What started out to be my yearly physical early 2015 led me to the urologist's office on October 6th, to hear him say the words, "you have prostate cancer." What I heard him say was - "I am handing you a death sentence."
I had just turned 52 three weeks before this visit and all I could think about was the end. I didn't hear anything he said, I didn't hear his instructions, I didn't hear his optimistic spin on how lucky I was that it was caught early - I just sat there and stared. I occasionally looked down at the paper he handed me - the Memorial Sloane Kettering Cancer Center letterhead of a report entitled, Pre-Radical Prostatectomy - Probability of Cancer-Specific Survival Rates. And I kept thinking, "I'm in the wrong place." He spent an hour with me going over another piece of paper that had the names of surgeons, options, radiology oncologists, hormone therapy physicians, cancer counselor references, support groups, patients willing to speak to me, Johns Hopkins' doctors, etc.
I came to when he raised his voice to get my attention and said, "What I can't have you do, is go away like you are doing right now." He stopped speaking as I refocused, then continued – "I can see you are not here with me right now, come back in 3 weeks after you've done research, called people on this paper, met with doctors, even after you've called me at 3 in the morning because you can't sleep and you have a question. You are very lucky you have a lot of treatment options; your Gleason score is low; you're young and in good health (otherwise!) so you can fight this disease; at your age your survival rate is very high, well into your 80's – 90's based on your overall health."
My doctor advised me that active surveillance wasn't a prime option given the rate my PSA climbed from 2.5 in 2014 (yearly physical) to 4.3 in April 2015, to 5.1 in June 2015, to 5.5 in August 2015. My biopsy was performed on 28 September. I had 2 cores out of 12 marked as cancerous.
It was here that I fired a barrage of questions – "I'm really young to get this diagnosis aren't I? Like what? 15 years younger than the average man? The side effects short and long term suck, don't they? I could wear a diaper for the rest of my life, right? I may never have another erection for the rest of my life, right? What the hell do I care about living to be 80 with effects like these? All the options lead to the same end, don't they?" I stood up and said, "I have to get out of here." He stood with me and said he was walking me to the appointment desk to make sure I scheduled my follow-on. I think I scared him at the speed in which I went from shock to anger. He asked me several times did I need to talk further, was there someone in the waiting area, etc. I thought about slugging him but I liked him and he had been my urologist for a long time – given I was a kidney stone sufferer – and I needed him at this moment so I couldn't harm him!
Over the next 3 weeks I researched, I made appointments with Hopkins doctors; ruled out surgery; saw radiology oncologists; ruled out hormone therapy; saw a cancer counselor to vent and cry; went to a men's support group one week after diagnosis and in the middle of the session – blubbered like a baby at the stories being told, thinking about my plight, looking at these men – I was the youngest man there – and these men discussed amongst themselves about how they didn't have erections, some wore diapers, and they were pissed about it but in the end resigned at the hand they were dealt. I was so depressed I am not going to lie - I thought about suicide a lot. At a point within those 3 weeks, I was ready to die from the cancer fully functioning than living 30 more years and not be functioning sexually or being diaper free.
If I felt like I was in this alone – it was by my own design. I told no one at work what kind of cancer I had – I wasn't in the mood to share and be talked about – this was probably one of the most personal cancers I could think of and I wasn't sharing Viagra or Depends stories with people at work – I didn't tell friends, I didn't tell my mother and sisters until after Thanksgiving – to say I wasn't coping was the understatement of the year. I had my immediate family, wife and adult son, on a gag order – they couldn't tell anyone either – at a time when I couldn't control my health I was sure as hell going to control what I divulged about my diagnosis. At one of my cancer counselor sessions the therapist reminded me that in order to have a healthy and strong support group one needed to talk about the issue with actual people – that's how support groups work – thanks I was a little fuzzy on that point. I write this last sentence snidely, but it did serve as the catalyst and I started opening up to more people.
