I now will need to decide on SBRT or Brachytherapy
My original post is here:
https://connect.mayoclinic.org/discussion/received-the-news-on-halloween-i-have-prostate-cancer-need-advice/
To do a quick summary:
I was diagnosed with 2 cores of Gleason 6, 1 core of Gleason 3+4=7 (40% of the core, G4=10%). Two lesions; one on each side. One abuts the capsule. Dr. Jonathan Epstein did a 2nd opinion on the slides and came back with exactly the same diagnosis, even down to the percentages. Decipher score is 0.57. PSMA shows cancer is confined within prostate.
We met with Dr Kishan, UCLA, yesterday. A young doctor with an assistant came in first and reviewed my current status. My IPSS score is 3. No issues with bowel. I do have to take a 1/3 of Viagra pill each time.
Dr Kishan came in soon after. He is a very pleasant doctor to talk to. He is very patient and confident that his SBRT method can provide good survival and control of the side-effect issues. None of these are 100% of course, but close. Sextual side-effect is a lot higher.
He puts me in Unfavorable Intermediate state because of my bi-lateral lesions; one abuts the capsule, and my Decipher score (0.57), therefore Active Surveillance is out. Even all forms of Focal therapy available in UCLA are not recommended in my case.
He points to my Decipher report, 10 year metathesis rate of 2.7%. I could add 6 months of hormone therapy after SBRT and reduce that rate by 1.3%. I asked what would he do, he said he will not elect to have hormone, but he offers it just for those patients with less risk tolerance. I think I am going to decline the hormone.
I asked about Brachytherapy by Dr Chang, UCLA. He said SBRT has slightly less side-effect than Brachytherapy. But either treatment will provide equal survival rate in my case. If I schedule whichever treatment more than 6 months after diagnosis, I will need to get a new MRI. So, I am planning on a March or April timeline.
I did a swab for Prostox at the clinic and now await for the result. If I am sensitive to high dose treatment, I will have to do low dose such as IMRT.
I still have an appointment with a surgeon, and later with Dr Chang on Brachytherapy. I will likely choose between SBRT and Brachytherapy. I will be doing a lot of research on short term, and long term side-effect of both radiation treatment. Any feedback on either treatment is highly appreciated.
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@frank1956
I had SBRT treatments to my spine and drove there and back each time. Really no side effects right away, In my case, I had no side effects at any time from that treatment, three years ago.
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1 ReactionFor the planning session we drove in the night before and stayed at the Luskin Conference Center Hotel (just a few short blocks from radiation oncology), mostly because it was a long day of planning (including rectal hydrogel insertion) with a very early start.
I drove myself back and forth the day of the first treatment since I was told there would be minimal side effects for the first ( which was true) and it was on a Thursday with next treatment not until the following Monday. When I returned for the remainder of the treatments I stayed again at the hotel for the duration (a total of ten nights). My spouse had to be at work and couldn’t stay the duration, but came back and forth as their schedule allowed and then drove me home at the completion of the SBRT.
UCLA has three hotels in the vicinity with discounted rates for medical center patients and families. The Luskin is the most convenient to Rad Onc, has an onsite restaurant with decent food, and they placed a mini refrigerator in my room for me ( there is a Ralph’s and a Whole Foods both nearby) allowing me to keep some beverages, snacks, and light food in the room.
https://luskinconferencecenter.ucla.edu/
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3 Reactions@rbtsch1951 Thank you for the hotel information. I live 20 miles away but 405 can be brutal. It could take 30 to 90 minutes to get there. My wife no longer drives. So, I might do what you did and stay there a few nights.
If I chose HDR Brachytherapy, I think it is 2 sessions under anesthesia. I will definitely look into hotel option.
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2 Reactions@frank1956
There is actually free or greatly discounted overnight stays Supported by a few groups.
The American Cancer Society has a site to help get lodging for Prostate cancer patients.
https://www.cancer.org/support-programs-and-services/patient-lodging.html
There are others as well.
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2 ReactionsA few months ago, way back, when I thought my diagnosis was unfavorable intermediate risk prostate cancer, I found that this interview with Dr. Neil Desai, an eminent radiation oncologist at UT SouthWestern, was very helpful as I prepared for my first interview with a radiation oncologist: https://www.youtube.com/watch
The RO I saw after my intensive study of "unfavorable intermediate risk", straightened me out as to what my diagnosis was: I am “high risk”. So, I haven't researched much further into treatments suitable for your case. I have put in a lot of effort into studying what advocates for brachytherapy have to say.
