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

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Posted 10/11/2014 1:28 PM (GMT 0)

toyoung said...
Has anyone read anything about egg white being a healthier replacement to eggs?

Yes. Doctor Ornish has listed egg whites as one of the healthier foods on the spectrum. Apparently egg whites have all of the protein but almost none of the fat of whole eggs. This was a great relief to me as it allowed me to participate in a more traditional breakfast.

Try: egg white omelets with mushrooms, onions, spinach and some vegan cheese. Vegan cheese seems to go particularly well when mixed with egg whites as it gives them a little more body and flavor.

Or: egg white french toast with cinnamon, vanilla, salt, pepper, and a spoon of corn flour. The corn flour gives the mix a little more body and helps contribute a golden color to the French toast.

Add a couple slices of veggie bacon or sausage and a good cup of coffee and you have a very satisfying breakfast.

I've found the best place to buy egg whites is at Costco.
Posted 10/11/2014 1:54 PM (GMT 0)
Dreamerboy, My breakfasts consist of either Raisinbran, blueberry's, fat free milk or eggwhites, kale, turkey bacon omelets.  Glad to see another person on AS on the board  
Posted 10/14/2014 2:33 PM (GMT 0)
Hi all,

I've been away for a week on a work project, limited access to a computer, a number of new postings I want to read. I'm thrilled this thread seems to have so many people reading it -- I guess it's a strong thread for folks going strong for diet as a major part of their PC treatment.

While I was away I saw first-hand how some of my old automatic habits of eating -- eating fruit, eating dairy, eating "health food ice cream" (those little yummy Rice Dream chocolate-dipped "ice cream" [frozen vanilla soy milk] sandwiches. I love cheese and used to eat a lot of it, but with my no dairy self-imposed rule of the last two months (no fruit, no dairy, no meat) I had pretty much stayed on the "wagon" with no exceptions. I saw how putting myself in new surroundings, all of a sudden my frig is back at home, and my self-discipline re food went out the window.

I'm so happy to be back home again. One thing is new. Rather than beat myself up with self-criticism for what I didn't eat the past week away from home, rather focus back on now is now, there's no time like the present to do the right thing, and life is easy and relaxed and positive and upbeat again. "Row row row your boat, gently down the stream, merrily merrily merrily, live is but a dream."

Not taking things too seriously. Loving myself. Not wasting any more time beating myself up over eating a thing or two I recently stopped eating. Start now! My life starts now. I begin again.

Yesterday I saw my 2nd opinion guy, who is a medical oncologist. Such an easygoing fella. While he reported my PSA had gone up from 4.9 to 5.7 -- they have their own in-house lab and every visit begins with a nurse sticking a needle in my arm for some blood to get, among other readings, a new PSA score -- he emphasized that he considers 4.9 and 5.7 within the range of normal variation. He told me if my PSA score jumped up to 10 or 20 or 40, or was heading in that direction with significant jumps, that would be the time to assess possible other options. I know he was talking about RP, radiation, etc., which I'm so diligently (except for the past week) trying my utmost to avoid with a diet I believe in -- garlic, tumeric, cayenne, broccoli, cauliflower, avocado, onions, leafy greens, tofu, fresh soybeans, etc. etc.

I asked him how long he thought the cancerous tumor my urologist had felt during a digital rectal exam last April had been there, and his response was, "I dunno, 5-6 years." His point was that with Gleason 6s all around, I've got a slow-growing cancer inside my prostate. So long as my PSA scores stay relatively low, he's okay with my avoiding more dramatic conventional methods.

I have to laugh to myself about "It makes a difference what 'weather report' I listen to." Two weeks ago I saw my urologist who was somewhat dramatically stating his view I was not a candidate for Active Surveillance because I've got a cancerous tumor inside my prostate, and I should get it taken out (RP) quick. Like as soon as possible.

Different doctor. Different advice! My 2nd opinion medical oncologist guy mentioned a medical scientific paper that involved autopsies of a lot, maybe a thousand, deceased older guys -- my age, 70, and older -- and a full 15% of them had prostate cancer they were, according to their families, completely unaware of. Someone said here some time ago that he switched doctors when his doc said, "My job is to keep you alive until something else (besides cancer) gets you -- heart attack, stroke, car accident, etc." I wouldn't have changed doctors on hearing that comment. Sounds like pretty honest, practical, talk.

Even my urologist surgeon guy said, "If you do nothing you've got a 50/50 chance of getting another 10-15 years until your prostate cancer metastasizes." With those odds sounding pretty good to me, I thought "Then why the intense encouragement I get a DaVinci Radical Prostectomy (spelling?) like, tomorrow? If I've got another 10-15 years left on this old vehicle/space ship I'm living inside of?"

It just goes to show how important it is to keep checking with my physicians what their unspoken assumptions are. Which to me is, my (previous) urologist thinks I've got 10-15 years left on this old car" AND he thinks I need a Radical Prostectomy like, next Wednesday. Isn't there a little bit of a contradiction in those two things?

Just to cover my bases, I've got an appointment this Wednesday afternoon with the alleged (according to my 2nd opinion medical oncologist relaxed guy) prostate cancer surgery rock star partner of my old urologist. Just because I'm committed (anew!) to my diet I know I thrive on and feel great on, still, I was to keep the lines of communication open to a top urologist/surgeon, just to hear what he has to say -- even if I know pretty much what he's going to say.

I'll take a friend with me so there are two sets of memories, minds, people asking good questions of the urologist/surgeon in the room.

It feels great to be back. I find writing posts to this thread I started way back around September 5th -- seems like a year ago!!! -- is terrific therapy for me. I love to write and I'm often astonished at what I write . . . a good astonished. Left to my own muddled thought processes, I'm often unsure what I think or believe. But given the chance to post here on the Healing Well Prostate Forum, just the act of trying to explain to you what's going on, there's always the wonderful side benefit that it helps me greatly in understanding my own process. Talking to other people about the sorts of stuff that we discuss here, is tremendously valuable. It's like having 10,000 good friends out there -- JayBee, Dreamerboy, everyone else here, both who post and those who so far only read but don't post -- I never knew I had.

It's like a virtual group. Not quite the same as having 15 guys in a circle in the same room . . . responses and reflections and feedback might take a day or two or more . . . but wonder of wonders, men are actually reading these posts, and the most courageous (and/or crazy) of them (?) are posting too, which completes the circuit. We each feel seen, heard, listened to, loved, cared for. Tough to beat that. And its free too. What a deal !!

Bill Positive

______________________________________________
______________________________________________
70 years in this body I've only just recently
properly appreciated -- better late than never!
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
10/13/14 5.7

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 (9/12/2014, Johns Hopkins) on 7/28/2014 biopsy.
6 cores Gleason 6 (3+3),
A. prostatic adenocarcinoma, 90%, 80%
B. prostatic adenocarcinoma, 90%, 90% ("perineural invasion identified in this case")
C. prostatic adenocarcinoma, 90%, 90%

Post Edited (Bill Positive) : 10/5/2014 7:56:01 AM (GMT-6)

Post Edited (Bill Positive) : 10/14/2014 8:38:52 AM (GMT-6)

Posted 10/14/2014 3:25 PM (GMT 0)

Bill Positive said...

