How to Keep from Driving Yourself Crazy: 1st Part Getting Over Denial

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richard0460
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Date Joined Feb 2011
Total Posts : 49
   Posted 4/4/2011 1:23 AM (GMT -6)   
Hi Everyone
I just completed seeds treatment for PC and in my previous life I was a clinical psychologist. Im going to write a number of posts if there is interest on how I handled my emotions and what you might do to handle yours. Despite the title of this post, I at times did stress myself out over this disease and rode the emotional rollercoaster, so I dont mean to suggest I know it all-- just that I learned a few things. It will help me get it off my chest and may be of some use to you. Please post your own thoughts on how to stay reasonably calm to deal with it when you can't be "together". That may sound contradictory but it is perfectly predicatable despite your best efforts you may erupt anger, sink into sadness and grief or start feeling kind of paranoid about the disease and the medical profession.

Please post your thoughts. I'm not sensitive to people disagreeing.

1. Get Over Your Denial: PC seems perfectly designed to unhinge your emotions. Sure my PSA jumbed up from 3 to 4.8 when I was on testosterone replacement therapy but I didnt think I needed a biopsy, after all there are people all over the internet saying that you shouldn't even have a PSA test because it leads to overtreatment and if you have PC you dont need to treat it because other diseases will kill you before PC. This kind of info worked perfectly into my hating the idea of a punch needle being shot into my prostate for biopsy that would tell me for sure if I had PC. I think some of us would just as soon not know because then we dont have to deal with it. No one wants to have cancer and for sure no guy wants to have cancer anywhere near his d___k! My denial started to breakdown when I found going off Testosterone Replacment only reduced my PSA slightly and two different urologists including one from UCLA told me I needed a biopsy. I argued that no one could feel it on digital rectal exam. The way I got myself to do the biopsy was by telling myself I wasnt going to do it. I found a rad onc named Duke Bahn in Ventura, Ca who did color doppler ultrasound and said I might not need the biopsy and that it was my choice once I had the doppler. That attitude of empowering me to make decisions made me definitely trust him. It is so tempting with this disease to feel at the mercy of your biology or of the medical profession or even of longer term survivors who have all kinds of opinions about which way to go. Dr. Bahn did the color doppler ultrasound (can see the blood flow of the tumors while a normal ultrasound cannot) which was effortless except while I am laying there watching the monitor my prostate comes up on the screen with all these red glowing places. crap I new this was not good. Dr. Bahn very calmly commented "These are some areas that we may want to investigate. After swearing I wouldnt have a biopsy, I readily agreed after seeing the red outines of the tumor for the first time. I do not regreat that decision. Dr. Bahn called me a week later and told me I had PC and that it needed treatment because it was Gleason 7.

I acted perfectly calm on the phone with Duke Bahn and for one hour afterwards, then the fear began to set in and a frantic need to find out everything.
More in my next post. How did denial go for you?
Best
Richard



63 Gl 7 3+4 (30%) Diagnosed Sept 2010. Endorectal Tesla MRI showed no ECE's or Sem Ves involvement. Bonkhoff immunoassay of biopsy material confirmed fairly non aggressive disease, brother has PC and mother Bladder Cancer, ADT Nov 2010 thru March 2011 March 30 Seeds Peter Grimm,M.D., PC Onc Stephen Strum, M.D.

JNF
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Date Joined Dec 2010
Total Posts : 3888
   Posted 4/4/2011 7:24 AM (GMT -6)   
Welcome Richard, I am looking forward to your contributions and wish you the best with your treatment.

No denial for me, it was never an issue. My wife had just had a double masectomy (her second breast cancer in 15 years) and said to me "it has been two years, go get a physical". So I did, and was handed a PSA of 59. It doesn't take much high level research to know that is a problem. Within two weeks I had the urologist DRE (felt a nodule, gp didn't), a biopsy, a diagnosis, and had made at least three appointments for additional opinions.

Since my wife was going through something far more surgically invasive then I probably would and her chemo and radiation was already scheduled; and since my PSA was not even something to discuss... I took it very matter-of-factly and said "it is what it is. Now let's get on with beating it." No denial.

My unprofessional advice as to the denial is to be matter of fact....not matter of feeling, or wonderiing, or wishing or hoping.

