Decision time

Hello,

First post here but quick question. One year ago I had a radical prostatectomy at Mayo Clinic in Rochester by a very accomplished surgeon. Had one lymph node that was cancerous and recent PSA was .20. Radiation therapy is option. Should I do this at Mayo or come back to local hospital where I am not certain about quality? Six to eight weeks in Rochester is a longgggg time but willing to do it if it improves outcome. Any guidance would be so appreciated.

23 Replies

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  • Blount,

    What state do you live in?

  • Mississippi

  • My case was similar to yours, Had Gleason 4+4, T3N1. Got the best DaVinci surgeon in Michigan and my Radiologist was listed at one time as one of the best doctors in Michigan. Sometimes there are negatives on going with “the best”. The urologist department treated me like a number. Because of the fame of the surgeon there was little time for individual care. In fact, after the operation, the post operation meeting with the surgeon occored over a nurses cell phone. The followup appointments were about the same. I have a very rare form of cancer (Ductal). The surgeon was to busy to address this. While he is a gifted surgeon I have to wonder if I would of been better off with a less famous surgeon.

    Could you please state the primary hospital that you go to and the names of the radiologist that are available locally? Hopefully someone here could give you background information. You could also do a Google search. One quryto ask is how your local radiologist how he/she align up the radiation for zapping. For me the used both NMR and CT scans. That is critical in minimizing side effects,

    As far as your treatment goes I would definitely recommend radiation (I had 38 rounds). I would also consider the recent trials which showed advantages in taking Lupron with Zytiga in cases like ours. A reference is listed below.

    nejm.org/doi/full/10.1056/N...

    Walt (a retired chemist, not a MD)

  • Thank you so much , Walt , for you thoughtful response. You articulated some of the concerns I have.

    I live in Jackson, MS and have done none of the research on local radiologist yet. Do you think there is much difference in radiation treatment from one place to another or is just a technical mechanical issue of zapping the proper spot?

    Also I am grateful for your suggestion about Lupron with Zytiga. I am new to all this but I do know my chance of beating this rises with my ability to be knowledgeable about my options.

  • Both the equipment they use than the experience of the radiologist matter. In addition, it matter on how up to date they are on the latest treatments. I had 38 rounds of radiation about 13 months ago, Now a lot of articles state that shorter but stronger doses are better.

  • The equipment available is critical, because advances in the technology are coming along very rapidly. Example: our local cancer center built a new building to house a "state of the art" new machine. It was installed and running. Our local PCa support group scheduled a tour of the new facility about 6 weeks after it opened -- we were supposed to have a "mock treatment" demo. When we got in there we found the machine in pieces all over the room. The technician from the manufacturer was there and explained that there had been a major advancement in the technology and he was installing it. He further explained that on almost every routine service call he tweaks or upgrades something ... the technology is advancing that rapidly. Unfortunately, some equipment, while still pretty good has reached the end of it's upgradability or the facility doesn't fund fixes and upgrades. That may be typical of smaller rural places, but not exclusively - my local center would be considered small and rural, doesn't fit the presumption. OTOH, I attended the "opening" of a new machine near Boston and the guest speaker was from one of the big name centers. His comment was that his center had been leap-frogged by this one, he'd be sending patients to the new facility. So, Blount, your research needs to focus on who has the newest machines and who is funding the upkeep and staff training to be top notch.

  • New protocols for radiation are being released and implemented. Our local cancer center just went from 44 days to 28 days and I know they are looking forward to radiation protocol that is only 5 days. I'm not sure whether any of that applies to your specific situation, but it says that radiation technology is changing rapidly and that you should be asking questions about what really would be required. BTW, Mayo has branches in Florida and Arizona, they might be more convenient for you (especially vs. winter in Rochester). Once the protocols and orders for your treatment are established you are really in the hands of a technician, so it is not unheard of to have the radiation done locally under the supervision of your primary radiologist/urologist.

    In my situation, also in winter, it was going to require a 2-hour drive each way for 40 days. My rad/oncologist said "I have a colleague who is only 40 minutes from your home," and set me up with him.

  • Thank you for your good counsel. I was not aware of the new and shorter radiation protocols being developed.

  • I am grateful to you for the links. Looks as if I need to do some sel education on those options.

  • Thank you Berkshire Bear. You sharing your knowledge is most appreciated by me.

  • First of all, on the question of Mayo vs. local Mississippi.

