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Finally the journey begins for me....

Posted by copyman @copyman, 3 days ago

Officially started treatment today after several months of 2nd & 3rd opinions, video consults with Dr Scholz, and endless hours of research. I just took the initial dose of 3 Orgovyx pills (4-6 month course). Will be traveling from NJ to CA (UCLA) in Sept to have Brachytherapy procedure with Dr Chang then have 5 SBRT sessions back at home. Here are my stats:

Age: 69, PSA 35, Gleason 4+3 Grade 3

MRI:

FINDINGS: PROSTATE GLAND: measures approximately 5 x 4.4 cm corresponding to a volume of 45 mL. PERIPHERAL ZONE: No evidence of prostatitis. CENTRAL GLAND: Moderate changes of BPH. Lesions 1 PI-RADS score: 5 Location: Right TZ Mid at 11 o'clock Max dimension: 3.66 cm (slice: 14) Volume: 9.492 ml Extraprostatic extension: - none
Extraprostatic Tumor Extension: Slight bulging of the prostatic capsule but no visible tumor extension beyond the capsule. Neurovascular Bundles: Normal. Seminal Vesicles: Normal. Urinary Bladder: Normal. Pelvic Lymphadenopathy: None. Pelvic Osseous structures: No suspicious osseous lesion identified.

TransperineaL Biopsy , 17 cores 14 cores benign, 3 cores from same area (transistion zone) (50-60% pattern 4)

(2nd opinion on slides reviewed by chief pathologist at Univ of Penn who concurred with original findings)

PSMA:
1. Marked PSMA-avid disease in the prostate consistent with biopsy-proven prostatic adenocarcinoma.
2. The minimally PSMA avid largely symmetric pelvic lymph nodes are favored to reflect reactive/inflammatory uptake. No suspicious PSMA avid lymph nodes identified.
3. No radiotracer avid distant metastases

Prostox text for SBRT late term toxicities: Low Risk

Thanks to everyone for the great information shared on this forum and sure I will be posting in the near future for support. Prayers for all!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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damonk | @damonk | 1 day ago

This sounds a bit like my story. Metastases were discovered in March. I started Abi/pred/Orgovyx in April. Today I had my first of 2 sessions of HBR Brachy at UCSF. The 2nd is in 6 days. It all happened much faster than I expected it would. I checked in at 7:00, got all the monitoring in (IV, heart, oxygen, etc) then at 8:00 went into the room for the CT scan and catheter implants. I woke up well and after some recovery they wheeled me into the room with the radiation. That was only about 10 minutes or so of exposure. I had heard that the catheter removal was going to be unpleasant but it wasn't bad. My wife and I left at around 11:30.

After round 2 next week I'll be getting set up for my 5 to 6 rounds of SBRT - so, very similar. I'm fortunate not to have to fly across the country and only do a 1 hour drive. But it's good that you did your research. I did the same but only moved my care from the South Bay Area to San Francisco.

Anyway, all the best. We'll all get through this.

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copyman | @copyman | 1 day ago
In reply to @damonk "This sounds a bit like my story. Metastases were discovered in March. I started Abi/pred/Orgovyx in..." + (show)
Profile picture for damonk @damonk

This sounds a bit like my story. Metastases were discovered in March. I started Abi/pred/Orgovyx in April. Today I had my first of 2 sessions of HBR Brachy at UCSF. The 2nd is in 6 days. It all happened much faster than I expected it would. I checked in at 7:00, got all the monitoring in (IV, heart, oxygen, etc) then at 8:00 went into the room for the CT scan and catheter implants. I woke up well and after some recovery they wheeled me into the room with the radiation. That was only about 10 minutes or so of exposure. I had heard that the catheter removal was going to be unpleasant but it wasn't bad. My wife and I left at around 11:30.

After round 2 next week I'll be getting set up for my 5 to 6 rounds of SBRT - so, very similar. I'm fortunate not to have to fly across the country and only do a 1 hour drive. But it's good that you did your research. I did the same but only moved my care from the South Bay Area to San Francisco.