My 2nd opinion medical oncologist guy mentioned a medical scientific paper that involved autopsies of a lot, maybe a thousand, deceased older guys -- my age, 70, and older -- and a full 15% of them had prostate cancer they were, according to their families, completely unaware of.

Bill Positive, I'm not aware of the study you mentioned above, but a similar study which examined slightly different outcomes had even more striking results...results which are really important for all men diagnosed with low-risk PC to understand before deciding on a treatment path.

The study I am talking about is sometimes called the "Detroit" study because it did take place in the city of Detroit, but there have been other multi-institutional studies which have reconfirmed the basic premise and findings.  In general, once a man hits 30-40 and proceeding for the rest of his life, the percentage of men his age with detectable prostate cancer (whether they know it or not), is rougly equal to his age.

So, about 70% of 70-year olds are walking around with detectable prostate cancer...many of whom have no clue that they have it, and many of whom it will never bother them in their life time.  BUT, some of them have encountered a set of circumstances which have led to a prostate biopsy which DID identify prostate cancer.  Random testing/screening may have led to that biopsy, or an infection, or other reason.

Obviously, the percentage of men who die from prostate cancer is much, much lower.  It's not zero, but it is much lower, which highlights the indolent nature of a large percentage of cases.

How did they discover the close correlation between age-in-years and the likelihood of the presence of PC?  From autopsies of men who died in accidents.  In the Detroit study, the prostates of 525 consecutive male trauma victims dying in Detroit during the early 1990s were, in collaboration with the Wayne County Medical Examiner, removed for examination.  The whole prostates were step-sectioned at 2-3 mm intervals.  Bottom line was that the frequency of latent prostate cancer increased with age and was appreciable, even in young men (roughly 30% of 30-years olds, and 40% of 40-year olds). 

Here's a chart of the results of the Detroit study:  http://urology.ucla.edu/body.cfm?id=267

These results are really quite striking...

Posted 10/17/2014 2:26 PM (GMT 0)
Hi JackH,

Thanks so much for your post about the Detroit study of cadavers re how the presence of Prostate Cancer closely tracks their age ... 40 percent of 40 year old men have PC (whether they know it or not) ... 50 percent of 50 year old men have PC ... 60 percent . . . etc. And the winner is . . . a hypothetical 100 year old man that has a 100 percent chance of having prostate cancer . . . and yet, despite the likely cancer, he made it to being 100! It's an enlightening set of statistics. On the one hand, how getting PC eventually is inevitable for most men, while also being encouraging news (in a depressing sort of way?) that having PC is not necessarily such a rare thing and a bad thing (unless it is).

Here's something encouraging for those here who are interested in the dietary approach as a significant (or supplementary) alternative treatment option. JayBee, Dreamerboy, Bill Positive, and others take note.

I'm on Johns Hopkins prostate cancer related topics emailing list. This just arrived this morning. Under the heading "Johns Hopkins Health alerts," and "The Latest Prostate Treatment Reserch Breakthroughs," and "The Johns Hopkins Prostate Disorders Bulletin," these juicy tidbits and teaser morsels are listed. [We have to fork over $149 to subscribe to the quarterly newsletters or bulletins.

" -- Why experts now estimate that up to 90 percent of cancers of the prostate may have a dietary link."

" -- New evidence that the progression of prostate cancer may actually be slowed by dietary changes. One study published in the Journal of Urology found that tumor cells from men taking flaxseed in combination with a lowfat diet appeared to be growing more slowly and dying more quickly than the control group."

" -- Two types of foods that should be included plentifully in the diet of anyone at risk for prostate problems -- or experiencing them." [The email doesn't say what those two types of foods are [it costs $149 to find out] but two groups that come instantly to mind are the cruciferous (spelling?) vegetables like Cauliflower and Broccoli, and the lycopenes, like tomatoes (most potent when cooked before eaten)

(Does this mean I can go back to eating all the pizza I want?! Just kidding. No pizza for me so long as I'm going the no dairy, low-carb, no fruit, low-protein (almonds, little bit of fish for the good EPA-3 fatty acids (EPA-6s being the bad or useless ones, if I'm remembering this right), sea vegetables, tumeric, cayenne, smaller size portions, no unconscious "vacations" from the diet, etc. route.)

I just this morning made an appointment to see Dr. H. Ballentine Carter at Johns Hopkins in a couple of weeks. Possibly an entry consultation for Hopkins' team approach, where 5-6 specialists review my data, slides, CT and bone scans, biopsy pathology reports (Dr. Jonathan Epstein has already seen the slides, but I was told Dr. Carter wants to look at them himself), leading to a meeting with the 5-6 specialists, Dr. Carter, plus myself, and some consensus emerge on the best way to go.

A friend asked me yesterday if I knew the size of my prostate enclosed tumor and whether it has grown or stayed the same or shrunk since I commenced the serious dietary program simultaneous with getting the "you've got prostate cancer" diagnosis in early August '14. Good questions!! Which I couldn't answer because I've never thought to ask (my dumbness sometimes astounds me) and nobody has volunteered the idea that it would be a good thing, and very relevant, to answer these basic basic questions. One of the questions/requests we find out pronto that I've got for my appointment with Dr. Carter in two weeks.

I see the big picture as there's a sort of footrace going on between the clear benefit I intuitively know my strict diet is strongly (if slowly) fighting my prostate cancer, on the one hand. And on the other, I suppose its fair to say my prostate cancer is trying to (slowly) kill me. So it's my diet and exercise and having fun and meditation and acupuncture and yoga and sex and thinking positive positive ... against, "and in this corner, introducing, Bill's prostate cancer." Who is going to win this contest?

Existence, I guess. One or the other. My sense is it depends on how seriously, or how playfully, I'm up to play the game? I think it's crucial that I've accepted responsibility for having the prostate cancer in the first place. As a friend reminded me at a workshop, I cannot change what I haven't accepted. Feeling a victim isn't going to hack it. It's MY cancer. I accept that.

What's next? I truly feel what's next is whatever I most want to be next. If the We Are All One, There Is Only The One, The Whole, Existence Is All There Is, And I Am a Drop In That Ocean, that makes me all-powerful, like Nature, too, so if I decide not to have prostate cancer any more, then how can cancer survive in that environment? Up against Existence itself. Or maybe Existence is utterly impartial. Isn't taking sides. My death is maybe as important to Existence as my life? Don't know!

Happy Friday !!

Bill

______________________________________________
70 years in this body I've only just recently
properly appreciated -- better late than never!
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
10/13/14 5.7

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 (9/12/2014, Johns Hopkins) on 7/28/2014 biopsy.
6 cores Gleason 6 (3+3),
A. prostatic adenocarcinoma, 90%, 80%
B. prostatic adenocarcinoma, 90%, 90% ("perineural invasion identified in this case")
C. prostatic adenocarcinoma, 90%, 90%

Post Edited (Bill Positive) : 10/5/2014 7:56:01 AM (GMT-6)

Post Edited (Bill Positive) : 10/14/2014 8:38:52 AM (GMT-6)
Posted 10/18/2014 1:39 AM (GMT 0)

Try: egg white omelets with mushrooms, onions, spinach and some vegan cheese. Vegan cheese seems to go particularly well when mixed with egg whites as it gives them a little more body and flavor.

