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a man looks at his own shadow and it

Treatment Regrets?

Hindsight is twenty-twenty, and sometimes it can be hell. I’m almost always upbeat in my articles, but if I’m not totally truthful there’s no point in writing them. So here goes.

Deciding on a treatment plan

I was diagnosed with prostate cancer in March of 2017. My PSA was 7.1, my Gleason Score was a 3+3, cancer cells were found in 10 of 12 blind biopsy core samples. The cancer had not spread outside my prostate. I chose active surveillance as my treatment and started learning more about prostate cancer.

I learned that a Gleason Score of 6 falls into the moderately differentiated cancer or moderately aggressive category. I also learned that a PSA of less than 10, a Gleason Score of 6, and a stage of T1c to T2a qualify for active surveillance, but that the presence of cancer cells in 10 samples is a bit of a wild card in deciding on treatment. So my treatment would include quarterly PSA tests and another biopsy one year after diagnosis.

Navigating other health complications

In 2010, while still working as a high school principal, I experienced symptoms that led to a diagnosis of coronary artery disease, the installation of a stent in the left anterior descending artery, also known as the widow maker, and the beginning of daily intake of aspirin and a statin. In 2012 I had a mild heart attack, the discovery of a third blocked artery, a second stent.

At the time of my prostate cancer diagnosis, I was experiencing severe pain in my neck that led to a diagnosis of degenerative disc disease and surgery to remove a disc, fuse two vertebrae, and shave bone spurs that were compressing my spinal cord.

Driven by fear and worry

I mention these two conditions because, along with the jolt of the cancer diagnosis, they contributed to what I look back on now as a very vulnerable stage of my life and a state of mind that was driven to some degree by fear. I was sixty-nine, retired, a grandfather, an active person, but mortality occupied more and more of my thoughts. I wasn’t morbid, just, I think, mildly depressed, wondering, “What’s next?”

In December of 2017, I started attending a prostate cancer support group. It was then that I learned how individual each man’s journey with the disease is, that there is no such thing as cancer light and that decisions about treatment can reflect physical reality but also mental reality. Over any period of time, how much does a cancer diagnosis work on one’s mental health, regardless of the numbers applied to it?

Weighing my new treatment options

My nine month PSA test showed an increase to 8.3. It was still within the active surveillance range, but it got my attention. I was due for another biopsy in a couple of months, and I had been investigating radiation and surgery options just in case I had to choose one in the future. Other factors contributing to my state of mind included the thoughts and feelings of family and friends. You might say that I was weighing the scientific evidence against my emotional condition and the scales were tipping toward the latter.

Prior to my second biopsy, in a moment of what I thought was clarity at the time, I decided to have radical laparoscopic surgery. I was thoroughly aware of the potential side effects, but I trusted my doctor, who was a veteran with the Da Vinci process. I had taken decisive action with heart disease and degenerative disc disease. I would do the same with prostate cancer. I was confident that the side effects if I experienced them, would be treatable and temporary. I had surgery on April 16, 2018.

Side effects on side effects

My last PSA score was <0.004. Mission accomplished in that respect. But the side effects have not been temporary. Now seventy-one and happily married for thirty-eight years, my wife and I have made adjustments in our intimate life that reflect my degree of erectile dysfunction. In many ways, we’ve become closer, especially since she joined me in retirement last year.

Incontinence is the bigger issue. It’s quite manageable and really only a problem when I’m exercising, but, despite kegeling, healing has not been complete. It hasn’t really altered my lifestyle, but it’s a relatively constant mental presence, one that has a voice in my head saying, “You should have stayed on active surveillance. You made a big mistake.” Lately, that voice has been a little louder than usual, especially during those dark hours before dawn when bad thoughts tend to crowd out the good.

Hindsight can be hell

Maybe a little of that depression that I experienced a couple of years ago has crept back in. Maybe it’s a mild case of Seasonal Affective Disorder. I’ve been through this before and I know the things I can to overcome it. Writing this article is one of them. Staying active and in the present is another. Hindsight can be hell, but I can put that behind me as well. My life is too good to dwell on the past. I think I’ll go bake some cookies.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Bill
    6 days ago

