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Choosing — and sticking with — active surveillance: A patient’s story

November 09, 2009

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Comments

Barry
July 24, 2018

I am 4 years into active surveillance. First biopsy was only one core positive, less than 5%, Gleason 6. Did a ton of research as described by Jeff and initially chose surgery. Rationale…urologist told me he had never had a patient who did not eventually choose treatment and since I am relatively young (was 58 at the time), why not get treatment while I was still healthy? Eventually chose active surveillance, longer story. Second biopsy one year later was 14 cores, still only one positive and less than 5%. My PSA fluctuates from 4 to 8, but I also have BPH and chronic prostititis. I had an MRI seven months ago that showed no cancerous signs but did confirm BPH and enlarged prostate, about 44 grams. I plan to stick with AS…have switched to plant based diet 4 years ago and also take some supplements…Vitamin D, turmeric, prostate health mix. I exercise daily. Exam yesterday with PSA and DRE showed no change in six months, may opt for a third biopsy next summer. Everyone’s situation is different, choose what works for you. I only “fret” over the cancer on the day of my exam. I am also convinced that most men have a little “cancer” and that your body can heal itself if given the chance. Use it for motivation to live a healthier lifestyle!

susie
April 20, 2018

My husband and I just met yesterday with a team of doctors who treat prostate cancer. They recommended active surveillance. he has a PSA of 5.4 and a Gleason of 6. He had 12 biopsies and cancer was found in one core. The real anomaly is that his prostate is 127grams. He is going to start medication to shrink the prostate. They told us they could only possibly shrink it to 90 grams. I am more scared then he is because in December of 2016 he had the right side of his colon removed for a grade III cancer and had chemo until August of this year. The doctors told us there is no relationship. He had a bone marrow test before starting chemo and they told us there was no cancer in it but the results weren’t normal. They told us at that time if they didn’t have to treat the colon first with chemo they would do chemo for the bone marrow. I really am concerned and feel we need better coordination and have almost convinced my husband to go to Mayo Clinic. Thank you for allowing me this venue to kind of straighten out my thoughts. If anyone has a different thought or concern or has any experience with this type of situation I would love any advice.

Michael
March 29, 2018

Hello. Almost 4 years ago I was diagnosed with Gleason 6 cancer in 3 core samples (2@<5%, 1@20%). I chose active surveillance and began a strict plant-based diet. However, my psa continues to rise and most recently it was 9.8 (up from 6 18 months before). But the side effects of treatment aren’t acceptable to me. So my next course of action will be a series of water-only fasts to give my body a chance to fight this. I would appreciate any supportive comments on this. Thank you. Michael

Paul Tavenner
March 28, 2018

I’m surprised that Mr. Caruso wasn’t asked and didn’t discuss the impact of lifestyle changes including plant-based diets and daily exercise. He did mention he exercised a lot daily, but not as a course of action against the cancer. In his defense, there hadn’t been many meta-studies done on the impact of diet/exercise on cancer in those days… at least not in comparison with studies coming out today.

I switched my diet and began a daily brisk outdoor walking regimen immediately upon diagnosis of Gleason 3+3 as a 52 year old. My doctor’s concern is my young age… the worry is that the cancer has a lot of time to grow and kill me before something else would. As a surgeon, his focus isn’t on diet and exercise as a cure, but surgery. Maybe that’s as it should be since that’s his area of expertise.

My goal is to obliterate this cancer with diet/exercise. I want a doctor who doesn’t buy into that as a treatment, wants me to have curative treatment (surgery or other), but can’t recommend it since the numbers are staying low. As long as he can’t recommend treatment over AS, then I feel I’m covering all my bases.