Of the men I know that have gone through this the ones that moved most decisiveily and quickly were men that had military traing and service. They seemed to see it in the overall scheme and were taught early on to make a factual assessment and then determine the best course of action to stay alive. I think that attitude is waranted whether it is bullets or PCa that is flying.

I did not have such training or service, but my circumstances were that it was about my wife....not about me. If she could be doing what she was doing....who was I to be in denial??

Richard, I applaud your addition to the site and no doubt will help many men with the denial that affects some but not all. I will be very interested in your views as to working through the potentially serious effects of Hormone Therapy as so many men become very depressed. This is my personal concern as I expect to be on HT for at least another year.

Welcome aboard and it is good to see your progress. Our dx and treatment timeline is very similar.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard shot and daily Jalyn started on 10-7-2010.
IMRT to prostate and lymph nodes 25 fractions started on 11-8-2010, HDR Brachytherapy 12-6 and 13-2010.
PSA <.1 and T 23 on 2-3-2011.

JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 4/4/2011 10:45 AM (GMT -6)   
Richard,

No denial for me. For that I credit my GP who has seen me for the past 10 years. He explained to me a long time ago the reasons for PSA tests and the odds that all men may develop some level of PC if they live long enough. I was, therefore, not totally surprised when I was dx in late 2009. The stress level for me was not learning that I had it...it was more about the treatment choice. Now that I am past that, I'm just plannng to watch our grandkids grow up and enjoy every day.

I'm sure your experiences will be a help to many who are starting down this road. Regards,

Joe
Age 68 PSA 4.5 Biopsy 9/4/09 Bostwick Labs 5 of 8 sections (5 of 11 cores) positive-Gleason 3+3=6 Stage T1
BT on 12/11/09 (84 seeds of Palladium 103) Home same day/no catheter. Some burning, frequency, urgency for 6 weeks. No incontinence, mild ED. Normal activity within 3 days. 25 IGRT sessions ending 3/22/10 - some fatigue until 30 days after last treatment. PSA as of 12/9/10 - 0.1

medved
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Date Joined Nov 2009
Total Posts : 1100
   Posted 4/4/2011 11:42 AM (GMT -6)   
Richard - this was, of course, not the subject of your post, but I will ask you anyway, if you don't mind:  how did you come to the decision to be treated with seeds (as opposed to some other treatment such as proton, IMRT, surgery, etc.).  I am particularly interested in your decision making because your signature shows that you have some pretty high-end medical advisors (Strum, Bonkoff, Grimm, Duke Bahn...   (By the way, is Dr. Strum still practicing medicine, or  has he retired?)

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 4/4/2011 12:37 PM (GMT -6)   
Richard:
 
Good post. I was never in denial and I never went through the "why me" phase.
 
But, frankly, what really irks me is the fact that I've done everything right. I got annual physicals and as soon as my PSA suddenyl jumped from 2.97 to 4.01 I got right on it. I got second opinions and other tests (see signature). But my biopsy showed an significant PC and my pathology confirmed matters. It upsets me that we didn't catch it at some earlier stage.
 
Mel

Ziggy9
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Date Joined Jul 2008
Total Posts : 981
   Posted 4/4/2011 12:44 PM (GMT -6)   
I have to say I've never seen denial being a big issue here or with anyone I know who has PCa. Anger sure but not denial

Post Edited (Ziggy9) : 4/4/2011 11:52:27 AM (GMT-6)


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4276
   Posted 4/4/2011 1:15 PM (GMT -6)   
Richard, welcome to HW...I'll look forward to your series of posts.
 
For me the denial phase was short-lived, i.e. it pretty well ended during the session with my urologist wherein we first discussed my cancer and my options.  My first hope was that the pathology was wrong..."why don't we send it to another lab?'.  His response that he always uses the "best" (his opinion of Bostwick) shot down that hope.  My second was that maybe I should just watchful-wait.  The doc dicsussed my Gleason and the Hopkins criteria for Active Surveillance and that shot down my second hope.
 
