CSN Login
Members Online: 3

Decisions, Decisions

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

As many of you know from previous posts, I was diagnosed with PCa about five weeks ago. Age: 59. PSA at Dx=4.3. 1 of 12 biopsy cores showed adenocarcinoma with 15% involvement. No evidence of perineural invasion. Gleason score was 3+3=6. My prostate volume is 47 ml giving a PSA density of 0.092 ng/ml/cm3. My PSA velocity from PSAs ranging back to 2002 is 0.23 ng/ml/yr and PSA doubling time has been calculated at 9.28 years. I am waiting on a second opinion on the biopsy. DRE is completely normal, the prostate is not enlarged and there are no other urinary or erectile symptoms. Staging is T1c.

During the past month I have read nine books on prostate cancer and reviewed over 40 clinical studies. I’ve consulted with my urologist, my GP, an oncologist, and three radiation specialists who have extensive experience treating prostate cancer. I have also consulted with a urologist who specializes in active surveillance.

I believe I have gathered enough information to make a treatment decision and would appreciate feedback from those who have gone down this path before.

One of my guiding conclusions is that for an early stage prostate cancer such as mine, surgery and radiation are equally effective in eliminating cancer at the 15 year point. Watchful waiting is another very viable option with extremely high survival rates but at my age I believe that eventually I will have to seek a treatment and would prefer to do it while I am still (relatively) young and in good health. For me then, the decision was about minimizing the side effects of the treatment options rather than deciding which treatment was more effective in addressing the cancer.

My urologist, GP, and oncologist recommended surgery. I carefully considered this option and weighed the advantages and disadvantages as well as the potential side effects. I also looked and the pros and cons of open surgery compared to robotic procedure and found that while about 70% of surgeries performed today use a robotic procedure, this treatment has a higher incidence of incontinence and erectile dysfunction. I believe that is due to the wide disparity of experienced surgeons using this technique and that over time this trend should reverse. The biggest drawback to me on surgery is that the relatively high incidences of the side effects of incontinence and erectile dysfunction, even with nerve sparing techniques, was unacceptable. Another aspect seldom addressed is that the effective size of the penis is reduced by about an inch during the surgery procedure as the urethra removed with the prostate is repaired by drawing the base of the penis into the cavity to connect the urethra in the penis with the remains coming out of the bladder. Also with surgery, 23% of patients who undergo RP have to have follow-on radiation treatment because the cancer remains in the prostate base. The additional procedure increases the likelihood of long term incontinence and ED issues. I know many who post here have had great success with surgery and I am happy for them. While it may not be representative of the entire population, the number of posts on this site pertaining to vacuum pumps, artificial sphincters, penile implants, injections, debates on which diaper or pad is best and so forth is very scary for one considering options. There’s also the recovery time, blood loss, and the general risks associated with any surgical procedure whether it is one six inch incision or six one-inch incisions. For me, the accumulation of potential side effects posed by surgery was simply a bridge too far.

I investigated and consulted with radiologists regarding brachytherapy, HDR brachy, XBRT, proton treatment, and two stereoscopic procedures. The proton therapy consult was with Loma Linda Medical Center in Southern California. The two stereoscopic procedures were the Novalis Tx process and Cyberknife. While radiation has drawbacks and side effects too, they are significantly lower than those involved in surgery. Urinary complications generally involve a sense of urgency or frequent urination that resolve within two months of treatment and are greatly mitigated by drugs such as Flomax. About 15% of men who undergo radiation will have ED problems three or four years after the procedure but the good news here is that the nerves remain intact and the condition is well treated with Viagra like drugs. In Brachy therapies and XBRT there is some incidents of rectal bleeding where radiation doses have damaged the colon. There is a surgical procedure that essentially cauterizes the damaged veins that corrects this if it occurs. The Novalis and Cyberknife system delivers a high dose of radiation in five sessions, each of which last about an hour. A variation is that there is a day of rest between sessions to allow normal cells time to recover. These procedures deliver radiation at sub-millimeter accuracy so that damage to surrounding organs is minimized. The dosage is comparable to HDR brachy which has a very high success rate but does require two or more hospital stays for a couple of days each. The 4-year data on Cyberknife is extremely positive…virtually no side effects, minimal urinary discomfort which if it occurs resolves itself in a few weeks, and continued strong sexual function. The Loma Linda proton therapy is very promising as well with a high success rate and you just can’t say enough about the quality of their staff, physicians, and their overall approach to treating the “whole man” not just the cancer. The downside of proton therapy is that it requires 8-9 weeks on site at one of the proton centers as you are treated 47 times, each session lasting about 15 minutes. Even though I live in San Diego, I would have to move to Loma Linda for 2.5 months to avoid five hours a day commuting. Protons are delivered with a high degree of accuracy and the threat to organs near the prostate margins is minimal. Recent studies have shown that protons do not offer any significant advantages over other forms of radiation.