I’d love to hear about others who are having success fighting the cancer through diet/exercise.

cj
March 09, 2018

Well , here is my story. 59 years old. from 12/2/14 to 2/17/18, my psa was 4.7 to 6.3 to 8.2 to 7.5 and now 7.0. had Biopsy… 3+4=7.
I go into see my urologist in 5 days for “treatment options” I have to say, no matter what he says, I am thinking AS. ++AND++ dramatic life style change. I ma active already but it is the DIET that will change big time, more praying and a good attitude. I want to have my psa checked every 3 months and find out what test I can get to see how my cancer is doing ( growing ?, shrinking?) I am determined to do it…..I will bet this!!! I will make any dietary changes, exercise etc…to make this work. NO chemo, radiology, and definitely not radical prostate removal… I will be juicing a ton as well…all the green leafy veggies, beets , cucumber etc……ALL of the cancer fighting foods and necessary supplements….Good luck and God Bless to all of you on your journey

Pamela
February 12, 2018

Have a friend who has stage for prostate cancer supposedly a level of 350 it has metastasized into his bones is it possible within a week for PSA to go from 350 to 20 ?

Patrick
December 20, 2017

I was diagnosed with low grade cancer from a biopsy in October of 2013 at 53 years old. One of my 12 cores had about 5% of the lowest grade cancer. My PSA was 5.12. Since then I have had two MRI procedures performed and another biopsy in June of 2015. The second biopsy had two of the twelve cores with 5% or less of the lowest grade cancer. I have a DRE and PSA tests every six months. The DREs are all negative and I have no symptoms. My PSA measured 7.85 in November of this year. My doctor is recommending a third biopsy because it has been about 2.5 years since my last one. I do not like biopsies but want to make sure my cancer stays at the lowest grade and is not aggressive. I am trying to make a decision to have this third biopsy done? I do take curcumin and drink lots of blueberry pomegranate juice.

Sid
November 05, 2017

I have been on AS for 3 years now. I have had 2 biopsies and scheduled for a 3rd next month. PSA has gone from 5.1 to 10.6 in 3 years. I have had on ONCO-TYPE-DX gene test which looks at genes to determine aggressiveness of the cancer and got about a “C” on that test. I have also had a MRI which showed cancer was “contained in the organ”. My last biopsy in 2015 showed cancer at max of 40% in one sample and 20% in another 2. Gleason score 6. My plan is to stay the course for as long as possible. I don’t like the fact that my PSA has doubled in less than 3 years. My current criteria for leaving AS. 1) PSA > 10 (check) 2) PSA doubled in 3 years or less (check) 3) Sample cores with greater than 50% cancer in any sample and cancer in over 50% of samples (TBD).

Steve
April 04, 2017

Just diagnosed two weeks ago 59 years old retired police officer but still working starred another career. Very healthy work out 3-5 times a week play tennis 5 times a week. Enlarged prostate for years. PSA 3.8 biopsy found cancer in one of the 12 core samples. Gleason 6. On Active surveillance PSA every 3 months and DRE every 6 months Biopsy as needed possibly at one or two years. Starting to take saw palmetto and a friend of mine recommended Arsenicum album low dose daily. Will not have surgery and have considered Proton Therapy.

Richard
March 08, 2017

Nov 2016….I am a retired Firefighter for 32 yesrs, no family history. Started having frequent urination that process to much more often then with acute constant pain in area of protate region. Demanded a PSA due to being a resucer at 9-11 ( over 1,100 rescuers have Prostate Cancer), level 5.6, Doctor treatment was for Prostatitis. I had to demand another round of Antibiotics also as symptoms continued. Rechecked in 3 months (now, Mar 2017) PSA 7.9, Waiting to see Urologist, having minor pain again, Doctor (appt 3.9.17) may put me on another round of Antibiotics and I’m sure DRE. I’m going request another PSA to make sure but we all know he will say no, insurance may say to close to the last one!

Will post results after Urologist.

I have many questions. All what I have read here is very informative, I do agree, there is too many different options with these so called Specialist.

So, was my Prostatitis diagnosis not Prostatitis but warning signs that cancer was present, is it standard to have a PSA at 5 with Prostatitis, as treated, why would the PSA rise not decrrase? Well, I feel for you all -your frustration due to lack of black and white answers and treatment. I hope that my Prostatitis is back (an infection or its Chronic) instead of the “C”, but after reading, it appears it can be good news going from 5 to 8 in 3 months.

