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Posted 12/20/2017 12:45 PM (GMT -5)
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
Posted 12/20/2017 1:53 PM (GMT -5)
I think that your repeated emphasis on "convenience" is an interesting dimension in the broader HW/PC perspectives on how things evolve over time. (I'll note that you didn't specifically use the term "convenient" here, but I've seen you use it in multiple other threads; here you used the phrase "simplicity of post-recovery." Same.)

I remember reading an old thread where that specific word became contentious when linked with BT—I think it might have been from before I officially joined HW (I monitored the site for quite a while before signing up). I'll be completely honest here and say that I just spent a couple minutes looking for this old thread by searching on what I thought were likely "key words," but I could not find it to quote it here exactly...so you'll have to trust my memory of the general tone & tenor of the thread...

I believe the thread was probably started by someone (probably another favorable-risk case) exploring treatments, and a different member replied with some pros and cons of the various common treatment modes. In that reply, he noted that "convenience" was a common factor for men choosing brachytherapy (and in fact, I believe he linked to a BT practitioner's web site which also used the specific word "convenience."

Well, that was where a brachytherapy patient named "A Yooper" jumped into the conversation and had a fit that "convenience" was being called out as a significant decision factor for BT. He was absolutely insulted, and pissed, and basically expressed that this somehow lowered the technical sophistication of BT as a primary mode of treatment. A Yooper doesn't post here any more, but he was a frequent, vocal and unabashedly biased voice in favor of BT for anyone who was looking for treatment...but the convenience factor was somehow, for him, a sub par reason to select it.

Interesting how times change. Personally, I've got no qualms about weighing convenience as one of the possible priorities that one could consider. It wasn't something I personally weighed heavily, but I've got no qualms with it being a consideration on-the-table.

Post Edited (NKinney) : 12/21/2017 10:17:20 AM (GMT-7)

Posted 12/20/2017 3:18 PM (GMT -5)
Denis, you're a pretty great case study on how to do this right. You had the early classic feelings, then logically examined your options and made a well educated choice. I wish all PCa patients were as thorough as you were. BTW, I don't just say this because you picked a radiation treatment. We have equally thorough guys, e.g. Prato and Halbert who picked surgery after doing their homework.

Norm, I don't specifically recall Yooper's aversion to the convenience factor but you may be right. Actually I'm really sorry he doesn't post here anymore because he was (is) a really smart guy and very knowledgeable about PCa and in particular LDR Brachy. Also it could have been me that used the word convenience because I do think it's a reasonable factor to consider. I think LDR Brachy, SBRT and HDR Brachy all have a significant convenience factor over IMRT with similar results (depending on the specific case). And nothing could have been more "convenient" for recovery that my LDR Brachy when compared to surgery. So, yes i agree with you that's it is a valid consideration.

Jim
Posted 12/20/2017 4:05 PM (GMT -5)
Denis! I would just like to add one aspect of the decision process that you did not thoroughly address is SE! Assuming that long term results/success from HDR, & LDR Brachy, IMRT, SBRT, & RP are similar, I personally see a big difference in the SE of such procedures. I know some RP members will argue that RP patients improve to near 100% with ED etc., over time but I see a difference in quality of life after RP vs radiation. I am 53 years old, happily married, and very sexually active! If I can obtain similar results without the sometimes long term SE, then sign me up! I know I am over simplifying facts and numbers here.....But this is my opinion based on the limited information I have gathered recently. Currently on AS, and do not feel the urgency to really educate myself much further at this point. By the time I choose TX (if at all), things may drastically change in terms of TX. Just my two cents....not looking to start a war! Happy Holidays gentlemen! God bless for a happy and healthy 2018!
Posted 12/20/2017 4:34 PM (GMT -5)
Thanks for the comments. Had not thought about convenience but it certainly fits. SEs certainly were a factor and recovery time and difficulty a big factor. However, my post was a reflection on the process and I am not advocating for anyone treatment, rather advocating for the process to discern what is best for each person. I have a friend who heard cancer, couple weeks later had it removed, and never looked back and happy as a clam. I do remember he struggle accepting ED. But today he is happy.

My experience is men don't talk about illness with other men and certainly nothing that would effect us the way PC can. So these forums, PCRI conference, GFMPH weekend that I went to all were wonderful in helping me move through the process.