I am fortunate enough to have insurance that would cover any option I choose and have the financial means to self-pay if necessary. I have enormous sympathy for men whose treatment decisions are based on insurance coverage instead of what is best for them. In my case, money or insurance was not a factor in making my decision.

I also looked at HIFU but as it is not yet approved in the US, I passed. I want a medical team that will be with me for the long haul, not just over a long weekend in Jamaica or Cancun.

All of the specialists I met with had impeccable credentials. For the most part they operated from state of the art facilities with attentive and empathetic staffs.

At this point, I am about 90% decided on going forward with the Cyberknife procedure.

Some may say "take your time"...and I believe I have done that. I put together a matirx with 20 individual Quality of Life and other factors and rated the procedures against each other from my perspective.

While my mind is still open, I don't want to be in a state of paralysis through analysis. My continued research is at the point where I am reading the same statistics over and over.

I didn't seriously consider acupuncture but I did look at some homeopathic and alternative treatment protocols. While I don't think they are appropriate for a primary course of action, I believe they can complement the course I have chosen through diet and lifestyle changes.

Sorry for the long post but would appreciate any feedback from those who have tried to decide amongst similar choices.

bdhilton
Posts: 758
Joined: Jan 2010

I choose open surgery but that was my choice based on factors I thought were important.

It sounds like you have done your homework and are close to making a decision plus from your clinical numbers you truly do have many options. Once you make the decision never look back or second guess yourself… but make sure you get some one that is one of the best in your selected process...experience is a very critical factor in your treatment IMHO....

The most important think I did outside of what treatment and who would do it was making some minor changes to my diet (as I was already very physically active and had a good diet already) ..

The best to you and everyone else here…enjoy the day

Trew
Posts: 892
Joined: Jan 2010

You hadme on the edge of my seat there, like a great mystery, I certainly didn't know what the outcome was until the very end- Well Done!!

I hope all men facing a decison like yours read this post.

mrspjd
Posts: 693
Joined: Apr 2010

Kongo, your post shows how diligent you've been in your research in order to arrive at the tx options that are right for you. It also shows just how much work, time, & thought you have given to a decision choice for your PCa clinical staging. I applaud you and, if nothing else, perhaps you will set a positive example of how to go about learning as much as you can once "you become a member of the club no one wants to join." Many newbies come here scared and looking for answers. You have made it clear that there are no "easy answers." Every case is different. I have no agenda or judgement or need to validate any successful PCa tx decision. From my standpoint, you, along with your family/loved ones, have enough info to know what the right decision is for you. Go with your gut & intuition.
Best,
mrs pjd

Swingshiftworker
Posts: 634
Joined: Mar 2010

It's amazing how similar our PCa stats are (actually they are almost identical and we're also the same age - 59) and how similar our thinking is concerning PCa and the various treatment options.

Looks like we're also going to make the same treatment choice -- CyberKnife. I didn't make my decision because of insurance, but I just changed insurance carriers today so that I would not have to pay for it out-of-pocket unnecessarily. The change takes effect on July 1st and I will arrange to get CK treatment ASAP after that.

Like you, I am really in no rush to receive treatment, but I see no reason to wait to get CK, given the minimal number of treatments required (4 in my case), the convenient location of the treatment site and the minimal side effects reported (I actually spoke to 3 prior UCSF CK patients directly who had no ED and minimal urinary discomfort).

Hopefully, you and I will both have good things to report after our treatment. Good luck!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Swing, since you mention UCSF, I am assuming you are a California resident. There is a law in California that if your are participating in a medical trial for cancer at your doctor's recommendation, insurance MUST pay for the costs. (You are still responsible for co-pays, deductibles, etc.)

There is a Cyberknife trial going on right now and I know that in addition to the Cyberknife center I am considering (Cyberknife of Southern California at Vista), that Stanford, Harvard, and others are participating. If UCSF is also playing in the study, you may not have to wait to switch out your insurance.

See http://www.ucdmc.ucdavis.edu/cancer/clinical_trials/thebigc/pdfs/CC_Clinical_Law_Trial.pdf for much more details.

Thanks for the support and good luck to you with your choice.

Swingshiftworker
Posts: 634
Joined: Mar 2010

Thanks for the tip, Kongo . . .

but I've already made the switch. Don't think UCSF is participating in the trial and don't want to bother going anywhere else as long as Blue Shield will foot the bill. We'll see what happens in July when the change becomes effective.

