Active Surveillance: Why it would not have worked for me!

Well, this has been an interesting morning. I learned that I am a very lucky man on at least two major counts. What I have learned might also be useful for others in deciding on any course of treatment or whether to go with Active Surveillance (AS).

While still waiting till Thursday to get my catheter removed, I received my pathology report via email. While not an expert at reading them, I believe (unless told otherwise) that I dodged several bullets. I'll let you all judge for yourselves.

But wait...there's more. By most standards of Active Surveillance thinking, I was a good candidate for AS after my biopsy. However, I chose to "get it out" via RALP based on my "Wildcards" as described in my thread https://www.healingwell.com/community/default.aspx?f=35&m=2845398

I showed a very low volume of cancer in only two cores on one side of the prostate and my Gleason was 3 + 3. My PSA was a low 1.6.

I am now, after surgery, a Gleason 7 with 3 + 4 and with bilateral involvement. The cancer is now considered high grade (actually higher than before but considered intermediate grade) and the biopsy missed one side. There is also perineural invasion (PNI) present which was not seen on biopsy slides.

So not only do I wind up with a good pathology report (in my opinion), I also learned that my cancer was actually a higher grade with more involvement of the gland. Active Surveillance would not have worked for me. I am a lucky man. See my final Pathology results below:

SURGICAL PATHOLOGY:
Final result
COLLECTION DATE: 11/12/2013
SPECIMEN SOURCE:
A. RIGHT POSTERIOR APICAL MARGIN
B. RIGHT ANTERIOR APICAL MARGIN
C. RIGHT POSTERIOR PERI~APICAL MARGIN
D. RIGHT POSTERIOR APICAL MARGIN
E. RIGHT ANTERIOR APICAL MARGIN
F. PROSTATE AND SEMINAL VESICLES
G. PELVIC LYMPH NODES
H. PERI~PROSTATIC FAT
CLINICAL HISTORY:
63 year old male prostate cancer
.
DIAGNOSIS:
A. RIGHT POSTERIOR APICAL MARGIN, EXCISION~
- Fibromuscular tissue/ negative for tumor or prostatic glands.
B. RIGHT ANTERIOR APICAL MARGIN, EXCISION~
- No tissue received, insufficient for diagnosis.
C. RIGHT POSTERIOR PERI~APICAL MARGIN, EXCISION~
- No tissue received, insufficient for diagnosis.
D. RIGHT POSTERIOR APICAL MARGIN, EXCISION~
- Fibrovascular tissue, negative for tumor OR prostatic glands
(Cryosection only)
E. RIGHT ANTERIOR APICAL MARGIN, EXCISION
- Fibromuscular tissue, negative for tumor or prostatic glands.
F. PROSTATE, RADICAL PROSTATECTOMY~
- Adenocarcinoma of prostate.
Gleason score 3+4~ 7/10.

G. PELVIC LYMPH NODES, DISSECTION
~ One lymph node, negative for tumor (0/1).

H. PERI-PROSTATIC FAT, EXCISION-
- One lymph node, negative for tumor (0/1).

Synoptic Report Format for Prostate Tumor
ProcedureDiagnosisGleason
ScoreTumor
location-
Radical prostatectomy
Adenocarcinoma of prostate
3+4~ 7/10
Tumour location Bilateral
Extraprostatic Extension Absent
Perineural Invasion Present
Lympho-Vascular Invasion Absent
SeminalVesicle Invasion- Absent
Surgical Margins- Negative for Carcinoma

Additional Pathologic Findings-
- High grade prostatic intraepithelial neoplasia
- Nodular prostatic hyperplasia
Regional Lymph Nodes:
- One pelvic lymph node, negative for carcinoma (0/1)
PATHOLOGIC STAGING (AJCC 7TH ed, 2010)-
Primary Tumor:
- pT2c Organ confined, bilateral disease
Regional lymph nodes:
- pNO No regional lymph node metastasis

Sometimes you just have to go with your gut feelings, good-luck and wishing you a speedy recovery!

carl

The thing that would scare me about AS is just that: biopsy misses areas or the cancer is worse than the bx showed.

