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Posted 10/16/2017 9:47 AM (GMT 0)
The good news is I think less about my cancer and treatment then I did a few weeks ago. The reality is I am still indecisive and a bit fearful of what to do. As I reflected this morning, the side effects are the barrier to decision making, particularly incontinence.

I know many have few or insignificant SEs, I know if folks who had to have SEs corrected and have a good status now. I also know that for my stage (low risk, some 3+4) all treatments have a high probability of dealing with the disease.

And I don’t know what to do. I am caught off guard with this feeling, as I have been a decision maker whole life. I have some upcoming doc visits and an MRI to see if there are any detectable changes. I meet with the RadOncol for the first time and hope to be more informed.

The greatest challenge for me is being able to talk about this stuff to ensure I am not off track and to not be alone with these thoughts. My wife is awesome and she lost her first husband to stomach cancer and I don’t want to overburden her.

So, this post is not anything new, just reaching out and would encourage others to not be alone in our thoughts. Have a great day everyone. Denis
Posted 10/16/2017 10:38 AM (GMT 0)
I am in the same boat, but now I want to be treated in the near future. My main concerns are the PIRADS 5 lesion in mpmri and the bilateral findings in biopsy. In my unexpert view these findings discards AS (and I have not found any doctor who likes AS here). However, my number and percentage of cores and PSA density are pretty low and Gleason is 6.
I have been living with "abnormal" PSA readings for 5 years and I am tired to wait (but I am afraid to be treated too, I cannot deny that). Also, I think about the possible consequences on my general health if a extend my current state of high anxiety for too long. I hope we will leave so much uncertainty and fear behind us soon and can have a reasonably normal life again.
Posted 10/16/2017 11:22 AM (GMT 0)
Denis, keep doing what you're doing. What I suspect you'll find is that when you get done gathering information and make the decision, you'll have an immediate sense of relief. And then, whatever treatment you choose, the day you walk into the hospital you'll be relaxed and calm. Really. I was.
Posted 10/16/2017 11:35 AM (GMT 0)
Totally understandable and common for favorable risk guys like you at the stage you are at right now...totally understandable.

The period of knowing the least (thus the max confusion) is in between the first, random biopsy findings and the second confirmatory biopsy (which is now right around the corner for you). It's the period of knowing the least about your specific case AND knowing the least about the disease called prostate cancer.

The 2nd confirmatory biopsy has been demonstrated to dramatically reduce the risks and unknown (because you will then be dealing with a percent-of-a-percent; which should be most meaningful if you have any basic understanding of math/stats). The best thing for your current situation is that because of the nature of your initially favorable-risk findings you don't need to make a decision during this current period of confusion/unknowing...it's what we call "don't rush." We encourage people to make a decision based on data, not on emotion.

Post Edited (NKinney) : 10/16/2017 8:11:10 AM (GMT-6)

Posted 10/16/2017 12:44 PM (GMT 0)
Hi Denis, I sent you a message with a book recommendation. Hope that you received it. The author's experiences may offer you ideas on how to pose your questions.
Posted 10/16/2017 1:18 PM (GMT 0)
Hi Denis,
You're clearly not alone; for any of us who chose the path of information it can be difficult. There is so much info out there and some of it quite biased. Since all indications were that my cancer was still contained and I was very uncomfortable with the risks that AS presented for my joint replacements; I knew I would select treatment. Given the statistical evidence that my cancer was contained I saw little value in having surgery even though that's what my Urologist suggested. For me the surgical risks far outweighed the value of post surgery pathology. I objectively ruled out surgery as overkill.

I then made out a list treatments and likely side effects and the pluses and minuses of my Radiation options. Even though SBRT was out of network for our insurance and it required a few hours of travel for each treatment it ended up my preliminary choice. A two hour and twenty minute consultation at Cleveland Clinic sealed the deal. I haven't looked back. Down the road even if I have a recurrence I know I made the best decision. I'm not going to fret BR now and take great satisfaction that at least for me everything still functions.

I sent several "Thank You" notes to my insurance for permitting me to go out of network. In the end it was a win win for both since insurance ended up paying much less for my treatment than if I had stayed close to home and had IMRT. I ended up with less travel time with five fractions than the 42 I would have had at a Pittsburgh treatment hospital.
Posted 10/16/2017 3:09 PM (GMT 0)
jmadrid, I so agree. And of course, the waiting is not something I do well. I wish you peace! Denis
Posted 10/16/2017 3:10 PM (GMT 0)
Halbert, thanks buddy. I trust those that have gone before me. Just need to vent occasionally. I need another GFMPH weekend! Denis
Posted 10/16/2017 3:12 PM (GMT 0)
NKinney thanks there will be no confirmation biopsy, due to 3+4, so AS is off the table. Decipher tests came back intermediate risk. Now need to decide on treatment and when. Thanks, For your thoughts. Denis
Posted 10/16/2017 3:14 PM (GMT 0)
Terry thanks for your thoughts. Denis
Posted 10/16/2017 3:20 PM (GMT 0)
ASA or anyone, where are messages in this forum? Denis
Posted 10/16/2017 3:49 PM (GMT 0)
Denis, I sent it as part of a friend request on another forum. Only friends can message there, but since you don't have an email, maybe they can't contact you.

