Gleason 6, 1 Yr AS, now Gleason 3+4 - Prostate Cancer N...

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Gleason 6, 1 Yr AS, now Gleason 3+4

Muggs1 profile image
13 Replies

Hi,

I'm 65, fit, active. , 2 yrs ago noticed PSA doubled to 2.4, last yr 3.5 so had MRI and urine exosome test, "liquid biopsy". Range is 1-100, less than 15 and you are ok, o/w suggest a biopsy. Mine was 48. Oh, the 3 markers in this test are for more aggressive disease. BTW MRI only showed diffuse "prostatitis", no tumor. Bx came back Gleason 6 Prolaris was 3.4, so AS. PSA increased to 5 this past spring, another parametric MRI same result, no tumor. Repeat bx now Gleason 3+4 ( 10% 1 core). Second opinion from Johns Hopkins same except the 1 core, they wouldn't confirm or deny higher risk disease vs. no disease. BTW, their fee is now $1200. Also had PSMA PET scan, CA present on left-middle prostate only. So it's time to treat. The past year I decided I'd go to Dr Kishan for sBRT but since then I am now onto high dose Brachytherapy, also done at UCLA in large numbers. This decision is due to less side effects, overall and successful 10 yr outcomes. I've had many colleagues in the medical profession with this disease, many didn't survive and some had significant side effects from surgery. Therefore I've been checking my PSA for 25 years. My urologist said to do either surgery or radiation. When I mentioned brachytherapy I got the usual: "not many people do that" bullsh_t. I was happy to tell him how happy I am to go to LA for a week, etc. Was hoping to hear some thoughts, etc. from members here, especially Tall Alan.

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13 Replies
Tall_Allen profile image
Tall_Allen

Just this week, I was with a patient talking to Mitch Kamrava, who does HDR brachy at Cedars-Sinai. I've heard several negative reactions to Albert Chang at UCLA, so I always advise patients to talk to Kamrava too before they make up their mind. Kamrava is one of the (few) world experts in HDR brachy.

PopCubby profile image
PopCubby

I also liked what I had read about HDR Brachytherapy when I needed treatment 2 years ago. I was 74 when treated.

I had been on AS for 3 years at age 70 after Gleeson 6 diagnosis and favorable Prolaris results. Had second biopsy after 3 years and had Gleeson 7 (4+3) so needed treatment.

I was convinced that surgery was the way to go and interviewed surgeons at Penn, Johns Hopkins, and Fox Chase, but then heard about the HDR Brachytherapy program at Fox Chase in Philadelphia with Dr. Eric Horwitz. I had 2 treatments a week apart. My bladder was accidentally punctured during the first treatment (they claim this is very uncommon) so I had to stay in the hospital for 3 days until the bleeding stopped and my urine was clear. No complications after the second treatment, and I was back to playing softball in about 2 weeks.

Before treatment my PSA was 6.9. Six months after treatment it was 0.75. Five months ago, my PSA was 0.1. I get tested again next month.

I am very happy with the results so far. I have to urinate a little more frequently than before treatment, have urgency sometimes, and very slight leakage , but it's not a major issue. I can usually still get a serviceable erection using Viagra, but I needed that before the treatment.

One mistake I made was not having my hemorrhoids treated before the HDR. They are bothersome now since my bowel movements seem to be more frequent and some doctors will not treat hemorrhoids after you have had radiation treatment for PC. I had SpaceOar inserted before treatment, which is supposed to minimize damage to the rectum, but no one seems to know just how effective it is.

Best of luck with your decision and treatment!

Volcanologist profile image
Volcanologist

I had HDR Brachytherapy in March of 2022. Similar situation to yours except I had a 2cm lesion on multiparametric MRI, Gleason 3+4. I did mine with Dr. Chang at UCLA. I recommend him. I didn't have any problems with him, he was very responsive. He also is one of the experts in HDR, and has done thousands of procedures, although I am a proponent of talking with as many experts as you can before making a decision, so I would look into Tall Allen's recommendation of Dr. Kamrava. I didn't find any negatives on Chang when I looked into his background. I also recommend consulting with Dr. Mark Scholz at Marina del Rey. He is a prostate cancer oncologist. His whole practice is built around consultation and advice on what direction to take depending upon your specific type of prostate cancer and stage. He only sells advice, he doesn't do any procedures. He is very knowledgeable and stays up to date on what is working, and which doctors around the country are the experts and have done the most procedures in their particular field. I found his input invaluable in evaluating my options vs likelihood of a successful outcome in eliminating the disease with minimal morbidity. I have a science background, so I like to investigate and evaluate my options in depth, probably more so than most. So far I haven't had any side effects from Brachytherapy. My last MRI didn't show any evidence of cancer.