BTW, since you were sharing M-B traits w/Randy, thought you'd be interested to know that I'm an INTJ

"INTJs are strong individualists who seek new angles or novel ways of looking at things. They enjoy coming to new understandings. They tend to be insightful and mentally quick; however, this mental quickness may not always be outwardly apparent to others since they keep a great deal to themselves. They are very determined people who trust their vision of the possibilities, regardless of what others think. They may even be considered the most independent of all of the sixteen personality types. INTJs are at their best in quietly and firmly developing their ideas, theories, and principles.

Hallmarks of the INTJ include independence of thought and a desire for efficiency. They work best when given autonomy and creative freedom. They harbor an innate desire to express themselves by conceptualizing their own intellectual designs. They have a talent for analyzing and formulating complex theories. INTJs are generally well-suited for occupations within academia, research, consulting, management, engineering, and law. They are often acutely aware of their own knowledge and abilities—as well as their limitations and what they don't know (a quality that tends to distinguish them from INTPs). INTJs thus develop a strong confidence in their ability and talents, making them natural leaders."

I think that describes me pretty well, particularly in regards to how I've addressed the PCa problem and my choice of CybeKnife over conventional therapies.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Swing, it will be interesting to compare notes as we go through this.

RiverRider
Posts: 15
Joined: May 2009

Kongo, your numbers are very similar to mine. Age 60, had a psa up at 4.6 but the follow up ones were about 3.6. Still my overall psa velocity is higher than yours.
Here is the one difference, my biopsy was clear.
Thus, I did not have that one 15% positive Gleason 6 core.

On the other hand, I have very little doubt that with enough samples, they'd find one core of 15% Gleason 6. (btw, my father had prostate cancer)

So I just assume I've got some Gleason 6 cooking in me. My doctor agrees that I have about a 70% chance of turning positive before age 70. My father diagnosed at age 63.

BTW, I've been following this prostate cancer business for a very long time, especially the past 3+ years. I've read heaps, studies, news, forums until I had it coming out my ears.

My opinion on your decision. With all due respect, I think its crazy.
Mostly because you have come to your "choice" after only 5 weeks, when by all standards and results, you could almost certainly take a year and not put yourself at any substantial risk. You are too close to your flood of information to make a good decision.
You have totally over-thought this decision. You have failed to allow your thinking to mature and gain some wisdom. You are going entirely on what you think is logic.
I can almost assure you your thinking will mature with more time.
Not impossible you might still choose the same course of action, but the odds are you won't.

You really need to reconsider your approach to this matter. I simply do not believe you understand the entire issue. Yes, I know how much you've read and how logically you've come to your conclusion. I still believe your process is faulty.
You need more time and you almost certainly have more time.
Heck, as I've said, I've been reading about this for years, and if I got a 1 in 12 15% result, Gleason 6, I'd take my sweet time thinking about what I might or might not do.
I might say to the doctor, well let me think about it, and well meet again in 6 months to discuss it.

There is considerable reason to do nothing now. You might enjoy your current "untreated" state and then a couple years later do a treatment if needed.
Not really even "watchful waiting" but tactical delay.

You say you've read everything but I wonder if you've read the recent writings of one of the most well respected surgeons in the nation. He has recently changed his mind about treating men like yourself.
His name is Peter T. Scardino, MD and he is the leading surgeon at the Memorial Sloan-Kettering Cancer Center.

Here is a link to a article about his presentation to the New York Section of the American Urological Association.

http://www.wellsphere.com/cancer-article/is-surgery-best-reserved-for-first-line-treatment-of-higher-risk-prostate-160-cancers/924818

Then log in and see/listen to the actual presentation.

http://www.urotoday.com/61/browse_categories/prostate_cancer/aua_ny_2009__long_term_outcomes_of_radical_prostatectomy_will_open_rp_survive__multimedia_presentation12162009.html

Now, to be sure he is talking about surgery as a first line treatment, but some of his concepts about treating early stage prostate cancer still apply regardless of suggested treatment. Anyway, its a interesting presentation in the ocean of information. (just what you needed, more info )

Part of that article says the following...
"Also during the course of this presentation, Scardino more than once makes the point that surgery is so successful at preventing prostate cancer-specific deaths for patients with low-risk disease that “one has to ask oneself” whether many of those patients couldn’t just be monitored and treated later if necessary."

Its that "monitored and treated later if necessary" aspect that I was leading to.
He, the great surgeon, is now coming to the conclusion he has been treating to many patients too early. I suppose depending on one's data, I'm feeling more that way as the ground seems to be shifting in the urological community. A definite change in the past 3 years.

If you allow yourself a break from your intensity you will have time for wisdom and perspective to surface.

You said the following...

