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How to decide on treatment, facts, and prejudices.

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017
Today I was reading a few new guys posts and the wonderful feedback they were receiving. I reflected on my journey to date and was struck by the difficulty I had and time it took to get to a decision. What factors affected my decision? 
First my decision path was not linear, not rational at times, and certainly influenced by fear. I also was influenced by doctors, fellow PC patients, books I read, articles I read, conferences, retreats, and significantly by the journeys of those that went before me. 
What is most intriguing to me is how I waffled and even decided early on that I just wanted it out! This wanting it out closed my mind to other treatment possibilities. Being told I had cancer in me was a shock and naturally wanted it out! My first two docs were Urologists and surgeons and they recommended what they do. 
My urologist at Yale was amazing and recommended surgery. I wrestled with that because he was such a nice guy. Fortunately, I met an oncologist that was equally nice and offered alternatives that I became open to exploring. 
The forums I participate are dominated by surgery guys, or at least it feels that way. All very helpful, openly share their experience. So, another influence towards RP. The non-RP treatments for intermediate risk guys is infrequently discussed. 
I find myself comfortable with my decision to do HDR Brachytherapy. My decision centers around ease of the procedure, the simplicity of post-recovery and low impact side effects for most. I will say there have been a couple of times I wondered if this seems so good, why aren’t there many others choosing it as a monotherapy? I have learned there is less money to be made for the docs and hospitals with HDRBT, so that influences the frequency of use. 
One of the confounding facts I came across was that HDRBT has declined in use due to the da Vinci RP and the increase in active surveillance. I get the AS but not the RP influence. Sure, da Vinci is better than open, but it is still major surgery with 6+weeks of recovery. Again, I am not arguing with anyone but myself.
Clearly, for me, the road to the decision was long (6 months), complicated (saw 5 different docs), and complicated (much to learn). My one wish for new guys is to stay open-minded, take the time deeply learn about options and determine what’s most important to you, and then make a most informed decision. Patience is something I did not seem to have but learned to accept the journey will be what it is and I should not try to push the rope! Thanks, and happy holidays everyone! Denis

 

Clevelandguy
Posts: 415
Joined: Jun 2015

Hi Sub,

You did what every person should do, got the facts, researched the treament options and made a choice based on the facts at hand & what was right for you.  By going through this process you should feel comfortable about the path you have chosen.  Hope everything works out for you during your journey.  Have a Merry Christmas and a Happy New year to all, Ho Ho, Ho.

Dave 3+4

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks Dave Happy holidays. Denis

CC52
Posts: 101
Joined: Nov 2013

Quote: Clearly, for me, the road to the decision was long (6 months), complicated (saw 5 different docs), and complicated (much to learn). My one wish for new guys is to stay open-minded, take the time deeply learn about options and determine what’s most important to you, and then make a most informed decision. Patience is something I did not seem to have but learned to accept the journey will be what it is and I should not try to push the rope!

Denis - 

What a nicely written piece, and indicative of the common bond we share. Your quote I copied says it all...that the discernment process is very likely is more critical than the treatment one selects. No one can select what's "right" for you - but you. Every treating professional, for as much as we want to believe they truly care about us, ultimately has their business interests to consider. That's a cynical statement, but 100% true. So before someone runs off for treatment, they better make darn sure they have done their research. If you've heard of Sy Syms (the clothing guy), his motto was "an educated consumer is our best customer". It's a stretch to connect the dots there - buying a suit vs. treating cancer - but the motto holds true. 

I'm happy, if that's possible here, that you have perservered through some dark days to get to the place you are today. A place that enables you to proceed to treatment confident that it's the best choice for you.

Godspeed moving forward, and sincere wishes for a Happy Holiday and healthy New Year!

CC

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks CG, I feel we have a responsibility to share, as others have shared with us.  The medical system is complicated and driven by Money.  Happy Holidays! Denis

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Thanks for sharing your experiences. It will help the many newbies in confronting their initiation in PCa affairs. I would like to add to your comments the importance of second opinions that many seem to forget to consider when confronted with the fear for having the cancer. I am pasting below the post of one member of this forum that unfortunately doesn't participate any longer, but that I believe to be of great value to your thread. His acronym is Kongo. He writes this;

"...As others have noted, a second opinion is more than having your biopsy slides reviewed by a prostate cancer expert at a leading institution such as Johns Hopkins. It also involves talking to experts in different treatment specialties and getting their frank and candid opinion about the best course of action to address your diagnosis.

In my own case I not only had my slides read by Epstein at Johns Hopkins (they confirmed the original diagnosis with no changes) but I also met with another urologist who specialized in surgery both DaVinci and open, two different oncologists (one was a telephone consultation), proton radiation, and two different radiation specialists.

In my opinion, these consultations were the most important thing I did in figuring out what to do after I was initially diagnosed with a 3+3 Gleason, a single positive core at 15% involvement, a PSA of 4.2, no physical symptoms, normal DRE, and no known history of prostate cancer in either side of my family.