God Bless you and hope to be in touch, please reply with any help or suggestions.

George
March 01, 2017

PSA 5.5 Gleason 7 (3+4) Biopsy 6 of 12 cores positive. Healthy, exercise, diet red meat rich with red wine before diagnosis, vasectomy, longevity in family with history of high PSA’s. Changed diet to plant based one month from diagnosis. Planning AS with treatment if needed as initial approach. Have met with Urologist, Conventional and Brachytherapy Radiation specialists. I have scheduled a consult with a non-surgical, non-radiation specialist at MD Anderson later this month.

I frequently travel internationally for work and feel well for 60. Hoping I can postpone the incontinence, ED and compromising drastic impacts of surgery or radiation.

Jon
October 21, 2017

How is your condition now?

Roger Philpot
November 22, 2016

I was diagnosed with PCa April 2016. My PSA elevated from previous PSA 4.25 to 5.83. I went for a biopsy and my Gleason score 4 +3=7 , % positive Cores 16% (2/12 . My urologist sent my biopsy remains to Prolaris for genetic testing, results were in non agressivery range. I chose AS. I was 75 at cancer diagnosis. I still have anxiety that I chose the correct treatment. Please feel free to contact me.

Ray Schilling, MD
November 08, 2016

There is a method called ablation cryotherapy, which Dr. Gary Onik from Ft. Lauderdale, FL invented. He is an interventional radiologist. He does a mapping biopsy under a general anesthetic where the whole prostate gland is biopsied every 5 mm. In a regular size prostate gland he uses about 60 biopsy needles, in BPA he may need 90 needles. This is done through the perineum (the skin between the rectum and the scrotum). 1 month later he does the ablation cryotherapy. If the tumor is close to the neurovascular bundle, he uses another device, called the NanoKnife (or IRE for irreversible electroporation). This punches holes into cancer cells, but not into healthy cells. The procedure is watched through a TRUS (a high resolution Doppler ultrasound introduced rectally. He did a 10-years follow-up study on 70 patients with prostate cancer. 100% survived, 94% were PSA negative (consider this a cure); 6% had recurrent disease. They all had their sex life back 3 to 5 months after the procedure. No urinary or fecal incontinence. Instead of going on and on with active surveillance This is a real alternative where you actually remove the cancer.

Mitch
November 07, 2016

Based on a doubling of my PSA, from 2.1 to 4 in 2 years and a DRE, my doctor recommended a biopsy. The biopsy was done in May 2016. The diagnosis was Gleason 7(3+4) in less than 5% of 1 core. Doctor recommended treatment and I decided on surgery. Prior to scheduling surgery, I sent the biopsy slides to John Hopkins for second opinion. John Hopkins diagnosis was “atypical and suspicious for adenocarcinoma” but not conclusive. Had repeat biopsy on July 2016. The diagnosis of the repeat biopsy was Gleason 6(3+3) in less than 5% of 1 core. The pathologist sent both biopsy’s to Sloan Kettering for an additional pathology opinion. Sloan Kettering confirmed Gleason 6(3+3) in the second biopsy. Their diagnosis of the first biopsy was also Gleason 6(3+3). Yes, I had 3 different diagnoses of the first biopsy – Gleason 7, Gleason 6 and “atypical and suspicious”. It’s been an emotional roller coaster. Based on the results, I decided on active surveillance. Had 6-month repeat PSA test a month ago. PSA went down to 2.5. Same lab and testing protocol as previous PSA’s. I’m very glad I got a second opinion on the pathology. I question why my urologist didn’t suggest it.

Glenn Benish
October 21, 2016

My PSA level was 3.9 my doctor said go see a urologist which i did over a year ago had MRI no signs of cancer waited 6 months my PSA level was 4.1 had a biopsy which came back 2 cells very little cancer. I have a gleason score of 6 with low Aggressive which i have decided to go with active surveillance with psa blood checks and doctor visits every 6 months . I am, a 61 year old and very active.