"Some may say "take your time"...and I believe I have done that. I put together a matirx with 20 individual Quality of Life and other factors and rated the procedures against each other from my perspective."

That alone says you have gone off the deep end. "A matrix with 20 individual Quality of Life and other factors...and rated the procedures against each other"

Please sir, "take your hands off the keyboard and step away from the matrix"

OK.... I mean well. Hope you don't take offense.
I think you've gone off on this in a manner uncalled for given your condition.

Have you considered that they could do 3 men with your exact condition and NOT even hit one positive biopsy sample in 2 if them. Those two would go through the next year fat and happy without a care or the need to rush. Yet when diagnosed a year or two later, they'd have 99+ percent the chance of success that you currently do.

So thats my take on your post and situation. From everything you've presented thus far, I'd simply do nothing for some time. Then I'd get another PSA in 6 months and see whats cooking. I don't think I'd officially say I was doing active surveillance, but I'd just be taking some time while keeping a eye on it and allowing my thinking to progress from a matrix to wisdom.

Given all your choices, I'd not think the Cyber-Knife would be on the top.
While I have not read as much as you about it, the data is rather limited compared to other treatments. I'll read some more, but to me, its still some ways to being proven as equal. I may be wrong on that.

Oh, about my father, back in the 70's he did external beam radiation, then took some hormonal (DES) and lived the next 25 years, dying of other causes at over 88.
At the time of his diagnosis he was deemed inoperable (extra-capsular) and thought he would die soon. Not true. Perhaps that plays into my more relaxed perspective.

Well thats my take.. Perhaps you'll find a useful nugget somewhere in there.

Swingshiftworker
Posts: 634
Joined: Mar 2010

If Kongo's decision is "crazy", then so is mine. I took 3 months to make my decision to get treatment with CyberKnife after doing pretty much the same research and finding out the sames things that Kongo did.

Even though you say otherwise, what you are suggesting is to simply wait and engage in "active surveillance" until the data (PSA scores and subsequent biopsies) dictate otherwise.

If my only choice was surgery, I'd do just that -- WAIT -- because of the dreaded risks and negative "side effects" and quality of life issues that Kongo concisely describes in his post.

However, the choice is not only surgery. It includes various forms of radiation treatment (including CK and other IGRT techniques, Proton Beam Therapy, IMRT, Brachytherapy and EBRT), HIFU and Cyrosurgery). There is also homeopathic, herbal and off-label prescription medications, which some claim work to abate and even cure cancer.

FWIW, I'm taking saw palmetto extract (to control urinary function & reduce PSA), pomegranate extract (to reduce prostate size and PSA) and low dose naltrexone (to enhance my immune system and to impair the growth of cancer cells) but I wouldn't stake my life on any of these medications alone.

Given all of the available treatments out there, CyberKnife appears to be as effective as everything else for PCa patients like Kongo and I -- Stage T1c, Gleason 6, PSA less than 10 -- with much fewer side effects and quality of life risks. True, the data shows that the mortality risk for PCa patients like us is about the same whether we do something now or do nothing, except active surveillance, for the next 5 years.

However, given the apparent effectiveness and minimal side effects of CK, there really is no reason to wait, especially given the risk (reported by other men here) that the cancer we have is actually more widespread and aggressive than indicated by our PSA scores and biopsy which would be allowed to grow and spread unabated, if we delay treatment until the data indicates otherwise.

So, while your advice is well-intentioned, I think it is you who doesn't understand the issue. The issue is making the best decision for yourself that you can, given the available information and your state of mind.

Some people, like you, can wait without distress for years without treatment. Others feel an imperative to remove the cancer immediately by any means presented in order to get it out of their body as soon as possible. And others seek treatment as soon as practicable after conducting thorough and reasoned research on the available therapies available.

I think that Kongo and I fall in the latter category. Neither of us is in any rush to seek treatment, but we also see no reason to delay, if the treatment is likely to be successful and have minimal side effects. CK is such a treatment.

I don't think you're decision to engage in "active surveillance" is crazy and take no offense at the suggestion. I've considered it and rejected it as a LONG TERM strategy. I hope your choice to wait indefinitely -- tactical delay, you called it -- works for you, but, for me, I think that is an unnecessary risk that I am unwilling to take, given the availability of CyberKnife and the risk of more serious consequences if I do not get treatment in the near future rather than later.

Best of luck to you!

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I know what type of person you are...just by your background and style and organization of writing. I am guessing you are very much an "A" type personality but with a very controlled even long term vision...that's my personal read...and I am usually pretty perceptive about people even on message boards and usually my reads are very, if not, spot on correct. However, I have been wrong before.... with that said I do believe the choice you are making has very good logic and research behind it and I see no real problem with going forward with it...and particularly here is the single reason why:

1. It seems to me that the overwhelming evidence proves the post op exams of all cancerous removed prostates have a higher chance of being upgraded with both the grade and volume of cancer contained than downgraded or staying the same.