Anyway, all the best. We'll all get through this.

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@damonk Thanks and good luck with your treatment. That sounds very similar to Dr Chang's protocol. He places the catheters, rectal spacer & fiducial markers then you are awake for CT/MRI planning & radiation. The difference with how they do it on the east coast and why you are under anesthesia so long is they do everything why you are asleep, placing the 15+ catheters into prostate, planning procedure with a physicist, inserting rectal spacer & fudicial markers, then do the HDR. There are many people who would prefer not being awake at all.

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bobgolf | @bobgolf | 17 hours ago
In reply to @copyman "I wanted to add that this was perhaps the hardest decision I've ever had to make,..." + (show)
Profile picture for copyman @copyman

I wanted to add that this was perhaps the hardest decision I've ever had to make, and took several months to sort it out and get educated about PC. There are great hospitals here on the east coast like John Hopkins, Sloane Kettering, MD Anderson Camden NJ, to name a few who I could of treated with. The two COE's I consulted with near my home were Univ of Penn & Fox Chase, both great cancer centers. Penn offered me a trial of HDR Brachy, 5 sessions of proton & short course of ADT. Fox was same triple therapy but 23 sessions of IMRT first then the HDR brachy after with short course of ADT. I decided on Dr Chang because of his experience with Brachy plus his procedure doesn't require heavy general anesthesia with being intubated & on ventilator for 4 hours like Penn & Fox. Dr Chang does brachy procedure and rectal spacer in under an hour using Propranolol anesthesia. Plus he was highly recommend by Dr Scholz and all the positive things I've read from others who had treatment with him at UCLA. One problem I'm running into because I can't stay out in CA for 3+ weeks and have SBRT done there is finding an RO back at home to do the 5 SBRT sessions and take over my care. Penn will only do 25 proton sessions not the 5 SBRT if I have Chang do procedure. Penn said they only do the 5 SBRT as mono treatment unless you are in the trial. Asked Fox and waiting for a response but they will probably say no as well because these doctors ego's get in the way, thinking why don't I trust them to do the Brachy procedure. I told both RO's from Penn & Fox who have done many Brachy procedures that I trust their expertise to do the Brachy but it was the long anesthesia I didn't want. Hopefully Dr Chang can call an RO here on east coast on my behalf and setup the SBRT. It's different when a doctor asks another doctor. Plus most doctors know of Dr Chang. My family & friends think I'm crazy to go all the way out to CA when we have these great COE's close to home but this is what I feel comfortable with. Sorry for this long post.

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@copyman I will say a prayer all goes well for you. You have a good plan.

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copyman | @copyman | 14 hours ago
In reply to @bobgolf "@copyman I will say a prayer all goes well for you. You have a good plan." + (show)
Profile picture for bobgolf @bobgolf

@copyman I will say a prayer all goes well for you. You have a good plan.

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@bobgolf Thanks Bob, really appreciate the prayers. My prayers coming back at you.

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Setters and Birds | @jonathanack | 11 hours ago
In reply to @copyman "I wanted to add that this was perhaps the hardest decision I've ever had to make,..." + (show)
Profile picture for copyman @copyman

