My 12 month Journey on Active Surveillance

[JVARA]

Hi all,

I wanted to share some positive news in hope that it may help others in a similar situation as myself.

A bit of quick history - I have been monitoring my PSA for years now as I have always had a higher than normal reading. Back in December 2021 I had a PSA test, and it was elevated to 3.2, generally it tracked around 2.0 to 2.5, this wasn’t normal for me, so my urologist suggested an MRI which came back with PI-Rads 3/5 left peripheral zone and PI-rads 2/5 central gland. He then suggested a biopsy. Results found from 16 core biopsy - Left base 3+3, Right TZ 3+3 and Left TZ 3+3. Pathologic stage T2c. Gleason 6 – Grade 1 cancer.

As with all of us when being told you have cancer is a major sock and my mind wasn’t with it, so I was in disbelief. He then went on telling me the details and started explaining my options, surgery, radiation, brachytherapy and so on. He then pretty much narrowed it down and suggested that surgery was my best option given my age (at the time I was 51). So in no time I was booked in to have surgery within in 3 months.

When I arrived home I started to do as everyone does , jump onto google and research everything to do with prostate cancer. There was heaps of info and you don’t know what a lot of it means but I tried to understand as much of it as possible. In my research I can across this site which was a god sent to say the least. I read through many posts and again tried to get as much info as possible, a few of you replied to my previous posts and I thank you as this helped me understand and cope a little better. The best advice I received was to slow down and take my time to learn as much as possible and to obtain a few more opinions, so that’s what I did. I talked to a few more Urologists and Oncologists and the majority suggested active surveillance not surgery or treatment at this stage.

I then started to research other ways to treat PC, things like life style, diet, exercise and I was surprised to find out that there is many documented reports that suggest these all make a massive difference in assisting treating this disease.

I am a man of faith so I began to pray and ask God to help me learn what I can in trying to beat this and began changing my life completely. I stopped eating all meats, became a Vegan besides eating fish, I also started to take a few supplements and exercised most days of the week. I then came across Dr Bergs videos and he has a wealth of knowledge on just about everything and has a lot of videos on what to do if you have cancer and on intermittent fasting and how it effects your body and cells.

I applied what I could and did a 20/4 fast for 3 months, and then went to 16/8. I quickly noticed I was loosing weight and started feeling a lot better. Overall, I lost around `19 kg which did end up being a little to much for my body so I put around 3 kg back on. I am now a healthy weight, I no longer need to be on blood pressure tablets, I had sleep apnoea which now has 90% gone and during this time my PSA has gone back to normal.

12 months on November 2022, follow up mpMRI –, Active surveillance 3+3 not correlating with PI-Rads 4. Transitional zone BPH without suspicions lesion. Peripheral zone negative, No abnormal morphology lymph nodes. Basically, MRI did not pick up anything compared to the one I had 12 months ago.

My new Urologist suggests continuing with AS and PSA in 6 months.

I know this isn’t for everyone and you all need to do what’s best for yourself, but I just thought it may give some of you some hope and possibly something to look into if you are low grade or even medium as I heard stories form many that had all types of cancers some grade 4 that did similar things and today are still alive and even cancer free. The doctors don’t tell you any of this as they are not taught it at universality. Even my new urologist didn’t have much to say when I told hm what I was doing.

I know I’m not out of the woods but at least I have hopefully put off treatment or God willing may not need it in my life time., Only time will tell.

Take care all and Merry Christmas.

[Soumen79]

Merry Christmas to you...I am stage 4 but still your story adding to the rays of hope and faith that i also do place on diet+meditation+exercise combo, every bit of help is a great help at my stage.

I know this is festive season, but when your time permits will you please detail out your exact food habits and other lifestyle changes, thing that you are doing on ground day in day out?

🙏🙏

Wishing you all the best

Soumen

[JVARA in reply to Soumen79]

Hi Soumen, Thanks for your reply..Im sorry to hear about your prognosis but please try to be as possitive as possibly. Yes I am happy to share my life stayle changes, I can email you if you like.

In the meantime please have a listen to the attached youtube videos. amazing stories and inforamation.

youtube.com/watch?v=wiGVsUt...(Not working as expected?)

youtube.com/watch?v=YzPrxku...(Not working as expected?)

youtube.com/watch?v=gFrXLDX...(Not working as expected?)

youtube.com/watch?v=OjkzfeJ...(Not working as expected?)

youtube.com/watch?v=tXmyJYL...(Not working as expected?)

youtube.com/watch?v=VBhD7N0...(Not working as expected?)