Glad you had it out.

Clanda -

It's good to feel good about choices and results, congratulations. You are your own most important advocate.

I also started out as a G6 and finished off as a 3+4 G7.

When I was told of this I was quite upset. I was lucky enough to be calmed down and reassured by an oncologist I had access to. He told me that the way of grading had evolved and that what historically was classified by pathologists as a G6 in the "old" days was now being classified as a G7. This was relevant to me insofar as reassuring me that all that stuff I read about a favorable G6 might actually still apply to me as a G7. I'm talking long term prognosis. But I see you're already not upset about the upgrade and that's good.

In some ways you're a cautionary tale for those that seemingly qualify for AS or are told so by people who aren't even their medical professionals.

AS also would not have worked out for me. Not because I too turned out to be a G7 AFTER I was told AS was an option, and not even because I ended having treatment, a good pathology and absolutely no side effects. No, it wouldn't have worked out for me because of lifestyle and mindset. I am 3 years out of treatment and I cannot imagine myself still sweating bullets for those past three years and future years considering I was able to treat it, potentially resolve it, and move on without issues. That's why it isn't for me. A real AS program is effective, although not 100% error proof, but it's just not for me. Had I chosen AS, I wouldn't have been able to move to Europe for a year, I wouldn't be able to travel as freely as I do now with 6 week vacations in developing countries, I would not be able to channel all my anxiety and worry towards a dying parent, and mostly, I would still be "treating" my disease and waiting for the shoe to drop.

That said, it's a wonderful option for many, just not you and me.

Keep up with your fantastic attitude, this disease and this place needs people with your attitude. And yes, a good gut feeling which is often precipitated by knowledge of yourself is really important, more important than a lot of academic and inconclusive studies.

clanda,

Sounds like you made a good decision to undergo RALP. I too looked at my decision tree to decide on the best and most current practices to rid myself of this demon.

Tomorrow I get my post surgery pathology report. Hoping for the best but prepared for the worst.

Nick

John, my DRE was perfect, albeit annoying, and my initial biopsy was a G6 3+3 with 5% involvement on 1 of 12 samples. AS was pitched to me at that point. I was upgraded on second reading and this was confirmed in pathology.

I wouldn't have chosen AS regardless, but many in my shoes might have.

I understand what you are saying about an AS program monitoring this but I worry about the diligence of the patient in his quarterly visits, the accuracy of the programs (none are 100%), and the fact that some programs, such as the one in Marina Del Rey are clearly superior to others (as with all practitioners) and the widespread availability of top notch AS programs nationwide.

Anyway, when I asked about people on AS and their pre-existing tendency for such a course was I on to something? Is there something about human nature in your opinion that renders AS candidates viable from get go vis-a-vis upon education?

First of all, your not "High Grade". Your "Intermediate Grade". High grade is "4+3" or higher not "3+4".

If approx. 30% of men are upgraded post RRP, is it not logical to assume that 30% of men on AS harbor higher grade cancer that hasn't been found? I understand that repeat biopsies will weed some men out, but it has to remain true that a lot of men with PCa on AS have higher grade PCa.

If so, these guys go a very long time without the higher grade PCa becoming and issue.

Tall and John,

The success rates you quote for AS are impressive. Do you have a sense for how representative they are of the urologic community as a whole? When we talk about surgery here we often advise men to travel to distant centers to get the best surgeon possible. Because AS is an involved, on-going process, and some men don't have the resources for constant travel, what do we say to those who live in small towns and have to rely on their local doctors?