Or: egg white french toast with cinnamon, vanilla, salt, pepper, and a spoon of corn flour. The corn flour gives the mix a little more body and helps contribute a golden color to the French toast.

I've found the best place to buy egg whites is at Costco.

You're making me hungry, Dreamerboy! That omelet sounds really good!

I noticed you put cinnamon on your french toast. I remember fondly endless lazy summer days, as a boy, when me and my best friend, Mikey, would pack a lunch, jump on our bikes, and ride a few miles to a deserted little park, where we would ride our bikes like maniacs down a steep, winding trail to an idyllic shady spot beneath the spreading limbs of a massive old oak. Having worked up a good appetite, it was time to open those brown bags. I ate the same thing every day, about five or six pieces of "cinnamon toast." Not the most healthy thing, since it was white bread, toasted dark brown ( had to to be just starting to burn before I would eat it), with lots of butter spread on it (was probably margarine), then a couple tablespoons of sugar, topped with a think coating of cinnamon. Cold. But I still loved it! lol

On all that unhealthy bread, sugar, and margarine, however, was a little bit of goodness; Cinnamon! Been eating a lot of it, lately, as I seen to remember reading somewhere that it was good for me.

So, just now, I resorted to my standard research technique these days. Google whatever, in this case Cinnamon, and cancer. Here is what the Cinnamon Cancer google turned up, among other things.

RESULTS: Cinnamon extract strongly inhibited tumor cell proliferation in vitro and induced active cell death of tumor cells by up-regulating pro-apoptotic molecules while inhibiting NFkappaB and AP1 activity and their target genes such as Bcl-2, BcL-xL and survivin. Oral administration of cinnamon extract in melanoma transplantation model significantly inhibited tumor growth with the same mechanism of action observed in vitro.

CONCLUSION:Our study suggests that anti-tumor effect of cinnamon extracts is directly linked with enhanced pro-apoptotic activity and inhibition of NFkappaB and AP1 activities and their target genes in vitro and in vivo mouse melanoma model. Hence, further elucidation of active components of cinnamon extract could lead to development of potent anti-tumor agent or complementary and alternative medicine for the treatment of diverse cancers.

AND

RESULTS:Cinnamon alters the growth kinetics of SiHa cells in a dose-dependent manner. Cells treated with ACE-c exhibited reduced number of colonies compared to the control cells. The treated cells exhibited reduced migration potential that could be explained due to downregulation of MMP-2 expression. Interestingly, the expression of Her-2 oncoprotein was significantly reduced in the presence of ACE-c. Cinnamon extract induced apoptosis in the cervical cancer cells through increase in intracellular calcium signaling as well as loss of mitochondrial membrane potential.

CONCLUSION:Cinnamon could be used as a potent chemopreventive drug in cervical cancer.

Well, what do ya know? Maybe me and Mikey were onto something! lol


http://www.ncbi.nlm.nih.gov/pubmed/20653974

http://www.ncbi.nlm.nih.gov/pubmed/20482751

Post Edited (Jaybee_007) : 10/17/2014 7:45:05 PM (GMT-6)

Posted 10/18/2014 1:53 AM (GMT 0)
Good to see ya back , Bill. I was worried about you. lol

More good things in those posts than I have time to comment on now. But I loved this part:

" If the We Are All One, There Is Only The One, The Whole, Existence Is All There Is, And I Am a Drop In That Ocean, that makes me all-powerful, like Nature, too, so if I decide not to have prostate cancer any more, then how can cancer survive in that environment?"

Love that because it is very close to my core concept these days, which I take from ancient Chinese Taoist texts: "Embracing the Oneness." For me, that is what it is all about. When I do my meditation, yoga, or just plain stop for a minute, to take a few slow deep breaths, and appreciate the fact that I am a living, BREATHING being. In those moments, I concentrate on Embracing the Oneness. Works for me! lol

Post Edited (Jaybee_007) : 10/17/2014 7:56:10 PM (GMT-6)

Posted 10/19/2014 12:38 PM (GMT 0)
Hi All,

Does anyone know what type of machine -- MRI? PET-MRI? CT? something else? -- exists that can provide an accurate description of the size and dimensions of a cancerous nodule or tumor inside a prostate?

A dear friend in Europe inquired last week, "What is the size of the tumor?" I didn't know, and couldn't tell him, because (a) it just never occurred to me to ask my doctors, and (b) it just never occurred to me that's essential vital information for me to know to assess whether my strict diet (no meat, no dairy, no eggs, no fruit, no poultry or fish, lots of veggies, sea veggies, tumeric, cayenne, etc.) the last 9 weeks is having an effect on the size of my tumor on one side of my prostate?

Isn't it relevant to know, month-to-month, whether my tumor or nodule is growing in size? staying the same in size? or shrinking in size? What medical technology or wizardry currently exists to provide and answer to this fundamental, elementary, relevant, basic question, "What is the size of my tumor?"

This might be unfair, but I've wondered whether the reason my doctors have not on their own initiated testing to answer this question, is they, in the main, do not give (any or enough) credibility or worth to the Prostate Cancer alternative treatment I am pursuing on my own -- a major, dramatic change in my diet, commencing when I got the "you've got prostate cancer" diagnosis in early August?

If my doctors (not all of them) cannot conceive of any diet actually changing the progression of the disease, the prostate cancer, and are only considering the conventional treatments -- radical prostectomy (spelling?), radiation, chemo, hormones, etc. -- which they may (predictably?) assume I'll agree to, or authorize immediately if not sooner, then, it makes perfect logical sense that they might not even think of finding out, for my benefit, the answer to the excellent question, "What is the size of your tumor, Bill?"

I know this is a dark area, and I hate to complain or to be negative, but I honestly cannot fathom how I'm now about 9 weeks out from diagnosis day, and I don't know the dimensions -- in inches -- the size of my cancerous prostate tumor or nodule. Can anybody help with whether the technology currently exists to answer one of my basic questions, "What is the size of the prostate tumor or nodule my urologist said exists on the basis of three digital rectal exams (DREs) he conducted in April, June, and July of this year?" I've even recently thought for the first time this terrifying question, "Can I trust my urologist when he says he felt a hard nodule or tumor during his, three times now, digital rectal exam? Shouldn't I be getting a 2nd Opinion on that too? Have a different urology MD perform his own DRE?

I've always felt that my innocence and sometimes lack of skepticism (when I'm not experiencing an excess of skepticism or cynicism) is an advantage, a plus. I just assume everyone has my best interests (not theirs) uppermost. So I always assume everyone is being totally 100 percent honest and truthful and is giving me their truth, their whole truth, and nothing but their truth. And I'm always stunned when I discover they may not be.

