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

Bill,

I've just read the entire thread here. In the five years since I was advised that I probably had PCa, I've been plowing through many, many websites and forums. This thread has been the most interesting and informative, as you shared such details and thoughts of your journey as the lab tests and intrepretations changed. We are the same age, and I am still on the "near side". But, this thread is very, very helpful to anyone considering their options as the diagnostic process plays out.

I'm glad that you came to a decision and resolution, and wish that you enjoy a full recovery and cancer-free future.

Hi ASAdvocate,

Sometimes I think my contributions have some merit, particularly my wanting to be as honest and transparent about every aspect of my process, i.e., how I'm feeling especially . . . happy, feel great, dejected and depressed, elated, expansive. My emotional life always a bit of a roller coaster. Staying on an upbeat even keel always a challenge for me. Sometimes I feel my posts are too long, perhaps because I'm an (unpaid) non-professional writer; I love to write. Best advice I ever got about that was always write assuming the readers' time is very, very valuable, and make sure what I write takes no more than 90 seconds to read, max. Well I'm DOA if that's the rule!! But I'll start fresh today.

Hi Island Time,

Thanks for your kind words. Appreciate the support. Glad your Active Surveilance is going well. I stuck with it as long as I possibly could, then faced reality I needed to make a decision, and I made it: surgery (despite the fact the MRI (3T) report in Dec was junk and flat mistaken ["non-organ confined disease ... extracapsular invasion is present on left"] that I based my decision on). Not making this up. Thankfully the Radical Retropublic Prostectomy (RRP) was a success, my PC was capsule contained, and all I have to deal with now is a fading bit of Incontinence and the "happier" problem of ED. A new 2-1/2 months since the RRP PSA test result is due tomorrow. Got my fingers crossed about that.

All the best,
Bill Positive

________________
[Sig Block revised 3-25-15]

age 70
diagnosed 8-8-14

RRP 1-12-15, Johns Hopkins.
Prostate cancer was all capsule contained
per final pathology report, 1-14-2015, and
contrary to the analysis of a 12/5/14
Johns Hopkins MRI (Tesla 3) which
announced, "Large volume, non-organ
confined disease with extraprostatic
disease present. Extracapsular invasion
is present on left." I guess anybody
is entitled to make a (rather large)
mistake. The author of the screwy
MRI analysis was a radiology resident.
However, the MRI Clinical Director who
is a Professor of Radiology at Johns
Hopkins reviewed the images and
interpretation and signed off on the
analysis by the radiology resident.
What are the odds of that?!

I thank my lucky stars the reality is
my PC was capsule contained. New
PSA score tomorrow, almost 2-1/2
months post surgery. Hope it's good
news!

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

Pathology Report (9/12/2014, Johns Hopkins,
Jonathan Epstein) on 7/28/2014 biopsy slides.
6 cores Gleason 6 (3+3),
A. prostatic adenocarcinoma, 90%, 80%
B. prostatic adenocarcinoma, 90%, 90% ("perineural
invasion identified in this case") [Interesting the final
pathology report below found no actual "invasion"
beyond the prostate capsule, very glad of that!]
C. prostatic adenocarcinoma, 90%, 90%

1-12-15 RRP at Johns Hopkins
1-14-15 Final JHH Surgical Pathology Report
Interpretation & Diagnosis
1) pelvic nodes, left (excision); three lymph nodes and
associated fibroadipose tissue, negative for tumor
2) anterior fat pad (excision), negative for tumor
3) prostate and SV (prostatectomy): histologic type:
adenocarcinoma (conventional, NOS)

Gleason score - dominant nodule: 3+4 = 7
Tumor extent: moderate
location: (dominant nodule): left, posterolateral, apex, mid
location: (secondary nodule): [none noted]
Local extent: organ confined
Margins: negative
Seminal vesicle invasion: none
Lymphatic invasion: absent

Pelvic lymph nodes (includes all parts):
all 3 lymph nodes are negative for tumor

Extent of invasion (7th Edition, AJCC, Staging):
Primary tumor: pT2: organ confined throughout

Summary margins: negative

A representative tumor block is 3-LBP
A representative normal block is 3-LDA

Note: Pending KRAFT of 3RBA

[signed by JH pathologist 01-15-2015]

Hi --

Maybe it's time for this thread to ride off into the sunset, or maybe not.