Keith Prothero
October 06, 2016

All of the above is very interesting. I am aged 73 and have always eaten well and exercised regularly. Only major vice is too much alcohol as I am involved in the wine industry !!
6 months ago I had my usual annual screening and my PSA was 8.6. Subsequently my urologist suggested PCA3 which was 88% and after that it was a biopsy. This showed a Gleason of 3-3 with cancer n two of the 14 areas tested . The decision was made for Active surveillance and my PSA has slowly increased from 8.6 to 9.3 and now 9.8.
Saw a top UK based surgeon Chris Ogden who still considers AS to be the best option for me and hence I am having another PSA in 3 months .
Recently,have changed my diet to include pomegranate seeds,cranberries and also Saw Palmetto which a number of people recommend include the person who did my biopsy
Happy for anyone to contact me if they wish.

Dennis
April 21, 2016

For all of your questions try yananow.org. great support website.

Kenneth Ridgeway
April 09, 2016

Hello everyone.
I am starting this awful journey.
Raised PSA of 9.2 in Feb . Same five weeks later in March. 9.2.
Hospital and Doctor said have TRUS biopsy. Then if cancer found a prostatectomy.
From reading all the bad side effects this has really slowed me right down. I have read for three or more hours a day for six weeks and I must admit it is getting me down. I have never taken tablets for anything and feel pretty fit and have always felt in control. Now I don’t.
I have asked for a second opinion which is your right on the NHS information.
I will see a Mr Alan Doherty in Birmingham for A PCA3 gene test. An ultra sound to see size of prostate and another PSA test.
After that I will see what the options are.
On this site many people mention things but don’t give full explanations of new treatments like the one that mentioned Hypothermia in Germany.
Also the person that changed their diet.
I am sure people on this terrible journey would like to know as much as possible.

Robert E. Lee
April 07, 2016

Hello
Just stared active surveillance. PSA of 12. two biopsies. The second biopsy was bio-jet fusion. Found I had one core sample gleason 6 and that one core less than 10% was cancer.
So, I decided on AS.
Im still running 40 miles a week and have run 100,000 miles since 1977.
My urologist will be checking me out every 3 months with biopsies yearly unless there is a change.
Hopefully, when that time comes, there will be better and better ways to get rid of the cancer.
That what I’m doing, just giving technology more time to improve.
Im sure I will have to sooner sort later have it treated.
Hopefully, both the urologist and I stay on top of it.
My wife died of glioblastoma just two years ago..
Cancer death is awful..any death is.

peter ciccone
January 12, 2016

hi, I found out I have prostate cancer 3 years ago. went from a 3.9 to a 5.9 in about two years. Got a biopsy and found out. I had 5 cores with Gleason 6 but all were only 5% except one which was 20%. I opted for Active surveillance. Changed my diet and take supplements and my psa went down to 3.2. Over the last 3 years it has fluctuated between 3.2 and 4.0 so far. I haven’t had anymore biopsy’s as of yet. Still not sure what to do

David and Martha
January 11, 2016

We are just starting this journey, went from a 1.51 to 4.68 in 7 years. I appreciate the insight you have provided here. Have had some symptoms on and off for the 2 years i.e. bleeding, dribbling….. Have had a rectal ultrasound with nothing present. We have been very proactive to move the doctors to allow regularly PSA (every 2 years) which is against their advise. We’re still waiting for the doctor to give his insight on this latest test. We hope it’s nothing but we’re realists. Thank you for recording your journey.

Lee Patin
December 25, 2015

On active surveillance for 3 years with Gleason 7, PSA range 16-19;
Feel good, no problems except mild BPH;
My regiment to live in harmony with cancer till aptosis – MMF (military micronutrient formulation), CBD oil, Paw Paw herb to cut circulation to tumor, Tumeric, papaya tea leaf

Eric
November 26, 2015

I would love to know if the subject is still alive . . . any update would be appreciated.