I wanted to add that this was perhaps the hardest decision I've ever had to make, and took several months to sort it out and get educated about PC. There are great hospitals here on the east coast like John Hopkins, Sloane Kettering, MD Anderson Camden NJ, to name a few who I could of treated with. The two COE's I consulted with near my home were Univ of Penn & Fox Chase, both great cancer centers. Penn offered me a trial of HDR Brachy, 5 sessions of proton & short course of ADT. Fox was same triple therapy but 23 sessions of IMRT first then the HDR brachy after with short course of ADT. I decided on Dr Chang because of his experience with Brachy plus his procedure doesn't require heavy general anesthesia with being intubated & on ventilator for 4 hours like Penn & Fox. Dr Chang does brachy procedure and rectal spacer in under an hour using Propranolol anesthesia. Plus he was highly recommend by Dr Scholz and all the positive things I've read from others who had treatment with him at UCLA. One problem I'm running into because I can't stay out in CA for 3+ weeks and have SBRT done there is finding an RO back at home to do the 5 SBRT sessions and take over my care. Penn will only do 25 proton sessions not the 5 SBRT if I have Chang do procedure. Penn said they only do the 5 SBRT as mono treatment unless you are in the trial. Asked Fox and waiting for a response but they will probably say no as well because these doctors ego's get in the way, thinking why don't I trust them to do the Brachy procedure. I told both RO's from Penn & Fox who have done many Brachy procedures that I trust their expertise to do the Brachy but it was the long anesthesia I didn't want. Hopefully Dr Chang can call an RO here on east coast on my behalf and setup the SBRT. It's different when a doctor asks another doctor. Plus most doctors know of Dr Chang. My family & friends think I'm crazy to go all the way out to CA when we have these great COE's close to home but this is what I feel comfortable with. Sorry for this long post.

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@copyman
I can recommend Dr. David Byun at Hartford Health Care. Dr. Joseph Wagner (pioneering urologic oncology surgeon recommended Dr. Byun). In my case surgery or radiation were equipoise and Dr. Wagner referred me to Dr. Byun. Dr. Byun is an MSK and Cornell Weill trained radiologist at Hartford Health Care and Brilliant. I consider finding him a great blessing (I have cribriform 3+4 in two tumors, gleason 6 in 4 tumors and a decipher of .72). Dr. Byun is terrific - patient, a gold mine of knowledge, young and Exceptionally well trained.

Good luck in your decision. Your friends don't get a vote - you do. Go Easy.

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heavyphil | @heavyphil | 11 hours ago
In reply to @copyman "I wanted to add that this was perhaps the hardest decision I've ever had to make,..." + (show)
Profile picture for copyman @copyman

I wanted to add that this was perhaps the hardest decision I've ever had to make, and took several months to sort it out and get educated about PC. There are great hospitals here on the east coast like John Hopkins, Sloane Kettering, MD Anderson Camden NJ, to name a few who I could of treated with. The two COE's I consulted with near my home were Univ of Penn & Fox Chase, both great cancer centers. Penn offered me a trial of HDR Brachy, 5 sessions of proton & short course of ADT. Fox was same triple therapy but 23 sessions of IMRT first then the HDR brachy after with short course of ADT. I decided on Dr Chang because of his experience with Brachy plus his procedure doesn't require heavy general anesthesia with being intubated & on ventilator for 4 hours like Penn & Fox. Dr Chang does brachy procedure and rectal spacer in under an hour using Propranolol anesthesia. Plus he was highly recommend by Dr Scholz and all the positive things I've read from others who had treatment with him at UCLA. One problem I'm running into because I can't stay out in CA for 3+ weeks and have SBRT done there is finding an RO back at home to do the 5 SBRT sessions and take over my care. Penn will only do 25 proton sessions not the 5 SBRT if I have Chang do procedure. Penn said they only do the 5 SBRT as mono treatment unless you are in the trial. Asked Fox and waiting for a response but they will probably say no as well because these doctors ego's get in the way, thinking why don't I trust them to do the Brachy procedure. I told both RO's from Penn & Fox who have done many Brachy procedures that I trust their expertise to do the Brachy but it was the long anesthesia I didn't want. Hopefully Dr Chang can call an RO here on east coast on my behalf and setup the SBRT. It's different when a doctor asks another doctor. Plus most doctors know of Dr Chang. My family & friends think I'm crazy to go all the way out to CA when we have these great COE's close to home but this is what I feel comfortable with. Sorry for this long post.

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@copyman A good friend had HDR brachy plus 5 SBRT at Sloan in NYC/Commack…other branches do it as well.
Also, he was not intubated for 4 hrs at all; like an hour and a half with IV…
Phil

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