Active Surveillance rolling the dice? From Gleason 6-7 to Gleason 6, & my PSA going down.

September 5, 2014. Hi All -- This is a great forum I just discovered. My first time posting here. Feels to be a lot of caring and very knowledgeable folks here. Feet on the ground level-headed discussions. Of course, getting a PC diagnosis is certainly a wake up call requiring reading, research, and maintaining a good attitude, with major health-related decisions needing to be made. Opt for surgery/radiation/Chemo/freeze it/hormonal/alternative treatments (diet/lifestyle, supplements)? Which? Based on what solid reported scientific evidence if such exists, or on what personal experience?

My own particulars:

Age 70. BPH 4/14, 6/14, 7/14. Prostate nodule on DRE 4/14, 6/14, 7/14. Biopsy late July '14. Early Aug '14 told by my urologist I've got PC. (The room started spinning, my brain froze, the news freaked me out.) My then most recent PSA was 5.4 (4/14). PSA history below. First pathology report had me a Gleason 6-7. 6 of 19 samples positive. Two cores 100%, Adenocarcinoma, Gleason score 6 (3+3). Two cores, 68% & 88%, Adenocarcinoma, Gleason 7 (3+4). Two cores 69% & 75%, Adenocarcinoma, Gleason 6 (3+3). All six cancerous cores involved by tumor. CT and bone scan both negative. The other 13 cores were benign.

Talked with a radiation specialist. I've no interest in that. Met with a medical oncologist for a Second Opinion. Simultaneously got an independent pathologist report -- evaluate the same tissue slides the original pathologist looked at. Different Gleason score conclusion! Same six positive cores, 2 cores Gleason 6 (3+3), 2 cores Gleason 6 (3+3), 2 cores Gleason 6 (3+3). The 2 Left-Mid cores that originally were rated Gleason 7 (3+4) (66% and 88% of each core involved by tumor), the Second Opinion pathologist rated Gleason 6 (3+3). While elated at going from Gleason 7 to Gleason 6 on two cores, my relief is decreased by reading on this forum that post-prostatectomy (after surgical removal of the prostate) pathology reports of the removed prostate frequently show a Gleason score higher than the original biopsy pathology report Gleason score.

Here's my PSA history, oldest to most recent. The most recent 3 scores trending slightly downward:

1/08 -- 4.60
3/08 -- 6.40
7/08 -- 3.50
12/09 -- 2.50
2/11 -- 4.40
4/12 -- 3.2
4/14 -- 5.4
8/14 -- 5.1
9/3/14 -- 4.9

I'm trying to decide if my recent trending downward PSA scores, plus the Second Opinion biopsy pathologist's report that took me from the original Gleason 6-7 (3+3, 3+4, 3+3) Adenocarcinoma diagnoses to a Gleason 6 (3+3, 3+3, 3+3) Adenocarcinoma diagnoses, warrants my continuing with my last 30 days radical dietary shift to a strongly ALKALINE diet, coupled with my dropping sugar (including natural sugars) 100% out of my diet (zero fruit, zero fruit juice), lots of tumeric, lots of cayenne, lots of garlic, kale, broccoli, spinach, kelp, juicing wheat grass, etc., with my rational (or irrational) confidence my prostate cancer (a) may not increase in size, (b) may not metastize beyond my prostate capsule, and, or, even (wouldn't it be nice?), (c) may even decrease or disappear (total remission or improbable natural "cure").

One friend who has survived so far, I believe, lymphatic cancer, swears that cancer cells in the body need sugar to grow, so stopping eating ALL fruit is, in his view, just common sense. He's also persuaded that cancer thrives in an acidic, not alkaline, environment (this is also the yin-yang balanced pH conversation). Much less, or no, meat. Low, or no, fish. His own program is (a) no sugar, no fruit, no fruit juice, (b) total 100% alkaline diet, (c) no meat, no fish, (d) tummeric, cayenne, broccoli, kale, kelp, Vits A & E, echinecea, selenium, Vit. C, iodine drops, etc. He looks to me to be in vibrant health.

Am I making too much of my Gleason score going from 6-7 to 6? Are my yo-yo PSA's to be trusted as credible evidence I'm on solid ground with Active Surveillance or Watchful Waiting, or am I rolling the dice with my life here, by not making an appointment for nerve-sparring robotic aided DaVinci take-my-prostate-out surgery lickety split?

