After 3 plus years in active surveillance and 3 month check ups, my PSA jumped ( in a 3 month period) from 3.8 to 5.7. The MRI scan showed that the lesion is growing larger from MRI taken 3 months earlier).however it is still encapsulated
After much consideration of all options of treatment, I am leaning toward the non invasive Cyberknife radiation through Winthrop Hospital in NY.
During the consultation, I was given a choice of a one time receiving a rectal spacer or a suppository ( to be delivered at each of the 5 sessions)
The delivery of the markers through perenium via needle sounds painful
Has anyone who has had this radiation procedure have any experience or suggestions to share about receiving a rectal spacer or suppository for this procedure?
Pros? Cons?
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The transperineal fiducial marker placement was not at all painful - they used a pelvic plexus nerve block - I didn't feel a thing.
By suppository, I suppose you mean a rectal balloon? It is completely unnecessary with CyberKnife because it is monitoring the position of the fiducials intra-fractionally. A full bladder is necessary, however. The rectal balloon deforms the shape of the prostate and lifts most of the rectum away, but it presses some of the rectum into the prostate.
You will note that SpaceOAR was not validated for SBRT in that study, which features much better intra-fractional motion tracking than IMRT. You may be interested in reading some downsides:
What really turned me is the experience of a friend. SpaceOAR was inadvertently injected into part of his prostate tumor abutting his rectum. It "protected" a part of the tumor from his radiation therapy, while the rest of his prostate tumors were destroyed. It progressed and is now giving him all kinds of problems. Because it was pressed into the rectal wall, it is almost impossible to eradicate now.
I think doctors push it because they can charge for placement as a surgical operation.
Thank you for putting my mind at ease regarding the marker placement.
The suppository was not a ballon ( that is used in proton). The dr described an actual capsule to be inserted into rectum prior to each dose ( 5 total) of radiation. He said the army used it to protect soldiers from radiation in time of war.
Ouch for your friend regarding the rectal spacer. I was told it would dissolve and be passed by body
Are they still using amifostine? Dr. Allan Katz, who pioneered its use when he was at Winthrop, abandoned it because he didn't think it did anything. And it may leach out into the serum where it can "protect" the tumor. I guess they still follow his original protocol. Rectal toxicity is quite low, and measures beyond careful contouring and ensuring dose constraints are met are not required. Make your RO do his job. You may want to consult with some other ROs, like Allan Katz in Flushing or Michael Zelefsky at MSK. You have time. Here are some questions you may want to use:
Yes, it dissolves. But before it did, it prevented radiation from reaching the full extent of the tumor. It can protect tumor tissue just as it "protects" rectal tissue.
Thank you for the question list. They are all reasonable and dr jonathan haas ( head of Winthrop radiation) has already supplied me with info to satisfy most of them. He is always open to questions and has been very supportive and encouraging. Unlike any other doctor I have seen, he gave me ( when requested) a contact list of 50 of his former and current patients to call about their experience with him and cyberknife treatment. I called them all and was somewhat relieved after hearing their responses; especially regarding ED side effects.
As for dr Katz(!) . I saw him 3 years ago after reading his book about cryogenics....I was emphatically UNIMPRESSED after meeting him..... his Baptist minister hellfire oratory during my visit was met with a blunt response from me “ we are done here” .
It seems dr Katz does not support “ active surveillance” under any circumstances.
2003. After Brachytherapy, I had 25 sessions on the brand new IMRT. I think two machines available at the time. Dr Brian Butler used a rectangle catheter with balloon attached. It was his normal procedure. In fact, 17 years later he still uses the method. At the time he was Chief on Radiation Oncology at Baylor College of Medicine; now at Cornell-Weill School of Medicine. Worked extremely well for me in that I came away with very light scarring on the left side of my colon only. My Gastroenterologist told me that in 20 years, he had never seen such minimal scarring after external radiation. I have had my colon scoped every three years since I was 40. I am 73.
Thank you, I have been to MSK for my PROLARIS genetic test. Although I had just had a biopsy with NYU ( competing institution) the dr at MSK wanted me to have a biopsy done by MSK in order for them to work with me for Active Surveillance.
I said NO and never returned.
MSK has a great reputation, however my experience with them was not encouraging; the doctors I met were arrogant and not helpful
I have met others who did well with them and had a very good experience.
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