I'm sharing my approach in hopes that there are nuggets of wisdom on some or all of the following topics that you might find useful. More importantly, I invite you to comment on any aspect with your methods, ideas, resources, input, etc. so that I can refine my approach. I totally welcome your feedback!
What do you consider the best things that you can do to give Active Surveillance a fighting chance? Please comment with the smart things that you have been doing for a successful outcome?
For example, how often are you getting your PSA checked? How about Biopsy's vs. MRI's? What about diet, fitness, faith, family, support groups? Tricks that you have learned? Groups you like? Books and websites that have been useful? Where do you get your information about PC? Any tips for doctors visits and the questions you ask, etc.?
It would be great to assemble a list of A.S. best practices as a result of your input.
The attached photo represents the various tools that I had at my disposal as of early September. I have done a lot of personal work on this journey and I'm determined to keep growing toward a cancer free body.
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123-Anoka
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Family Support - this is my ultimate source of strength and motivation. I want to be there for my wife, kids and family for many years to come. I want to enjoy a sweet retirement with my wife, be with my kids, grow with my future grandkids, meet my kid's spouses, all that stuff. Ultimately when I pass, I want to die a healthy man at a ripe old age of natural causes.
Meanwhile my wife and kids have been so amazingly motivating for me. Both kids actually ran their first marathon in honor of my challenge with cancer this fall. Wow and they did it together! Still makes me emotional!
I also have an uncle who has been managing a PCa diagnosis for over 10 years with AS. He has been a relevant source of inspiration as well.
What's your story? How has family helped in your healing?
On Active Surveillance for Gleason 6 since diagnosis at age 59 in November 2006. Went to 50 websites and read 5 books. Might have been Dr. Patrick Walsh that led me to that Second Opinion on the biopsy slides from Dr. Jonathan Epstein. He determined that instead of Gleason 7 (3+4) I was G6. My wife has been my rock even though she initially asked "What do you mean you're going to do nothing?"
As a relative newbie to AS it's always encouraging to hear from those like you who have been doing it successfully for a while. Congrats on your ongoing success!! 13 years is quite a stretch!
Can you outline how you get a second opinion? and What did it cost you since I am guessing insurance won't pay for a second opinion. (I have medicare with NJ horizon supplement. Thanks for the info.
Testing - I am doing PSA tests quarterly. Currently working with my doc to set up a schedule for MRI tests, possibly twice a year. I'd like to avoid biopsies for obvious reasons :).
Overall I'm grateful for my relationship with my doctor and he very much supports my approach to healing. How about you, what's your routine?
My uncle had this to say about biopsies .... I knew an old fashioned MD who said "one biopsy is enough thereafter just the digital exam, any Doc who wants to repeat the biopsy is trying to get rich". Urologists are often very cavalier about the dangers involved. Sure, it's easy money. Biopsies are invasive and if cancer is present there is no guarantee the cutting will not spread the disease. The urologist who messed up my life infected me during a biopsy, probably dirty instruments. The next morning I was septic and spent three days in the E.R. Of course I had signed something that took him off the hook.
Really, what separates an old-time jungle Doc from a modern Western Doc? The lab. They want to be as certain as possible so they rely on evidence. We need that also but it must be done wisely. A biopsy using the common grey-scale is now senseless. All that is seen is the gland so they poke all over,sometimes taking around 100 cores!! The TARGETED biopsy using a Color Doppler or Contrast MRI is reasonable to get the real evidence. Thereafter the status of the disease and or inflammation can be monitored using the same visual."
Food - this is a big one for me. I have gone from a McDonald's lunching guy in June to a raw organic vegan in August. I am a big believer in the healing power of a plant based diet. How about you? What's working for you?
Resources & Coaching - My number one resource for diet, nutrition, tips and inspiration is Chris Wark's, Christ Beat Cancer protocol. He posts inspiring interviews videos with people who have managed their cancer with a combination of diet, fitness, faith, toxin reduction and stress management. Most beneficial has been the Square One video coaching program. This video series is the foundation for my overall approach to A.S. If you want to learn more about it, just google Square One Cancer Coaching or Chris Wark.
How about you? What resources have guided you through your healing and AS management?
Faith, Prayer and Gratitude - going into this I was relatively deplete in all three departments. This has been a big change for me. I now pray for positive things throughout the day. I also love giving gratitude. Meanwhile my faith in God is at an all time high
Motivation - for me it seems to ebb and flow. When I was first diagnosed I was laser focused on this. Lately I sort of slipped into a routine and feel a bit complacent. This concerns me, which is part of the reason I am posting all this stuff right now. My wife reminds me that it is natural to experience a plateau after a period of aggressive growth. Perhaps today's plateau becomes tomorrow's foundation for growth.
