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

In 1997, Jeffrey Caruso’s physician recommended prostate-specific antigen (PSA) screening as part of Caruso’s annual checkup. Then a 57-year-old businessman and avid bicyclist, Caruso* hadn’t had any prostate problems, but he agreed that regular PSA screening was probably wise for someone his age. The result — 3.9 ng/dl — raised some concern because it fell at the upper end of what was considered the normal PSA range: 0 to 4.0 ng/dl.

*Editor’s note: To protect his privacy, the patient’s name and some biographical details have been changed. All medical details are as reported. In keeping with editorial policy, the patient’s physicians are not named.

Caruso and his doctor chalked it up to his daily bike rides. During a long ride, the bicycle seat can put a lot of pressure on the perineum, the area between the anus and the scrotum, which can raise the PSA level even when cancer isn’t present. So neither doctor nor patient worried much about the finding.

The next year, however, Caruso’s PSA had risen to 4.4 ng/dl. Anxiety set in. He soon saw a urologist, who monitored changes in his PSA and performed digital rectal exams. (See “Feeling the prostate,” below.) During one of these exams, the urologist noted that a small part of the prostate seemed slightly firmer than the rest, a possible sign of cancer. In April 1999, Caruso had his first prostate biopsy. It was negative, but the initial surge of relief was quickly tempered.

Feeling the prostate

During a digital rectal exam (DRE), the doctor inserts a lubricated, gloved finger into the rectum. Because the prostate sits in front of the rectum, the doctor can feel part of it through the rectal wall. A normal prostate is small — about an inch and a half from side to side — and feels smooth and rubbery. A firm knot suggests malignancy, but it can be a sign of other conditions, such as benign prostatic hyperplasia. Not all cancers can be felt, however.

There are two schools of thought about the best position for the DRE. Some physicians prefer that the patient stand and bend at the waist, with his arms extended on the examination table. Others opt to have the patient lie on one side with one or both knees drawn up toward the chest. There are no data showing one position is superior to the other.

If you’ve had a DRE, you already know that it’s awkward and uncomfortable. However, it shouldn’t be painful — if it is, say so! The exam usually doesn’t last very long, but it should be done slowly enough that the doctor can assess the size of the prostate, feel its lobes, and detect any bumps or hardness or changes in consistency from one side to the other. Although every rectal exam should be thorough, some patients report that specialists seem to be more meticulous in performing DREs than their general practitioners.

“The urologist called me with the results and said that he did not find any cancer,” Caruso recalled. “But then I asked him, ‘Does that mean I don’t have cancer?’ And I remember he said, ‘No, it means we just didn’t find any.’ When he said that, I started to worry. Not finding cancer and not having cancer are two different things.”

Annual PSA tests and digital rectal exams followed, and Caruso’s PSA level continued its slow upward climb. In 2005, it hit 5.0 ng/dl, and both Caruso’s urologist and an oncologist felt a more pronounced hardening on the right apex of the prostate (see Figure 1 below). A second prostate biopsy followed, as did the diagnosis that Caruso feared: prostate cancer.

In this interview, Caruso describes his cancer diagnosis and the seemingly endless research he conducted regarding his condition. He also explains his decision to pursue active surveillance, sometimes called watchful waiting, a strategy he has stuck with for more than three years. (Active surveillance involves frequent monitoring of the cancer, rather than actual treatment, to gauge its activity. Because patients can opt for treatment at any time, doctors may use the phrase “active surveillance with delayed intention to treat” instead.) Caruso also offers advice for men recently diagnosed with prostate cancer who are sorting through treatment options.

Figure 1: Zones of the prostate

Zones of the prostate

When doctors talk about parts of the prostate, they may refer to the apex, located at the bottom of the prostate; the base, counterintuitively at the top; and the mid-zone, the space between the apex and the base. Alternatively, they may refer to three distinct areas of the prostate: the peripheral zone (1), the central zone (2), and the transition zone (3). Most prostate cancers arise in the peripheral zone, which includes the apex. Few arise in the anterior, or front, of the prostate.

Aside from the findings, how did your second biopsy vary from the first one?