Now, I will say that you do probably have some more time to "safely" assess and perhaps your opinion would as I perfer to state "change" rather than call it gathering wisdom. People make decisions on lots of information to form a final oppinon on a treatment choice..like a detailed matrix which I think is a very logical way of putting facts into a position creating a way of making a hard and difficult ambiguous decision into a much easier fact based obvious answer. I see no flaw in that process what so ever!... The only point I gain from River Rider that could be quite valid is time might serve your end decision better. The reason I say that is because I am much like what I see you doing...My diagnosis was Oct 27th...64 days later I choose and underwent Robotic Da Vinci surgery - River Rider has to think I am and was totally nuts... point is ..we are types that like to analyze to the best of our ability organize the facts to create the fool proof senario leading us to the correct and right decision then execute it and MOVE ON....because there is much more to accomplish and do that awaits us. In my case in retrospect I did make the right decsion..with a tumor that in two places was less than 1mm from breaking through the capsle...I doubt I had 6 months or a year to wait before I had a whole different situation to deal with....and my gleason was 3+3=6...yeah right then post op I had 18% grade 4 and 2% grade 5....yeah wait you have all the time in the world...that is my warning..to me waiting is a very fine line of maybe your ok but then again could be a very risky and potential completely different life changing outcome. Whatever you do IT WILL BE RIGHT FOR YOU...why... because you are the driver of that bus! God bless you!

Randy in Indy

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

You are a very perceptive guy, for sure. Would enjoy meeting you sometime. I went to school in Indiana (Purdue) but successfully escaped the Midwest ( I call them flyover states now) years and years ago. Have never been back. BTW, my Meyers-Briggs profile is ENTJ. What's yours?

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Here is what I think I should be:

ESFP
Outgoing, friendly, and accepting. Exuberant lovers of life, people, and material comforts. Enjoy working with others to make things happen. Bring common sense and a realistic approach to their work, and make work fun. Flexible and spontaneous, adapt readily to new people and environments. Learn best by trying a new skill with other people.

But, here is what I tested to be:

ESFJ
Warmhearted, conscientious, and cooperative. Want harmony in their environment, work with determination to establish it. Like to work with others to complete tasks accurately and on time. Loyal, follow through even in small matters. Notice what others need in their day-by-day lives and try to provide it. Want to be appreciated for who they are and for what they contribute.

Here is what I feel my partner would test out to be:

INFP
Idealistic, loyal to their values and to people who are important to them. Want an external life that is congruent with their values. Curious, quick to see possibilities, can be catalysts for implementing ideas. Seek to understand people and to help them fulfill their potential. Adaptable, flexible, and accepting unless a value is threatened.

Here is what they say you are:

ENTJ
Frank, decisive, assume leadership readily. Quickly see illogical and inefficient procedures and policies, develop and implement comprehensive systems to solve organizational problems. Enjoy long-term planning and goal setting. Usually well informed, well read, enjoy expanding their knowledge and passing it on to others. Forceful in presenting their ideas.

Kinda pretty much what I thought from your writing and thoughts coming through what you wrote. Good Stuff!

Oh Sorry you had to endure going to Purdue! LOL I was an IU Grad.

Randy

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

You test the same as my wife!

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

LOL Obviously you picked your wife prior to knowing her Myers-Briggs test results....lol

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Randy, actually I didn't do a Meyers-Briggs on her but did do the analysis matrix, comparing pros, cons, attributes and trade-offs, side effects, and potential benefits with other candidates...she came out on top. Just kidding, just kidding...if she saw this post I'd be worrying about ED BEFORE treatment!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

River, no offense taken but we clearly have differing personalities and approaches to problem solving. In fact, I had read the articles you referred to but the context upon which Dr. Scardino based his comments were based on the RP procedure in general and not really comparing other forms of treatment. While I agree that there is no need for an urgent decision in my case, I don't see much benefit in waiting just to wait and perhaps acqire some sort of "maturity" or "wisdom" during the process. In fact, I believe there are some downsides to waiting for some indefinite period, as you infer, until the cancer assumes a more aggressive profile.

One of the biggest advantages to treating early stage PCa is that most of the treatments have very good success rates. Later stages have a declining degree of success and more complications regardless of the treatment course chosen. The key to me here is EARLY stage. Waiting gradually turns and early stage cancer into an intermediate or advanced cancer. While a few months probably doesn't make much difference, I don't see the value you place on arbitrarily waiting a year or more to make a decision.