    To some degree, it's a crap shoot. As others have said, a famous doctor can screw up and a young doctor not far out of med school can do a sterling job. I think that if I were you I'd want to meet the prospective doctors. Unless you're a doctor or physicist it might be hard to evaluate their competence, but you probably can evaluate how sincere they are, how interested they appear to be in helping you, how well they listen to you and answer your questions, how patient they are and whether they want to hustle you out to get to the next appointment, and how honest they appear to be (e.g. I won't trust a guy who tells me that he cures all his patients and/or they have no side effects.) The local guy (or gal) might pass these tests with flying colors and the Mayo guy might not. I'd want to meet him too before I committed to treatment with him.

    Besides generally getting a feel for the docs, I'd ask them specific questions. Ask how they'll target the x-rays. How will they know or guess where the tumors are to be treated? How will they balance risks and tradeoffs between radiating more tissue and causing more side effects vs. less tissue with more risk of missing some cancer.

    Also ask about adjuvant hormone therapy (HT). It may be that you can get a dose of Casodex followed by a shot of Lupron right now, and not have to worry about rushing to get radiation. The HT will be killing off or stifling the cancer while you wait - maybe making the radiation more effective too.

    Staff are important too. The doc typically plans the radiation and technicians carry it out. It's often the case that the nurses and technicians at small town hospitals are very committed to their communities and do a good job.

    Since you don't want the cancer to escape while you're deliberating all this, I'd go ahead and make appointments now with the local center and maybe Mayo too and maybe start HT.

    A second issue is high dose (in fewer sessions) versus low dose (in more sessions) radiation.

    If you get treatment locally, this may not be an issue for you. I was treated with 25 sessions of adjuvant external beam radiation (radiation given as part of a larger high dose rate brachytherapy treatment.) I was out of the clinic before 10 am every morning and at work by 10:30, usually working until 6:30 or 7 to get my full day in. The time commitment didn't turn out to be a big problem.

    However, even if it's convenient, you may find that the newer, fewer sessions techniques are not an option for what you need - salvage radiation. The beams will not be tightly focused on a small prostate gland but spread over a larger area around it. I wouldn't be surprised if that's done with the lower dose, more sessions technique, even at places where they offer the higher dose radiotherapy. However I could very well be wrong about that. The docs will know way more than I do about it. But in any case, I have not heard that there is any difference in outcomes. As far as I know, both the older and newer techniques are equally good.

    Best of luck.

    Alan

  • What exactly are they going to radiate?

  • Not certain yet. My doctors at Mayo believe the cancer is returning because of a steadily rising PSA even though I had a radical prostatectomy one year ago. Latest PSA was .25 after being undetectable three months after surgery. Tests show no metastasis now but doctors believe that I should be prepared for further treatment and have me on a three month check in. Kind of nerve racking.

  • Good Morning Blount,

    A very basic question is proton beam radiation vs. more normal IMRT radiation? Trade offs with each, especially in cost if you are not on Medicare.

    I had 44 sessions of proton to my prostate and 30 to lymph nodes at a facility recommended by Dr. Charles "Snuffy" Myers.

    One of the highly regarded IMRT sites is Dattoli in Sarasota, FL. Not a bad place to winter!

    Best wishes. Never Give In.

  • One major factor that led me to do my IMRT at Sloan Kettering In NY ( near where I live ) was the fact that in addition to utilizing radiation oncologists they also utilize physicists to ensure the precise set up , dosages etc . I agree with others the availalable machines are also a factor in utilizing theses major medical centers .I had NO side effects during , post or since my radiation treatments in 2015 . I wish you the same

  • Very reassuring that you had no side effects from radiation. I wonder why it worked so well for you but yet I hear from others complaints of a host of problems.

    Thank you for sharing with me your experience.

  • Does your local hospital have state of the art equipment? Will your local hospital allow Mayo to be part of your radiation planning? Getting treatment near your home is less disruptive of your life.

  • Thank you. All are excellent questions that I need to research locally. Tough call since I know Mayo has the most state of the art technology.

  • Everything about IMRT is computerized so human error is unlikely except during the planning stage. In my view the most important thing is the experience of the RO and his team particularly the dosimetrist who develops the plan. The area around the prostate (rectum and bladder) are very sensitive so accuracy is paramount. I learned this the hard way. I had bad rectal bleeding after SRT at a small local convenient hospital. When I had recurrence in lymph nodes I went down to Sarasota for two months to an expert, Dr Dattoli who treats nothing but PCa. We’re talking two linacs running all day five days a week doing nothing but radiating prostate cancer wherever it was located ! The staff have decades of experience. What a difference!

    Bob

  • Hi Blount your case is exactly like mine. My surgeon highly recommended radiation. I had surgery this July so I’m still incontinent and waiting. I was told it didn’t matter and go for convenience but I’m from Houston and we have a lot of options

  • Did you have a riding PSA after your surgery?

  • Meant to say "rising" rather than "riding."

    I do appreciate your response.

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