Hey, whaddya think? Meeting this coming week with my urologist. Saw the second opinion medical oncologist this past week.

What to do?! Don't want the cancer contained within my prostate capsule to get out of there. If I can be confident my Gleason score would move from 6 to 7 BEFORE there being any risk of it spreading beyond my prostate, I'm inclined to continue with my current program of diet and Active Surveillance. If, however, I've already got too much cancer in my prostate to be focused on the upside of alternative good dietary treatment, then I'm tempted to just get my prostate removed asap.

Agonizing a wee bit over my treatment decision, no question about that. And trying my utmost to stay positive.

Best, Bill Positive

Your body needs sugar to function and your blood Ph is maintained within very close parameters regardless of whether you eat an acidic or alkaline diet..If you can keep your PSA below 6, then postponing active treatment is indeed an option..My favorite supplement is "Pomi-T" a four ingredient pill the NHS in Britain prescribes to prostate cancer patients..

http://www.pomi-t.com/asco-pomi-t-study-summary/

You should realize that at age 70, the side-effects and risks of active treatment (surgery, radiation) start to outweigh any possible benefit..

Hi Tall Allen -- Really appreciate your response today and it's good practical information. Given the obvious importance of having a pathologist's report I can, as you put it, "take to the bank," I'll likely early next week contact one of the three leading prostate pathologists you mentioned as the gold standard: Doctors (David G.) Bostwick, (Jonathan I.) Epstein, and (Jonathan) Oppenheimer. With two pathology reports currently on the table based on the same original slides -- each coming to a different conclusion (!) (Gleason 6-7 versus Gleason 6) -- it sure makes sense to me to get another (Third) opinion from a nationally eminent pathologist in the field.

Thanks for the advice about don't take at the same time a selenium supplement with a Vit. E capsule -- it worsens PC. Didn't know that.

I know about dairy being bad for a man with PC. I completely dropped dairy in all its multitude of forms (cheese, milk, yoghurt, kefir, etc.) a month ago. I miss it! Like I miss eating lots of fruit. A small price to pay for the level of commitment required here. Haphazard efforts won't cut it. This stuff is the real deal. (That little pep talk to myself felt good. No question a positive attitude, just that, makes a difference in outcome.)

Glad you mentioned Active Surveillance usually entails particular steps be followed as part of a program -- thanks for listing them. Again, appreciate the specificity and precision of your comments. Good stuff !!

Bill

Mmmm, I find the dietary approach interesting.

Let me emphasise that what I am about to say relates to MY preferences, and I don't suggest it should be adopted by anyone else. We must all do what we feel is right for us.

I have yet to see any definitive research which suggest that any EXTREME diet, whether it be fat free, sugar free, low carb, vegetarian, paleo etc has a "significant" effect on longevity. I certainly agree that diet can have a significant effect on feelings of well being and to that end I certainly minimise the input of foodstuffs widely recognised as being detrimental to health if eaten excessively, ie sugars, fats, alcohol etc.

To that end I try to follow a balanced diet covering all the food groups coupled with a moderate exercise program appropriate to my age (my daughter is a personal trainer). I am 5'9" and weigh 180lbs, so not obese, but a touch of middle age spread.

Now I am 69 and even without PC, likely only have 10 to 15 years left. Even though I am not convinced, lets say an extreme diet could extend my life by 12 months, then I might live to 85. By then it is possible that other ailments will have overtaken eg arthritis, stroke, heart attack, who knows...Chances are I will not be in the full bloom of life.

And what is the price of acheiving that extra 12 months of questionable QOL? A denial of many of the more pleasurable treats which make life worthwhile - an occasional bar of chocolate, a nice pepper steak, an ice cream, a glass of wine, a juicy ripe mango. Well no thanks not for me. A diet of Kale, Kelp and Brocolli without even a peice of fruit would be my idea of hell on earth.

I'll risk losing a few months downstream for the pleasures of todays life.

I have already experienced a Cardiac Arrest (25 years ago and when I was a numbskull smoker) and that coupled with a diagnosis of PC makes me more than ever determined to really enjoy lifes simple pleasures.

Again let me emphasise, I am not decrying anyone elses dietary choices, but it isn't for me. I just hope it really gives you the outcome you seek.