Did it ever occur to me that robot-assisted radical prostectomy might have a higher statistical incidence of injury or death during the procedure, than open surgery (which yields perhaps a better view of the overall terrain)? Or that the manufacturers of the robot-assisting equipment currently on the market provide monetary incentives -- they make payments -- to surgeons to promote the use of their robot-assisting medical devices? If that's true, then isn't there more than a slight odor of conflict of interest going on?

Here's the language verbatim as it appears from an exceedingly reputable, unquestionably authentic and sincere and truthful source (as I perceive it). I just read this in the past 48 hours.
_________________________________________

"A patient undergoing the surgery described above could expect to have a carefully performed operation with the best chance of total cancer removal using visual magnification and tactile feedback rarely requiring blood transfusion, and that can be performed in just over an hour. Men are discharged from the hospital on the day after the procedure."

"I am often asked why I prefer a standard open operation rather than the robotic approach to radical prostatectomy. The reasons are straightforward:

open surgery allows one to see both the forest and the trees. The view of the entire surgical field is restricted with robotic surgery (missing the forest for the trees). Federal regulators are investigating a sharp rise in injury and death reports in robotic surgeries. The reports include severe burns to internal tissue, pierced arteries and organs, and internal bleeding. I believe these are a result of not seeing the "forest" (organs around the prostate) and focusing only on the "tree" (prostate).

Lack of touch (tactile feedback) with robotic surgery.Surgery to remove an organ (or part of an organ) is essentially the art of safely separating one tissue from another. To do this carefully requires touch to be able to determine when one tissue is adherent to another. Without touch there is an increased risk of leaving prostate tissue behind - an explanation for the finding in some studies that positive margin rates are higher with robotic versus open surgery.

There is no scientific evidence that men undergoing robotic surgery have better outcomes when compared to open surgery. The popularity of robotic surgery is based on a) monetary rewards from the device maker to physicians to "push" its use, and b) hospital advertising to capture market share and recoup expenses for the device purchase and upkeep. These perverse incentives ignore the lack of scientific evidence that robotic prostatectomy improves outcomes. In fact, a 2013 study from Johns Hopkins published in the British Journal of Urology showed that a delay in discharge due to post-operative complications was almost 4 times more likely for men undergoing robotic compared to open radical prostatectomy. And, a large study from a Medicare population using validated questionnaires showed that when compared to open surgery, men undergoing robotic surgery had no better urinary or sexual function post-operatively. Because robotic surgery has been advertised with unsubstantiated claims, studies show that men undergoing robotic surgery are more likely to suffer regret likely due to unrealistic expectations."
_______________________________________

Happy Sunday!

What's that great 1970s song, "It's just another day in paradise." I'm so happy to be alive, and if Existence/God/the Ultimate, can take note of my preference for living rather than for dying, and somehow find it appropriate to nudge things in the direction of my living -- helping me to become cancer-free through diet and lifestyle! or just stabilize my tumor so it stops growing and maybe shrinks down to almost nothing ... shrinking down to nothing would be welcome too ... then I'll be one lucky and grateful fella.

Bill

______________________________________________
70 years in this body I've only just recently
properly appreciated -- better late than never!
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
10/13/14 5.7

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 (9/12/2014, Johns Hopkins) on 7/28/2014 biopsy.
6 cores Gleason 6 (3+3),
A. prostatic adenocarcinoma, 90%, 80%
B. prostatic adenocarcinoma, 90%, 90% ("perineural invasion identified in this case")
C. prostatic adenocarcinoma, 90%, 90%
Posted 10/19/2014 2:29 PM (GMT 0)
Bill,

From my own experience - it seems that a lot of the imaging technologies are ok down to a specific size threshold (at which point they fail to detect lesions/tumors/whatever).

In my case, I actually had an MRI w/contrast done before the biopsy.  All that showed up was a very tiny lesion (smaller than a BB).  Beyond that, absolutely nothing.  A few weeks later, I went along w/my uro's recommendations and had that lesion targeted in a biopsy (undetectable on ultrasound), as well as a standard 12-core (since we were already there and I was having such an awesome time).  I was a bit stunned a week later when, not only did the targeted cores pop positive, half the shots from the 12-core also came back positive (i.e., 9 of 15 total cores taken were positive with 3+3).

The most common answer I've gotten from both docs and the veterans on this forum - esp. in the case of Gleason 6, MRIs and ultrasounds may not be able to detect lesions because the cancer cells are too small.  I've seen similar discussions regarding CT scans.

So - given that, I'm guessing that a lot of these imaging techniques will be sufficient down to a certain threshold... then (shy of doing an actual pathology on the organ post-RP), it's all educated guess-work (based on other tests and patient history) in determining the size/extent of tumor growth.

Posted 10/19/2014 5:30 PM (GMT 0)
Bill,

Tumor size was something I too wanted to know, but was never stated directly by a doctor. From my two CDUS scans and a confirming MRI I was able to get the dimensions of the lesion (17x10x6mm) and calculated the volume at about 1cc. As you too discovered, none of my doctors had any interest in the size of the tumor and didn't even know the number. For AS I believe the cutoff is 1.3cc for low volume vs high volume tumor.

I'm just speculating now but maybe with G6 there isn't always an index lesion that can be accurately measured. The BX might show lots of G6 but scattered within the prostate.

Post Edited (super max) : 10/19/2014 11:33:03 AM (GMT-6)

Posted 10/19/2014 7:26 PM (GMT 0)
Bill,

I am a firm believer in the benefits of the color doppler ultrasound (CDUS). It is faster and less expensive than an MRI, and can be done in the doctor's office. The results of the CDUS are highly dependent on the skill and experience of the doctor doing the scan, which might be why most doctors don't bother doing this type of scan. I think the biggest benefit for someone doing AS is not the readings of a single scan, but the comparison of successive scans done on the same equipment by the same doctor to see how the tumor(s) is (are) changing over time.

When I had my CDUS done, it was explained to me that the scan won't pick up the type of small low grade tumors that are not aggressive enough to worry about.

I know of 4 doctors that are big advocates of CDUS, and they all have a lot of experience doing them. They are: Fred Lee, Duke Bahn, Mark Scholtz and Richard Lam. You can Google "Fred Lee prostate ultrasound" to learn more.

I also remember seeing a formula somewhere to estimate tumor volume = L X H X W X 0.52. The multiplication by .52 is to adjust for the typical ovoid or crescent tumor shape with tapering towards the ends.
Posted 10/20/2014 2:26 PM (GMT 0)
Thanks, JB, for your research on cinammon. Easy enough to add it to the mix of foods I consume. Maybe not the "magic bullet" but won't hurt.

Hi, Fred117 -- re determining size of lesions/tumors/whatever . . .

"It's all educated guess-work (based on other tests and patient history) in determining the size of tumor growth."

Fascinating the different experiences and variety of comments which came in on this maybe oftentimes (?) overlooked important topic.

Hi super max -- re determining size of lesions/tumors . . .

