Update on Research

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guybyny
New Member


Date Joined Nov 2012
Total Posts : 12
   Posted Today 1:30 PM (GMT -7)   
So I thought I would bring all up to date on my research since my last post.

I have met with a local radiological oncologist (Dr. Lipzstein); a Cyberknife specialist (Dr. Katz) and this morning had my MSK consult with Dr. Koutcher. I have also read "Invasion of the Prostate Snatchers" and Walsh's "Surviving Prostate Cancer". I have also re-connected and consulted with my primary as well have talked to many people who have gone through treatment.

about the MSK consult. You see a screening urologist who has your slides re-read (though my re-read wasn't available at the time of the consult), does a full examination and then engages in an conversation with you talking about the various treatments appropriate and, if you decide to seek treatment with MSK, will coordinate and then turn your case over to the appropriate oncologist or surgeon. Dr. Koutcher is a self-proclaimed conservative in his approach to treatment and we began by discussing active surveillance.
Active Surveillance - MSK has over 1000 patients in their AS protocol which requires an upfront biopsy, PSA' s every 3 months and an annual biopsy. 1/3 of their patients end up receiving a definitive treatment within 5 years and and ~5% of their active surveillance patients "miss the window" and have their cancer metastasize. Best curative modality for me, in his opinion was open RP because of my age and the 25-yrs of outcome data with this treatment. He recommend Dr. James Eastham, Chief of Urology Surgery and someone who performs 300 procedures/yr. We discussed robotic surgery and the quicker recovery and less blood loss - but he claims that side effects are no different from open RP, about 50/50 for ED but there is only about 5 years of data on efficacy and so, his conservative nature leans towards open RP. Then we went on to radiation. He leaned towards IMRT because of the 15-years of data and indicated that the ED was similar to RP with small % chance of urinary and/or rectal side effects. Recommended the MSK guru, Dr. Zelefsky or Marissa Kollmeier for the procedure. Finally LDR Brachy was 4th choice with lower ED (35%) but likely urinary burning for a year. When asked about SBRT didn't believe that MSK was using it for prostate cancer.

MSK sets up an online account for you where you can do things like leave non-urgent questions for your doctor, make appointments and see you bills.

What has my head spinning a bit was that I was fairly certain that I had ruled out AS, surgery and IMRT before this session, and these were recommendations #1, 2 &3. AS because of wanting to avoid the unpleasant biopsies and the chance of missing the cure window. Surgery because I'm just knife adverse and don't want to deal with the recuperation process ruled out because, out of convenience I would seek treatment locally in a facility that uses IGRT and I have some concerns about the long-term effect of the 48 daily CT Scans (to line up the radiation arm) that I'll receive.

Cyberknife seems promising but only 5 yrs or so of data makes me hesitant. Also a little more inconvenient than brachy.

So, by my process of elimination, it may be LDR Brachy at MSK for me - but I've not yet locked in my final answer and would welcome any insight.

Thanks

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted Today 1:52 PM (GMT -7)   

Eastham and Zelefsky are world-class.

Regarding those who started initially on AS but eventually metastasized, keep in mind that generally these are the type of cases which also metastasize after surgery or other treatment, too...the risk is essentially the same.  Unfortunately, there are a very small percentage of cases which essentially cannot be stopped…regardless of treatment.  This reality gives rise to the well-known quote”

"Is cure possible? Is cure necessary? Is cure possible only when it is not necessary?"


bluebird123
Regular Member


Date Joined Aug 2012
Total Posts : 443
   Posted Today 2:20 PM (GMT -7)   
Hi guybyny,

I know a bit about some of the doctors you have mentioned and about treatment in NYC. My husband recently had RRP in NYC and we have friends and colleagues that have used some of the doctors you mentioned. I would suggest that you meet with Peter Scardino, head of the AS program at MSK (if you can get in to see him, maybe Dr. Koutcher can get you in), James Eastham and either Michael Zelefsky or Marissa Kollmier. If you were my husband I would want you to meet with a specialist in each of the modalities recommended. My husband has a colleague who is a patient of Peter Scardino and is doing well with AS. He is older than you are but you might want to discuss the program with Dr. Scardino.

My husband and I interviewed two surgeons in NYC. James Eastham was one of them. My husband spoke with some of his patients that he knows through his professional network. They had almost no side effects from their robotic surgery with Dr. Eastham and the cancer has stayed away. We found Dr. Eastham to be a brilliant and impressive man. He will suggest the type of surgery that he would perform should you decide on surgery and use him. He told us that he only does open surgery if there is a significant tumor there. With your low amount of cancer the odds are that he would suggest robotic surgery for you.

We have a friend that did brachytherapy with Dr. Zelefsky and is doing well. He has a good reputation.

Once you decide on what type of treatment that you want, if you were my husband I would want you to consult with at least one other provider of that treatment. If you want a second opinion on robotic surgery I would suggest Dr. Ash Tewari at NY Presbyterian for robotic and for open I would suggest either Peter Scardino at MSK or Herb Lepor at NYU.

For a second opinion on radiation I am not as knowledgable. My husband met with a radiation oncologist at NY Presbyterian and one in the NYC suburbs. We thought that the radiation oncologist in the suburbs had more modern equipment and would have used him if my husband had done radiation. We didn't meet with Dr. Zelefsky because it took a long time to get an appointment, and my husband made a decision on treatment before the date of his appointment with MSK radiology so he cancelled it.

We found making a decision to be a process that involved speaking with surgeons and radiation oncologists. We did not meet with an oncologist - maybe we should have - but I don't know if it would have made any difference.

Post Edited (bluebird123) : 12/20/2012 2:10:13 PM (GMT-7)

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