There were several differences. During my first biopsy, the urologist took 15 cores, or tissue samples. In 2005, he did 20, so there was a greater likelihood that he’d find cancer if it was there. The needle was also smaller, and he gave me local anesthesia, which made a huge difference. If there’s no anesthesia, the biopsy is kind of painful. It’s not excruciating, but it does hurt. With the local anesthesia, it still wasn’t a pleasant experience, but it was more bearable.

How extensive was the cancer?

The pathologist found cancer in 40% of one of the cores from the right apex of the prostate. It was a Gleason 6 cancer, scored at 3 + 3. I asked to have the tissue samples sent to a pathologist at another hospital for a second opinion, which confirmed the original findings.

How did you react to the diagnosis?

I probably had the same reaction anyone else would: panic for several months and the fear that I was going to die in a year or two. When the panic finally went away, I was depressed. It was just like reactions I had read about in a number of books — that feeling of “Why me?” I also remember having a very strong urge to do something immediately. I didn’t want to wait and then have it be too late. My urologist said that I qualified for surgery and that he could perform the procedure, but he said that radiation and active surveillance were also options.

But you didn’t have a radical prostatectomy. Why not?

I was ready to have surgery when I left the urologist’s office, but he wanted me to see other specialists and consider other options. I went to see a radiation oncologist. Although he said I could have surgery or another form of treatment, he specifically recommended that I have seed implants, or brachytherapy. After that, I was ready to have seeds put in. I guess when you’re panicked and you want to do something immediately, you tend to go with the most recent recommendation you’ve gotten from a knowledgeable and articulate professional who really believes that it’s a good option for you.

But between these appointments, I saw an oncologist who also described all the options but stressed active surveillance. He also emphasized the fact that I didn’t have to rush to make a decision. Some studies had shown that people like me with early-stage prostate cancer and no symptoms could wait a year or so to make a decision. [See “No rush,” below.] Knowing that, I calmed down and decided to study the whole situation. How could I beat this cancer? I started to study the natural history of the disease and the available treatments, and I became increasingly aware of the side effects that accompany any and all of the treatments.

No rush

Boorjian SA, Bianco FJ, Scardino PT, Eastham JA. Does the Time from Biopsy to Surgery Affect Biochemical Recurrence After Radical Prostatectomy? BJU International 2005;96:773–76. PMID: 16153197.

Which side effects particularly concerned you?

I was concerned about all of the side effects. I had started talking to several patients and personal friends who had dealt with prostate cancer. Some of them had been operated on, others had radiation. One of the patients I talked to suffered from both urinary and fecal incontinence for several years. He ended up having two operations to minimize these problems, but he confided in me that he was ready to “call it quits” after two years of both fecal and urinary incontinence.

So he initially opted for a radical prostatectomy?

No. It’s hard to believe, but he actually had seeds. He became convinced that the seeds were misplaced or moved, because the degree of the side effects was so great and fecal incontinence is uncommon with this treatment. He finally had corrective surgery done. [See “Common side effects,” below.]

For me, the worst side effect of treatment would be fecal incontinence; second would be long-term urinary incontinence, and third would be erectile dysfunction. There is a very high potential for erectile dysfunction, especially in an older man. (Somebody might say that I’m an older man, but I certainly don’t feel like one!)

There are lots of data on the side effects of prostate cancer treatment. Even the very best practitioners, both radiation oncologists and surgeons, will tell you that they cannot guarantee zero side effects. They will then tell you their complication rates. Those are real percentages that you need to take into account.

Common side effects

Sexual side effects, urinary incontinence, and bowel problems occur to varying degrees with all prostate cancer treatments. A recent Harvard study polled 1,201 patients about side effects and quality of life following prostatectomy, external beam radiation, and brachytherapy. Among men who underwent brachytherapy, the rate of urinary incontinence rose from 5% before the procedure to 13% two months later. But within a year, just 6% reported the problem. Fecal incontinence, which less than 1% of the men experienced before brachytherapy, was reported by 6% at two months and by 4% after a year. Long-term incontinence requiring surgery, like that reported by Caruso’s friend, is rare.

SOURCE: Sanda MG, Dunn RL, Michalski J, et al. Quality of Life and Satisfaction with Outcome Among Prostate Cancer Survivors. New England Journal of Medicine 2008;358:1250–61. PMID: 18354103.

