Introduction

Scors65
Scors65 Member Posts: 1
edited January 2020 in Prostate Cancer #1

Hi, everyone.

I am a 65 year old and was diagnosed with Prostate Cancer back on October 24th. I'll offer a little background on my case. I had experienced, about a year an a few months ago, a puzzling PSA increse and decrease. I had held steady at about 2.4 for a long while, when it suddenly jumped to 5.8. A subsequent retest showed it back at 2.4. The next test, 3 months later had me back up at 5.8. This went on for 2 more rounds and I finally went to a Urologist. Now, mind you, all of the PSA tests I am referencing were the 4K tests which also measure your free PSA and estimate the % chance they will find cancer upon biopsy. Even with the higher PSA readings, my % chance of finding cancer upon biopsy was "low risk", less than 5% on every one. 

The Urologist did a DRE and found it completely normal, not even any detectable BPH. I had ZERO symptoms of any Prostate issues. I have no cancer in my family and have had 6 close blood relatives (3 grandparents,mother and 2 aunts) all live well into their 90's. I've been an athlete all my life and still work out 5 days per week vigorously and have followed a pretty strict diet for the past 20 years. Nothing would have indicated cancer.

But, my Urologist ordered up a T3 MRI, which showed 3 leasions, 2 at PIRADS 3 and one at PIRADS 4. That was in late August.

Fusion Biopsy in October showed 3 out of 12 cores with cancer, two at Gleason 6 and one at Gleason 7 (3+4). Prostate volume just a tick over normal at 33.

Kind of a shock, but I always expect the worst, so if less happens I'm relieveed, so I set about to gather as much info as I could and make an informed decision as to treatment. Even though subsequent Genomic testing of my samples showed  very low "intermediate" risk, I didn't want to play around with Active Surveillance along with those 4's hanging around in there.

Surgery was not an option I was OK with. After reading about the possible side effects and their endurance, I opted to look into Cyberknife. I live out here on Long Island, N.Y., and one of the very best centers and practitioners (NYU-Langone Winthrop Hospital in Mineola and Dr. Haas) is about an hour away. I have decided to go with that as my treatment option.

Fiducial markers will be placed on Feb 13th, MRI/CT scan/Body mold done February 26 and treatment March 30-April 3.

So, I am specifically looking for info from people who are or have already undergone Cyberknife treatment. I've been in other groups where there are discussions that are not compartmentalized, and often those devolve into "My treatment is better than yours" nonsense, so this seems, by dividing up discussions, to be preferable. I also realize that everyone is different and any info I or anyone else shares is purely anecdotal and needs to be taken as such.

I hope to gain some insight into what to expect and also, once I begin my own journey, hopefully offer some insight to others. Thanks for accepting me.

Comments

  • Josephg
    Josephg Member Posts: 460 Member
    Welcome

    Steve, welcome to the Forum that nobody wants to join.

    There are lots of folks here who have shared their PCa journeys with each other, and offer suggestions and information, based upon their own situations and their research into PCa.  We are not medical professionals, and our advice and/or suggestions are purely layperson comments.  And, you are correct in that everyone's PCa journey is different, and the results of treatment options vary.

    I know that Cyberknife has been discussed in this Forum, and folks will chime in with their personal experiences, and/or information gleaned from their research.

    I wish you the best of outcomes on your PCa journey, and we are here for you, if and when needed.

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    edited January 2020 #3
    Cyberknife, the best option for contained cases

    Scors65,

    Welcome to the board. There have been several CK guys attending this forum since the introduction of the therapy in 2009, but most of them stop posting here and some still do it but very seldom. I believe that they all got cured. You can try sending them a CSN email for any particular opinion. Here are links to their threads for your information;

    https://csn.cancer.org/node/287803

    https://csn.cancer.org/node/199891

    https://csn.cancer.org/node/320742

    https://csn.cancer.org/node/320694

    https://csn.cancer.org/node/264905

    https://www.cyberknife.com/stories

    In my opinion Cyberknife is the best choice for those with earlier contained cases. At the beginning the treatment was sort of pioneering and many did not know what to expect but today one can read the results of ten years of therapy and they all seem good. Quick treatment, fast recuperation and lesser side effects. I hope it will be good for you too.

    Best wishes and luck in your journey.

    VGama  

  • Steve1961
    Steve1961 Member Posts: 625 Member
    edited January 2020 #4
    Hmmm

    myself looked into it at UCSF. I went down to Stanford the doctor that was doing it there took the practice with him. The Stanford radiologist suggested there's no way I should do cyber knife. He said it's just not there yet there's not enough data to prove how good it works. He told me that he would not suggest that to his worst enemy that's just my two cents I did the radiation combination external beam and Breaky therapy I totally regretted it has ruined me

  • Grinder
    Grinder Member Posts: 487 Member
    edited January 2020 #5
    Expertise

    There is almost always one element that affects good or bad outcomes... The expertise and experience of the surgeon/urologist/radiologist/oncologist.

    It is my contention, all things being equal otherwise, the bad outcomes result from inexperience... whether it's radiation or surgery. There are many guys who had Da Vinci surgery that are thrilled with the results. There are also guys who had side effect disasters from surgery. Same with radiation, there are guys happy with their results and guys whose lives have been wrecked.

    Admittedly, nerve sparing may not be optimal in some cases... But best advice is still - get the best, most experienced professional you can, whatever your choice of treatment. Check out their records for numbers of procedures and side effect frequency.

    Don't just accept the "next guy's turn" at a clinic... you wouldn't want an amateur messing with your car or your natural gas furnace. Why would you want an amateur messing with your physical body?

    My two cents.

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    Get the gel

    Hi,

    If you go the radiation route make sure you the gel to protect you rectum from radiation damage.

    Dave 3+4