"From my two CDUS [color doppler ultrasound] scans and confirming MRI I was able to get the dimensions of the lesion"

Now I know what I'm looking for . . . a doc who does CDUS scans. I've got a general assessment of my status/my options appointment next week at Johns Hopkins with a very well-known guy. JH is thankfully overloaded with lots of world-class urological talent. What's on the table is to get assessed by a team of specialists, with myself participating in a key multidisciplinary meeting. The guy I'm seeing I think is possibly The Guy -- the ultimate authority on Active Surveillance. My impression is He takes diet and lifestyle seriously. I'll see about getting a CDUS scan done there.

"None of my doctors had any interest in the size of the tumor and didn't even know the number."

I'm incredulous that this is so. Like a mechanic saying, "I only check the brakes, steering, suspension, tires. I don't have any interest in the engine." Excuse me?!

I used to look up to physicians. Now I'm disillusioned, and to keep it all fun and light, I'm considering a stand up routine that would include references about the robotic surgical equipment manufacturers give financial incentives to urological surgeons to push the use of their robotic hardware. How can extremely smart surgeons be so completely ignorant of the phrase "conflict of interest"?

"Maybe with G6 there isn't always an index lesion that can be accurately measured. The BX [biopsy] might show lots of G6 but scattered within the prostate."

Another question I'll ask at my JH appointment. My old urologist made much of the fact he felt, tactilely, palpably, during three DREs (April, June, July '14) a nodule (another word for a tumor?). Which he stated made me ineligible for Active Surveillance. Another question for my Johns Hopkins appointment next week.

Hi Hawaii-Guy, re determining size of lesions/tumors . . .

"I think the biggest benefit for someone doing AS is not the readings of a single scan, but the comparison of successive scans done on the same equipment by the same doctor to see how the tumor(s) is (are) changing over time."

Exactly my thinking!

". . . seeing a formula somewhere to estimate tumor volume = length x height x width x 0.52. The multiplication by .52 is to adjust for the typical ovoid or crescent tumor shape with tapering towards the ends."

The guys reading and posting on the Prostate Cancer section of the Healing Well website are the smartest, best informed, around, IMHO [in my humble opinion]. Practical, useful PC info. :-)

Happy Monday!

Bill

______________________________________________
70 years in this body I've only just recently
properly appreciated -- better late than never!
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
10/13/14 5.7

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 (9/12/2014, Johns Hopkins) on 7/28/2014 biopsy.
6 cores Gleason 6 (3+3),
A. prostatic adenocarcinoma, 90%, 80%
B. prostatic adenocarcinoma, 90%, 90% ("perineural invasion identified in this case")
C. prostatic adenocarcinoma, 90%, 90%

Post Edited (Bill Positive) : 10/20/2014 8:31:58 AM (GMT-6)

Posted 10/21/2014 2:35 PM (GMT 0)
Hi -- My moods change so often. And with every mood change, my thinking changes. This moment I'm feeling a little nervous. Is nervous a mood? Maybe not, but fear is. I'll own I'm feeling real fear this moment. (Although that's silly because I'm this instant sitting at my laptop on a desk in my toasty warm comfy bedroom. So I've no reason to feel fearful.)

I'm feeling fearful because my mind is taking me (I'm allowing it) to the future. So I'm worried about something which Might happen in the future. Hoq silly! I always tell myself, "Don't worry about the future, be here now!!"

Yet the other side of the Fear coin is Excitement. Fear is "No." Excitement is "Yes!" It's the same energy. Yes or No to it?

It feels like I'm coming up to big decision, whether to go for having my prostate out, and if I decide for that, likely having Dr. Ballentine Carter perform it. open surgery, no robotic surgery. Read over Dr. Carter's bio closely (link below) to understand why I'll choose open surgery and not robotic-assisted surgery (if I go for having my prostate removed). This would effectively mean the end of my extreme diet as a way to avoid ever having prostate surgery. I'll continue the diet as long as I live, but I'd be giving up on diet to avoid Prostate Surgery. What's changing my mind? The palpable fact I've got a tumor in my prostate of unknown dimensions. And the biopsy revealed 5 cores cancerous at 90% volume, and 1 core cancerous at 80% volume. I fear my original urologist was right, "That's a lot of cancer. Given the high volume of cancer in one side of your prostate, it needs to come out, quick." I'm seeing Dr. Carter next week for a second opinion about that advice.

Dr. H. Ballentine Carter is I gather, according to Amazon's blurb about his book, The Whole Life Prostate Book," "Dr. H. Ballentine Carter is the preeminent expert in the diagnosis and management of prostate disease . . . ". Here is a link to Dr. Carter's bio on John Hopkins' website,

http://urology.jhu.edu/ballentinecarter
http://urology.jhu.edu/ballentinecarter


Dr. Carter is, I believe, the guy credited with inventing what is now known as Active Surveillance. If he tells me AS is not for me and I need to have open prostate surgery, performed by him (he's done it 3,500 times, so that answers the experience question), I'm this moment inclined to say "Okay." No wonder I'm feeling some trepidation, and a little excitement too.

I recommend you spend some time on Dr. Carter's bio page. Some astonishing information every man following the Prostate Cancer discussion forum on HW will be interested in -- Dr. Carter's bio page is a real stunner, a real game changer. Changed my way of thinking about a lot of things. To me, it all just has the unmistakable ring of truth to it, what he says.

Posting here has the real benefit of calming me down and cheering me up. Probably something to do with sharing. When I share, my mood goes up! Sharing is good.

Have a good day everybody,
Bill Positive

______________________________________________
70 years in this body I've only just recently
properly appreciated -- better late than never!
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
10/13/14 5.7

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 (9/12/2014, Johns Hopkins) on 7/28/2014 biopsy.
6 cores Gleason 6 (3+3),
A. prostatic adenocarcinoma, 90%, 80%
B. prostatic adenocarcinoma, 90%, 90% ("perineural invasion identified in this case")
C. prostatic adenocarcinoma, 90%, 90%

http://urology.jhu.edu/ballentinecarter
[url]
Posted 10/22/2014 6:47 AM (GMT 0)
Hi Bill,

A couple of things. First off, doctors are human, just like us (but maybe smarter). They have temperaments, biases, pre-conceptions, strengths and weaknesses, virtues and vices, sometimes they do brilliant things,sometimes they make mistakes. So I can't be too hard on them, but I don't believe everything they tell me, either. I take what they say under consideration, then make up my own mind. Most of all, I think they are doing their best, but they come from an extremely orthodox school of thought, and are fairly narrow-minded about anything unorthodox by those standards. For good reason, since if they prescribe or recommend any unorthodox course of treatment (such as diet), as an alternative to the mainstream approach, the could lose their license and/or get sued for malpractice.

Consequently, when you make a decision to follow an alternative course, you are pretty much out there on your own. Out in the wilds, so to speak, and there are a lot of predators out there making big bucks selling false hope. All of which makes it pretty darn hard to be a maverick, going your own way, in these matters. Sticking with the herd has always been seen as the safe bet, for good reason.