I met a man (through a friend whom I allowed to be in the trusted circle) who had a prostatectomy in May of 2015 and this friend arranged a dinner where I candidly discussed everything with the man from boners to peeing; nothing was sacred or off limits. He confessed he did very little research and that his Gleason score and the cores affected were a lot higher than mine. He told me there was absolutely no stirring on the erection front but at least he did not have any urinary side effects.
I carried a 4 inch binder everywhere I went with data, appointments, business cards, lab reports, treatment options and even a poem I wrote about how I was feeling. I was teased a lot about the book by receptionists, patients in the waiting room, even my doctor said he had to get a picture of the largest book a patient has ever carried. Funny guy.
My doctor was also involved with a 'new' treatment that no one wanted to talk about – HIFU High Intensity Focused Ultrasound. Basically burning your prostate thus burning the cancer. It was not approved by the FDA, no one was writing about it, no one was recommending it, books had very little to say about it - yet I kept being drawn to the procedure. I knew I would have to go to Mexico or Bahamas to have it done, insurance was not going to cover the $25,000 expenses; in other words nothing was easy about having this procedure – so it was fate that I happen to be one of the most stubborn people I know and no one was going to tell me I couldn't have it as an option. Everything I read (that I could find anyway) stated side effects were minimal. On my 3 week follow-up I mentioned to my doctor I wanted HIFU – he smiled and looked pleased that I wanted that procedure – because he believes it will be the procedure of choice once everyone gets on board and insurances start covering it and data starts showing its great outcomes over time. Here is where fate comes in – two weeks before my follow up, the FDA had approved it to be performed in the United States and my doctor was personal friends with one of the foremost surgeons practicing HIFU – Dr. Stephen Scionti.
I spoke to Dr. Scionti early November, he had a practice in Sarasota, Florida and was taking delivery of the HIFU equipment early December to start performing it in the US. After reviewing my case, he told me there was one catch – my prostate was on the large side so he wanted my doctor to perform a vaporization of the prostate before I had HIFU. It was basically a laser inserted, yes there, and he would strip my prostate tissue. It would be outpatient and recovery was a day or two. The procedure went well but it was my first time with a catheter – hated it – I demanded it be removed the Wednesday before Thanksgiving (a day early) because a lot of people still did not know I had cancer so I couldn't fake a catheter. He reluctantly agreed but cautioned me the ER was a horrible place to visit over a holiday all because a person couldn't pee. No issues over Thanksgiving other than telling my family I had cancer – I at least waited until the Friday after to tell them, that is what I kept telling myself when I was reminded by my wife about ruining people's holiday with bad/sad news.
My wife and I flew to Sarasota, stayed at the Ritz Carlton (fabulous care was given when I told them I was having an outpatient procedure – they couldn't have been nicer making sure we were comfortable, kitchen/room service was available for anything I needed, refrigerator placed in the room, etc.) don't skimp on convalescence – my motto. I even had my local urology doctor fly down with me to get experience (he wanted to open a HIFU treatment center with his practice) and to 'hold my hand' through the procedure - I had to fly back with a catheter which I was not happy about but Dr. Scionti refused to be bullied to let me remove it as much as I tried to persuade him. I had HIFU performed on Saturday, December 19, flew back Tuesday morning; catheter removed Wednesday morning, the 23rd – Merry Christmas to me.
The even better pre-Christmas present occurred early Sunday morning, the 20th, a day after HIFU, I was awakened by a pulling on my penis – a sharp pain – it was the catheter tube stretching because I was getting an erection – hello morning wood – to end all erections! I awakened my wife showed her my present and we both cried.
I was Dr. Scionti's 8th patient to undergo HIFU within those 2 short weeks after installing the equipment – what does that tell you about men wanting a better quality of life treatment option? He told me he was booking the procedures at a record speed. The day I had the procedure a urology doctor from Virginia was booked after me!
