I thought I would check in here as I begin my treatment journey at MSKCC in NYC. I have chosen to treat my G7 (3+4) cancer with MSK's version of SBRT called "MSK Precise" -- My doctor for this procedure is Dr. Michael Zelefsky.
On Monday, 10/18, the procedure for my fiducial markers and rectal spacer was performed. Overall, everything went well. I was still a bit woozy from the anesthesia on the car ride home, which was weird, but no physical problems today. I have to take Cipro every 12 hours.
Actually, the "toughest" part of this procedure was the waiting -- I was there pretty early and prepped in a room, but then had to wait a bit, and, of course, that felt like an eternity. Your mind has a tendency to "think too much" in those situations and gets ahead of itself thinking four or five steps down the road with the "what ifs." I just tried to stay focused on the matter at hand -- just concentrate on this first step.
My next step is the simulation next week.
I figured I would just post about my journey here in a series of posts because it might prove beneficial for those considering SBRT for treatment, in general, or MSK Precise, in particular. I'm fine with answering any questions.
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Hope4Happiness
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Hello Tall_Allen -- the SpaceOAR was discussed upfront, but the focus was on the pros. I followed Dr. Zelefsky's lead on this one. I see you have posted some findings from studies that the SpaceOAR is only making marginal differences in long-term toxicity. Right now -- a bit more than 24 hours after the procedure -- I'm feeling fine with no real discomfort or such. Are there any other such parts of the procedure going forward about which I should ask more detailed questions?
I must admit that I spent so much time weighing the pros and cons of surgery vs. HD-Brachy vs. SBRT that once I settled on SBRT and Dr. Zelefsky, I just started following MSK's procedure.
I agree that it's impossible to do better than Zelefsky.
I just had a conversation with some ROs who agreed that SpaceOAR benefits about 5% of patients but the downsides are its cost: about $4000+ physician charges+anesthesia+abx+occasional morbidity. Morbidity reports include:
Unfortunately, its use has become almost automatic among some ROs and patients often demand it. I think it bears discussion - it is, after all, an expensive, invasive procedure.
Tall_Allen, I can also confirm that in my discussions with Zelefsky, Space Oar was almost a prerequisite for treatment. He didn't even really advise that I "think about it" or "do my own research". He just felt that it was the thing to do as a worthwhile precaution against tissue damage. Who am I to challenge that? At a certain point if I'm going to trust a physician with my life, I just had to surrender, and get on with it.
Wondering why you chose SBRT over HD Brachytherapy ? I’m scheduled to have salvage HD brachytherapy with Dr. Zelefsky…(As T_A has said he is “tops”…) Dr. Z felt this would be the best choice for a possible cure. I originally had external beam radiation n 2004-5…
I also looked at the the pros and cons…My concern has been about side effects, both acute and late toxicities…Did this play-into your decision….
-- G7 (3+4), grade 4=10%, diagnosed after biopsy, June 2021
-- Decipher score = .22
After comparing the cure rates of surgery vs. radiation for my case as well as the side effects, I chose RT. After research, I landed on either HD Brachy or SBRT. After looking at the long-term success rates and side effects of both of those procedures, I chose SBRT because of my access to Dr. Zelefsky at MSKCC and my conversations with him.
Any idea what the total cost of the set of procedures is? I am out of the country and finding that none of the supplement plans in my home area give me access to a top doctor and hospital in network so keeping just A and B so I can go anywhere when I need treatment. However not being in the US it is hard for me to get prices from the top hospitals. They want you to meet with the doctor.
I am trying to figure what my 20% B copayment will amount to
Unfortunately, I’m not exactly sure what total cost is. Once I decided on SBRT, I contacted my insurance company to find out if they would cover it (MSKCC is “in network” for me). Once approved, I just clarified with my insurance what the deductible would be as well as the maximum “out of pocket” costs.
Best of luck to you, H4H... I'm about to begin the same treatment at MSKCC myself with Dr. Daniel Shasha. I had my simulation this past Monday, and begin Precise treatments on 11/4. The simulation took about an hour and a half and was no big deal... a CT Scan followed by an MRI and making a plastic mold for the PRECISE procedure. They place four small pin prick "tattoos" on you with a needle and ink, which took a few seconds and was the only uncomfortable part of the session.
I also had HD Brachytherapy on 10/1. Less than three weeks out, I sometimes forget it even happened. No major side effects other than some very minor and painless bruising and some fatigue setting in now. I was back to business as usual a few days after the procedure.
I did have SpaceOAR placed as well during the brachytherapy procedure. To Tall Allen's point, it wasn't much of a discussion, just presented as part of the overall HDR/ PRECISE treatment regimen. It caused some mild discomfort initially, but I barely notice it now. I'm thinking if it helps reduce long term rectal side effects, even slightly, it's worth it and the discomfort has been minor.
I'll add that I have been impressed with every interaction I've had with the staff, nurses and doctors at MSKCC. The level of care is unbelievable.
I think whether to have SpaceOAR or not may depend upon whether you are intermediate or high risk. In higher risk disease I assume you may want the rectum to get some radiation. SpaceOAR would prevent that. You have to trust your doctor's judgment. Nevertheless, rectal complications without SpaceOAR seem rare.
Watch out for the CIPRO. Google up on it and read the side effects. I will not take any fluoroquinolones. I have the uro give me Bactrim DS Oral twice a day.
H4H-Sounds like a good start to the process. I'm one month behind you with the same diagnosis, same procedure, same MD. Sharing your experience is really welcome. I started out this journey at Mount Sinai and am so glad that I switched over to MSK. It's a whole different level of care. Maybe when this is all over we PC survivors in NYC should have a Zelefsky Alumni party. All the best to you.
Best wishes! I begin my sbrt journey this coming Tuesday at Duke with fiduciary/spaceoar placement. I’m apprehensive about all of it but chose this treatment over RP. 🙏🤞
Good Luck to you in your journey. You are in great hands. I myself chose RP after much "going back and forth" on treatment options. I will have my surgery at MSK on Nov. 10th and will begin my personal journey.
Interesting how different the experience is from one person to another. I had the markers and spacer placed yesterday. The procedure was over in 10 minutes (I was told) and I can say that the team are first rate as is Dr. Z. However, I arrived at 9:30 and didn't leave until 5:30. There were the usual and expected delays as other's have spoken of at MSK, as I did not get into the ER until about 12:30pm. The real delay was due to my inability to pee after coming out of post op. Something about the anesthesia ( a first for me ) just shut down the plumbing. I was doing everything but dancing to get it moving. Dr. Z came and said not to worry about it, happens all the time. they gave me a FloMax. Finally after about the first 200cc's and 1.5 hours things started to move, but as I continued to drink it was not coming out as fast as it was going in. The nurse kept checking my bladder capacity with her portable sonogram and it was still above 200cc and they wouldn't let me leave until confident that I could vacate fully. After about three hours of this I said "if I don't stop drinking water, I'll be sleeping over". So the nurse and I agreed to stop and subsequently I started to empty the bladder to the resident MD's approval. I will also admit to being pretty tender today, about 36 hours after the procedure. Nothing big, no need for Tylenol, but pretty tender just the same.
Yes, there are surely going to be differences. I urinated like a racehorse about 15 minutes after waking up from the anesthesia from the fiducial/SpaceOAR procedure.
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