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Treatment Decision: SBRT

MCinNC
Posts: 40
Joined: Sep 2010

I have been on AS since 2010 and due to progression shown in a January biopsy (Gleason 6 to G 3+4, 1 core to 3 cores) I posted earlier that I was considering ending AS and deciding on a treatment option.

After making the rounds again and talking to various "experts" in both the surgical and radiation fields, I have decided to go with Cyberknife.  I've also decided to go to NYC (from NC) to get it in order to use Dr. Alan Katz, who is well known in the CK for PCa circles.  

I had the relative luxury this time around of having done this before in 2010, and in having read everything relevant I could get for the last 5 years.  In 2010 I was scared, and totally uninformed, and could not believe how hard it was to get an expert opinion on what options made the most sense for me.   That all options were good options was certainly nice to hear, but not helpful in actuallly making a decision.  Anyway, after a very stressful couple of months I chose AS.  I did it after educating myself to the point that I had sufficient expertise to make that very important decision.  I had no desire to become the expert, but I learned that it was necessary and unavoidable if a common sense, fact based, decision was to be made.  I believed AS would delay having to live with unwanted side effects for years, and that I would not lose the opportunity to get curative treatment if the disease progressed.  I was followed by a local Uro and a RALP specialist at a local university with periodic biopsies, PSAs and DREs.

So, 5 years passed, the disease is now advancing, and I am choosing a treatment.  While there are no guarantees with any choice you make on these issues, I believe AS was the right decision for me in 2010, and that treatment is the right decision for me in 2015.

My treatment decision now has been much less emotional, and there have been fewer surprises in the process.  I knew what to expect from visits with the various specialists.  There are still Drs out there that want to listen to a 2 minute summary of your case, give their opinion as to whether treatments they specialize in are appropriate, and then end the session and let you talk to a nurse or resident for quesitions.  To state the obvious, this is not what a PCa patient wants or needs.  

Because you are the one that is left to make these bottom line decisions - not the professionals with all of the medical training and experience - you must understand what the rationale and thinking is when judgment calls are made.  The specialist has to explain to you why something is a good option or not, and help you understand what technology or biology is involved to make it so.  Data about the chances of success and the likelihood of adverse side effects should be given to every patient.  And data should relate to the particular doctor and institution, not some national average or study from somewhere else.  

Well, of course, the above is not what you probably get.  But, on a positive note, when you do run across someone who does speak to you in a way that makes sense, and addresses your questions in a thorough way, they stand out and you notice them.  What they say is credible and extremely helpful in moving along the process you are undertaking.  Thank goodness for those guys.   

In any event, I'm going to gear up for the preparation and planning for SBRT.  I'd much appreciate any comments, particularly from you guys who have already gone through something similar.  The likely scenario I'll have is spending two weeks away, the first for the preliminaries and planning, and the second for 5 consecutive days of treatment.  Any suggestions out there about how to handle logistics or things to do to minimize problems are very welcome.

Thanks again for your responses.

Mac

 

VascodaGama's picture
VascodaGama
Posts: 2547
Joined: Nov 2010

Mac

You followed the best way to deal with your case initially and now you continue with the best sequential. You are more mature and well prepared to confront the years ahead. You are a good example to the many in similar situation. Thanks for posting the news.

Best wishes for a successful outcome.

Your story is compiled in the links of this link;
http://csn.cancer.org/node/292216

VG

Old Salt
Posts: 483
Joined: Aug 2014

Of course, Dr Katz is very well-known as one of the pioneers in SBRT. The results that he has published do support the hypothesis that SBRT is at least as good as other radiation treatments for low and intermediate risk (prostate cancer) patients. But in case something doesn't work out, you can consider the SBRT/CyberKnife program at Georgetown U Hospital. Sean Collins MD, PhD, is in charge of that program and he is also a very active researcher with many publications.

I have been a patient of him since 2013 and can give more detail, if necessary.

CC52
Posts: 93
Joined: Nov 2013

Mac,

Like Old Salt, I too am a patient of Dr. Collins at Georgetown. You can follow my story here: http://csn.cancer.org/node/264905 if you like.

I believe you make a good choice with CK, and I believe Dr. Katz is active on the Accuray site for CyberKnife here: http://www.cyberknife.com/Forum.aspx?g=topics&f=2586

I hope you follow the suggestion by Hopeful to get more testing done before proceeding with treatment. Just be sure it's necessary to treat. AS has been effective for you to date, and perhaps you can buy some more time.

All the best, and I'd be happy to answer any specific questions you may have.

CC

hopeful and opt...
Posts: 2017
Joined: Apr 2009

Mac,

I remember when you first posted. There were very few of us at that time that followed an AS program.....since the environment has chanced there are more who follow this protocol.

AS has been successful for you. You have been able to avoid an Active treatment during this time, go on with your life, while being able to research your options. You are now able to choose an Active Treatment, no different than you could have selected when you were first diagnosed. 

 
In my opinion SBRT is an excellent choice. Dr. Katz has done the most SBRT's delivered by Cyberknife. He is regular publishes his results, which are impressive.
 
You may wish to contact his office for direction for a place to stay which they may be able to discount; since for the most part you will be able to continue with activities during treatment, you can vacation during this time of treatment, seeing the sights of  NYC. 
 
You might want to discuss concerns about follow up; will you need to see Dr. Katz in person, or can you simply send your PSA results to him for evaluation. Does he recommend that you have a local doctor to help with difficult situations from treatment; most of the the side effects are temporary. What are the qualification needed for this doc.
 
Are you able to contact Dr. Katz by email or telephone?

The doctors that perform SBRT generally want to receive your PSA results every 3 or 6 months to make sure that you are cancer free. The time between PSA's varies by doc. ....the goal is for the PSA to go below 1.0. This takes some time.......between 18 months and two years there is a PSA bump (rise), so don't be alarmed...it will go down again

....................

 
Another question how does Dr. Katz's results compare to others centers that may be near you who have not accomplished as many SBRT's. I really dont' know, however I do not hear any horror stories....unlike surgery there is not a steep learning curve.

 
At any rate in my opinions you have done the right things in managing what need to be done, since your diagnosis.
 
I wish you the best.
 
PS....I will be in the NYC city for a short time in May. We may be able meet to say hello if you so wish.
 
 
MCinNC
Posts: 40
Joined: Sep 2010

Appreciate the suggestions about Georgetown and Dr. Collins from Old Salt and CC52.  That is good to know and it sounds like he would be a good choice for CK.  I did check out CK options closer to me geographically, but eventually decided I'd rather go elsewhere.

I'll be getting more details about my treatment this week, setting up actual dates, and making arrangements.  I hope to add in a few NYC tourist activities while I am there.  Dr. Katz and his staff are pretty accessible, so that hasn't been a problem.  Hopeful, once I have specific travel dates, we can see if our schedules overlap.

Mac

Swingshiftworker
Posts: 1004
Joined: Mar 2010

Sounds like a well informed choice to me.  Have fun in NYC while you're getting your treatments and lets us know how things progress afterward!

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