I have not had any problems with erections, I get them when I want them, and I have not had any impotence issues whatsoever. I believe my erections are as strong and hard as before the procedure. I am still cautious with sexual activity because emotionally I am still coping with a lot of stuff. I have urgent pee moments when I feel I can't hold it any longer and make mad dashes to the nearest urinal. I am told that the spasms will relax and truth is – it's better than when I first had the procedure, incredibly better. I would sometimes spurt a couple of drops unexpectedly and wore a man's pee pad the first 3 or 4 months after HIFU. After I had an orgasm, I would sometimes dribble urine soon after the orgasm subsided so that is why I am still a little gun shy. My biggest adjustment and it goes back to why I am having limited sexual activity is the fact I have dry orgasms. I can no longer ejaculate given my prostate was fried. As a man in my early 50's I could still have powerful explosions – my wife sometimes made jokes about the headboard or nightstand; but no more. And I think that took the longest to get used to for me – for some strange reason. When I spoke to a guy who had HIFU 5 years ago – he confided that the dry orgasm bothered him for a year at least - I may beat that record. My orgasms can be just as intense as before – and then sometimes they feel lighter, like the explosion was diffused. But I really can't complain when I researched and read about so many men not having erections at all and the options to correct that issue were emotionally and financially draining – injections, pumps and costly drugs.
I am certain about one thing – that I am so happy I chose HIFU as my treatment option. I am glad I had a doctor who was conversant in the procedure, I am glad I could afford it (though I would have taken out a loan) and I'm glad I had someone I could talk to who underwent HIFU. I consider myself the luckiest man in the world.
After my HIFU procedure in December 2015, I was told that I would have my PSA checked 4 times in 2016 - 90 days, 180 days, 270 days and 1 year marker periods. It was also common for HIFU patients to take a while to reach their baseline. Given our prostates were ablated, and not removed we could still have active tissue remaining; it wouldn't be a lot of tissue but something may still produce PSA levels.
My March 2016 PSA was 1.3 down from 5.5 when I was diagnosed. As an overachiever, I was disappointed it wasn't below 1 but my doctor said this number was going in the correct direction. And then he told me to stop being an overachiever! Funny guy.
My June (180 days) 2016 PSA level was 1.2; I was devastated. My level had only dropped 0.1 and I was nowhere near my goal (like I had anything to do with achieving an arbitrary goal, but still!) of having a PSA level under 1.0! I remembered how I kept constantly checking my email (from my phone) for my lab results the two or three or four days after my blood was drawn; desperately wanting to see a 'better' number. I was at my friend's house (the guy who set up the dinner with another friend of his who had his prostate removed) when the lab results hit my email. I opened the document and was crestfallen when I stared at the number, 1.2! How could I have only dropped 0.1?! What a cruel joke to be played – didn't 'someone' know how anxious I was leading up to this blood test? And then checking my email waiting (high school dating all over again!) for a hopeful number. I didn't say anything to my friend when he sensed my mood had changed and asked what was wrong. I made excuses of not feeling well and left shortly thereafter. The next 3 or so days, until I saw my doctor, were horrible. I sulked, moped, questioned if I made the correct choice, second-guessed information, and even scoured YANA stories of similar cases to see if I was 'normal' – what a mess I was all over again.
When my doctor walked into the room and handed me the lab result, he almost mumbled, "Your number is 1.2 for a PSA level." I thought he was going to cry.
I looked at him and said – "It's not a great number, is it?"
He sat down and looked right at me and said, "It's disappointing, yes. I was hoping for a lower score."
I continued, "March's number of 1.3 wasn't good either, was it? I should be lower."
He looked straight at me, and said, "I spoke to Dr. Scionti about your numbers, he's not worried in the least. He said some guys take a full year to reach their nadir number. We are not at the panic stage yet. It's going in the right direction and yes, I'm pissed you're not lower – but you will be. I have 9 of you HIFU guys under my care – I want this to be right for all of you and I have to admit, when I see any of your names attached to a lab result, I close my eyes and say a prayer before I open the document." His attempt to make me smile and feel better worked.
He was so earnest in his conversation with me I knew he made sense in everything he said and that he was dedicated to do everything to see us survive. The fact we talked for another 30 minutes (not a clock watcher, this guy) made me feel better; I wasn't rushed or skirted out of the office.