Regarding what you were told, ie. “but either treatment will provide equal survival rate in my case”. If anyone told me that these days, I would be careful to find out precisely what the doc was talking about.
“Equal survival” data often or maybe even all the time, isn’t necessarily understood by patients.
Eg: let’s say treatment one results in a certain rate of the cancer coming back, with more and more failures as the years go by. And let’s say treatment two results in a much lower rate of the cancer coming back with less and less failures as the years go by. Because there are so many “salvage” therapies available that can keep patients alive when their initial “definitive” treatment fails, statements like “the two treatments offer equal survival rates”, can be, and are, made.
From my point of view as a patient, there is a big difference between treatments that have different rates of recurrence. One primary thing I’m looking for in a treatment is the highest chance of no recurrence during my lifetime. I do not view an alternate treatment that offers “an equal survival rate”, that has a higher chance of requiring salvage therapy or many salvage therapies, to give me this equal survival rate, as in any way equivalent.
Of all the docs touting all the different therapies that I’ve studied, it is only the brachytherapists who try to make this clear to patients.
Mira Keyes is a former president of the American Brachytherapy Society. She is very actively promoting brachytherapy. In one video: “Brachytherapy: The Royal Flush of Radiation Treatment for Men with High Risk Prostate Cancer”
She concluded the video with a story:
“There's two men - they both die at the age of let's say 92.... ...One was actually the father of Peter Grimm… one of the fathers of modern brachytherapy.
Peter's dad in his early 70s got prostate cancer. He got brachytherapy and he was well until he died when he was 90. His very best friend also was diagnosed with prostate cancer in his early 70s. This man had radical prostatectomy which failed then he had salvage radiation which failed then he had a loads of different systemic treatments. He traveled around the world to find what would be acceptable.
At the end of the day both men died when they were in their early early 90s. Except that the friend of Peter’s dad spent from insurance money and his own pocket about two million dollars. [Compare: Peter’s dad never had any recurrence at all].
This is the difference we are talking about.”
A great discussion between brachytherapists is this 2022 LDR Brachytherapy Symposium video https://www.youtube.com/watch
PS. I lean toward HDR, especially if I had any doubt about the technique or expertise of the LDR practitioner. I like that with HDR the radiation source comes out after a short time in your body. They put in their tubes and to some extent if they aren't exactly where they intended to put them they can compensate by adjusting the rate the source passes by particular areas, so possibly less skill is required. I also don't like that LDR seeds sometimes are found elsewhere, like in your heart, or lungs. But the radiation is far stronger with HDR. If I had a choice between expert experienced LDR BT and HDR BT I wouldn't see a big difference.
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2 ReactionsWhat is your age? Apologize, If you posted your age and I missed it.
Providing that info will allow others to provide input/info.
Best Wishes
@charlesprestridge I just turned 70. I also have a co-morbidity. I was diagnosed with Lung cancer early last year. After surgery that removed one lob, I am now in remission. Two cancers in one year.
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3 Reactions@climateguy Thanks for a very thorough post. Peter's father's friend, per video, had a RP some 20 years earlier. Maybe surgery was not as advanced as it is today.
I am looking into either SBRT or HDR Brachytherapy. From what I read, they both are equally effective. UCLA offers both. The 2 doctors are in the same Radiation Oncology department. Brachy seems to have less side effect in some areas. Modern SBRT has better control in urethra stricture.
@climateguy I think brachytherapy is an excellent modality and its various combinations with SBRT and IMRT offer a lot of tailor made options.
However, the comparison of the two men in Dr Keyes story is totally invalid; no one knows their Gleason scores, their PSAs or if there was spread before treatment.
This is over 30 years ago! No Decipher, no PSMA, no genetic testing, nothing…
So to compare the two men makes no sense at all.
Your decision to choose brachytherapy is going to be based on so many factors that simply weren’t available back in the day.
Phil
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1 Reaction@heavyphil Good points. I wonder if comparing the two men might make sense given enough detail. I'll write Dr. Keyes and tell her about this skeptical heavyphil guy.
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