I see guys who seem to rush to decision and I just hope they do not have regrets. I have seen posts on regrets and some guys end in a bad place. Certainly any of us can have poor outcomes from treatment, none are 100%.

We need to continue to share, to ask questions, and to help those that come after us as those before us helped us.
Denis
Posted 12/20/2017 5:17 PM (GMT -5)
My uro does not like LDBT..he's seen too much urinary stricture to be comfortable with it. He didn't say I shouldn't do it and he would treat someone elses mess but doesn't recommend it. The only problem with HDRBT as I see it is that you better know what you are doing in terms of placement and dose..it they've done a lot of it it's a good option. I just finished 40 out of 44 EBRT treatments ..my RO thinks hypofraction should be good, just not that comfortable with it and neither is Roswell Park. He will do it if you insist. Personally , I don't think I know enough about it to demand at RO do it ..but mine has done it with a couple of guys who thought 44 treatments were a deal breaker and 28-30 were the most important thing to them. The way I figured it, if I could do 30 I could do 44. SBRT not an option for me due to logistics. My RO figures it will be the treatment standard pretty soon though.supplanting even surgery.
Posted 12/20/2017 6:29 PM (GMT -5)

Subdenis said...
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.


Hear, hear!

I would add a wish that the urologists we go to for dx do the same. Neither uro I consulted talked to me about radiation as a primary tx or suggested I consult an oncologist. (One of them I saw only pre-biopsy, but I specifically asked him if it turns out to be cancer, what are my options.) I'm not saying I couldn't have done more research on my own into options other than surgery, but it sure would be nice if more first-line medical professionals would help us to slow down and would broaden our (and their) view.

PCa is the first major medical problem I've had, and the learning curve about the decision process itself has been steep. Whether or not RP was the best choice for me is debatable, but I didn't really have that debate. I feel fortunate, under the circumstances, that I found a top surgeon whose office, halfway around the world from the remote island where I live, has given me superb and compassionate support at all points pre- and post-RP. I feel equally fortunate that I've found this HW community. You folks have educated me about best decision-making practices, and I'm already finding those lessons to be invaluable as I consider whether to do ART while the PSA's undetectable or wait for a PSA trend and do SRT. Thanks, everybody.
Posted 12/20/2017 6:33 PM (GMT -5)
Convenience is a good word--ease of treatment and recovery might be a more nuanced phrase. I look at convenience in other ways as well. For some, convenience might include things like...how far away is the treatment facility? How much time will I have to take off work?

For me, at the time I was researching, if I had gone EBRT (40 treatments), I would have had a 2 hour drive, each way, each treatment. Basically 40 days off work. Surgery cost me 15 days off work. SBRT wasn't available nearby then.

I know there are those who argue that we should be willing to "go anywhere, to any length, to get the very best". I argue that simply isn't fair to a huge number of people. It's fine if you are retired, or can set your own work schedule, and have the ability (and funds) to travel long distances and stay away from home for extended periods. Lots of folks don't have the ability to do it...so convenience becomes a shorthand way to express the idea, "here are the choices that are truly available to me".
Posted 12/20/2017 8:19 PM (GMT -5)
Good post SDenis !.....Sheepguy...could you include your stats with your posts please? just curious where your at with it all .. carry on !!...David
Posted 12/20/2017 8:24 PM (GMT -5)
Oh, yeah, the stats. LOL PSA rising to 11.0 from 3.5 over a period of 6 years. Gleason 3+3 in less than 5% of 4 cores total. No PNI. Two conventional biopsies both with the exact same results.
To Halbert's point ...I am self employed and the treatment is 15 minutes away so the EBRT worked well for me. Additionally , as a farmer, there was no way I could be out for 3 months minimum unless absolutely a live threatening situation.
Posted 12/20/2017 8:47 PM (GMT -5)

halbert said...

I know there are those who argue that we should be willing to "go anywhere, to any length, to get the very best". I argue that simply isn't fair to a huge number of people. It's fine if you are retired, or can set your own work schedule, and have the ability (and funds) to travel long distances and stay away from home for extended periods. Lots of folks don't have the ability to do it...so convenience becomes a shorthand way to express the idea, "here are the choices that are truly available to me".