What other research did you do?

I read all the books on prostate cancer that were in print at that time, as well as books that came out later. I would read whatever books my doctor and I could find. I was always getting some new information from them.

But the biggest part of my due diligence was going through the raw data and reading scientific papers by the hundreds. I visited Web sites, attended meetings, and watched presentations that were posted online. I’d estimate that I spent three or four hours a day for about 18 months doing research.

That’s an incredible amount of time! Did you not believe what you’d been hearing? Or was there a disparity between what your friends were saying and what you read in scientific papers?

What gradually became clear to me is that when you have early-stage prostate cancer, no one will tell you what to do because you have so many options. At the same time, none of the options are guaranteed to beat the cancer. And even if you do beat it, you may not really beat it.

With each option you face different probabilities of side effects. I realized that the good thing about early-stage prostate cancer is that I had a lot of options, but the difficult part is that no one can give you a definitive answer. It’s not like having a late-stage cancer when your doctor says, “You need to have surgery tomorrow, because if you don’t, you will be gone in six months.”

I was playing around with the probabilities of different outcomes, trying to gain some perspective and make the best choice for my personal situation based on my values and my perceived life expectancy. So once I calmed down, I decided to invest an enormous amount of time in research. And being retired at that point, I had the time.

So how did you settle on active surveillance?

It was a very tough decision. I was trying to balance the risks with the potential rewards. I gradually became convinced that I was taking a reasonable risk with active surveillance. If my cancer had already metastasized, then neither surgery nor radiation would do me any good — the horse is already out of the stable, so to speak. I’d just be waiting for the symptoms to start and then trying to extend my life with hormones. You can hope that it hasn’t spread, but you can’t forget that it might have. It can spread microscopically, and microscopic spreading cannot be detected by current techniques.

Then I became aware that there are almost no hard data on differences in prostate cancer–specific survival among men undergoing the various treatments. There’s one set of studies from Sweden that shows a very modest advantage for surgery over watchful waiting. But as I said, the advantage is very modest — about 5% after 10 years. And the number of patients in the study was relatively small, and they had more advanced cancers than I did. So I didn’t think the data were definitive or directly applicable to my situation. A more recent study from the same group shows no statistically significant difference in overall survival between the two groups after 12 years. [See “Surgery vs. watchful waiting,” below.]

Then the other factor that went into my decision is that in a lot of cases the cancer will come back after treatment. So obviously either the cancer had spread before treatment, or not all the cancer was removed or destroyed through surgery or radiation. In fact, you can go on the Internet, plug in your numbers, and find out the odds that your cancer will recur if you have surgery or radiation.

On the positive side, prostate cancer has a very long natural history. For many men, the diagnosis occurs at a time when it doesn’t really matter because their life expectancy is such that something other than prostate cancer is going to kill them first.

Surgery vs. watchful waiting

Bill-Axelson A, Holmberg L, Filén F, et al. Radical Prostatectomy Versus Watchful Waiting in Localized Prostate Cancer: The Scandinavian Prostate Cancer Group-4 Randomized Trial. Journal of the National Cancer Institute 2008;1144–54. PMID: 18695132.

Bill-Axelson A, Holmberg L, Ruutu M, et al. Radical Prostatectomy Versus Watchful Waiting in Localized Prostate Cancer. New England Journal of Medicine 2005;352:1977–84. PMID: 15888698.

Holmberg L, Bill-Axelson A, Helgesen F, et. al. A Randomized Trial Comparing Radical Prostatectomy with Watchful Waiting in Early Prostate Cancer. New England Journal of Medicine 2002;347:781–789. PMID: 12226148.

With active surveillance, patients need regular biopsies. Was that a stumbling block in your decision to pursue active surveillance?

No. To be honest with you, without the anesthesia, it was quite unpleasant. But since my urologist started using local anesthesia, biopsies haven’t been a big deal.

How did your family react to your active surveillance decision?

My wife participated in many of my meetings with physicians, and she’s read all of the books I have and some of the scientific papers, too. Like me, she was concerned about the various side effects of treatment. She was very empathetic and helped me sort out the options, making it clear that she’d support whatever decision I made. If I had said, “I want surgery immediately,” she would have supported it.

