Another Newbie story..

I've been lurking here and at and other sites and this is my first step outside of my own little world. As briefly as I can be here is my PCa story:
At the behest of my wife I got a PSA, prescribed through my primary care doc, (my first, or so I thought) last July and it came back 6.3. When we got back from our annual stay in Canada during the summer, I made appointments to see 2 Urologists, the first who found a nodule during the DRE and immediately advised another PSA and a biopsy. The second Uro berated me for this PSA being my first, didn't mention anything about a nodule during the DRE, and said I needed a biopsy past haste. I found the first Uro flighty (spent the first half of our consult discussing the slow control of our lives by big Pharma and hyping a book on heart disease!) and a bit pushy since he wanted to do the biopsy that week. The second I found to be arrogant and condescending, didn't mention any nodule, and treated my wife and I like we were encroaching on his golf plans. He also dismissed the Task Force findings and recommendations because they were written by a woman pediatrician. By the way the second PSA, taken in November, was 7.4.
So, on the recommendation of two neighbors I met a third Uro, who also found the nodule, and I decided right then to do the biopsy. On New Years Eve, a 12 needle TRUSS guided procedure was done, the results of which were 3 cores G6, 3 were 3+4's 2 of which were >60%. When we met the Uro to discuss options I told him I was going to get a second opinion on the slides from Dr. Epstein, which he had no problem with but did say that no matter what his grade, I still had significant cancer and, in his opinion, AS was NOT an option. He, of course, recommended surgery--open since he's only done a couple of dozen with the robot--which surprised me because he was not a wet behind the ears doc.
But he lost me when he said that because of the location of the Ca (peripheral zone near the edges, like most I guess) he would not do nerve sparing. I should interject here that since my diagnosis I have read a great deal about this vexing gland, including the very interesting book, "Invasion of the Prostate Snatchers", Patrick Walsh's book, and countless articles, You Tube videos, and have lurked in more than a couple of forums. At this point I feel highly educated and comfortable in the role of Captain of my own fate.
To no surprise, the 3 G7's were changed to 6's, and I was obviously elated, and cautiously optimistic, and clinging to the hope that AS was back on the table. After all, according to Dr. Lupor out of NYU, Geason 6 cancer is a toothless tiger, right? But a pattern wad emerging, finding that nothing much about this disease is concrete, and I found that all my optimism about not having my prostate removed or destroyed was blunted by the uncertainty of what my findings truly meant. But this I felt sure of: this Uro would not be operating on me.

So I turned to radiation as the next option and (now leaving out big parts of what happened the next couple of months) have decided to have the Cyberknife treatment. Given there are no significant differences in long term mortality rates among all the treatments I considered, it is the one that I feel is best for me, meaning efficacy, side effects, procedural comfort and time as parts of the equation. I gave a long thought to the two things that were negatives--lack of long term comparative results vs. RP and others, and the not-so-little fact that since the gland is still inside me there are no assurances all the cancer was destroyed.
I'll briefly mention that last month I went to Miami and had a 3T mp MRI which found a potentially cancerous lesion in addition to that which the biopsy found. The Uro there, whom I like quite a bit, said that was irrelevant if I was to have surgery (he's done many hundreds of DaVinci's), that scheduling surgery immediately wasn't necessary since there was no sign that the Ca had left the capsule, and if I was insistent about still keeping AS as an option it would be very risky. He reminded me that oft times higher grade cancer was found upon examination of the excised Prostate, and that even the multi-focal MRI can miss significant lesions (he said about 15%, I've read higher than that)
Since leaving his office a mere 3 weeks ago and now thinking seriously about surgery (on the strength of his assertions that his patients have very little side effects even though months earlier he agree with me that side effects from surgery were vastly under reported), I've read about the staggeringly bad results the survey about erectile satisfaction pre vs. post surgery revealed (<7%). Back to the boiling cauldron of treatment pros and cons I went!
With the question of whether BC/BS of Florida will pay for Cyberknife still unknown I just got my newest PSA reading and it has dropped by almost 30%! If nothing else it should mean that I can wait until I'm eligible for Medicare in 3 months.
And so it goes.....