He reaffirmed that if I had chosen surgery/removal of my prostate and my numbers were 1.3, 1.2, etc. he would be more concerned. He told me again that I may still have tissue producing PSA. I felt better when we talked about more positive things like peeing. How was I doing? Still having urgent issues? No? Good! No pads? Great! How were my erections? Hard! Excellent! How are you doing mentally with dry orgasms? Are you coping better? Etc. When we were through I did feel better – he told me at least three more times not to worry, September was right around the corner!
As much as I trusted him, and as much as I still felt I made the right decision, July and August were tough – PSA numbers seep into your very core. You may be at the office, driving, watching a film – when all of a sudden you think PSA?! I looked at men at the office differently, wondering what their PSA scores were! Can you say obsessive compulsive?! It's nerve-wracking and draining. As Tom Petty once sang, "The Waiting is the Hardest Part."
My September (270 days) 2016 PSA level was 0.6!! I cannot begin to tell you what a difference an insignificant number (by the standards of what most men care about) can make on one's psyche!
I felt as if I had been given my life back – I could finally put an end to the nights lying awake wondering if the cancer was still creeping around in my body; had it spread? Every time I felt a back twinge – was it in my bones? What if HIFU left too much living tissue? And in that living tissue, what if it still had cancer in it and it was growing back, spreading? Was I ever going to be able to squelch the common anxiety most men felt as they approached testing time after being treated for their prostate cancer?
Could I resume a 'normal' life again? The word 'normal' surfaces from time to time and I process the word differently now. When I spoke frankly to my doctor immediately following my treatment I spoke about my feelings dealing with dry orgasms and how I felt I lost a big part of what sexually defined men (in my opinion); somehow I felt damaged or broken. He nodded and simply stated, "You need to accept your new normal if you want to psychologically heal. This is your new normal."
As I come to grips with that statement and I repeat it often to myself when I'm being maudlin or feeling depressed. I realize that 0.6 is a wonderful number and it's a number that relaxes me for now; but what about the next time? When I go in for my December (360 days) blood test, will the angst surface all over again? Will I have anxious, sleepless nights waiting for the results? Will I be able to suppress the anxiety? Then it dawned on me – at certain testing times of the year – and for the rest of my life - are these feelings of anxiousness my new normal?
I started writing this update on December 8th - something unexplainable compelled me to collect these thoughts at that moment and not wait for any lab results.
I chose December 19th to have my (quarterly-360 day) blood drawn to coincide with my 1 year anniversary of having HIFU to eradicate my cancer. It was an attempt to be cathartic; as well as reflect on the journey I've been on since October 6, 2015 when I was officially told I had cancer.
Over these past 15 months-
I have corresponded with a couple of guys from this website and they have been wonderful in helping me wrap my head around this ordeal. Thank you.
I hope I can do the same in the future for other guys that will (sadly) join our club.
I spoke at a support group, heralding the benefits of HIFU and the fact I have been able to have erections, and not experience any long term bathroom incontinence. I've labeled myself a success in terms of side effects. Although I continue to battle with my insurance provider for reimbursement - 3 rejections so far; but I have a team from the HIFU office working with me to get at least some portion of reimbursement.
I have 'come out' to more people telling them I had cancer – although I still can't bring myself to tell people what kind I had – I still cannot be that personal (yet) with some people who are very close to me – and I realize I've hurt some of them in shrouding my ordeal in secrecy, but I can't let them in without potentially exposing myself in a connection to the very personal side effects; maybe one day. Silly? Maybe - but at this point, I can't help myself from feeling this way.
In an attempt to help me cope with stress, I left my current position and took a position less stressful, less corporate, less 'in the fray' of the corporation – a real ego bust for me but I decided in the July/August timeframe when my PSA numbers were still high (my opinion) that I needed to ratchet back and not be so stressed when it came to my position and career. Since making that decision and coming to terms with moving to a position of less prominence, my September number decreased – coincidence? Who will know? But it's done and I feel good about the decision.