While I was going through this two month period of meeting with different experts I also read about a dozen books about prostate cancer written by both doctors and patients.

The reason I feel that these second opinions are so important is that I had a chance to compare recommended treatment strategies side-by-side from distinguished experts who were all looking at the same information. Frankly, I was shocked at the wide range of earnest, informed recommendations by these experts.

My diagnosing urologist and the two others I met with were unhesitating in their strong and urgent recommendation to undergo prostate removal to treat my relatively low risk prostate cancer. In fact, they used almost the exact wording to describe the benefits of this treatment which included: "we can get it all," "if you do radiation first you can't do surgery later," and "surgery is the only way to know exactly what is going on inside your prostate," and "you are young enough to recover nicely from this." None of them said a word about potential penile atrophy, ED, incontinence, or other potential side effects until I pressed them with specific questions which I only knew about because I had taken the time to read some books before the visit. Knowing what I know now, I also believe that all of these urgent and dire warnings to have surgery were knowingly incorrect and misleading on the part of the doctors. The funny thing is that I personally liked all of these men and one woman. I don't think they woke up in the morning with the conscious thought to go out and lie to patients to get business. I just think they drank so much of their own Kool-Aid that on some levels they came to believe it.

Of the two oncologists I spoke with, one recommended surgery and the other active surveillance. The oncologist who recommended surgery quipped, when asked about the liklihood of ending up with significantly reduced genitilia after surgery, "you have enough that you can afford to lose some without worrying about it." Now, this brought a smile but it isn't really true. None of us have enough in that department that we would volunteer to give any of it up. The other oncologist (he was the author of one of the books I read) told me flat out that prostate cancer was not going to kill me so beware of any treatment.

The proton therapy consultation was thorough and the doctor took pains to go over all potential treatment methods in great detail. Then he proceeded to dismiss them all as inferior to his chosen field of proton therapy and shrugged off technical questions about adjusting the Bragg peak and potential damage to surrounding tissue.

The two radiation oncologists I met with were, in my lay opinion, the most thorough, objective, and most open in discussing the risk/reward aspects of the various treatment methods. Both of these doctors told me that almost any treatment I chose would likely take care of the prostate cancer. The question I needed to answer was how much risk did I want to take with respect to quality of life. In the end I ended up choosing one of them and I consider myself lucky to have been diagnosed with a cancer that gave me multiple good treatment choices.

As another poster pointed out, second opinions are not free and usually not explicitly covered under most insurance plans. But in my own case, I was using Tricare (retired military) and while every treatment method was fully covered, I did need to meet my annual decuctables so I was going to pay a few thousand out of pocket whether or not I had a second opinion or not. So I chose to meet my out-0f-pocket deductible expenses with second opinions. I think in retrospect that is was a smart investment. I was also, fortunately, in a position to self pay for just about any treatment I chose even if it wasn't covered so my only focus was on making the smartest choice for my individual case. I feel fortunate in that respect.

I know that some men may not have the financial means for multiple second opinions. As I recall, the average cost of each consultation was somewhere between $700-800. While this isn't cheap, it's fairly doable for most and many doctors will reduce their fees for patients with financial hardship. If the transmission fell out of the car we drive most of us would figure out a way to pay for it so we could get back on the road. I view the cost of these second opinions in the same way. They aren't a luxury.

Before we can make an intelligent decision about what is best for us, we have to know the facts. Reading, participating in forums like this, and consulting with experts are, in my opinion, the only way to get this.

I fear that most men only do what their diagnosing doctor tells them to do. I stronly feel that our health care and Medicare laws should allow for at least another second opinion by a qualified, non-diagnosing doctor chosen by the patient. But in the meantime I believe we should figure out a way to pay for it ourself.

I've gone on too long about second opinions but I do strongly urge you to get them. Get as many as you can until you feel you have enough information that you trust to make a truly informed decision."

Thanks, Denis.

VG

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

VG nice piece. Denis

Grinder
Posts: 437
Joined: Mar 2017

If there were four commandments in prostate cancer treatment, they would be these:

- Seek out several opinions from many experts in different fields, and if you feel pressured by any one of them RUN don't walk. When you feel you are getting "maneuvered" in a certain direction, the alarm bells should go off in your head. If you are being rushed when there is no good reason for it, be suspicious.

 - Once you have settled on a treatment, don't just "go along" and take the next guy up... Check out the local talent, their experience, their history, the rate of side effects and the severity, and get the best guy/gal available, even if it means a four month wait in line. In most cases, (not all) our advantage is that PC is so slow growing that you can wait for the best. And if you do need an emergency procedure, I have noticed that quality professionals are willing to squeeze you in if your straits are dire.

- Research. Far into these archives, other forums, literature, web sights, etc. After a while you will have acquired enough knowledge that you can make as competent a decision on your treatment as your GP, and likely you will be able to tell them a thing or two.

- Don't freak out.

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