Waiting a year or more won't change the fact that I have cancer and that it is slowly growing. Waiting a year or more will not change the side effects of various courses of action available today. Waiting a year or more is unlikely to see a revolutionary new treatment that obviates existing choices.

I think that when you have enough information to make a decision, you should make the decision. I really don't get your point about letting it percolate and simmer while waiting for some ambiguous wisdom to manifest itself that might change the decison outcome.

You questioned my building a matrix to compare the pros and cons of each treatment option. Frankly, I just don't understand the point you're making. I frequently build matrices to compare potential courses of action when there are many variables to consider. For me, it is a good way to rank my priorities and focus on the essential elements of the decision I need to make. In fact, almost all of the various protocols construct matrices to show treatment courses of action and potential success and side effects. I didn't invent the process.

I know there is much more to learn about PCa than the several books and studies I've read. The more I have learned, the more I realize that the nuances of this disease are very, very complicated. Having said that, I believe that in my stage today, I have learned enough to make an intelligent decision.

A major factor in deciding to act now rather than wait was the realization that eventually I will probably have to do something about this cancer. Unless I'm hit by a bus, or my plane crashes, or some other unforseen event occurs, I can reasonably expect to live another 20-25 years. I don't wish to limit my future options by not taking advantage of the stage and otherwise good health I find myself today. If I were 5-10 years older and diagnosed with the same pathology that I have today, I would very likely choose to wait and be more cautious about choosing a course of action. But at 59, I don't see any advantage in waiting and do see a potential downside.

If I were in your shoes where I had a history of rising PSA but negative biopsy results I would probably be waiting too. But I'm not in your shoes. As you point out, I've got a positive biopsy which means I KNOW I have cancer, and I KNOW it will eventually grow. I also lead an active life and have a demanding career that requires me to travel constantly. I want to be able to have some confidence that plans, campaign rollouts, vacations, golfing trips, and overseas travel will not always be under a cloud if a new PSA shows up which forces me to take more urgent actions to address the cancer.

I don't agree with you that waiting and mulling over information improves your decision process. In fact, my own life experiences, education, and training has taught be the exact opposite. I would agree with you if I had come to my decision after only investigating one treatment option, or consulted with only a single doctor, or read only a single book. But I've done a considerable bit more than that and regardless of how much information you receive, eventually you get to a "tipping point" and have enough information to go forward. Another disadvantage in waiting, from my point of view, is that over time your impressions of conversations with experts tends to dim, blur, and run together. I prefer making a decision while the conversations, body language, and tone of the conversation are clear in my mind.

We all have different personalities and life experiences. These affect how we approach problem solving and decison making. As I mentioned earlier, we're clearly polar opposities in our approach but I am sure your methodology (as quirky and dawdling as it may seem to me) is right for you.

Your post did cause me to pause and rethink my position and I remain confident that my decision process is the right one for me (although clearly not the right one for you). For that I thank you.

Good luck and I hope that your situation resolves itself one way or the other soon.

RiverRider
Posts: 15
Joined: May 2009

Well, you have your thoughts on the matter, which I respect.
And of course as I said, my biopsy was not positive.

I suppose I am left with the following observation.
After looking at this subject for years, especially the past 3, in all my readings and sharing in various forums I have never met or read about anyone who had a complete picture of the subject in the first 5 weeks after diagnosis.

I guess I also will be viewing my probable, eventual diagnosis, should it be similar to yours, with a mild sigh rather than any shock. I will know its been there for years and won't be blasting off any time soon. (individuals situations may vary).
I also have the backdrop of my father living 25 years after diagnosis.
I fully assume I have some PCa currently so its really just a continuum in my mind.
A line that is crossed only in my medical file, not in my body.

OK...keep up your good work. AS always, every patient is different.
I think I'll take as much risk as possible and still sleep soundly. For others they feel like a time bomb is ticking inside. I already know its ticking, but hopefully very slowly.

Now, I've had two close friends who have had treated PCa in he past 3 years. Both surgery. One with almost no side effects. The other doing very well after a couple years. Still, I'd probably go your route, Cyber, or seeds or proton if I had the choice.
What a fun medical condition, where the patient can make as good a choice as the doctor.
We ought to be paid for our own consults.

Best to you

Hoosierdaddy's picture
Hoosierdaddy
Posts: 16
Joined: Mar 2010

It is a reality that most of the doctors you will talk to have a substantial financial stake in your choosing their option over another. Just be aware of that. At age 55 with a gleason of 7 and PSA 10 I chose robotic with a surgeon who had done about 1,000 of them, and 4 months later am satisfied enough with my choice. "Pick your poison."

hopeful and opt...
Posts: 1313
Joined: Apr 2009

suggest that you have an mri with a spectroscopy so you will have a better idea of where you currently stand....I believe that its best to have more knowledge about how you stand before before making any decision.