Over the many months since I began this thread (early September 2014) this thread discussed Active Surveillance, can diet and exercise and supplements prevent getting? or cure having? prostate cancer. Many many people have contributed here.

My own evolution has gone from being adamant about never having surgery or radiation (or hormones), which landed me in the Active Surveillance category, to eventually having Radical Retropublic Prostectomy this past January, and thence onwards to some serious incontinence for 2-3 months (thankfully almost all gone now), and, Erectile Dysfunction, more politely called "ED" (overcome with the expensive assistance of Ciallis), and a recent/current bit of urinary urgency. The urinary urgency resurfacing has prompted a couple of new threads, the most recent being "No Prostate But Old Pre-op Urinary Urgency is Back, Seems Weird to Me."

The next-to-last post by me on that "No Prostate But ...." thread is quoted immediately below. Pratoman posted a short response which can be found over there.

It's interesting how the discussions on the PC Forum about topics of keen interest to all -- diet, exercise, supplements, various testing modalities (PSA's, MRIs, etc.) tend to run in cycles. Maybe 100-150 consecutive posts discuss topics A, B, C, D, and E in depth, only to then yield to a new set of 100-150 consecutive posts that discuss topics A, B, . . . . Yes, there's some repetition going on, but nothing wrong with that. It's also true that "John" can say something and I don't get it, but when Larry says essentially the same thing, I suddenly get it, grok it, I understand it, and it goes in. So everything is proceeding nicely!

I do have great affection for this thread. It's been sort of a lodestone or safe house for me, where I can say whatever I want to say, be scared, frightened, confused, up, down, every emotional state there is, and it's okay. Sharing about whatever is useful and relevant and healthy. There is something very reassuring about saying "I pissed in my pants" publicly (if such happened to you, I know it has happened to me ... hmmm, last week to be precise), which is the antidote to shame, embarrassment, humiliation, etc. Hey, it's just our cultural conditioning, but that cultural conditioning can be very powerful indeed. Oh, as an aside, the times my urinary urgency has been acting up, as I've tested whether I can eat citrus in even small quantities and not irritate my bladder (answer is Nope!), I make it a point to wear black or dark blue slacks. Makes the fact I just pissed in my pants almost unnoticeable.

Where was I? Oh yes, here's a copy of my post from the other thread. And thanks, as always, to Pratoman's valuable and level-headed posts, with special appreciation for his wit and humor. He's a good friend to me here on HW's Prostate Cancer forum.

_______________________

"Oftentimes it seems to me there's a really good thread about some topic of interest to all -- maybe diet or exercise or supplements, or to a lesser extent something like incontinence in general, or a subsidiary topic like urinary urgency, which this thread was initially about. I'm noticing how the thread I began about urinary urgency quickly (and properly) shifted over to a discussion of diet, stayed on that topic for awhile -- what foods are known to aggravate a sensitive bladder? -- or could it be a UTI? -- and then the discussion took a turn towards comedy and humor, where it sort of wound down.

I'm grateful to Tall Allen for his thought-provoking post and subsequent good discussion on "lycopene, selenium, and green tea catechins -- safety concerns" and to cashlessclay for his post on "Diet, exercise and PC progression." Another great discussion.

There seems to be a consensus (maybe) that exercise and diet really do make a difference, and I resonate especially too with comments about it is my DNA and RNA -- genes and chromosones -- which may ultimately be found to be what turns on my PC and maybe there are other genes which turn it off. I find the scientific talk often hard to follow and digest. What I enjoy most here is the sweet sense of humor which permeates the Prostate Cancer forum. Our eventual physical demise is certain, yet for the present we virtually are having a beer together (or a glass of spring water) and enjoying ourselves, and are quick to laugh. There is great merriment to be found here. The wit and laugh out loud humor here is, I'm convinced, essential to keep things in balance.

Unless I'm missing the point entirely and Pratoman was being completely serious, I cracked up on reading his comment in the previous post, "Celibacy is clearly the answer to all of life's problems, I'm convinced of it." My own short answer to all of life's problems -- certainly in my 20s, 30s, 40s, 50s, and 60s (pre-cancer diagnosis decades all) -- was, "Frequent intercourse is clearly the answer to all of life's problems, I'm convinced of it."