In my youth, I was a musician, a rock and roller. Yeah , sex, drugs, and rock and roll, it was great. lol But then you wake up one day, you're broke, hungover, the band broke up (after incessant arguing, which is typical, musicians have big egos), your GF just told you she is pregnant, and leaving you if you don't get a real job ASAP. You've come to a watershed in life, and have to decide which way to move forward, and there is no avoiding that decision any longer. I read somewhere that an artist, be he musician, writer, painter or whatever, is generally someone who ultimately pursues that course, chooses to stay that course, come hell or high water, regardless of the consequences, does it because they have no choice. They can't stop playing music, or writing. It seems crazy to continue, as it's easier to have a normal life. But there is something inside them that compels them to continue, which is the certainty that they'd go crazy, if they gave it up. So they must continue. I got a job selling real estate. lol

What is the point of that digression? Fear is the point. This ****ing dilemma which we all share here, which bonds us, is the ultimate in scariness. How can you not be afraid when you know that death is stalking you? There are times when I put it out of my mind, thinking nothing but positive thoughts. But the not knowing, not having any way to gauge, from day to day, week to week, whether you are getting better or worse, putting distance between you and the grim reaper, or whether he is gaining on you, it wears on you, sometimes makes you moody.

Therefore, to rely on your own layman instincts, to not follow the path that all the experts are telling you to take, telling you "go that way, that is how you escape Mr. G. Reaper," to ignore the voices of authority, is crazy. And the only reason not to go the way you're told , but instead, to take off into the wilds, in an unknown direction, is that something inside you says, "no, I can't do that", because if I don't follow the inner voice, the gut instinct, which is the sole source of my strength, then I am lost, for sure.

It's not rational. Some things in life aren't. It does not banish the fear.

Bottom line. You gotta do what you gotta do, whether that is surgery or something else. You have to roll the dice, you have to place your bet. And live (or die) with the outcome. Vegas has surgery as the odds-on favorite. Some guys like to play the longshots.

Does that make any sense?

JB


P.S. I concur that the practice of doctors getting big payments for prescribing certain costly drugs, or recommending certain procedures is a bit bothering.

Post Edited (Jaybee_007) : 10/22/2014 1:01:37 AM (GMT-6)

Posted 10/23/2014 2:45 PM (GMT 0)
JB -- crazy busy, working 6am-11pm last few days, next few days. Will digest what you wrote and respond soon, my good friend.

In advance of my meeting next week with Ballentine Carter, M.D., distinguished prostate authority at Johns Hopkins, and maybe the best authority on Active Surveillance in America (?), I asked my urologist folks this morning if I could get a copy of the color Doppler ultrasound done at the time of my biopsy (late July) and could I get a new color Doppler ultrasound procedure the next few days, and take both results/images with me to my JH appointment.

The response was . . . it's not needed, it's not relevant, in a word, no.

I'm no medical professional, not even close, but I don't comprehend how the ultrasound results from the time of the biopsy, which could be compared with a new ultrasound, in determining the size of my prostate tumor, then and now, before I started my strict No Meat, No Dairy, No Eggs, No Fruit, etc. diet, and then 3 months later, now, could not be highly relevant to my progress in moving towards some sort of decision by me about what to do . . . stick with my strong diet and get a RP or radiation? or stick with my strong effort with diet and NOT get a RP (open or robotic) or radiation?

I mean, isn't the SIZE of my tumor relevant or of interest to any of my physicians? One exception to that. But for the others, doesn't seem to be any interest. Feels so odd to me. Nobody but me is interested in the size of my tumor? I don't get it.

Well, I'm looking forward to seeing Dr. Carter next week. I'm excited about "moving the ball downfield." I bought Patrick Walsh's thick thick book on Prostate Cancer and am working my way through reading it, a bit more every day.

Walsh emphasizes that methods -- diet and otherwise -- that are important in preventing getting PC, can, he strongly suggests, not be of a lot of benefit once actual, palpable PC has made an appearance (a tumor exists). As he eloquently and cutely puts it, "You cannot un-ring the bell." I beg to differ. I feel a positive attitude and a strict healthy diet, meditation, exercise, rest, sex, acupuncture, etc., maybe can "un-ring" the bell.

But other passages in the chapter I'm reading now, Options, he repeatedly says ... there's not sufficient studies to know for sure ... we only have annectdotal evidence that ... and other comments stressing the evidence is thin so far that dietary measures after PC diagnosis can influence cancer progression -- it's growing, it's shrinking, it's staying the same? But he doesn't categorically rule it out. He just leaves it at . . . we don't know.

about myself, and everybody is different, I just know for myself, I can feel it inside, that my energy just 100% collapses, I feel like I'm giving up, like I'm already (almost) dead, when I think about throwing in the towel on diet, and opting for RP or radiation or chemo or hormones. I feel maybe the reason the jury is out on Diet as a legitimate treatment for stopping the growth, maybe even curing prostate cancer, is that so few people are trying alternative methods such as Diet. "Me, I'm sticking with Diet." Maybe my last words standing on the deck when my "ship" goes down. Maybe not!

Gotta run,
Bill
Posted 10/23/2014 3:44 PM (GMT 0)
Bill,

Are you sure that it was a color doppler US done at time of your biopsy? Most urologists use a more primitive ultrasound for biopsies that helps them locate the prostate, but doesn't provide tumor information. If your biopsy was 12 core, I doubt that the urologist was using CDUS equipment.
Posted 10/24/2014 2:13 AM (GMT 0)
Hi Hawaii-Guy,

"Are you sure that it was a color doppler US done at time of your biopsy? Most urologists use a more primitive ultrasound for biopsies that helps them locate the prostate, but doesn't provide tumor information. If your biopsy was 12 core, I doubt that the urologist was using CDUS equipment."

No, I'm not sure that it was a color doppler US done at the time of my biopsy. Don't know. My second opinion doctor -- a medical oncologist -- said in response to my asking him about finding out the size of my tumor, he said they would have done one at the biopsy, and I should ask them today to do another one, and then I could compare one to the other (or, rather, my doctors could, and give me the resulting analysis). That was the idea anyway. But my two urologists expressed zero interest in helping me with this.

My biopsy was 19 core. According to Hopkins' Jonathan Epstein's Second Second Opinion, I sought and obtained, six cores were positive (A. 90% 80%, Gleason 6 (3+3) B. 90% 90%, Gleason 6 (3+3) C. 90% 90%, Gleason 6 (3+3). The other 13 were benign.

Something I hadn't noticed before on the original biopsy diagnosis. "A. Left Apex: Tumor measures 9 mm in length; B. Left Mid: Tumor measures 10 and 11 mm in length; C. Left Base: Tumor measures 10 and 12 mm in length.

So that's something I wasn't aware of. I'd be interested from a new Ultra Sound I want to get whether my tumor has changed it's dimension since I've been on a super-strict diet the past 80-90 days. Maybe even modest change takes half a year or a year to influence the size of a tumor, positively (shrink it) or negatively (it grows bigger), or it stays the same. If it shrinks or stays the same over 6-12 months I'm inclined not to initiate drastic action (surgery or radiation).

As one of my two urologists said a week or two ago. The presence of a palpable tumor discovered on the DRE in April, June, and July 2014, is the "fly in the ointment" of my plan to pursue an AS-like treatment program. I'll see what a primary inventor of AS, Hopkins' Dr. Ballentine Carter, has to say about that next week.