Friend Support - my biggest is my friend Randy who was diagnosed with bladder cancer at the same time as I was. He and his wife dove in deep on the natural healing plan and in fact introduced me to it. Amazingly he was recently given the all clear from his doc. By contrast, upon diagnosis in June, he was given a 50% chance of survival at the 5 year point. Now he stands as the model of health with nothing standing in his way of a long life. How about you? Who has inspired you to heal?
Visualizing Healing - this one in new to me. I watched Heal on Netflix last night and it spoke to me in many ways, most notably was my body's power to heal itself when I give it the right thoughts to work with. I have heard that every one of my billions of cells is eavesdropping on my every thought. I now believe this to be more true than ever after watching Heal. I think I need to discover how meditation helps me though. How about you?
Fitness - I try to get 30 minutes of fitness in a day at minimum, but prefer 90 minutes. Walking is an easy standby, living in the north, I also enjoy nordic skiing. Cycling is a passion but it just doesn't seem quite right to sit on my prostate and workout so I cut that out of the routine. How about you?
Toxins - we have removed toxins from our household. Washing with the least chemical based stuff possible. Gone are laundry detergents, toilet bowl cleaners, bleach and anything that is chemically based. We are working with Dr. Bonners soaps for laundry and dishes. Combine that with vinegar and baking soda and that's what keeps our house clean and chemical free. Filtered drinking water my Berkey is also awesome!
Philosophy - My underlying philosophy is based on my belief that cancer comes from my environment, my food, my thoughts, and my fitness. Likewise I believe that if I provide my body with a toxin free existence full of organic, plant based nutrition, spirit, and physical activity I can beat this.
The leading word in Active Surveillance is "Active" and there's nothing passive about it. Taking action is critical and I feel great about this mindset and am dedicated to healing my cancer with it.
Thanks for reading all this. I really needed to write it down. Likewise I look forward to whatever feedback you have to share.
How about you, what's your approach to win with Active Surveillance?
Good set of posts. “Keep enjoying life” is my mantra, learned from my work with Malecare. I also use distributed memory by tracking my feelings and symptoms with the mobile phone Cancergraph app
Cancergraph appears to be a good way to track symptoms in an organized fashion. Thanks for the tip. I like your mantra too. Positivity and optimism are such important parts of this journey.
I was diagnosed with PCa in June. Started with a PSA of 9.75 which lead to a digital exam then a biopsy. Biopsy revealed PCa with a Gleason score of 6 (3+3) / Grade group 1 on the right side and 7 (3 +4) / Grade group 2 on the left. First doc recommended removal, second was OK with Active Surveillance.
I started learning about the benefits of a raw organic anti cancer protocol from my friend Randy who was dealing with something similar. Became vegetarian in mid July. Then vegan in mid Aug. PSA tested in Sept revealed a 9.1 which was encouraging. Later in December it went down to 8.17.
Discovered the Square 1 Anti Cancer protocol in early Aug and by Sept 1 I was "all in". Since then I have become a raw organic vegan. Lot's of nutrition and a very healthy approach.
Now at the age of 56, I feel better today than I have in the last 20 years. Super healthy, shedding weight, eating great and exercising more.
Curious P-M-A, can you shed some light on what determines "Low Risk" vs. "Intermediate Risk" PCa?
Hi, I just took the online "Staging Test" on the Prostate Cancer Research Institute web page. It shows that I am "Teal" or Intermediate Risk. pcri.org/staging-quiz
To date can't find anyone who died of 3+3=6 Gleason. May be 50% of men will be diagnosed with Gleason 6 and should not be treated. I am a Gleason 3=4=7 and have not had any treatments for 10 years with a great quality of life. Active Surveillance (AS) is the new term for Watchful Waiting. A person needs to find someone who puts you on AS without biopsies and only PSA and other tests every six months?
On AS 12+ years. Watchful Waiting was initially the term for "doing nothing" but I believe it is now used as a less focused approach that comes as you age with AS. I'll be 72 in 8 days still going to Urologist but not contemplating treatment. PSA was 1.9 July 2018 and 2.8 February 2019.
AS for 7 years before starting ADT, IMRT, with brachytherapy boost. Continuing on ADT for..? I hope for no longer than 1 year (ADT is brutal for me). Research on duration of ADT is inconclusive and inconsistent as far as I can tell.
All of the things you're doing seem to be working for you. Sounds like they're giving you a sense of control which is really important to many. Go for it all!
My only concern is your Gleason of 7 which for many docs is the "trigger" for treatment but it sounds like you're monitoring it closely. MRI fusion guided biopsy is one of the latest tools that targets suspicious areas (as opposed to the general shot gun approach of typical biopsy). Current protocol at Hopkins calls for minimum of 6 month PSA and biopsy every 12-18 mos; I'm sure that there are other protocols out there.