The jury is out so far for me on what, now that I've begun my 70s, is clearly the answer to all of life's problems. Sex seems somehow less important in the grand scheme of things to me now. As to the practicals, "Willy" seems to require the (expensive) contributions of the pharmaceutical industry (Ciallis) to overcome the ED side effect of this past January's Radical Retropublic Prostectomy. I feel I now see women more clearly, without often looking through the distorting lens of desire. Funny how relevant certain chemicals can be!

These days I see a gradual slight downhill physical and mental .... slide. Don't see running a marathon in my future. There are some aches and pains I didn't notice before. Vision seems a tad off. Time to go see the eye doc. Some slight forgetfulness is happening. Holy crap, these youngsters are holding the door for me now! What's that about?! By focusing on what I most love doing -- photographing dogs -- it brings my energy up, they make me laugh, they keep me engaged and not taking things too seriously. What's the answer to all of life's problems? Spend more time with dogs! Who rescued who?

Cancer, schmantzer, life is a mystery to be enjoyed, not a problem to be solved. Give everything it's proper due, do the intelligent things that can be done to deal with prostate cancer, but don't let prostate cancer become the central subject or focus of my life. Prostate Out, Dogs and Laughter In.

Bill Positive

Post Edited (Bill Positive) : 4/29/2015 8:53:37 AM (GMT-6)"

______________________________

Happy Thursday,

Bill Positive

Summer is here, and I'm not ready for it. But nice and windy this evening. No rain, just high winds in the treetops. Heavenly!

Here's what's new. I've been mildly irritated it appears that neither Medicare nor my supplemental insurer, UnitedHealthcare Insurance Company, will pay for Cialis. There's conflicting info about that from my Google internet search tonite. The majority of posts seem to say forget about getting Medicare to pay for Cialis or Viagra or anything at all that some insurers (or politicians) might view as the self-indulgent excesses of ... ? Okay, not going there.

Here's the text of an email I sent tonite to the National Manager (if such exists, just a guess) of Customer Service at CVS, corporate HQ in Rhode Island. I want to get a 3 month supply of Cialis 20 mg from CVS, and I want Medicare, my primary insurer, and UnitedHealthcare Insurance Company, my supplemental, to pay for it.

And I'm not holding my breadth. I think the government doesn't want to be accused of encouraging older guys like myself and others to be enjoying ourselves too much. Penile implants and such. The stuff of newspaper headlines. But isn't talking about Cialis like talking about Coca Cola or some new pizza or new automobile model? In terms of zero shock value? Didn't Eli Lilly and its Cialis brand create those unavoidable commercials which sprout especially I think during golf tournaments . . . "when the time is right." I hate being part of a pharmaceutical company's targeted audience demographic!

Despite the subject of sex going mainstream decades ago, still, I sincerely believe Cialis -- and all it stands for (I've heard it's known by the word, "weekender," in Europe) -- is a subject which Medicare wants to avoid.

It's like how my parent's generation was afraid of Keith Richards and Rock "N Roll . . . lock up our daughters! Still, somehow, 30-40 years later, isn't there still a puritan strain in the nation that feels, "I don't want Medicare using my tax dollars to furnish Mr. Bill with little pills to reverse the symptoms of his ED." Hey, just because I've had my cancerous prostate out doesn't make me a second class citizen. Antidote to that is simply to decide not to feel that way, and not to think that way. Incidentally, my book recommendation, a great read -- and what a surprise he's such a brilliant and sensitive and serious musician, and tolerant and loving guy -- Keith Richards' autobiography, "Life."

I'm confident I'll get a response from CVS promptly. Here's my email to a CVS customer service email address I tracked down in a corner of CVS's website:
_______________

[TO: National Manager, CVS Customer Service]

"Hello -- I initially thought I'd walk the short block to my local CVS Pharmacy (_______ Maryland) and ask the pharmacist there my question about Cialis payers/insurers. There is conflicting information on the internet about whether Cialis is covered or is not covered by Medicare/United for a man who experiences erectile dysfunction as a side effect of having his cancerous prostate removed.

My expectation is you can provide me with a definitive answer that I can trust is accurate. Thanks!

In coming days I intend to ask my nationally prominent physician/urologist/surgeon at Johns Hopkins School of Medicine to prescribe Cialis 20 mg. for me (three month supply) to treat my erectile dysfunction (ED). ED is a serious, widespread, and treatable side effect of the surgery that removed my cancerous prostate (January 2015, Johns Hopkins Hospital).