Bill
Posted 10/24/2014 1:54 PM (GMT 0)
Does anybody know what the literature says about high (10 grams/day) daily doses orally of Vit. C (Ascorbic Acid) should be part of anyone fighting prostate cancer's toolkit?

I was just about to put 10 grams of Vit C in capsule form (1,000 mg capsules) down the hatch and it triggered something in my memory that said that garlic -- which I also eat a lot of daily -- is antagonistic or neutralizes any benefit from Vit. C. Anybody know anything re taking high doses of Vit C for PC, or about you cannot take Vit C together with garlic ... they neutralize each other?

Happy Friday!

Bill
Posted 10/24/2014 2:50 PM (GMT 0)
Bill Positive,

I don't have a direct reply to your question about Vit C, but two other things:

First, very glad to hear you are seeing Dr Carter. Great decision/choice!

Second, if you haven't already, please review this old HW thread which includes the supplementation that Dr Mark Scholz recommends in his book "Invasion of the Prostate Snatchers." Have you already read this book? It would frankly be a better, more up-to-date and targeted book for you than the Walsh book.
https://www.healingwell.com/community/default.aspx?f=35&m=2167080
Posted 10/26/2014 11:08 AM (GMT 0)
Morning !

Here's a link an alternative treatments oriented friend sent me yesterday that I've been enjoying. Dozens of natural approach physicians and PhD scientists and others, such as Patrick Quillin, Bob Wright, Burton Goldberg, Roby Mitchell, David Brownstein, and others appear in little video clips. The claimed deal is you can view all 11 of the videos today for free until midnight today (Sunday, 10/26) and then you've got to pay to view them. I found what I've seen so far pretty interesting stuff.

www.thetruthaboutcancer.com/live/replay.php

Here's what is sort of a table of contents to the 11 videos:
__________________________

Enjoy All 11 Episodes Free For The Next 48 Hours (available through midnight Sunday night)

Episode 1: Modern Medicine & The Cancer Pandemic

Episode 2: Your First Line Of Defense…

Episode 3: Eliminate These “Dirty Dozen” To Prevent Cancer

Episode 4: Your Secret Fountain of Youth

Episode 5: Nature’s Pharmacy

Episode 6: Clean Foods & The Cancer-Free Diet

Episode 7: Diagnostic “Do’s & Don’ts” – Proven Treatment Protocols Part 1

Episode 8: Proven Treatment Protocols Part 2

Episode 9: Proven Treatment Protocols Part 3

Episode 10: Doctor’s Orders

Episode 11: How to Survive and Thrive
- See more at: http://www.thetruthaboutcancer.com/live/replay.php#sthash.v365CoTx.dpuf
www.thetruthaboutcancer.com/live/replay.php#sthash.v365CoTx.dpuf

Happy Sunday !

Bill
Posted 10/26/2014 11:12 AM (GMT 0)
Hmmm, the links don't seem to work. Here's the group's "home" website, hope this works:

www.thetruthaboutcancer.com

Bill
Posted 10/28/2014 2:53 AM (GMT 0)
Hi Bill,

What you said here rings a bell for me: I just know for myself, I can feel it inside, that my energy just 100% collapses, I feel like I'm giving up, like I'm already (almost) dead, when I think about throwing in the towel on diet, and opting for RP or radiation or chemo or hormones.

Some might say we're in denial, and maybe they are right, but I can't change the way I feel about it.

As to this bit: I feel maybe the reason the jury is out on Diet as a legitimate treatment for stopping the growth, maybe even curing prostate cancer, is that so few people are trying alternative methods such as Diet. Doctors cannot say more than "don't know," if they are being honest about it, because it is really SO difficult to do double blind studies on this sort of thing. The variables in a person's diet are so many, thousands of them. And as long as there are not definitive studies showing results, no conventional doctor is going to touch that question with more than don't know or no proof it works.

You and I are both taking a dietary approach, but, chances are, what you eat and what I eat are quite different. And not just what we eat, but methods of cooking it, timing and number of meals, amount of each food consumed, how the various foods are combined. All of those things could make a difference, and are difficult to quantify and track.

Generally, studies will test ONE food, or one type of diet (vegan, paleo, low-carb, ketogenic and on and on) and many times they get positive results, but still falling far, far, short of a cure. Maybe combining certain foods that show promise would bring greater results. But with the time and money it takes, and the vast number of different possibilities...

Whoops! Accidentally hit the backspace button and lost the rest of this post. Oh, well, crap happens! smilewinkgrin

Until next time, stay Positive, Bill. :-)

Post Edited (Jaybee_007) : 10/27/2014 9:16:47 PM (GMT-6)

Posted 10/30/2014 12:04 AM (GMT 0)
Hi all,

Is there someone who has had either DeVinci robotic surgery or non-robotic-assisted open surgery be able to tell me how many weeks or days after being released from the hospital, the doc said the patient has to have the catheter in, and when the patient can go back to work?

I'm a little confused if the "going back to work" part is catheter-determined . . . the man cannot "wear" the catheter and also have a moderately physically demanding job? Or is it a vanity issue? The man can go back to vigorous daily exercise if he wishes despite having a catheter? Just it might look a little odd? Is it a tube that looks, looking at the pants or slacks from the outside, as Mae West famously said, "Are you packing a pistol, or are you just glad to see me?"

This morning I had a good introductory meeting/session/appointment with Dr. Ballentine Carter at Johns Hopkins. Nice guy, extremely smart, a bit of a famous guy I'm told. The main points discussed were:

(a) I've got low-grade Prostate Cancer (PC), #1 on a scale of 1 to 7. However, I've got a lot of it, so far, prostate contained.

(b) He doesn't pay any attention to any tests, pathology reports -- anything -- that isn't generated within Johns Hopkins. I liked his confidence and easy manner. This is someone who has performed 3,500 prostate procedures. A sterling reputation.

(c) He said a man might have the lowest grade of PC, and might not elect to have surgery, radiation, etc., but if that's what he wants to do, if that's his choice, and not getting a major standard treatment regimen is a choice, then that's fine . . . provided the man recognizes that there is plenty of evidence in men with low-grade cancer, that eventually, in some unknown number of months or years (he mentioned 10 years, stuck in my head), the cancer may suddenly turn virulent and aggressive [I'm summarizing as best I remember, not his exact words, but definitely the gist of it], and then, once the cancer is outside the prostate gland, it can cause all manner of trouble, up to and including the man's situation being he's got uncurable/incurable cancer.

(d) So, Watchful Waiting or Active Surveillance is good, it monitors the man's cancer -- biopsy once a year, PSA test, Digital Rectal Exam (DRE) I forget the frequency -- I got a DRE this morning -- giving urine and blood, other stuff -- but things can change, and the big point to keep in mind is the man is, using the phrase I used, which he thought accurate ... with Active Surveilance (AS), a man is "rolling the dice."