curtisbirch profile image
curtisbirch in reply toVolcanologist

I too had Dr. Stoltz lead me to HDR brachy at UCLA. They did my evaluation there. Looking at other treatments, whether LDR Brachy or SBRT, I was getting some doctors who told me my risk was high intermediate rather than simply intermediate. Those doctors wanted to use dual treatment. I was at 3+3 but upgraded by Johns Hopkins to 3+4 in a few cores. PSA 5.6-5.9. But it was the amount of PC (more than 50% of cores taken in the biopsy had PC) that was concerning to some doctors. My MRI showed what might be extra capular growth. But Dr. Dimanes and one of his support doctors, a woman of Indian descent (I wish I could remember her name as she was excellent - I should dig this up). They were incredibly helpful during the evaluation, which included a full exam using ultra sound. They were the only doctors I'd met who were confident that my PC was a perfect candidate for their mono treatment, HDR brachy. There was a mono treatment LDR brachy specialist at Kaiser in LA but I was turned off by having the seeds in my body for so long. I liked that it was only two treatments and the application of the radiation was precisely mapped. Dimanes' outcomes over the years seemed hard to beat (90-95% success - of course there are many variables to consider to make sure these claims of outcomes relate closely enough to your specific PC). The testimonies from patients that I had researched were great, people were out playing golf running, etc. days after their treatment. It was just the question of whether they had evaluated my PC correctly (in retrospect, they did more to evaluate my PC than any other doctor I had consulted with). Why were other doctors so convinced a dual treatment was needed? I got a second opinion on my MRI - and a doctor recommended by Dr. Stoltz at Cornell Weil in NYC said the concern of extra capular was most likely due to camera shake. I ended up doing HDR brachy with a student of Dr. Dimanes' at Kaiser Santa Clara (because he was in my health care system). It was absolutely the best decision I could have made. Being 53 at the time, there were definitely quality of life concerns with other treatments - especially surgery. It took me over three years for my PSA to go under 1. Now I'm at .65 and still going lower. I have no ongoing side effects from my treatment. I am convinced that the whole experience and ultimate treatment decision I made changed my life for the better.

Xcrunner1988 profile image
Xcrunner1988 in reply toVolcanologist

I was thrilled both times with Dr Chang. This go around his clinical fellows were great too.

Muggs1 profile image
Muggs1

Awesome, thanks so much

Xcrunner1988 profile image
Xcrunner1988

Greetings Muggs.

I have just finished a Brachytherapy salvage procedure at UCLA. Mine was done by Dr Chang who also did my first round back in 2015 at UCSF.

In 2015 the standard was one dose. Now 2-3. While I did have reoccurrence, it was still contained in prostate according to PSMA scan.

Every case and every decision is different but I’ve felt comfortable with the Brachy route. With a 3+3 and 3+4 Gleason on both occasions, I felt hard pressed to go the surgery route.

I did see the surgery team at MD Anderson this spring. Outstanding place but they were really pushing salvage surgery. For me, the side effects are so drastic I’d rather give the radiation another shot and then do salvage surgery later on if out of options.

So far round 2 went okay. Got one dose on a Tuesday and second on Friday. Couple of days of burning while urinating but that is getting better. About a week with bruising. Two weeks low energy.

A month out I’m planning on getting back to jogging tomorrow.

If you have specific questions please fire away.

Vortex12 profile image
Vortex12 in reply toXcrunner1988

Getting a consult with Chang after meeting with MD Anderson in the morning. Can you request a general anesthesia or do you have to get the spinal block. I would prefer to be completely out. Also, as a practical matter where do you stay for the week?

Xcrunner1988 profile image
Xcrunner1988 in reply toVortex12

You are out for this procedure. “Twlighted” so not deep under but clearly out.

I’m lucky enough to have hundreds of thousands of Marriott points from a lifetime on the road. We stayed at Hotel June between LAX and UCLA. Safeway and other food options just off property. Easy ride to either of the two UCLA sites.

Muggs1 profile image
Muggs1

TallAllen said a couple of guys with uncomfortable side effects found Chang unsympathetic. One reason I want him is to reduce the side effects. I don’t know anything about Kamrava and it seems to me UCLA does more than Cedar Sinai. I’m an anesthesiologist & actually did that for a guy here ( San Antonio) who used to do low dose brachy but is retired. I feel like one should use whoever does the most. Do you recall how you initiated contact? Do you start with the UCLA website or email Chang directly? Someone who used Kishan for SBRT said they emailed him. Finally, how long did it take to get treatment once you contacted them? I’m wanting to do early January. Again, thanks for your time & help.

Xcrunner1988 profile image
Xcrunner1988 in reply toMuggs1

Regarding timeline: High PSA in January 2023. Ultrasound and Scan in Feb/March. Meetings with MD Anderson and UCLA in March. Treatment in August.

Xcrunner1988 profile image
Xcrunner1988

sorry that I missed this but I think I responded in direct message.

I was initially diagnosed in 2015. I went to UCSF for consult. When I chose radiation they assigned me to Dr. Chang.

I have since moved twice and also knew he had left for UCLA. I was able to hunt him down and set up a consult to discuss situation and salvage options.

Xcrunner1988 profile image
Xcrunner1988

a further note: three months out from treatment, PSA dropped from 6.8 that day to 0.4.

Chang thrilled with result. Next PSA next month.

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