After that I focused on finding the right treatment for me and denial was returned to its' rightful place as a river in Egypt (and other African countries for geography buffs).
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

Ed C. (Old67)
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Date Joined Jan 2009
Total Posts : 2461
   Posted 4/4/2011 1:18 PM (GMT -6)   
Richard,
Thanks for posting your personal experience with PCa. I'm looking forward to your future posts on the subject.
For me, denial was not an issue at all. My GP suggested that I see a urologist due to an increase in my PSA from one year to the next. I immediately schedule an appointment with a Urologist, had another PSA and free PSA test. The result was not encouraging. I scheduled a biopsy shortly after and surgery 6 weeks after the biopsy result showe that I had an aggressive Gleason 8 PCa.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18, 21 months) undetectable
Latest PSA test (2 years) <.008 ?

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/4/2011 3:03 PM (GMT -6)   
there was no denying it.

The first week I'd only not think of it while I was sleeping and then waking up only to remember it all over again.

I started thinking about it a lot less progressively as I decided on which treatment to have, after selecting my surgeon, after the surgery, and after my first 0 PSA reading.

richard0460
Regular Member


Date Joined Feb 2011
Total Posts : 49
   Posted 4/6/2011 7:35 PM (GMT -6)   
Thanks JNF, David, Zig, Tud, Ed Mel and Joel et al-- all you guys for the warm welcome. I think denial was pretty minimal for you. Denial literally means turning off the awareness of truth in one's own mind. You have obviously faced the truth and taken action. Lets go on to the 2nd Stage since thats the way my organized psychologist/ writer brain works.

2. Reacting and Overreacting. I was every frightened by the diagnosis and wanted to take action (I was an Army and Naval Officer (psych) I became obsessed with knowing everything about PC and with in one week post diagnosis attended the PCRI meeting at LAX. It freaked me out at first and I came home crying the first day but I meet a ton of good guys who were recovering as well as their docs: Strum, Scholz, Myers etc. But I was overwhelmed and wanted to make a decision quickly even though everyone around me told me to totally slow down until I could make an informed decision. I realized I actually knew very little. I went to USC Norris and saw a surgeon and he said "You are the perfect candidate" but I kept hearing about BT. My buddy had it 10 years ago with Gl 7 4+3 a little more aggressive than mine. He also had EBRT and ADT. But he was there for me and kept feeding me info, support groups and on line sites. I realized I needed someone not so invested in the decision and I found Strum's number in Oregon thinking I would set up an appt with him to discuss options. To my surprise he came on the phone and spent an hour with me. I hired him to advise. Now I calmed down a bit. I had to take in the truth that PC is the least aggressive of the cancers that most men get and is totally treatable and yet it can be deadly if it gets out of control outside the prostate. Strum suggested extensive testing, supplements to improve my immunte system and worked to empower me by not telling me what to do but laying out several options. One was a trial of ADT as a possible long term treatment with the goal of 5-10 years of psa nadir. I tried it and hated the sexual and emotional sideeffects of Lupron.

JNF: I get your concern about being on HT for a year. That was my concern but I was willing to at least try it knowing with my intermedidate level of disease and no obvious sign (endorectal MRI) of ECE's or seminal vesicle involvement. Unfortunately for me I tried it and my quality of life went into the crapter. I was crying twice a day and erupting in rage at the wrong times in addition to being a eunoch (though that only happend for maybe six weeks). Strum had me on Cialis and dostinex and I could masterbate and have orgasm for the first 6 weeks of it but not much desire to even try. But Strum tells me my reaction was more extreme than the vast majority of guys to ADT long term. My buddy who had seeds and ADT 10 years ago got depressed but says he would do it again. Another worry I had was John Mulhall's warning about ADT last longer than 4 months possibly doing lasting harm to the penis. But I dont think there are good studies and I of course have no personal experience with it.

Everyone reacts to the diagnosis. Some of us overreact and make impulsvie decisions. The trick is not to go back to a different kind of denial-- where we pretend we are not afraid or we pretend that we quickly know what to do or we pretend that getting this over with as soon as possible is a good idea. It helps to acknowledge what you are feeling and thinking-- even the nutty crap that goes through our minds-- and reason it out with someone we trust. Some times we get really nutty (meaning me) and need help from a psych or we need to take a med that helps us calm down or be less depressed or help us sleep. It also helps to learn ways of managing the stress of it all. Exercize made a major difference in how I felt-- elevated mood. But we will talk more about that in the next installment.