I don't live out in the sticks but the impression, at least, that I got of AS doesn't completely line up with your descriptions. Several of my doctors recommended that I consider AS but, the impression I got was that it would mostly be a continuation of the diagnostic process -- quarterly PSA and fPSA testing, an occasional PCA3 test and an ultrasound-guided biopsy every year or so, depending. Because of my very-low volume in the biopsy slides and the fact that my Gleason score was either 6 or 7 (3+4) depending on which pathologist one tended to believe, I was so low risk that lots of fancy scans would have seemed like an extravagance. Probably, I would have been kicked out of this process by my PSA but it seems likely that I might have damaged my chances along the way.

There is, of course, no way to know.

word!

That was my thinking too basically.

I mentioned it earlier, but seriously, here I am 3 years out and not having any issue. The thought of not having treated it and still being in limbo, not even from a practical point of view but rather from an emotional one, is not something I would not sign up for.

I believe we are either wired for AS or not. Just as I believe some people get emotionally paralyzed by fear of treatment. Our director of IT yesterday was crying in my office telling me how scared of his upcoming surgery and he went to the bathroom to throw up while telling me. He's having surgery for a broken wrist. Poor guy is coding with one hand.

I am genuinely curious about how many men who embark on AS were convinced to do so. taught to accept it vis-a-vis those who genuinely bought the strategy when pitched. I suspect very few (i'm sure I'm wrong) and I suspect that this is the reason the pro AS crowd is so driven to educate the masses about it. It's just a very tough sell in my opinion given how I suspect most of us are wired.

Post Edited (davidg) : 11/20/2013 11:52:42 AM (GMT-7)

I am also one who believes that there are significant psychological differences between patients who are willing to choose AS and those who are not. I also think there may be significant differences between those who choose different types of active treatment. That is, I agree that we may be wired differently. I would love to see a study on this; maybe Tony can get one of his colleagues to investigate this.

Without making judgement about whose wiring is better, I do think there are big differences. For me, I would have welcomed AS and in fact tried to convince a couple of my doctors that I should try it. But, G7 ruled out my case at the time. If I was diagnosed today and, knowing what I have learned from this site, it is likely that I would be embarking on an AS protocol.

Likewise with my choice of brachytherapy. With my wiring it is sometimes difficult for me to understand why anyone who is eligible for brachy would choose surgery. The long term outcomes are similar but the SE's from brachy are, on average, considerably less onerous. However, with brachy one does not get a final pathology nor the determination that the cancer has been excised from the body. Neither of those were important to me but lack of urinary and sexual issues were of high importance.

In any case, I guess my bottom line is one of agreement with the "different wiring" theory as I'm sure my psychological profile would be quite different from those who must "get it out" and much more similar to guys like JohnT with whom I have almost always agreed on this forum.

Has anyone seen a study on this?

Jim

On one hand I think I would have tried AS...even though it wasn't as popular 6 years ago when I started my journey... But then again my journey started with a DRE that found nodules.

On the other hand, I chose surgery over radiation due to not wanting to drive across town every day for so many weeks.

Davidg, very good question. I was speaking prospectively not retroactively but was probably not clear. Yeah, now that I know that I seemingly have a 100% success, my choice was a no brainer and far superior to AS. However, what I meant was that if I was diagnosed today at age 67 (and not knowing how successful my future treatment would be) I would likely choose AS since even brachy has a 35% chance of ED and my sex life is fairly important.

You also continue to raise a good point about age. I can say with some degree of confidence that I would prospectively choose AS in my 60's. Had I been 40, even with the recent removal of age as an AS requirement, I'm not so confident that AS would have been a good choice for me.

Jim

Davidg,
I agree that patients choosing AS are wired differently than those seeking immediate treatment. Fear of death over rides their fear of side effects from treatment regardless of the probabilities of either. As I posted previously the neural networks are developed over a life time of experiences, and may be as high as 40% genetically predisposed.
I would argue that a simple personality test along with some questions about cancer in general could predict a patient's decision on choosing AS in the 85% range.
This predisposition can also be changed over time with a broad education program about the benefits of AS. We can already see the change in attitude over the last 5 years among doctors and this will eventually filter down to patients.