She played a major role in calming me down, too. We talked about beating the cancer, but we knew that it might not go away. She encouraged me to think about managing the situation toward an acceptable outcome — acceptable in terms of the trade-offs, what I could and couldn’t live with.

Having been a businessman involved in the early stages of companies, I know that you have to make decisions even when you don’t have all of the facts you’d like to have. You use the information you have to decide where to spend money, how to invest resources, and what projects to take on. As you gather more data, you either continue down the same path or change directions. I started to think of my medical situation the same way. There’s a lot more information I’d like to have, but I manage as best as I can with what I know.

Under what circumstances would you stop active surveillance and turn to surgery, radiation, or another form of definitive treatment?

There are generally accepted criteria for who is a good candidate for active surveillance. [See “Suggested criteria for active surveillance,” below.] For example, the PSA should be under 10 ng/dl. Mine is 5 ng/dl. The PSA doubling time should be slow. Mine is incredibly slow — it’s taken nine years to go from 4 to 5 ng/dl, and that isn’t anywhere near double. The Gleason score should be less than 7. Mine is 6, so that fits. My tumor is an early-stage tumor, and I had cancer in fewer than three biopsy cores. As long as you have cancer in only one or two cores, and it’s in less than 50% of the core sample, you fit the criteria. I am completely under this umbrella. [See Figure 2 below.]

Suggested criteria for active surveillance

Researchers at the University of Toronto developed a treatment algorithm to better differentiate men with prostate cancer who can pursue active surveillance from those who need more immediate treatment. Those considered eligible for active surveillance have

  • a PSA of 10 ng/dl or less
  • a Gleason score of 6 or less
  • T1c to T2a prostate cancer.

T1c tumors cannot be felt during DRE; they’re usually discovered after a rising PSA prompts a biopsy. T2a tumors can be felt, but they are confined to the prostate and less than half of one of the gland’s lobes.

For men with a life expectancy greater than 15 years, the cancer should be in only one or two cores and constitute less than half of those cores.

Patients who meet these criteria can still opt for treatment. For example, some find the psychological burden of living with cancer too great. One’s age, family history, and other medical conditions can also sway decision-making.

Figure 2: Caruso’s biopsy results

Caruso's biopsy results

By the end of 2008, patient Jeffrey Caruso has had four prostate biopsies (above, rear view). The first (1), done in 1999, found no cancer. Six years later, the second biopsy (2) detected cancer in 40% of one core, or tissue sample, taken from the right apex. In 2006, a third biopsy (3) detected cancer in 10% of one core taken from the right mid-apex. (The lighter dots indicate where cancer was found on previous biopsies.) The fourth biopsy (4) found cancer in both the right apex (15% of one core) and the left apex (10% of one core). All of the cancers were scored a Gleason 6, meaning that Caruso meets the criteria for active surveillance.

So if your PSA suddenly jumped to 10 ng/dl, would you opt for treatment? Or would you want to see changes in multiple factors before changing course?

Well, the first thing I would do is get another PSA test. PSA can change for reasons other than prostate cancer. But if my PSA moved from 5 to 10 ng/dl within one or two years, it would be a huge red flag that the cancer was advancing. I’d also look at recent biopsy results. Most importantly, did the Gleason score go up? Or has cancer been found in three or more cores? Is cancer in 50% or more of any core? Those would all be indications that the tumor is growing. If I move significantly out from under the umbrella of the generally accepted criteria for active surveillance, I will go ahead with treatment. [See “Guidelines for intervention,” below.]

Guidelines for intervention

The same Toronto researchers who established active surveillance criteria recommend suspending active surveillance if one of the following happens:

  • The patient’s PSA doubles in less than three years (from 4 ng/dl to 8 ng/dl, for example).
  • The patient’s Gleason score rises to 7 (4 + 3) or more after a repeat biopsy.

Some doctors suggest treatment if any component of the Gleason score is a 4 (for example, a 3 + 4) or if significant changes are noted during a DRE.

Given all of the potential treatments, which one would you choose?