(e) Now, I've got a palpable tumor. I don't have a conspicuously high PSA, 5.7 the last one, or something showing on an MRI. His colleague, Jonathan Epstein, read my slides for a Third Opinion. He liked that. I think, technically, on account of the amount of cancer I've got (90% in 5 of 6 biopsy cores) PLUS a palpable tumor, and his picking up on my extreme reticence to opt for a conventional treatment method (surgery, radiation), he didn't say outright he thought I should stop screwing around [my choice of words] and get on with it (surgery, radiation, etc.), and I left the meeting convinced that's what he would recommend to me if I was open to hearing it, and open to following his advice.

I loved his approach. Lay out the facts. No scare tactics. No overstating the case. Low key. Just the facts. My feeling is the facts are going to end up being so compelling -- after the new MRI in December, and after he's got the results back with the genetic testing -- that he is going to persuade me over the coming months, using logic and the facts, so I end up maybe in January saying, "OK, let's schedule the surgery." But I'm not quite there yet.

(f) I got a strong feeling he thinks I'm a strong candidate for a strong conventional treatment pretty soon, "before the window closes" [my words] on possibly getting ALL of the cancer by taking out my prostate, before it eventually grows and eventually spreads.

(g) I think he has a reputation for looking at the big picture, being open to dietary measures, accepting that what we eat is a major factor in our health, but he did say, no matter what I ate, no matter how good my dietary program was, it would NEVER completely get rid of all of the cancer. He said it might slow down the progression, it might even reduce the amount of cancer, even possibly by a lot, but it won't ever [in his opinion. Bill] get rid of ALL of it.

(h) It comes down to how much risk, how much the rolling of the dice, how much care and worrying, a man thinks he can take.

(i) He handed me the Active Surveillance program paperwork and asked me to fill it out and submit it. As part of what he wants to know pretty quick, he said he would have his staff get the "block of tissue" that the biopsy got -- not the slides, he didn't want the slides ... he said, "they are of no use, it's been dyed and stained." He wants the unstained tissue, and he plans to get genetic testing done on the block of tissue from my late July biopsy.

(j) His staff scheduled me for an MRI of my prostate in early December. I've got the MRI that a local hospital did in mid-August. I don't think he even looked at it. Again, it was that thing about he only will use tests and such that John's Hopkins' medical professionals themselves generate. I was impressed. And not surprised. I think Johns Hopkins is considered the #1 hospital and medical school in the nation. So I'm okay with a little bit of pride and confidence showing. I like that in my new doctor!!

(k) The whole building, at least the parts I saw, has a vibe of a Hyatt Regency -- wood, dark colors, plants. Lots of open space, not nearly so many walls as you would expect. A nice warm and fuzzy atmosphere. Everyone friendly and extremely competent.

(l) My sense is a very, very experienced clinician and professor of urology and oncology at JH's Medical School, instead of putting pressure on me to get the surgery/radiation whatever, is willing to work with me, within the Active Surveillance framework, and he promised, "I'll let you know if at some point I feel . . . we're going down the wrong road here." In other words, I might need to take some stronger measures than a strict diet (no fruit, no meat, no dairy, no eggs, lots of veggies, some beans, tummeric, capsicum/red pepper, mediation, exercise, etc. etc. is capable of delivering.

Since he accepts diet is important and plays a role -- I'm pretty sure not quite as important a role as I give diet -- he wrote on the back of his card he gave me, the title of his book, "The Whole Life Prostate Book." Anybody read it?

That's what I did today. I'm fortunate to live close enough to Baltimore to make use of what Johns Hopkins can offer. Forty-five minute drive.

Happy Wednesday!

Bill

______________________________________________
70 years in this body I've only just recently
properly appreciated -- better late than never!
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
10/13/14 5.7

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 (9/12/2014, Johns Hopkins) on 7/28/2014 biopsy.
6 cores Gleason 6 (3+3),
A. prostatic adenocarcinoma, 90%, 80%
B. prostatic adenocarcinoma, 90%, 90% ("perineural invasion identified in this case")
C. prostatic adenocarcinoma, 90%, 90%
Posted 10/30/2014 2:42 AM (GMT 0)
Hi Bill,

It sounds as if you have a urologist with a very similar personality to the one I have. It also sounds as though you are going through a similar analysis. My guy also isn't putting pressure on me and will support me if I continue with the AS - but he does state that he thinks at my age that I should do something. I take what he says more seriously because he is such a strong supporter of AS when it is warranted and was one of the few urologists willing to support my initial decision. I'm balancing having perhaps some ED problems against the cancer spreading - trying to look at it analytically and leaving emotions and fear at the door. Not always easy but I think I'm pretty good at it.

I have until February - one more PSA test before my next appointment in January to book surgery. I'm hoping for a miracle recovery before then with that PSA test showing solid zeros - No wonder I call myself "Dreamerboy". :-)

Anyway best of luck to you regardless of your decision.
Posted 11/1/2014 5:53 AM (GMT 0)
I've tried so hard
And got so far
But in the end
It doesn't even matter

Just heard that song on the radio, and it seemed so appropriate. Rough day for me. Got test results, PSA was up substantially. ****! I was feeling so confident, so sure I would see improvement. What a kick in the ass!

I've been thru a lot in my life. Born with a near-fatal lung condition, frail as a child, homeless as a young man, bad car accident in my 20's, stomach ulcers in my 30s, divorce and ruptured discs in my back in my 40s, very ill with weird bacterial infection the MDs could not eradicate when I was 50, GERD a few years later. But I always saw it through the dark days, and somehow always ended up back on top again. I was a survivor, tough, and life seemed better than ever this year, when PCa hit me, seemingly out of the blue.

So I've been a little low today. That dead-man walking feeling. Twice I felt like crying. But I can't do that, I'm a tough guy. lol

Then I felt angry at nobody in particular. That feeling passed, I'm feeling more level-headed now. The anger is being transformed to determination. But can all the determination in the world make a difference?

So it is back to the drawing board. Didn't buy any more yogurt! lol I had a dramatic drop in PSA two months ago, but I was almost starving myself then, and lost an awful lot of weight. So I added the yogurt, which seemed great, as I love yogurt, especially with blueberries or raspberries. I bought some cage-free organic, high Omega-3 brown eggs today, need something to bridge the gap, until I figure out what else I can eat. lol I'll have a nice breakfast, anyway!

This is the really hard, maybe impossible thing about a dietary approach, that there are so many different factors that comprise a person's complete diet, including how the food is grown, harvested, transported, stored, cooked, how fresh it is, even what kind of seeds they used. Only 2 months since my last PSA, but what was I doing right then, that changed? Yogurt? Hard to say.

I was just now reading something, however, which, while it railed about how terrible cow milk products are for cancer, said that sheep or goat's milk is not only OK, but good. Hm-m-m, my friend's dad who was sent home to die with incurable brain cancer 15 years ago, just happened to then move to a farm, where his wife started raising goats and selling goat's milk. Coincidence?

Well, that's enough for now. I just had to vent a little, get that frustration off my chest and out of me. I feel better now! lol

Thanks for "listening," guys!

Jaybee_007


P.S. Happy Halloween! :-)

Post Edited (Jaybee_007) : 10/31/2014 11:59:32 PM (GMT-6)

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