Hi Jimmy-

With your Dx, there is certainly no urgency to rush into treatment, and it may be a good opportunity to wait until Medicare kicks in, if that will expand your options. The kind of Medicare plan you choose may affect your options, and I'm sure you will check if they cover CK.

That's great that you went and got that second opinion on your biopsy slides from Epstein - a good case lesson for everyone! That puts you back squarely in AS territory for almost all AS programs. Within a year, your mpMRI-targeted biopsy should give you the info you need as to whether you can stay with AS.

I don't know any CK docs in your side of Florida, but can highly recommend Debra Freeman in Tampa, or Constantine Mantz in Ft. Myers.

I must say I'm impressed by the three commenters to my post, practically honored. For those reading this, and are puzzled , just look at the total number of posts amongst them! To Tall Allen, I desperately wanted (note the past tense) to believe that because my cancer has been graded G6 by one of the best this country has to offer, it will never kill me---if Dr. Lupor is correct (ref:http://www.cancernetwork.com/oncology-journal/gleason-6-prostate-cancer-serious-malignancy-or-toothless-lion/page/0/1?GUid=46C64F13-7757-4732-B0F3-BC659351FF26&rememberme=1&ts=23012014). My logic was akin to thinking that if you get shot and hit with a hundred foam bullets you'd never die because they were after all, only foam. But, as I mentioned in my post about the uncertainties this disease presents, AS becomes risky because I have a lot of G6 and who knows if there is more? It surely makes the decision agonizing, and to add to the emotional mix, I have a neighbor who is fighting a losing battle against PCa; only his gargantuan inner strength and will to live has him still breathing.
I appreciate you bringing the Medicare aspect into it and had no idea my choice of plan (?) might determine coverage. And special thanks for offering up the docs in Tampa and Ft. Myers. I may just give them a look for reasons I won't get into here.
Pratoman, your saga was informative, well written, and perhaps life changing for me. After reading all that you wrote it effectively put to rest any thought I had about RP. Whether you would be dismayed in learning that some may choose not to have surgery after reading your story, unintentional or not, it has made an impression on me, and I would bet other men as well. I'm glad I have the opportunity to thank you in this forum.
And John T, your support for my contentions about the SE's of surgery gave me comfort. Thank you for that.

I will continue to write when significant events occur, but for now, on the heels of a reduced PSA, I will breeze into Canada for a peaceful summer, and face the dark side some time in October.

Jimmy Dukes,
You are right on the mark in recognizing those three that commented first. We often look to them as mentors. You have a very special depth of understanding and great communicating skill in writing. I would urge you to start a prostate cancer blog, if you have the time. I would appreciate reading it and sure others would too. Just keep us posted with your Journey and Keep the Faith, Dan in Cloudy So Cal.

Gleason 6 is not always a "toothless tiger." My Dad was diagnosed as a Gleason 6 had RP, pathology report showed it had escaped the capsule, and had radiation. He subsequently passed away as the cancer had metastasized. From beginning to end 16 years, no question overall it was a good run. But it started with Gleason 6.

jIMMY:

There is no one correct answer. You have loads of options.

AS is not for all. It was not for me as I had a G4+3. But, even if it was available to me, my mental/emotional make-up is not a good fit for AS. Each to his own.

I chose surgery, for many reasons. I won't get into that. Don't let anybody minimize the SE POTENTIAL with surgery. I do have ED. Fortunately, I am 100% continent, but enough folks have major problems in this area. Unfortunately, in my case, the surgery did not cure my cancer.


Radiation also has its share of POTENTIAL SE. Surgery SE come on immediately, radiation SE can occur years down the road.

There is no one right or wrong answer. All you can do is examine the possibilities and make a decision.

