Looking for recommendations and advice....newly diagnosed . I am 67 PSA at annual physical March 1st was 26 then rose to 32 two weeks later with second test. Going to Mayo Clinic in Jacksonville. Have had an MRI, Biopsy, Gleason (4+4)=8, and PSMA Pet Scan last week confirming it has spread to my Rectal lymph node so surgery is not an option. Told it is a very aggressive cancer and its appearance in the rectal lymph node is not usual. Reports had the term Cribiform used.
Meeting with Radiation Oncologist Dr Attia today. Have not chosen a Medical Oncologist yet..(any recommendations in this area of NE FL welcome..live in St Augustine) tried to get a consult with Dr Sartor at Mayo Rochester but was denied. I definitely want to get a second opinion even though I have liked all of the Dr's at Mayo so far. I know there are some good Drs at UF Health Gainesville and others in the Orlando area. I listened to multiple sessions of the Prostate Seminar this past Saturday where Dr Sartor was a speaker and learned more information.Here are my questions I have assembled for this appointment. .What have I missed? Not sure I have the correct terminology. Any suggestions welcome.
- What is the treatment process? Hormone therapy first? (ADT?) Then Radiation?
What kind of treatment?
Whole Pelvis Hypofractionated?
SBRT? IMRT? Proton?
Brachytherapy?
Triplet Therapy?
SpaceOar to protect rectum?
How many treatments?
When will we know if it is effective?
How is that measured?
Side effects to expect?
Duration?
Any risks from other health conditions Or medications?
Heart Attack-Stent placed 2016
Gallery Bladder, Spleen and half of stomach removed
Severe Restless Leg Syndrome and Sleep Apnea
Thank you all
Written by
MustangGuy
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"surgery is not an option" - I do not think so. I would get the prostate removed and just observe the lymph node. PSMA scans do have false positives. This lymph node will not kill you but radiating near the rectum will very likely cause lasting side effects. Maybe the lymph node turns out to be a false positive in the future. If not, you can get lymph node dissection to have it removed with surgery or salvage radiation including the pelvis and lymph nodes.
I have intraductal Gleason 8 too with affected lymph nodes. Removed these with Pluvicto.
You may want to get a second opinion from Matthew Biagioli in Orlando. He is a radiation Oncologist specializing in high dose rate brachytherapy. He will use that on the rectal lymph node and your prostate, with whole pelvic external beam radiation to the entire pelvic lymph node area.. You will also get 3 years of ADT (e.g., Lupron, Firmagon or Orgovyx) and two years of abiraterone, starting 2 months before the radiation.
What is the treatment process? Hormone therapy first? (ADT?) Then Radiation? (as above)
What kind of treatment? as above
Whole Pelvis Hypofractionated? Not hypofractionated - probably 20-25 external beam treatments at 1.8 Gy each.
SBRT? IMRT? Proton? HDR brachy+IMRT
Brachytherapy? HDR preferred - less side effects
Triplet Therapy? No. That is only appropriate if there are distant metastases.
SpaceOar to protect rectum? Definitely not - that would protect the cancer.
How many treatments? 20-25 IMRT + 1 brachytherapy
When will we know if it is effective? Not until ADT ends after 3 years.
How is that measured? Periodic PSA tests.
Side effects to expect? Acute irritative side effects (risk of urinary retention, cystitis, proctitis) in first 3 months, low risk of late-term side effects after. Also, side effects from hormone therapy.
Duration? Ask what you can do to manage side effects should they occur.
Any risks from other health conditions Or medications? You may be better off with monthly Firmagon shots (or Orgovyx) than with Lupron because of the cardiovascular effects
Thank you for the very detailed reply. Had the appointment and their recommendations were for Photon IMRT radiation for 28 sessions with with ADT therapy for about 2 years..still need to meet with MO. I had considered Biagioli for a 2nd opinion but he just moved to Sarasota which would be too far to travel for treatment. They said the place in the Rectal lymph node is very small so Brachytherapy was not their recommendation. They answered all of these questions for me..I pushed hard as to why Photon and not Proton therapy and am satisfied with their reasoning. Still may pursue a second opinion but really just want to get this treatment going and try to stop the progression. I do hope it's the right decision.Thanks
HDR Brachy is done in one session and you can have the IMRT part of it done locally. HDR brachytherapy can reach places where LDR brachytherapy (seeds) can't and has a much lower side effect profile. It sounds like you are getting bad advice. Talk to Biagioli.
You can also consider this clinical trial in Gainesville:
T_A, Dr. Biagioli moved to Florida Cancer Specialists in Sarasota about a year ago. I wouldn't have known except I wanted to give his name to someone and noticed he wasn't at AdventHealth any longer. I called to make sure he's in Sarasota.
The only thing I would add to Tall Allens excellent suggestions is to start a serious excercise program with resistance training and aerobics. These have gone a long way towards lessening my side effects from ADT.
Keep a positive attitude, this is not a death sentence.
I had similar pathology with a mesorectal LN, specifically t3bN1M0+SV, GL (3+4). Your doctor is right, the rectal node is not on the usual path of nodal progression, and I suspect mine possibly came from the biopsy. I had good luck with HDR-Brachytherapy followed by IMRT and 18 months of ADT (see profile). If you were on the West coast I would suggest Dr Chang at UCLA for HDR-BT. Dr Eintz (UCSD), who did my IMRT, and has left to Kansas City-- specifically discussed treating the mesorectal LN in the IMRT mapping. It has not come back since treatment four years ago, so it was either treated successfully or was a false positive on the PSMA scan as Dr Eintz said last I saw him. I had SpaceOar, and partially credit it to not having any radiation SE's at all-- the trick here is finding a doctor that's placed several dozens of them, as it's not an easy procedure to do perfectly.
Your cancer sounds exactly like mine. Same age as you and into the rectum.
My treatment was 8 months of Lupron and zytiga before whole pelvic proton radiation. Stayed on the Lupron and Zytiga for 19 months total. My psa was never higher than 4.2 with the tumor out and against the rectum. Started drugs June of 2018 started radiation March of 2019. Stopped drugs Feb 2020. Psa stay at .04 for a solid 2 years then as my T moved up it is now .07. Psa moves with the testosterone because we still have a prostate.
I won’t describe my radiation other than the 40 rounds because there are so many different amounts given per round. I know I had 4 locations hit per round but didn’t ask a lot of questions. Figured I went to the guys that knew what they were doing.
For sure get a testosterone level before they drop yours unless they already have.
My treatment was done at MD Anderson with Dr Shaw as the RO and dr Corn as MO.
Best of luck. Pick a good hospital. I moved to houston for the radiation and played on the beach.
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Lymph Node Dissection [LND] & Salvage Radiotherapy [sRT].
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PSMA results 6 weeks post RALP; one peri-anal lymph node