Ira, the crazy guy on this forum who had decided to do active surveillance one year ago.

lion1
Posts: 240
Joined: May 2007

Kongo,

Excellent research and determination in deciding what the best course of action is for you. That could satisfy you mentally and potentially give you the best chance for a complete cure with no side-effects.

But, as you go through this process, please remember that statistics mean absolutely nothing, because it comes down to the individual, you are unlike anyone else on this post. Regardless of whatever anyone else posts here. This site allows us to draw off the experiences of others and helps us put in persoective on how to cope whatever the outcomes are. With that being said, it is very important to research and not make snap judgements, but there are many unknowns.

The reason I say this is because you may think you've made the best decicion based on all your research, but there are no guarantees. I hope you don't wait too long to get the cancer out. I hope then your ED and Incontinence is non-existent.

I just want to empahsize the point to stay positive and if for some reason you have some side-effect, don't beat yourself up over it thinking you did all that research for nothing. It sounds like you are crossing all the T's and dotting all the I's. Only God knows what the outcome will be. But, I believe your best chance for full recovery is Timely action.

So many post to this website, but not everyone who have had full recoveries ever posts again. I wish they would. And many who suffer from continued complications quit posting because they have tried everything with no aval.

Good Luck......

Lion1

Kentr
Posts: 111
Joined: May 2009

"So many post to this website, but not everyone who have had full recoveries ever posts again. I wish they would. And many who suffer from continued complications quit posting because they have tried everything with no aval."

My oncologist said pretty much the same thing - if people are doing OK, they will "move on" because they don't have a "problem" any longer and want to put everything behind them. Although I continue to post on occasion, my interest in doing so has started to fade because I'm doing pretty well over two years after brachytherapy. That said, I still drop in once in awhile to throw in my two cents. I feel I owe it to others if a subject or concern comes up that I can address in a positive manner.

At this point in your life, continue to read what others have gone through and what they are considering as a treatment option - it helps a lot!

Best of luck!

Kent

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Lion, your point about being wary of statistics is quite relevant, particularly when researching PCa. If you're the 1 or 2 percent that is affected by a negative consequence, it's 100% for you. On the other hand, if we don't take statistics into account we would find it much more difficult to make objective decisons and would be reduced to antecdotal stories or "gut feels."

I agree with you too about the guarantees. I think the only guarantee we can safely bet on is that none of us are getting out of this world alive. It then becomes a matter of choosing how we want to spend our days here and whether or not we leave the world a better place for our living.

I also agree with you that those who have successful treatments tend to move on after a time. It would be great to hear from them and I know there are some who continue to post but more would be better.

I think all of us in this infamous group should continue to do what we can to educate and support men who will walk in our footprints in the future.

g8rb8's picture
g8rb8
Posts: 18
Joined: Dec 2008

Kongo,

It seems that you have done a tremendous amount of due diligence. You know the risks and their offsets, but you're concerned about analysis paralysis. I reached a lock-up point in my decision-making process. It took some frank talks with my wife and doctors to clear the path for a plan, but it helped me feel better in the long run that I had done all the calls and reading and questioning. Now, 16 months after my daVinci, I couldn't be happier with the outcomes. I still sweat the PSAs - in fact, I'm waiting on results on one right now.

Whatever your treatment course, prayers for your personal peace, your family and great outcomes! Turn those last cards up and play the hand.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I respect your AS decison and understand why you're there. FYI, I do plan to have an MRI and spectroscopy scheduled (it's part of the early prep for Cyberknife) and I have some built in exit strategies calculated if I do end up going forward with Cyberknife.

lion1
Posts: 240
Joined: May 2007

Kent & Kongo,

Your comments are right on the mark! When I become fully continent again(4YRS INCONTINENT NOW), I will post periodically, because my experiences and outcome will be key to help others-- Emotionally and Spiritually.

Furthuermore, it is men just like you that make it worthwhile to always communicate and always hope. There are truly a lot of good people in this world and many of them post on CSN.

God Bless,

LION1

hopeful and opt...
Posts: 1313
Joined: Apr 2009

is there a place in the san diego area that does this?.....as far as I know ucla is the closest place.............Ira

mtguy
Posts: 23
Joined: Apr 2010

Kongo - I've read each of your posts with great detail and thank you for sharing your thoughts as well as information you have pulled together. Like you, my wife says I am over-analytical but when I read you put together a matrix you hit a cord with me immediately.

I was diagnosed April 7 with Stage 1 Gleason 6 and PSA 3.2 at 58 years old. No family history so I am plowing new ground.