Consider radiation if you get to that "trigger" stage. It's non invasive, for the most part, fairly benign in terms of short term side effects and has as good a track record as RP.
Read, watch videos, get second and third opinions. When in doubt or when getting conflicting advice (and you WILL get conflicting advice), consider talking with a medical oncologist who tend to be more objective in their recommendations and are not trying to sell you something (usually). Read Patrick Walsh's book, "Guide to Surviving Prostate Cancer." Also, "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones." Check out the numerous web sites: Prostate Cancer Research Institute; Prostate Cancer Foundation; National Comprehensive Cancer Network (this site provides the latest info re cancer staging and treatment strategies - if x diagnosis, then, here are the recommended treatments); and so on.
Take your time and make the best decision for you; it's highly personal and it's YOUR decision.
Thanks Darryl, my favorite quote in the article follows ... "Overall, these numbers are a good sign and a good thing," he said. "From 2010 to 2015, there's been a lot of new evidence -- the highest level of evidence we can get in medicine, which are prospective trials and some of them randomized trials -- that have shown that active surveillance, conservative approaches or non-treatment approaches of low-risk prostate cancer have very favorable outcomes." Dr. Brandon Mahal
I've been on active surveillance since August 2017. My fifth biopsy (!) revealed Gleason 6 in two cores. Here is my current info:
Age 52 at Dx - 8/17 (5th biop); MSKCC-NYC
2 of 14 cores: Right base medial, G6, 1%, 0.1mm; Right apex medial, G6, 3%, 0.5mm
6/17, Pre-biopsy: MRI - PI-RADS 3 - hypointensity in peripheral zone; no dominant lesion or adenopathy
Prost. vol. 43cc
PCA3: 29
PSA at Dx: 6.19, fPSA: 23%
PSA, 2/18: 6.06
Confirm. biop. (4/18): 1 of 14 cores: Left apex medial, G6, 2%, 0.3mm
PSA, 8/18: 6.41, fPSA: 22%
Since my diagnosis after biopsy and MRI, my confirmation biopsy (nine months after diagnosis) just confirmed a very low percentage of G6.
My next DRE and PSA is scheduled for the first week in March.
One of the important "tools" I used after the diagnosis and decision to continue on AS is "mindfulness" -- it keeps me focused on the here and now. AS is supposed to extend our physical quality of life, but you don't want it destroying your mental quality of life. I take AS in six month intervals and focus on what I can indeed control -- my diet, my physical activity, my stress levels, and my perspective. It is very important to stay in the moment and "enjoy life right as it is happening."
Sounds like you have very low grade cancer with scores but curious why PSA IS THAT HIGH
I've been told been told that low PSA is best but not to get caught up with the number by itself. I'd love to have H4H's data. And his fPSA of 22 is pretty nice.
Although I've already been diagnosed with G6 cancer, I think fPSA still works as marker for investigation for those on AS. For example, I think if my next PSA reading came back around the same numbers that I've been having, but the fPSA dramatically dropped in percentage, that might work as a red flag for the doctor.
I was just calling Hope4Happiness, H4H. Sorry for that confusion. fPSA is free PSA and measures how much of PSA is free as opposed to being bound together. So if PSA molecules are kind of stuck together, the free PSA is lower. The lower it is, the more likely there is some cancer involved. Just another data point if a urologist is pondering whether or not to biopsy.
Without giving it much thought since my surgery on Oct 9, 2018 -- I am officially on "active surveillance". On Jan 29, 2019 my blood was drawn for an ultra-sensitive PSA test. The result was <0.006 ng/mL, non-detectable, using Roche ECLIA methodology (are there other methodologies). My URO's surveillance program is another PSA test in three months. Is this a sufficient level of monitoring? My biopsy results were GS 4+3 on two samples (28% and 16%), GS 3+4 on two samples (50% and 33%), and GS 3+3 on two samples (1% and 12%).
I'm not a MD, but, for whatever it's worth, I'd be concerned about the number of cores with cancer and, in particular, the 4+3 in 2 samples. A 3+4 in one sample was the "trigger" for my uro and radiation oncologist to recommend treatment. You may want to get a second opinion.
Don't forget Vitamin D. There is significant valid medical studies on it. But 1000 units a day won't do it. A blood test can be obtained (covered by most insurance with the proper code) and many experts recommend levels of 60 ng, some even recommend levels of 80 ng. The average 25-hydroxy vitamin D level in the USA in those that don't take vitamin D supplements is 23 ng. By the way for those in other countries, multiple ng. by 2 1/2 to get the level in Nmol. By the way it's impossible to get enough vitamin D from food, it wasn't even "intended" to get it that way, if we lived near the equator we wouldn't need supplements. Get a second blood test in 6 or 12 months later. Many medical courses recommend for a low level 5000 units a day is needed, some people more, but blood levels should be used to be sure.
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