ADT is advantageous? Your time and information is GREATLY appreciated!
The standard-of-care when there are pelvic lymph node metastases is 2-3 years. I have no idea where you are getting 6 months from. The best info we have comes from the following study:
The new clinical trial that I showed you will establish a new standard of care. The only open question is whether extra hormone therapy helps.
That link has nothing to do with your situation - you are not distantly metastatic (stage M1), your cancer is only in your pelvic lymph nodes (stage N1).
I don't know what other kind of radiation you mean - hypofractionation? protons? Yes, they are possible too. Hypofractionation is a good idea during the pandemic.
I don't know either of them. JH is not known for radiation oncology. I only know of Bridget Koontz at Duke. I can also recommend Sean Collins at Georgetown.
Allen- had a phone consult with Dr. Collins and he agreed with length of ADT.
He did say that I could consider radiation to the lymph nodes only for 5 treatments which would drastically reduce any risks of complications. But he said that radiation to the whole area would give me a higher percentage chance of a better outcome longer term. So I am going to press on with the plan for 35 treatments.
All three DeVille/JH, Lee/Duke and Collins all said no evidence that longer is better in this context with my presentation.DeVille also drew a distinction with my case from the study that London441 was in.
Yes to whole area! I appreciate your input. Glad I discussed with all 3. Of course, the opinion could change during my six months ADT.
Look at the clinical trial I cited. All patients in your situation will be getting 2 years of adjuvant ADT. If they are randomized to Arm 2, they will also get apalutamide for 2 years. This is an NRG Oncology/NCI randomized clinical trial, which considered to be the best.
I think this is based on the finding in the Touijer study (discussed in article) that long-term adjuvant ADT is needed along with salvage radiation in men in whom positive LNs have been discovered.
I had RP in 2019 also, at Johns Hopkins. Deville was my RO but only to administer the radiation, as part of my post op additional treatment clinical trial. My MO in charge of the trial is a Hopkins doc as well.
I’m surprised he would recommend only 6 months ADT for you. My pathology was similar, and I was on it for 18 months, which was shortened from 2 years. You had only RP in February’19?
I suppose I am one of those that ‘hit this aggressive early on’, as Dublin 1717 says.It wasn’t necessarily in my plan, but I was strongly advised to do it and followed that direction.
Lupron, plus Zytiga/prednisone. The Zytiga was for the first 3 months only. Concurrently with 4 cycles Taxotere chemo followed by 37 sessions of IMRT at 6 months. Lupron switched to Eligard (same drug, supply issue).
I finished with the treatments September’20.
I hope your salvage therapy works well for you! Glad you are taking Orgovyx, with its faster elimination from the body when stopped. The Lupron took its time leaving mine.
Neither the Orgovyx or PSMA were available to me when my trial commenced only
Hi there wickedneptune, My husband had RP July 2020 and it all sounds pretty much like your case, he’s just had his first PSA rise so I’m following you buddy to see how you go. One thing we’ve learnt from this site is to hit this aggressive early on. I’m sure more of the absolute diamonds on this site will give you their opinion to help you with your decision making. Like you I’m so grateful to be here. Wishing you the best and with you now from here on in all the way. Please keep in touch ☘️
had the treatment - 6 months ADT with 35 radiation treatments- this spring. So far PSA undetectable. Testosterone was 190 recently- up from 0. Feeling great.
Some doctors are less enthusiastic about long courses of ADT than others.
I didn’t have an avid node, just suspicious, so less. I’m curious what your doctor said about 6 months for an avid iliac node. There are a lot of reasons that could be behind that recommendation so I think you should ask him specifically and let us know.
Ultimately you will decide how long your course is, anyway.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.