I haven’t made that decision yet. I will cross that bridge when I have to.

Treatment definitely makes sense if you don’t fit the active surveillance criteria, but the techniques and technologies are improving very, very fast. For example, surgeons are getting more experienced with the da Vinci robot, so robotic surgery may not have some of the disadvantages of traditional surgery. Radiation techniques are evolving very fast. One of the patients I consulted has undergone treatment with CyberKnife, which is a new technology. It’s too early to tell, but this technology might have a lot of advantages over other types of radiation therapy. And improvements in imaging technology are making the placement of radioactive seeds more accurate.

Several centers are getting more experienced with high-intensity focused ultrasound [HIFU] and cryotherapy. These technologies are still experimental, but researchers are doing clinical trials in the hope that these technologies will gain FDA approval in a couple of years.

Right now, I’m just trying to buy time. Every year that I don’t have to deal with the side effects of a treatment is a year that I’ve won. Perhaps if I’m lucky, by the time I have to choose a treatment, one will have proven to be clearly superior, and my choice will be easier.

How do you keep up to date on all of the technological advances? Do you still read everything you can find?

I’ve gotten over my obsession with reading dozens of scientific papers each month, because I now feel I have a strong knowledge base. I concentrate on just a few select things, such as understanding the improvements in HIFU and following what happens with CyberKnife and other radiation therapies. I’m also focusing on improvements in robotic surgery. One of the challenges there is to reduce side effects like urinary incontinence.

What advice would you give to readers in a situation like yours who don’t have the time or resources to study prostate cancer to the extent you did?

I would strongly advise people not to make any decisions while they feel panicked or depressed because the decision is likely to be wrong. You want to make a decision after you have calmed down and accepted the fact that you have this disease and that you are not alone. If you are diagnosed with early-stage disease, you have time to make a decision.

Next, I would recommend consulting with at least three physicians: a urologist, an oncologist, and a radiation oncologist. If you are seriously considering surgery, talk with both a robotic surgeon and a traditional surgeon. Do not be afraid to get a referral to another specialist for a second opinion, even if the first opinion is from a top surgeon. Talk to someone from a different institution. When we’re patients, we’re all reluctant to ask for a second opinion. You just have to get over that. That’s part of doing your due diligence.

I would also recommend reading a couple of the major books on the subject because they’ll give you good background. But keep in mind that most of them have been written by prominent surgeons and are biased in favor of surgery. There are good Internet sites, too. I’d recommend the National Cancer Institute’s site, www.cancer.gov.

If you could direct prostate cancer research, where you would place the most emphasis?

I think the biggest challenge is to find a way to differentiate indolent prostate cancer and aggressive prostate cancer. It’s critical for patients; they need to make informed treatment decisions. It’s also critical for the health care system in general. The cost of treating people who don’t really need it has to be extremely high. In the long term, I think we need to better understand what causes prostate cancer. Ultimately, that might help us prevent it.

Any final comments?

I’m in good health. I’m very fit. I exercise two to three hours a day, and have done that all my life. My parents lived to be 94 and 100 years old. I thought that I was pretty much indestructible. So, this diagnosis changed my life. I became much more aware of my own mortality.

I slowed down after the diagnosis. I was already retired, but I disengaged from many commitments that involved lots of meetings or a great deal of time. I wanted to have more control of my own time. I started to eliminate the activities in my life that I didn’t find fun or that were frustrating. I have a much higher appreciation of time as a resource — and that it’s vanishing faster than I once thought. I feel fortunate that my condition isn’t worse, and I’m reasonably optimistic that I can achieve a good outcome.

Originally published Jan. 1 2009; last reviewed March 11, 2011.

Comments
29
Fernando Cajale

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

Dave Evans

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

Guy Naples

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

Vijay

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

Lynn

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..

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

Marcos Elrod

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 ?

David

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.

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

Larry Smith

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!

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

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.

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

David and Martha

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.

peter ciccone

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

Robert E. Lee

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.

Kenneth Ridgeway

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.

Keith Prothero

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.

Glenn Benish

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.

Mitch

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.

Ray Schilling, MD

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.

Roger Philpot

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.

George

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.

Richard

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.

Steve

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.

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