Good luck,

Chas

There is much to be said for wresting a feeling a control when we have a disease that leaves us feeling so out of control. So if eating a diet with lots of cruciferous vegetables, soy products, and walnuts gives someone a feeling that he is controlling at least something, I say research-shmesearch - as long as it (1) doesn't cause any harm, and (2) is in addition to rather than instead of evidence-based medical therapies.

- Allen

bill,
there is no evidence that diet plays a role in reducing tumors, which means that there are no scientific studies that prove or disprove it. That said, most of the top rated oncologists, such as Strum, Scholz and Myers all have diet as part of their treatment program. Scholz said to me " 10 years ago if someone would have told me that diet affects PC I would have laughed. I have seen a lot of my patients on "weird diets" that went into completed remission and others who have had their cancer stop progressing. It was something I could no longer ignore given what I was seeing."

Tall Allen said...
The reason that I often recommend second opinions of biopsy slides from Bostwick, Epstein or Oppenheimer is because those labs only do prostate cancer and are widely recognized as specialists. If one of your opinions was from one of them, you can take it to the bank. Otherwise, you might do well to get an opinion from one of them.

Active Surveillance usually entails committing yourself to a program. While program criteria differ, they all have in common that there is a confirmatory biopsy, preferably mpMRI-targeted, within a year. Tracking with PHI is an improvement over tracking with just PSA.

Avoid Vitamin E, especially combined with Selenium, which has been proven to increase the risk of PC. Dairy has been implicated in prostate cancer too, so if you are cutting out meat and fish, that only leaves eggs and vegetables as protein sources. The rest of your list probably is not harmful.

- Allen

Food for thought about those eggs, as well as poultry with skin. And my G9 self always ate a bunch of both, specially eggs, FWIW. Does make me wonder, and I have cut way back on eggs while I think it over:
http://www.onegreenplanet.org/vegan-health/choline-why-eggs-may-worsen-prostate-cancer/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132069/

Plus, contrasting with those bad results for VitE/Sel, there is this related to types of Vitamin E:
https://www.healingwell.com/community/default.aspx?f=35&m=3145677

As to the OP, AS has the benefit of zero SEs, not counting spread of PC. But if you are a lovely G6 all around, the chance of spread is extremely low. A crystal ball would be helpful for that crap shoot! The other crap shoot is that even if we had a negative biopsy, it does not guarantee that a G9 is not hiding in there. You never really know with these Bxs. Still, you've got to go by something, and what you have to go by is G6, and there are no nasty SEs to AS if your PC does not spread.


Not counting PC, what would you guess your life span is? Worst case scenario, even if a G9 is in there, it is going to take a while for it to kill you, and if G6 it will probably never hurt you before something else does.

Hey Billy Bob,

"Not counting PC, what would you guess your life span is? Worst case scenario, even if a G9 is in there, it is going to take a while for it to kill you, and if G6 it will probably never hurt you before something else does."

As to life expectancy, tremendous longevity in my family tree. Men living into their 80s are the youngsters. Mostly living into the 90s. A sprinkling of my ancestors lived to be 100+. Genetics are on my side. "Not counting PC?" I dunno, mid to late 80s. That's 15-19 years more. Who knows?

I go through periods of looking around at the other drivers at a red light. Scares the dickens out of me! Lots of 80s and 90s, the people driving big cars. They can barely see over the dashboard. From behind it doesn't look like anybody is driving the car. Who knows what will hurt me? I'm thinking positive these days! BillyBob, hold that thought and ask me in 20 years.

Bill

Regarding diet - I think it is important to remember that there is middle ground - a person can probably accomplish significant benefit by increasing vegetable intake, reducing fat and taking smaller portions of meat. For example, even though I've chosen a diet that is more radical than most here would accept, I still eat a little turkey at Christmas and Thanksgiving - Diet is a spectrum and we have to find our comfort zone. And regarding something else getting you - diet probably has a greater impact on heart attack and stroke than on prostate cancer. My belief is that most vegetable/fruit products in their natural form are healthy and I've heard it said that fiber and other nutrients in fruit regulate the absorption of sugar. It's only when you take them and refine out all the sugar to put it into a doughnut or chocolate bar that things get dicey.

For anyone interested in diet, I would suggest the following books:

Foods That Fight Cancer by Dr. Richard Beliveau
The Spectrum by Dr. Dean Ornish
The Taste for Living Cookbook: Michael Milken's Favorite Recipes for Fighting Cancer by Beth Ginsberg and Michale Milken

Hi Dreamerboy,

Just want to apologize for teasing you about your handle, Dreamerboy. I've been thinking about this since three days ago. I wrote,

"Very catchy handle. Feels you are poking fun at yourself? Now that's extremely healthful. Self-deprecating humor is always so appealing. That's a whole separate discussion . . . happy people live longer. Proven scientific fact."