Anyway, Michael Korda's "Man to Man" book might be a good read for you. He had open RP with Dr. Patrick Walsh in 1993, when that was the "golden" solution. There were issues that Korda was not prepared for, and had to deal with. Korda is a respected author and publisher, who received high praise for his candor in detailing his challenges and what he tried to overcome them. I recall reading reviews of the book when it was published in 1996. It received attention because "men didn't talk about such problems". You can buy it on eBay or Amazon.
Posted 10/16/2017 4:22 PM (GMT 0)
Thanks ASA just got it on Kindle. Denis
Posted 10/16/2017 4:34 PM (GMT 0)
I think an important decision-making skill is "deciding not to decide." With your Dx, there is really no rush. And even making provisional decisions can filter the flow of information. You are starting to find that time is your friend -- it allows the emotional temperature to cool down somewhat. The initial reactions are always "just cut it out" and "do something fast" - you wouldn't be human if you didn't have those instincts.

i did both psychotherapy and practiced Mindfulness when I got my diagnosis. I found that setting aside time for a therapy session once a week gave me "permission" to focus on me and my issues surrounding cancer in general, and my cancer in specific. Mindfulness is an amazing tool for keeping one in the present moment. My mind would spin out of control, and I would become anxious (which are much the same thing). After I incorporated Mindfulness into my mode of thinking, those thoughts and feelings no longer dictated who I was. I won't say it stopped them completely - you really don't want to do that - but I got through them a lot faster.
Posted 10/16/2017 4:42 PM (GMT 0)

Subdenis said...
NKinney thanks there will be no confirmation biopsy, due to 3+4, so AS is off the table. Decipher tests came back intermediate risk. Now need to decide on treatment and when. Thanks, For your thoughts. Denis


Thanks for your reply. Monitoring for deferred treatment (AS) is not typically "off the table" because of 3+4 (it usually depends on volume of Gleason pattern 4), but I'm less familiar with use of Decipher in the pre-treatment mode. I'd appreciate you helping us all to learn more about Decipher. I do know that "intermediate" is not a term used in the Decipher reports. What was your 0-1 Decipher score? (key info missing from your signature?) I am aware that the primary utility of Decipher in pre-treatment mode is, when the risk level is high, to decide on whether to do intraoperational pelvic lymph node dissection (PLND) or not, and/or multi-modal treatment; are these extra measures what your doctor is recommending?? (These are not typical of 3+4 cases, especially very low G4 volume.)
Posted 10/16/2017 5:04 PM (GMT 0)
Decipher has been giving Genomic Classifier Scores based on biopsy samples lately. They define an "average risk" category (0.45-0.60) which is intermediate between low risk and high risk. Its primary use is to help the patient decide whether AS is appropriate, just as Subdenis has done. It's controversial to start on AS with a GS3+4 because about 10% are later found to be metastatic. Klotz advocates that for patients already on AS, there is no need to come off it until pattern 4 predominates (i.e., GS 4+3). Not everyone agrees. There are no standards - it's up to the doctor and patient.
Posted 10/16/2017 7:09 PM (GMT 0)
My decipher score was .58 low end of high risk. So I will get treatment.
Posted 10/16/2017 7:47 PM (GMT 0)
Thanks for your reply, Subdenis. As I said, Decipher score for pre-treatment decision making is new for all of us, and I am pleased to learn more about it...so appreciate the info.

One of the articles I've read spoke to the retrospective G-7 cohort (Mayo study) mets by category was 2.4% for low Decipher score, 6% for average scores and 20% for high scores. I wish, though, that they had published the results separately for 3+4 subset versus the 4+3 subset. Everything else points to these two subsets as acting very differently...3+4 generally acts like 3+3, and 4+3 generally acts like 4+4. I've looked but couldn't find that detail breakdown, but I imagine they are dramatically different. I think that would be very meaningful to reveal that part of the study because there are many 3+4 men who are otherwise widely considered strong candidates for AS, particularly if they have low volume Gleason pattern 4.
Posted 10/16/2017 8:02 PM (GMT 0)
Nkinney that would be interesting. As you know there are no perfect indicators, that's what makes this such a hard decision. However, for me, I want to err on the side of caution/cure versus risk/metastasis. I am very healthy and relatively young 65 tomorrow. So should have 15 + years of golf ahead of me. The journey continues.

this should be a link to my decipher report if anyone is interested.

https://www.dropbox.com/s/t4w7kbdpy2wvcbp/decipher.pdf?dl=0

Denis
Posted 10/17/2017 11:33 AM (GMT 0)
Hi Denis

I am 5.5 months post RALP, dry overnight but leak like a sieve during the day mad

Went to a nice local urologist yesterday and he wrote me a script for Physical Therapy. Apparently they can help you do the Kegel exercises more effectively. EMG or something? PT appointment Nov 6th.