Jay
November 06, 2015

There’s a lot of anxiety with this diagnosis, what supplements are out there.
Thanks

Larry Smith
October 20, 2015

Active Surveillance for 5 years so far! Without annual biopsies, however I do have PSA testing every 3 months and have had two MRI’s in this period due to a rising PSA, however the results showed no high grade disease or tumors and the PSA had dropped back down each time to the 3.5 +/- range. My Father was diagnosed when I was 43 so I started PSA testing immediately. My first PSA at 43 was 1.73. Over the next 10 years my PSA fluctuated up and down from 2.0 to 3.55 so at 53 with a PSA of only 2.6 my urologist recommendation a biopsy although my DRE was always normal and I’ve never had any side effects, because of family history. To my surprise and the Doctor doing the biopsy, I was diagnosed in Dec 2010 at age 53 with prostate cancer. 1 of 12 cores was positive with 30% contained and Gleason 3+3 grade T1c. My Urologist INSISTED that I get treatment immediately, whether surgery or radiation, or I may die in 6 months! Needless to say after some research and three more opinions I fired that Urologist. So I got 3 more opinions, two from highly recognized oncology urology surgeons at two different major hospitals and one from an oncology radiologist from another major hospital that does proton therapy and they all agreed that I was a candidate for surgery, radiation or active surveillance. So I was relieved that there was no hurry so I started researching and changed my diet for the better, although I wasn’t overweight, I tended to eat a lot of junk food, fast food and sugary sweets. I’ve tried many different supplements as well and some I eventually got off of when learning that they weren’t good for prostate cancer. Over the last five years I have learned a lot, including the fact that there are so many conflicting medical opinions, conflicting studies and conflicting scientific data, that it is a confusing journey. However I do believe there are cures or at least the ability to slow the progress by eating healthier and avoiding certain food group, taking certain supplements, meditating, praying, exercising, etc… So recently Jan 2015 my PSA climbed from an average of 3.5 to a 4.20 so I had a MRI done and nothing showed up and my DRE was still normal with no nodules. Then a month later my PSA jumped to 5.20 so I had my second biopsy in April 2015. This time I had 4 of 12 cores positive with one being 40% contained (in the same area, left apex, as the last biopsy that found positive with 30% contained)and the other three were only 5% or less contained. The 5% or less cores were all Gleason 3+3, however the one core that was 40% contained was a Gleason 3+4. So there is some probable or possible progression, however I have not stuck to my protocol (diet, exercise, meditation, prayer, etc..)very well at all and feel that has contributed somewhat. I am still going to continue Active Surveillance and start a healthier lifestyle. I know I can beat this and I will!

Lee Patin
May 01, 2016

Thank you for sharing, yes be careful about supplements….use ones clinically validated
And testimony…most don t work,
MMF was formulated under CRADA s via DOD, in Isoform, pre-metabolized, with Glutathione-Elevating Agents to boost immune system…it is working well for me, no plans whatsoever of radical treatment, also I am much healthier now, let me know if I can help
Lee 469 623 1967

Michael Gilbert
June 11, 2016

I have just been diagnosed with prostate cancer and 3 cores came back positive. I have 2 3+3and 1 3+4. I’m 49 years old and I’m going with active survillance. Thanks for your blog.

David
October 07, 2015

I was diagnosed with Gleason 9 prostate cancer. 10 days later I was cancer free. Went to Germany and had hyperthermia and changed my diet. No urologist will tell you about these two options. Five years later, cancer-free and all parts intact I can say this from experience. Never have a biopsy, have an MRI and never have your prostate removed. Cancer can be killed. I only speak from experience.