I have my doctor's appointment on the 23rd to go over the PSA score. As the day approaches – the office visit plays over and over in my mind – when I am home, driving, in the office – as I carry on with normal, every day functions – a scenario plays out of how I will deal with a rising PSA score; I can't explain this feeling so that it logically makes sense. As testing time approaches, one's mind takes on an uncontrollable turn of irrational, illogical, doomsday thinking; will this ever change as I enter my second year cancer free? Or my third? Fourth? And how presumptuous am I to think I am cancer free? See? I can't shake these feelings yet; will I ever be able to find peace? I guess that depends on what the numbers are at my anniversary date.
I just came back from my doctor's appointment and my PSA level increased 0.3 – from 0.6 to 0.9. I am not going to pretend that I'm not disappointed or that I'm not bothered. And yet I suspected I would have an increase, so why am I shocked? Did I basically curse myself with negative energy thinking that my scores would increase? Crazy right? Did my worrying and anxiousness cause the elevated score?
My doctor told me he was not worried – I have to admit, I thought, "well, you didn't have cancer, of course you're not worried." I realized I was being harsh and was lashing out and acting like a child. He told me that my 'start to worry' number is 1.8 and the fact I was 0.9 I was not at the worry level. He told me I was okay – and the back pain I was experiencing was not tumor related, lesion related, cancer related – it was most likely muscular. The CT scan and x-ray taken earlier in November showed no mass or anything suspicious. He did tell me that he wouldn't let me go until June (the initial testing timeline) before another blood test that in fact I was going to be tested in March; just to be sure.
The inability to control this aspect (PSA levels) of my life has me depressed. There is absolutely nothing I can do about this score! My doctor did advise me to refrain from any sexual activity 2 or 3 days before the test (which I do), but other than that – I am completely pissed I can't influence this number – not by diet, or any other activity, or anything that I can think of or read about; nothing will allow me to sway or influence this number – it' so confounding. Which leads me to...
...a maybe not so different or unconnected issue; I thought about my hair. Yeah, stay with me – it will connect to my situation, I promise.
Last year, when I was told I had cancer I made a conscious effort to not have my hair cut. I was a fanatic when it came to getting a haircut – every month, same short, professional looking style – never swayed from the usual, etc. But for some reason, I could not explain why I was doing it, I stopped going to the barber. November 2015, December 2015, March 2016, May 2016, and on and on – I did not get my hair cut.
Working in a professional setting I was the recipient of many comments – but given my position – no one would ever tell me I needed a haircut or that it was demanded. My family made comments, friends, everyone made a comment as to why have I suddenly gone rogue? Comments referring me to a mad scientist (I work with many researchers); have I gone hippie; to comments made by my son about hanging out with South America soccer players were thrown around and made; people were baffled. I had to use a lot of gel in the beginning, and I wore my hair slicked back – it's dark and wavy so it curled and took on a life of its own if it wasn't tamed or controlled by the gel.
When I was home, I used a hairband until sometime in October of 2016 I showed up in the office wearing a ponytail. More comments were made and my son actually began calling me by some famous (but unknown to me) South American or Portuguese soccer player?! Kids are great!
One day, a colleague (who knows about my health situation) asked me, "Why aren't you getting your hair cut?"
I blurted out without even thinking, "It's something I can control."
When I said it I looked up at her and I knew my face had a shocked look of revelation and she stared right at me and said quietly, "Okay." We didn't say anything else about it.
So, in the last analysis for this quarter, on my one year anniversary of being treated for cancer, it has come down to control for me, plain and simple. I knew it was there, my family and friends most likely knew it was there, hell some of you reading my updates probably knew it was there. What can I and what can't I control in regards to my battle with cancer? As I wrestle with this, I'll wait (patiently?) and see what the March 2017 testing brings; I will try and be less stressful, I will try to enjoy what I've been blessed with in my life, and I will try and take things one day at a time. Anything else is beyond my control.
Tony's e-mail address is: firstname.lastname@example.org