Anyway I am not giving up and if it comes to pass I will have a sling or AUS installed. Was good to hear from many at GFMPH that they were very happy with their sling or AUS.

I sometimes wonder if I should have had SBRT instead of RALP. Wasn't a candidate for seeds due to large prostate size. But it is nice to know that I was SV-, EPE-, LN-. Also surgeon said my prostate was growing up into my bladder neck so something would have had to be done about that anyway.

Nice meeting you at GFMPH and I wish you well making a decision and moving forward with treatment.

Urologist said he could help me with trimix if it comes to that and that he had many men who were very happy with that solution to ED despite initial trepidation. Still hopeful not to need that. First things first, need to deal with the incontinence then tackle ED.
Posted 10/17/2017 12:57 PM (GMT 0)
Gardener, dry nights is good and usually starts about a month after RP. The PT or what I call the "Kegel Coach" involves biofeedback using a rectal probe, which is not at scary as it sounds. Mine used two phases, one where the probe detects your contractions and measures how long you can hold them. The second involved using the probe as a TENS device to stimulate the pelvic floor muscles. I think I had around eight sessions. You will also be expected to maintain a daily diary of how often you void and how many times you leak. There was some improvement but it wasn't happening fast enough. I had been told soon after RP that I would need radiation at six months for adverse pathology and it would require the ability to hold a full bladder.

My RO informed me that most sphincter healing will happen within the first 8-9 months following RP and that after radiation there would be little if any further healing. So he put me on Lupron to prepare for the RT and prevent the cancer from spreading. Meanwhile I had to decide on getting the AUS. It was a lengthy, complicated timeline because it has to heal before RT can begin and there is also a one in four possibility that it would require revision surgery. And of course, I ended up needing that too. So everything was delayed, including a hurricane knocking out power, but in the end I was able to finally complete radiation just last week.

The AUS works, that's about all I can say about that. Things did not go well, but such is life. This is all in my blog at CSN if you click on the link under my name or at www.cancercoupleblog.com/?view=magazine... BY THE WAY, a couple things. First, it is possible to do too much Kegeling. My coach was all about doing more and more. I now wonder if perhaps that may have been counterproductive. Now that the AUS is in and done, I am regaining some additional control of my natural sphincter, and I am still getting accustomed to coordinating the two.

And secondly, speaking of what is done, I would recommend that you NEVER question the fact that you had surgery. It won't do anything but stir up guilt in your own mind that you may have done something wrong, but what's done is done and cannot be undone. You made the best decision that you could at the time using the information you had available and under your circumstances at the time. Sometimes you just gotta make a decision and go with it, without looking back and second guessing.
Posted 10/17/2017 2:36 PM (GMT 0)

RobLee said...
rdener, dry nights.....TENS device to stimulate the pelvic floor.....

.....You made the best decision that you could at the time using the information you had available and under your circumstances at the time. Sometimes you just gotta make a decision and go with it, without looking back and second guessing.

Rob....your thinking is crystal clear and your advise is spot on!

Interesting that I was dry for my first 7 weeks post surgery, but have had some leakage for the past 7 weeks, predominately overnight. Backwards for me, as usual.

Did you consider purchasing a TENS unit? about $150, I think, but I
haven't seen credible data on how effective it is.

Your experience and advise about decision making is critically important with this disease when so much is known, but where so much more is unknown. My heart goes out to those who research and soul search constantly...searching for the 'best', 'perfect', answer that doesn't exist. Sometimes an excess of time to make a choice works against brothers, compounding confusion and causing stress...which leads to inflammation...which feeds those nasty cancer cells. It's a vicious cycle.
Posted 10/17/2017 4:46 PM (GMT 0)
TA I like the mindfulness and therapy suggestion. Thanks Denis
Posted 10/18/2017 2:27 PM (GMT 0)
Happy B'day Denis. Lousy PCa present aside, as Steve Martin would say... 'you look Fabulous'! I do wish you the best while finalizing your decision. I think we are a lot alike in our emotional research roller coaster but can say I am in the home stretch of Tx approvals and scheduling and much of the early anxiety has disappeared.

Re: Mindfulness, this was an interesting topic at my most recent support group meeting. It has proved helpful to some so I began looking for more info to see if there may be benefit to my DW (she just completed cancer Tx too mad) and myself. I found a very recent publication that proved an interesting read here: journals.sagepub.com/doi/10.1177/1745691617709589

Take care. -D
Posted 10/18/2017 3:03 PM (GMT 0)
Notam, I have personal evidence that when I take time to be mindful/meditate I am in better spirits. Thanks, Denis
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