[aceace12]

your story is exactly like mine .. but i have been on AS for 4 years ... my urologist suggested AS to begin with ...

[JVARA in reply to aceace12]

Hi Aceace, thats great news that you have been on AS for 4 years..lets pray that you dont need any treatment

[JVARA]

Hi Yingsang, No my Urologist did not mention having a T test..I read that its more for high men with high PSA levels and Gleason scores that need to get checked?

[GabF]

Your story is close to mine, except in 3 points. I refused biopsy, I went one with TRT and I was yet on an healthy life style. I notice Drs are not interested in success stories, they do not know what to do with this information, they are not researchers. I remember my urologist watching the changes (in the good way!) between my first and my last mpMRI. "It is unbelievable that this 2 images belong to the same person" she said to her assistant. But she never asked me how I managed to have such results.

I am older (72 at preDx, 75 now), which helped me much in making my decision: I though I should die before cancer become a treat.

[JVARA]

I will ask for one , thank you

[Maximode in reply to JVARA]

It goes without saying one should take advice here with half a grain of salt. Keep in mind when fighting prostate cancer, lowering your testosterone is the point of ADT (Notwithstanding BAT). PCa development and progression is driven by androgens (PSA), and thus higher levels of testosterone has the potential to drive prostate cancer development and progression. In the absence of PCa, keeping a healthy balance of testosterone would make sense.

[groundswell]

Thank you for sharing . You have stumbled here on a great support group. Have you checked out active surveillance patients international?

[JVARA in reply to groundswell]

Hi Groundswell, no I havnt but I will definalty check it out. thank you

[Hope4Happiness]

I was in my early 50s when I was diagnosed with two cores (of 14) with low-percentage G6 PCa. I chose AS and was on it for about four years before a small amount of G7 showed up on a periodic targeted biopsy after a PIRAD-3 lesion showed up on an MRI.

Given my age, I figured sooner or later I would need some type of treatment -- I was hoping for at least five years on AS, and with the little G7 that showed, I could have stayed on AS a little bit longer, but I figured it was then a year or two away from treatment, at best. At that point. I elected to go for SBRT treatment at MKSCC in NYC.

For me, while on AS, an important technique to practice is "mindfulness" -- stay in the moment, live and enjoy life while it's happening, and control your mind from thinking about the infinite possibilities regarding cancer in the future.

While on AS, the lifestyle for me was simple because a "heart-healthy" lifestyle is identical to what one should be doing while on AS. I was already a vegetarian and fairly active when all this started, so I just "ramped up" my lifestyle a bit -- I didn't need any extreme changes.

Good luck to you! I wish you a long spell on AS. Remember, the treatment options are always getting better -- there have been quite a few crucial improvements even within the past 10 years. If you can remain on AS for even five years, it could be an entirely new treatment picture at that time.

[JVARA in reply to Hope4Happiness]

Hi Hope4Happiness,

Thanks for sharing, can I ask how old you are now. also what made you go down the road of SBRT? and how did the procedure go? how often did you have a MRI while on AS. sorry for all the questions but the more prepared and informed we all are the better the decisions we can make when we need to.

[Hope4Happiness in reply to JVARA]

I am currently 57 years old. I chose SBRT after many months of research after going on AS -- I considered myself very lucky that AS gave me so much time to evaluate all the treatment options in a somewhat relaxed fashion without the pressure of needing a decision very quickly.

Given my low G6 diagnosis initially and then the low G7 later, I felt SBRT was the best option when balancing cure rates with side effects. I met with surgeons to discuss surgery and radiation oncologists to discuss SBRT and HDR-Brachy

Surgery was the "gold standard" for treatment for many years because of its success rate and ability actually to examine the prostate once it was removed, but the physical and mental side effects seemed to only be fully discussed by patients on boards like this and in groups. The surgeons' main concern was the elimination of cancer -- which is the goal of course -- but, the reality of erectile dysfunction and incontinence issues seemed to be downplayed in the rush to eliminate cancer.

SBRT seemed to be the treatment that was evolving at great rates during the past 10 years -- the cure rates were measuring equal to surgery with patients with my level of prostate cancer. For me, the risk of incontinence issues seemed a lot lower, and erectile dysfunction, if an issue, would progress over time -- That is, the erectile dysfunction would become an issue as I got older mimicking the more natural order of that problem.

Right now, a year after my SBRT treatment, I have no regrets and am so glad I went with that treatment option.