I am very interested in your matrix and wondered if you could share it with me (realizing you have put in your personal considerations, I am interested in what you thought about for attributes as well as a summary of pro/con for each option on the procedures).

I have been leaning to da vinci operation but cyberknife is the other option I was considering.

If you can share it minus your personal entries, I would appreciate it greatly.

LNWMT@yahoo.com

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

MTGUY,

I'd be happy to send along the matrix but as I am traveling now on the East Coast I won't be able to get to my home computer until Friday. Am sending you an email and perhaps we can chat before then if your schedule permits.

Best,

g8rb8's picture
g8rb8
Posts: 18
Joined: Dec 2008

One final comment. As to the "take your time" school of thought, I'm not convinced. In general, yes, PCa is a slow growing type. But not always. I underwent a daVinci RALP less than 90 days after my initial diagnosis at age 45, and in at least one lobe of the gland, the rogue cells were < one-half mm from the gland wall. At my age, none of my doctors recommended watchful waiting for exactly the reason you presented: I'm going to have to deal with this sometime, so it should be at a point in time most advantageous to me, not to the cancer; at a time when it's less developed, has had less time to escape, and I'm in better condition to deal with the procedure and after effects.

Looking back, I can't imagine giving those cells the extra time to advance that extra one-half mm and start attacking the gland wall.

Cut it out, nuke it - whatever method you choose, but kill it dead while you can.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I was very similar having a nodgle and post OP path report had two places less than 1mm from breaking through. I had diagnosis Oct 27th and surgery Dec 29 only 60 days later. Here was my path:

52 years old
PSA 9/09 7.25
PSA 10/09 6.125
Diagnosis confirmed Oct 27, 2009
8 Needle Biopsy = 5 clear , 3 postive
<20%, 10%, 10%
Gleason Score (3+3) 6 in all positive cores

11/09 Second Opinion on Biopsy slides from Dr. Koch
(4+3) = 7 5%
(3+4) = 7 10%
(3+4) = 7 10%

Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined

Da Vinci performed 12/29/09 - Dr. Hollensbee & Scott

Post Surgery Pathology:
Prostate size 5 x 4 x 3.5 cm Weight: 27 g
Gleason: Changed to (3+4) = 7
Primary Pattern 3, 80%
Secondary Pattern 4, 18%
Tertiary Pattern 5, 2%
Tumor Quantitation:
Greatest Dimension, Largest tumor focus: 19 mm
Additional Dimension 18 x 15 mm
Location, largest tumor focus: Right posterior quadrant
Multifocality: Yes
Greatest dimension second largest focus 10 mm
Location: second largest focus: Left Posterior quadrant
Extraprostatic extension: Yes
If yes, focal or non-focal: Nonfocal
If yes: location(s) right and left antero-lateral
Seminal vesicle invasion: No
Cancer at surgical margin: No
If no, closest distance with location: less than 1 mm, right posterior quadrant
Apex involvement: No
Bladder involvement: NO
Lymph-vascular invasion: No
Perineural invasion: Yes
Lymph nodes: 9 from right pelvic 0/9 positive
Stage: pT3a, pNo, pMX
All nerves sparred - found two additional pudendal arteries

FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE

Virtually Pad free 2-20-10

Next PSA scheduled for 5-26 Results 6-2-10

Notes on Recovery: Was at my desk working (from home office – sales) 6 days following my surgery. No pain to speak of (very lucky as many have some pain) I think because I took the Tramadol they gave religiously and found it to be the best drug in the world. BM’s where the trickiest part and most uncomfortable in the early stages but improved with time – follow the diet they give you!...I strayed off and the next BM helped to get me back on track – I like food very hot and spicy - don’t recommend that for at least a month following surgery. Cream soups, mushroom, celery, and chicken worked great the first week following surgery. Mashed Potatoes…Ah the first time following surgery it was heaven!...the first really solid food I ate…..you will learn to appreciate food all over again as you add back your favorites following surgery when the time is right. Take all the help from everyone around you…it might be a while you get that opportunity again to be waited on hand and foot. Liquids are a concern but some affect people differently it seems reading through the discussion board…I found anything carbonated would cause much leaking…alcohol was not good either…but I justified doing it thinking It’s my training method to work on my bladder control!...lol I love homebrewed beers too much! And am an admitted hop head.

ED path:
Early on started on Viagra 100mg pills cut into 4ths so 25mg per day dose then a full 100mg on every 7th day.
Also bought pump and used sporadically to get blood flow to member. Within about three weeks or 5 weeks from surgery (cannot remember but probably posted on CSN somewhere) had usable erections.

Randy In Indy

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network