Halbert great point...there are many factors why someone may make this decision. Another that I am discovering now is economics and the insurance carriers! My carrier denied an MRI test, seeing Dr's not accepting Medicare, saw another post where insurance carrier did not agree to SBRT etc. Just another battle we have wage besides fighting the cancer! It's a sad state of affairs! nono confused mad
Posted 12/20/2017 9:54 PM (GMT -5)
There are many influences leading to a treatment decision. In some cases guys are placing a lot of faith in the advice from the urologist who diagnosed them, who may be most comfortable recommending RP. And surgery is usually the first thing to come to most guys' minds when diagnosed. And some guys are just going to be most comfortable with the thought that "I had cancer and I had surgery and now I know it is all cut out".

The kind of guy who researches and comes to this site is more likely to choose a path not recommended by his urologist. And probably more likely than a guy who has not come to this site to choose radiation therapy over surgery. It was true for me. After some research I fairly quickly decided I did not want to go the surgery route. And eventually came down to the choice of HDRBT or SBRT. And HDRBT was approved by my health care and SBRT would have been a fight to approve and I did not want to wait so I went with HDRBT.

Subdenis said...
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

Posted 12/21/2017 4:56 AM (GMT -5)
Works out thanks love to hear how HDRBT worked out (no pun intended) for you?

Halbert, on point, there are many factors that go into the decision making and too many (myself for awhile) are caught in the get treatment now! The idea that I have cancer in me for six months or longer is odd and uncomfortable.

The influence of the Urologist is logical, it is often the doc we see the most. I saw mine for a few years with rising PSA before a biopsy. So he was my doc. All of the UROs I saw (3) suggested seeing an RO, 2 downplayed it as just something you should do but surgery is your best option. Their bias makes sense they practice every day their art and believe it is the best. But as we are discussing here, there are many factors to weigh int he decision making.

Be well all. Denis
Posted 12/21/2017 10:05 AM (GMT -5)

Subdenis said...
Works out thanks love to hear how HDRBT worked out (no pun intended) for you?

Be well all. Denis

Most of all Denis......Happy Holidays and good luck with your treatment in the early New Year! This message board is great and thanks to all the Vets who have made the journey into "The club no one wanted join" for all of us newbies a bit easier. You guys ROCK! God speed and hopes for a happy and healthy New Year to all!
Posted 12/22/2017 2:14 PM (GMT -5)
I have posted my regrets before but will add them here again. I rushed into RP at my first visit with my URO. Big mistake!! I am close to USC, UCLA, Loma Linda and City of Hope all excellent hospitals with excellent doctors in every field. During RP the URO took all my nerves. That is his only choice once he is in there operating and finds spread. I still have positive margins which means I may need salvage radiation later anyway. Still incontinent when I am working at 4 months out. Total ED. The need to get blood flow to my penis requires VED pumping every other day and injections at least once a week to stay healthy. FOREVER !!! Consider that in your inconvenience scenario if you go RP. Consider the inconvenience if your wife is in the mood to jump out of bed , get a syringe, defrost your tri-mix inject and come back to bed .The URO said I may need Cialis after RP. He did not mention the senario if all nerves are removed. BE INFORMED.
Posted 12/22/2017 2:55 PM (GMT -5)
subdenis, unfortunately you cannot decide with 100% warranty what is the best treatment for you. The problem is that you will not know what is exactly inside the prostate if you do not have surgery and you cannot predict for sure if it is all really inside or if the surgeon is going to take all out if you have it. What it is more certain (maybe) is that you need a treatment and you have to decide soon. Of course, SE are important too, it all depends of your priorities. Every doctor usually recommends what he does simply because it is what he trusts more. Good luck.
Posted 12/22/2017 3:14 PM (GMT -5)
Guys, please see the link below. Dennis has decided on a treatment plan and is moving forward. His debate his over and I'm sure we all wish him the best.

Jim

/www.healingwell.com/community/default.aspx?f=35&m=3957129
Posted 12/22/2017 9:09 PM (GMT -5)
I know Dennis has made up his mind and this subject is to inform others that they need to weigh all of your options like Dennis did. Good luck Dennis
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