Keep chiming in guys. I hope I responded to the comments you have made.
Best wishes
Richard

richard0460
Regular Member


Date Joined Feb 2011
Total Posts : 49
   Posted 4/6/2011 7:50 PM (GMT -6)   
JNF
See my previous post in the middle meant for you. But I have thought more of what I would do if had to do long term ADT. It for me would be doing a huge change of attitude about sexuality and intimacy. I would clue my partner in on whats coming and make sure there was a major support system there with him and from my friends. I know I would need both and would want all parties who are in that support system to know what to likely expect to happen with me from the ADT and be prepared to offer support. Emotional, humor, foods, medical expertise, whatever you think you might need so everyone is preparing with you. It helped that numerous people would call me or be available to talk when I felt the worst. I personally found that staying very active: working out 6 days a week helped my mood. Did not stop the crying but gave me many hours of the day when I was okay. Massage also elevated my mood and gave me more of a sense of wellbeing. I also found that THC in a food form took away a lot of the malaise and depression but I only discovered this late in ADT after I already decided to stop Lupron. I would definitely being getting legal thc and use it daily-- when not driving-- to lesson some of the symptoms. This is also a spiritual journey on ADT in handling a basic shift in your life experience. Its a great time to draw closer to your Highger Power whatever that means in your life. Just my thoughts.
Best wishes to you
Richard

60Michael
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Date Joined Jan 2009
Total Posts : 2243
   Posted 4/6/2011 8:50 PM (GMT -6)   
Good post Richard and welcome aboard. Denial is one of those sneaky things that can be lying in the bushes and you never see it. I probably had it, but really cant recall. Shed a tear or two when I called my wife with the news as I just knew that I wouldnt have cancer. So that was the point of "why me." Once it sank in then I began to educate myself about PCa and it eventually lead me to this site. But I really have to say that my treatment choice was made from reading books and listening to friends who had PCa. Military thinking is usually black and white, but there is so much gray matter in this disease that hopefully one can think outside of the box and look at all options. When I had  the BCR once again I couldnt imagine the reality of the news as my thought process was that, I can beat anything. Will deal with HT if need be, but not something that I look forward to.
Michael

compiler
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Date Joined Nov 2009
Total Posts : 7270
   Posted 4/6/2011 10:00 PM (GMT -6)   
Richard:
 
Excellent posts. I feel you are leading us in an interesting group therapy session here.
 
I actually immersed myself in seeking out PC information before I was dx. I had a PCA-3 test before the biopsy and that strongly pointed to PC. By the time I got the dx., I had a comprehensive consultation plan in place. If I waited until after the dx., I think I would have been a basket case, not thinking clearly. I know how I function and for me it is better to anticipate the worst and have a plan.
 
Frankly, I was much more shattered when I had my recent BCR.
 