Clocknut:

Frankly, I think the smartest guys on this forum know a lot more than the AVERAGE urologist, who deals with many non-PC issues.

Mel

PeterD, punning, yes I see that,tho I see a pun as using a the same word [spelt/spelled} the same meaning different things. I don't see that it in weird/wired. I am using the words in parenthesis above as the same meaning but spelt/spelled differently{the reverse of a pun} Its a fine line but distinct I think. Regardless, perhaps, as in old, we are just discussing the number of angels found on a pinhead. Thankfully the better angels of our nature are prevailing. Its been nice sharing bread with you again….
Compiler, I thank you for your sMALL tribute. If I am wrong, its just me giving meaning to my life.
Ya know, I cry every day at least once in Joy. Its that time…. Off to see, sea turtles and commune with a few, and getting fewer , 2 legged sharks. I'm wearing em down with aloha...

Logos,

Ah, I see your distinction. I can't seem to pin it down to a single word or term but the following all seem to apply in various degrees:

Sensational Spelling
Cacography
Eye Dialect

Clock:

That's a different point. I'm really not seeing a lot of medical advice, per se. I am seeing: why not consider X or Y? I am also seeing many references to assorted studies.

Anyway, my point is that we have many very knowledgeable folks here in HW and many know more than the average general urologist.

Mel

I getting as much input as you can is really helpful, whether it's from a doctor, someone who has gone though it, this site or reading. Consider all of your options. But when it comes down to a decision, it's you that has to be happy with and live with your decision and only you can make it.

You guys have excellent points, and I apologize for hijacking this thread. It's undeniably true that HW is the best place I've found for advice and support regarding just about any prostate cancer situation.

The only piece of advice that continues to bother me is when we tell someone that they have all kinds of time to make a decision regarding treatment. I'm sure that's true virtually all the time....except when it's not, and that would be truly regrettable.

I was worried in this thread because the OP appears to have quite a cancer load, even if it's all currently presumed to be Gleason 6.

halbert said...


Occasionally, on the threads that are exploring the different treatments, I've seen some statements that come mighty close to the dangerous advice boundary...particularly when the "brachy" guys are talking to someone who is struggling with the surgery vs brachy question.

@Jimmy, a belated welcome. You seem to have an outstanding knowledge of our disease and know the right approach toward decision making. I'm sure you will discover the right answer for you. Good luck and please let us know how we can help.

@Halbert....dude..."dangerous" is a pretty strong word. As one of the "brachy guys" I guess I just haven't seen their "dangerous" advice. I encourage you to specifically call out such advice when you see it as opposed to broad brushing a whole segment of our members...that way there can be an intelligent debate on said advice. From my perspective the only "dangerous" advice seems to be when members provide incorrect information that newbies may accept as correct. Fortunately, said advice is generally called out by knowledgeable members.

@Everyone re medical advice. Other than medical professionals coming here to give advice, the site owner has no issue with peer to peer medical advice. Previously I have shared that we have a separate moderator forum to help the mods do a better job. On that forum there is a FAQ section. One of the FAQ's is: Can Members Give Medical Advice? Peter's answer is:
"Yes, by all means. It is not against the rules for members to share their opinions about medical treatments or to offer medical advice. I don't want to inhibit the sharing of information or opinions.

There is a guideline to members to use good judgement and not to rely on others for medical advice. At some point members must accept responsibility for themselves.

The forums are really about sharing. I think it is okay to offer referrals to medical doctors, or hospitals, or suggest a treatment that worked for one person.

I know we all have our biases about what constitutes good treatment, often cast as traditional verses alternative approaches, but we should try to keep an open mind about these kind of discussions.

There will be some "bad" information in our forums and if you disagree with it, you are free to state your opinion (ie. such as disagreeing with someone offering a strange or unusual treatment), but we should try hard not to disrupt the sharing aspect of the forums among members."

Jim