caret icon Back to all discussions

Seeking advice to complement Active Surveillance

Greetings to each of you and thank you for the support, inspiration and collegiality I have received from you in the recent weeks since my diagnosis.

I am 65 years old (almost 66), have one area with a Gleason score of 7 (3+4), family history of pc, genetic testing that has indicated an intermediate level of risk and I am awaiting a second opinion regarding my biopsy from Dr. Epstein at Johns Hopkins.

I have just learned from an ultrasound performed at Beth Israel Hospital in Boston that I am not a good candidate for HIFU (High Intensity Focused Ultrasound), because of calcification in the area that would have been treated.

I have decided that for the time being - subject to reconsideration in the months or years ahead - that I would like to commit to Active Surveillance.

I am a long time runner. I walk a lot, do occasional yoga, lift weights 4-6 days a week and eat fairly well. I weigh 185 lbs- down from 197 a few months ago and with a desire to be at about 175 lbs.

I am a very positive person by nature and have practiced intermittent fasting for a year or so. I made a decision to stop eating all sweets even before my diagnosis - after giving up chocolate 28 years ago - to counter my compulsions around certain foods and to support my desire for overall health. I have also not eaten meat for about 20 years.

I have been a light to moderate drinker for my life post college - a beer or occasionally two with dinner in recent years - but have decided to switch to non alcoholic beer only in recent months and am committed to staying with this.

I am also a person whose faith and the practice of prayer and meditation are an important part of my life.

Given all of this, I am writing to ask you this:

What one step, action, practice or change in behavior, mindset or approach would you recommend that I include or adopt in support of my commitment to Active Surveillance?

I am open to suggestions that are backed by rigorous scientific research, somewhat experimental approaches, as well as things that you just personally find helpful for reasons that are more personal or anecdotal in nature.

Thanks very much for your support and consideration of my question. If I in turn can help you, please let me know.

  1. Hi . I can't personally speak to active surveillance, but I can tell you one thing I've seen consistently is the need to be committed to the testing and monitoring for any potential changes in the cancer. The other thing, which the monitoring may help with, is a practice of finding what works for you to manage any stress related to the emotional/mental impact of managing the active surveillance of the cancer. Your medical team and confidence in them should also help with this. Hopefully others will chime in with their experiences. Know that this community is here for you. Best, Richard (ProstateCancer.net Team)

    1. do some research on the benefits of reservatol for prostate cancer. Reservatol is found in the skin of red grapes especially in Malbec red wine.

    2. Thanks very much!

  2. Was wondering if the results from Johns Hopkins added any insight into your condition. I am also considering AS, with a Gleason 3+4 and am considering getting a second opinion for Dr. Epstein.

    1. While I hope you do not need hormone therapy --- everyone appears to react differently. My reaction was just crazy and i had almost every negative reaction imaginable . In sharp contrast there are men in my support group who say they had ZERO reaction to LUPRON etc . You just do not know in advance how your body will react.


      I was recently diagnosed with a returning PCa and the knee jerk reaction by my urologist was to put me on Lupron vs trying to kill it off. I changed treatment centers after learning there were newer and more effective ways to address my situation. My advise is keep your options open when looking at treatments and suggestions ... Good luck on your journey Dennis(ProstateCancer.net TEAM)

    2. Because my referral was botched by for former urologists's administrative team, I did not get the second opinion from JH. I ended up getting it from Dana Farber and it confirmed the original. Thanks!

  3. My Urologist’s administrators botched the referral to Johns Hopkins and so when I decided to meet a team at Dana Farber in Boston, I had them review the slides. They confirmed the initial reading and all three are in agreement that AS is a reasonable course to follow for now. I will be having more detailed genetic testing done soon through Dana Farber as well.

    1. I had one great meeting with Dr Trinh. I liked him a lot. I also really liked the radiation oncologist, Dr. Kim and medical oncologist, Dr. Morgans. They took a lot of time, asked a lot of questions and did not push me. They all agreed that AS makes sense at this time. I feel like I am in good hands there. Good luck!

    2. My decipher suggested I was not at a high risk - that sounded good at first ...except so far have been treated 3 x for the PCa . I have come to the conclusion that while the risk testing can offer a suggestion as to possible outcomes and spread in the long run you are better off with a regular testing program and put worries about forecasting on the back mental burner. Just my opinion. Be well. Dennis(ProstateCancer.net TEAM)

  4. I had to make a lot of calls to get this set up. Filled out the forms and dropped them off in person.

    1. You have to just love the forms and endless paperwork on top of dealing with a PCa diagnosis Dennis(ProstateCancer.net TEAM)

Please read our rules before posting.