Where I'm At Now and Thanks

Age 46, initial diagnosis in February 2016, PSA of 286, Gleason 9 (5+4) Stage 4 metastasized to lymph nodes. Bulky disease showing in pelvic and abdominal lymph nodes in CT scans and bone scan clean. Immediately placed on Lupron and Casodex. Did 6 rounds of chemotherapy which consisted of docetaxel while remaining on Lupron. Prostatectomy with extended lymphadenectomy performed December 2016 by Dr. Jeffrey Karnes at Mayo Clinic in MN.

3 months postoperative PSA in at <0.01 done by local oncologist

6 month postoperative follow up at Mayo Clinic <0.1 and all body and bone scans clean.

If numbers stay the same for the next 18 months getting off hormone treatment is a very real possibility.

When initially diagnosed I was told by 5 different doctors I was inoperable, including 1 from a major cancer treatment center in NY State where I reside. I was told I will be on hormone therapy the rest of my life. Through this site I found hope and resources. My first post received words of encouragement and advice directed to a guy that was scared with feelings of no direction. I found I was not alone in my thoughts. Gourd_dancer showed me even with bone metastasis this disease can be rocked. I think about him all the time when someone says it cant be beat. Patrick, Nal, Alan and Dan59 I look forward to reading anything posted as its information you cant get anywhere else. Other posts in between shared by all are a wealth of knowledge. It was where I found the video by Dr. Kwon on treating metastatic prostate cancer with a curative intent prompting me to go to Mayo. I know its to early to tell what my diagnosis will bring but where I am at now is a long way from where I was told I was going to be. That is due largely in part to this forum.

Dr. Karnes gave me a chance when nobody else would through unconventional therapy. He removed 42 nodes along with my prostate and I had no incontinent issues and he was even able to do nerve sparring surgery on one side. He gave me the worst case scenario going into it and he was willing to try. I could not have asked for a better outcome.

Never give up hope, do not let statistics cloud your head. Be your own statistic. I feel it is a combination of modern medicine, what you do for yourself and mental strength that is going to get a guy through this.

Thank you and keep the posts coming.

Ron

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  • Ron it sounds to me you are doing great through your own research ,far better than I did after accepting being inoperable,I never reached undetectable. Makes me wish I did what you did. I suppose at this time I am so happy to reach 11 years after a high Gleason stage 4 dx,and I have accepted my mortality though I continue to fight and will never ever give up. For you I pray that you will beat it and I think you will. Live every day brother! Dan

  • Dan you are a true inspiration to all who know your story. Your defying the odds your own way and your knowledge gained through your own experience is invaluable. Your kind positive words have reached many. Thanks

  • Thanks Ron, I just arrived in Fatima Portugal and will pray for the group here.

  • So glad to hear of your Good News from the surgery. WooHoo!

    That was certainly a lot of lymph nodes to have removed! Did they discuss the topic of Lymphedema as a potential post-surgical complication? Or instructions for reporting the signs of that, should it occur? (I know several women who had lots of lymph nodes removed during breast cancer surgeries, and they have a wealth of experience in that regard, sometimes lasting for decades afterwards.)

    See also:

    google.com/?gws_rd=ssl#q=ly...

    Charles

  • Thanks Charles,

    It was discussed and anything that could happen as well. I did some research beforehand and its the whole risk vs reward thing. Your body has between 500 - 700 lymph nodes and as of yet no symptoms of Lymphedema. It was all done with open surgery with the same incision a normal open prostatectomy has. My thought with cancer and the treatment that follows is your not getting out of it unscathed. Hit it hard and fast and as aggressive as your body can take. Its a tough disease that requires tough treatment.

  • Great news Ron. I wish you continued success.

  • Paul,

    Thanks and hang in there with the chemo. Its rough but it is helping you. Between chemo and ADT a lot of cancer cells will be knocked down. Scans aren't always the best indicator either. Most of what was showing in my scans ended up being scar tissue from where cancer was. Being in the under 50 club with children definitely adds to the pressure, I'm there with you brother.

  • Thanks Ron. I haven't found the chemo as bad as I thought I would. Let's keep in touch.

  • Ron

    Congrats on your successful treatment! Great to hear especially for a young guy like you. Keep on kicking it's ass!

    Bob

  • Dayatatime

    Just the pelvic lymph nodes; what was the size of the individual tumors in centimeters?

    Rich

  • Rich as far as individual size of tumors I have no idea. I had bulky disease showing in pelvic and abdominal nodes so I'm sure it varied. What showed in my first scans when diagnosed would have been different later because chemo and ADT took care of almost all of it. I had a lot of scar tissue that developed where cancer was. I was told they would be cutting from my pubic area to base of my sternum. Lucky for me they were able to stretch the skin high enough so an incision only to my naval was made.

  • Ron - sounds like excellent progress thus far.

    With respect to the hormone therapy (ADT), I was diagnosed in July 2012, also a Gleason 9 with metastases to the pelvic lymph nodes and bladder. I did not have surgery but did have external beam radiation and started on Lupron and Casodex immediately. I was on ADT for 26 months. After the radiation my PSA dropped to undetectable. I have now been off of ADT for 2.5 years. My PSA has been 0.2 for almost a year now. I am sure I'll be back on ADT at some point but am currently really enjoying the extended "vacation".

    Hope you can get off ADT eventually as well - best of luck!

  • to Dayatatime

    CONGRATS!!!

    Good Luck and Good Health.

    j-o-h-n Tuesday 05/30/2017 12:06 PM EST

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