Mel 

richard0460
Regular Member


Date Joined Feb 2011
Total Posts : 49
   Posted 4/7/2011 12:40 AM (GMT -6)   
Michael and Mel
To show how really new I am at this despite the hours and hours of research, I had to google what BCR is: biochemical cancer reocurrence. When I heard, my heart sank because of course I have the fear of the same thing-- and you guys are now experiencing it. I hope you will talk about what you are going through in depth if you want to. Im no longer in practice as a psychologist so I am not a therapist in any way but I can be a fellow PC guy and a friend and maybe deal with my own fears at the same time. As I was weighing treatment strategies during my reaction phase to the diagnosis, I began the process of accepting that I might have a life threatening disease. This meant dealing with my own death which I did not want to deal with at all-- who does. But lets face it most of us are over 60 so even before my PC diagnosis I was fully aware that my life was a lot more than half over and that I was headed down the slippery slope of the other side of life. But then PC made me truly start to think about what I would want to have happen if I knew it was coming soon. It helped me a lot with my fear of dying or being sick and in pain, that I met a guy at a prostate support group who had been a Navy pilot during the Viet Nam war (the same time I was stationed in hospitals here in the US) He has metastatic prostate cancer and is in his 70's. When I met him he looked 50 because he takes care of himself and is living his life to the fullest. He keeps his med records meticulously, he becomes a expert on new and old therapies and he makes it his business to help other guys. He seemed content even happy though I am sure he has his days. We had both spent a lot of time (not at the same time) in Pattaya, Thailand carousing in our past so we had a lot in common. He told me what it was like to be on ADT with humor and accuracy and listened to my goals and helped me sift through the info. Knowing my stage and wishes to stay sexually active he definitely discouraged RP and of course wondered outloud how I would like ADT but more than that he gave me a model for what I could be like if the worst happens. My Partin says its 30-40% chance of being ECE, sem ves or lymph nodes but the extensive testing by Strum makes that number likely much smaller -----nevertheless--it could happen and I accept that. If it happens, I suspect I will be down for the count for awhile. Yet what I learned from my pilot friend is that I would live my life to the fullest no matter what and that I will live my life to fullest now whether I am cured or not. What we all have is right now. It is the only time and place we can be happy or miserable. The past is over and the future does not exist. When I am in the eternal now of my life I am usually very happy. Sometimes the now is painful but it is usually because I have tried to bring the past or the future into the now--- and it ruins the moment or at least distracts me from the gifts of the everyday: my papyrus plants going crazy with life in my yard, my Cavalier Spaniel laying her head on my lap and rolling those big eyes at me, my partner holding me in the night and whispering that he loves me, one of my 11 grand children visiting and running screaming through the house chasing the dog. And writing this to you now-- what a joy!
Richard

reachout
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Date Joined May 2009
Total Posts : 739
   Posted 4/7/2011 8:11 AM (GMT -6)   
Great posts, Richard.
I guess I'm one of the few here who went through initial denial. I didn't even know what PSA stood for the first time my doc, in a routine physical, told me mine was 4.1, my free PSA was 12%, I had around a 40% chance of having prostate cancer, and referred me to a urologist for a biopsy. My initial reaction was that this was crazy, I had no symptoms, and the tests must have been incorrect. Nonetheless, I saw the urologist who recommended a biopsy. I turned him down, still in denial, and did a lot of my own numerical analyses (my field is math/stat) to show that the numbers must have been incorrect. The urologist put me on antibiotics in case it was an infection, I got retested in several months, and my PSA had dropped to 2.6, vindicating my denial. At that point I felt pretty good about my own powers of reasoning vs jumping to crazy conclusions.

I put PC out of my mind entirely until the next yearly PSA which showed a rise to the high 3's, but still figured it was anomalous. The year after that my PSA had risen to 5.6 and it finally hit me like a ton of bricks -- I probably have prostate cancer! I went back to the urologist with a sense of humility and this time, interestingly, he was the one who suggested we watch it for a while longer because of the way it had gone down at first. But, having faced reality, I insisted on a biopsy which came back with Gleason 7 and pretty high volume cancer. In fact, it was potentially so aggressive that even the seeds guy suggested I have surgery to increase my odds of a complete cure, which I did do.

After surgery I did very well, no leakage, ED managed through trimix, and undetectable PSAs for the first 15 months. I only had anxiety for the first PSA, and after that my wife had to remind me that I needed the next one. However, I just got blood drawn for my 18 month PSA and for some reason my anxiety began increasing a month ago and the fear of BCR has been weighing heavily on my mind. My pathology increased my condition to G 4+3 with a small amount of tertiary 5 and, even though it was contained with negative margins, I fear that some small celll had already escaped, is growing, and will let me know years later. I'll get my results in a few days and, if still zero, I hope the anxiety will once again decrease. In fact, if zero, I think I will go to 6 month intervals to enjoy a longer period between PSAs.

Thanks again for your posts, and for the oppportunity to share the mental aspects of this disease. We discuss the physical aspects a great deal, but not so much the mental.
Age: 66
Pre-surgery PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Post-surgery PSA one year of zeros.
Continent right away.
Viagra and other pills only gave me headache
Trimix working great!

davidg
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Date Joined Feb 2011
Total Posts : 4093
   Posted 4/7/2011 8:21 AM (GMT -6)   
the mental aspect of the entire process/disease are a challenge to control/master. I look forward to hearing what I am sure will be good news for you in a couple of days. Some of us will always be anxious, I'm surprised I didn't get full blown anxiety attacks from this whole thing.
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