In re-reading it after I sent it, the energy of it just went thud with me. I can see that I thought I was being witty or amusing, but then I realized you might be a "dreamer" . . . a "dreamerboy" who dreams big about your life, dreams big about everything, and it's an accurate "handle" for who you are. And that using it here is not some sort of self-deprecating humorous use of the name.

We've got this couldn't-be-more-serious virtual group conversation going on here about our PC, but simultaneous with that is the maybe even more powerful man to man friendship and support of each other that is happening. PC is far and away most frightening and scary topic ("I've just been diagnosed with prostate cancer") I've ever dealt with. And the topic most in need of clear-eyed, cool, calm, analysis. That's the irony of it. I'm most in need of my analytical abilities now, at the same time I'm still reeling from the shock of the diagnosis. I need all the friends I can find! This is not the time to be a loner. The concepts of friendship and love are real and matter, and impact outcomes.

Needling you, teasing you, teasing anyone over their choice of a handle here, is not respectful. I was out of line in my comments and I apologize.

I picked my own handle, "Positive Bill," because historically I've been the most negative person I've every known, until my PC diagnosis, that is. I picked "Positive Bill" to remind me that being negative is a choice, as is being positive. My life changed the day in early August, a month ago, when my urologist said, "You've got cancer of the prostate." At that instant, I no longer had time to be negative in this lifetime. I felt "Bill Positive" a good reminder for me, to stay positive, loving, and supportive. Of all of you fellow travelers on this road of LIFE we are all on. Perhaps most important of all is to stay moment-to-moment positive, supportive, and loving of ourself. When I do that, my friendship means something. If I don't love myself, how can I help support another man with PC? So it starts with loving myself.

Bill

I definitely took no offense Bill Positive. There was a little humor intended in the name but it was generated by some urologists who seemed to have the attitude that I was dreaming if I thought I cold get by without surgery. I did originally pick the handle "dreamboy" but quickly changed it when I realized it might have the male equivalent connotation to "dreamgirl". Unfortunately I've never been accused of causing very many women to dream so then name didn't quite fit.

I agree with your positive attitude. I didn't realize myself how negative I could be until prostate cancer kicked me in the butt. I started listening on you-tube to a fellow named "Ralph Smart" during my workouts. He has some far out ideas but he's always gets me thinking positively. I think he is definitely "too far out there" for most here (and even for me sometimes) but he seems to have a knack for putting me in a positive frame of mind.

I feel the advice JohnT gave was pretty much spot on. I know I "try" to follow a diet as prescribed by the good doctors .... And Mike Milken (Google him for his diet recommendations).

Anyhow, there has been a lot of anecdotal testimony that supports your choice for a weird diet. After five years, I find myself not missing the dairy or meat ..... I actually enjoy my salads .... Something I did not enjoy five years ago.

Best wishes and good luck as you move forward!

Hi -- I contributed this morning to the thread Sonny3 started, "Beyond PSA & Gleason: Predicting your cancer's course." My post appears on the 2nd page.

Happy Sunday!

Bill Positive

____________________
Prostate biopsy procedure late July 2014
Diagnosed Prostate Cancer early August 2014
Prostate nodule 7/2014, 6 /2014, 4/2014

PSA history:
1/08 4.6
4/08 6.4
7/08 3.5
12/09 2.5
2/11 4.4
4/12 3.2
4/14 5.4
8/14 5.1
9/3/14 4.9

CT & bone scan 8/12/2014 negative

1st Pathology Report (8/1/2014) on 7/28/14 biopsy
4 cores Gleason 6 (3+3), 69%, 75%, 100%, 100%
2 cores Gleason 7 (3+4), 66%, 88%

1st Second Opinion Pathology Report (8/26/2014) on 7/28/14 biopsy
6 cores Gleason 6 (3+3), 77%, 77%, 78%, 78%, 95%, 95%

2nd Second Opinion (or 3rd overall) Pathology Report (_____) on 7/28/2014 biopsy
(In the works -- to resolve the difference of opinion
between the 1st pathology report and the 1st Second
Opinion report.)