Lee Patin
May 01, 2016

Thank you , good testimony, myself I do Micronutrient Immunotherapy, PSA unchanged for over a year, normal body functions w quality of life
Looking for local hyperthermia clinic
Dallas Texas
Thanks again

Marcos Elrod
September 04, 2015

My PSA is 6.1. In DRE doctor felt the left side of prostate is firm. 3D MRI showed large tumor with clinically high suspicion of cancer. PCA 3 urine was negative ( 19 score ). Doctor recommended biopsy.I just sent a urine MIPS kit to MLABS of the University of Michigan.
Does anybody have tips on other novel tests ?

Sid
January 19, 2017

Biopsy us right direction

Lynn
July 30, 2015

I would not recommend active surveillance to anyone. All it does is put you at higher risk with every passing day. I am 67 and went from a PSA of 4.7 to 8.6 in a little over a year. My initial Gleason was 6. I had declining Free PSA percentage which is a strong indicator. I had a lump with a digital exam on my prostate left lobe. The problem I followed Active Surveillance protocol and all it did was allow my cancer to go from a Gleason 6 to a 4+3(7) in a little over a year. With climbing PSA what seemed only a short time after the first set of biopsies I was having a MRI guided two biopsies at the tumor area. Both came back with 4+3. I did during this entire process seek 2nd opinions. All Active Surveillance did for me was make me stand by and let my cancer get much worse. Now after Robotic Radical prostatectomy which was performed 6 weeks after the 4+3(7)I am having many problems. All my margins, after the surgery the lymph nodes, seminal vessels etc that were biopsied came back negative. Yet with my first PSA test after the surgery I still had a PSA of .2. I have numerous bowel problems, and much concern and a lot of discomfort some 9 weeks after the surgery. So what did watchful waiting do for me nothing but get me into a worse condition, and one with more risk. I went for advice on radiation right after the cancer was found and was discouraged at the sales pitches I got. I then had my 2nd opinion Urologist tell me not to worry and go on watchful waiting and see him in six months. Bad decision and bad advice in my case. My prostate cancer got worse at warp speed. I again strongly urge you to get the problem taken care of early or at the time of diagnosis..

Lee Patin
May 01, 2016

Good morning, For us who have chosen Active Surveillance, very important to help your immune system overcome tumors with Micronutrient Immunetherapy- trust me it works plus I am in much health overall…because of cancer I am very healthy
No way I will do radical treatment!
Lee

Vijay
April 23, 2015

I have been on an active surveillance for the past 4 yrs. PSA has gone up from 4 to 7. I have not had second biopsy done for fear of infection. My friend a terrible experience with it. I don’t have any side effects. DRE is good. At 69 yrs of age I’m not sure if I should continue on AS. Fear is that if it is metastasized, treatment options are very limited. Thinking of Proton therapy. Any body has comments?

Thanks,

Vijay

Guy Naples
March 23, 2015

Jeffrey,
I want to thank you for writing about your experience. Have you still waiting or have you made a decision to proceed with a procedure. If so what did you decide?
Regards,
Guy

Dave,
Can you be more specific about the pills and powders and herbal medicines that you taking?
Thank you.
Regards,
Guy

Dave Evans
January 10, 2015

G’day and thankyou Jeff, I have been undergoing tests since an elevated PSA. Started at 2 3years ago went to 3.9 April 2014 which lead to a trus biopsy with a Gleason score of 6 in august 2014. I was given a diagnosis 23/9/14 of prostate cancer. Surgery was scheduled for 22/1/15 after diagnosis. With nothing to lose I began a ketogenic diet with guidance from a naturopath also taken a concoction of pills and powders (all natural) I also mixed in Chinese herbal medicine with acupuncture and meditation. After 30 days I reached a PSA reading of 2.1 I need to organise a new reading currently. I am organising an early meeting with my Urologist as I want to cancel the upcoming surgery and go the way you have. Once again thank you for your story. The similarities are amazing. Regards Dave

Fernando Cajale
August 20, 2014

The article by Mr Caruso is very interesting.
My case is similar .
I would like very much to communicate with him.
If possible kindly have him phone me
Thank you
Fernando Cajale
Boca Raton, Florida
Cel 561 985 1605

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