My understanding is my Johns Hopkins' surgeon is the academic/scientific/medical world person credited with inventing "Active Surveillance" as an alternative (for suitable candidates) to making any immediate decision for or against surgery, radiation, or hormone treatment. He yesterday offered to write a letter to the "payer" explaining his reasons why I should be taking Cialis.

This is not a religious, political or lifestyle issue; it's a vitally important medical issue best left in the hands of an internationally prominent American surgeon at the most famous hospital and medical school in the nation -- Johns Hopkins -- and his patient, yours truly.

The payers/insurers are Medicare (80%) and the AARP Medicare Supplement Plans issued by UnitedHealthcare Insurance Company.

My sexual function continues to be seriously impaired (hence "erectile dysfunction") by virtue of my recently in mid-January having my cancerous prostate removed. Official medical term for the surgery is Radical Retropublic Prostatectomy. It's major surgery for any man. My surgeon has performed this complicated and delicate procedure over 3,500 times. Notwithstanding his brilliance, I left the hospital with Incontinence (almost gone) and the ED (very much still present), two devastating side effects.

All I want is to be restored to a normal healthy life. Cialis would help a great deal. Seems reasonable to me my two well known insurers should pay for it. Cannot imagine under what scenario or for what reasons they wouldn't.

First step is I'll ask my surgeon to fax a prescription to CVS Pharmacy #________, Maryland, for a three month supply of Cialis 20 mg for me. I'll ask CVS to send the bill to Medicare and UnitedHealthCare Insurance Company for them to pay. This is to ask your assistance in how I should proceed.

It wouldn't surprise me if this is viewed as a nationally significant question ... and nationally significant answer.

In your opinion, should I ask my surgeon to mail his letter to someone at Medicare (who? name, address, department?) , and someone at UnitedHealthcare Insurance Company (who? name, address, department?) . Copy to you?

Many thanks for your prompt response. A return email would be great.

All the best,

[END text of email to CVS]
____________________

Happy Wednesday!

Bill Positive

I agree with your thoughts Bill. No reason Ciialis shouldn't be covered after RALP like Recconstruction is mandatory coverage after mastectomy

Hi Pratoman, Hi compilier --

Pratoman, thanks re "no reason Cialis shouldn't be covered after RALP like Reconstruction is mandatory after Mastectomy."

Sadly -- although nothing surprises me any more -- the absence of any good scientific or medical reason for Medicare to refuse to pay for ED treatment medically necessary drugs does not prevent Medicare from doing precisely that.

Medicare thinks it's got a clever argument by branding anyone with ED who wants a steady supply of Cialis, and who is otherwise covered by Medicare, as likely older gents who are making a "lifestyle" decision, not following their doctor's medical advice, in obtaining Cialis. I don't doubt there are men with perfecting functioning erectile function who want the extra added bonus of a hard erection being available 2-3 days (European's slyly call Cialis a "weekender"), but I'm not one of them. The relevant facts about me are I've got prostate surgery caused ED, and I simply want to reclaim my erectile functionality that existed pre-surgery.

Medicare is conveniently ignoring all the thousands of men who got their cancerous prostate taken out and ended up with the twin side effects of Incontinence and ED. It's not a "lifestyle" decision for someone who's had a RALP or RRP prostate-out procedure to want to reclaim what the surgery's SE's caused. There's a huge difference between wanting normal erectile function post-prostate-out surgery, which is a medical necessity as part of restoring normal health, and those men who already possess good erectile function but who want "something extra" . . . in other words, men who don't actually "need" Cialis, but men who are making a "lifestyle" decision, going for that something extra. The government improperly lumps all men with ED in the same ("lifestye") boat. "Hey, don't confuse me with those other guys!"

Government-financed enhancement of a man's sexual function with a drug like Cialis, whether prostate surgery caused the problem or whether the man already has good sexual function and wants something extra, is a culture war issue, and a hot potato political issue in America. The last thing the government wants to be seen as doing (in a culture wars environment) is encouraging men to have more sex than they somehow "deserve." The simple truth is that every man deserves to have a normal and healthy amount of sex. Who qualifies? How about everybody?!

Hi compiler!

Thanks for mentioning "pharmacies abroad" and "this resistance is not limited to ED pills." I'm certain it isn't.

Yes, we can communicate off-line. Good idea!

Bill Positive