    @will-jones
    Only a few ‘light duty’ pads in 10 days.??
    Not sure I’d do any surgery. YouTube has video’s of the ATOMS procedure. Watch the short 2 minute animated one first. Then the others. Recovery from Any of these implant surgeries is going to be painful. With ATOMS they cut you open from the bottom of your Nut-Sack to the top of your Asshole. They pry you apart, the helical tunneler device is just painful to watch. But, you’ll have 100% Bladder control. And, this one has the best track record. I have zero bladder control so this is my choice. Doctor wants to give me 6 more months and is sending me to therapy. Have you been to therapy.?? There are many steps in therapy. The thing that is most effective, according to a friend of mine, is the electrical probe they stick up your Asshole. It works exactly like the TENS units that stimulate external muscles. You just lay there and it contracts then relaxes the pelvic floor muscle, thereby strengthening it. Doesn’t hurt. They turn it up to just the point of being uncomfortable, then back it down a bit. My friend was like me, fully incontinent. After 4 sessions he began to improve. Don’t know how many sessions he did, but now he only wears a pad in his undies for “drips” And he does those Kegel exercises daily. Don’t know where you live, but in Dallas it’s hard to find Pelvic Floor Rehab Centers that take male patients. Rosipal Institute takes boys as well as girls.
    The technique is the same, except with girls they insert a much bigger probe into the Pussy-Hole. Many girls undergo this procedure after child birth and stuff like that. They consider this the ‘gold standard’ of regaining bladder control. IF you’re uncomfortable with strangers poking things up your Asshole, or IF you must travel long distance to find a facility that does boys; there’s a home version of the multi-thousand dollar professional version sold on Amazon. It’s called K – stim for men. It costs $159.99 and I ordered one. However, they sent the one for girls, so I sent it back and now waiting for the boy one. Actually it was my fault. I **think** I ordered the wrong one. So if you choose to order one, be careful you get the right one. Just pay attention to the probe. The one for Assholes is tiny, about the size of a roll of dimes. The one for Pussyholes is way larger, not round. Anyway, good luck to you. Keep in touch and I’ll let you know how I do once I start therapy. I am a Veteran, so this is being outsourced by the VA, and all kinda approval and paperwork is necessary so it may be a-while before I actually start therapy.

  • Will Jones moderator author
    5 days ago

    Thanks for your followup reply, Bill. I appreciate the details about therapy. I went to USC for some pelvic floor help last year that included an anal sensor to record the strength of my muscles for kegeling. It helped, but it wasn’t the same as what you describe. Depending on how things progress, I will look into it further, talk to my urologist at my next appointment. One thing I know for sure: no additional surgery or implants for me.

  • Bill
    1 week ago

    You did the right thing in having your prostate removed. The cancer would have only became worse over time. With your other medical conditions, there would have came a point whereby they could not operate on you.
    ATOMS is an implant that will totally fix your bladder problems. They’ll try and sell you on others, but ATOMS is the best one.
    An alternative to diapers is condom catheters.

  • Will Jones moderator author
    7 days ago

    Thanks, @bill. I’ll check into ATOMS. Just came back from a trip where I only used four lightweight shields in seven days. Sometimes I’m ready for further treatment, sometimes I’m ok with where I am. In truth, I’m a little bit wary of yet another procedure. Maybe that will change over time.

  • ereyes13
    1 week ago

    Hi, in 2017, at age 55, i was diagnosed with prostrate cancer. I have 4 grown kids and no grandkid at that time. As i researched my options, i decided on active surveillance. The thought of having surgery side effects made the option unappealing. My gleason score was 6, 3×3 so my doc was in agreement with my decision.
    Anyway, after a year of active surveillance, i got to thinking “what am i waiting for”, why not deal with cancer. I was thinking, id wait but what if it spreads? So i had Da Vinci surgery. My doctor is confident it was all in my prostate and got it all. So far all follow up PSA have been undetectable. I do have the side effects. I wear one pad daily, which i can live with. Impotency is also an issue i struggle to accept. I fan get erection with penis injection. It works well but now intimacy has to be planned. At 57 this is the toughest to deal with.
    Then again, we now have a grandson and i know I have done my best to deal with my cancer. I would have hated to wait before treatments only to have it spread.
    Cancer is no fun and I figured id make the best decision i can and live it with.
    Hang it there and know there are others like us that made a choice and go on with life.

    Good luck,
    Ed Reyes

  • Dennis Golden moderator
    6 days ago

    A low Gleason is always good and less likely to return soon. That said this disease hits us all differently. My business partner had a similar score to yours is still ok 15 years later after his surgery.

    Always best to follow your instinct with this disease along with the advice of your MD. Lots of guys in my support group report good results with the injections for erections. Most are a bit concerned at first but get over it once they gain some experience with the process

    Another alternative —is to sign up for an implant. While it is a surgical procedure, the guys who have gone that route and are really really happy with the outcome. They report that the on-demand results quick – eliminating the need to plan – and as one guy said “there are no concerns with any embarrassing issues along the way”

    Like you I decided on living longer and had the surgery and later radiation. In the process I also now have deeper relationship with my wife. All good to say the least.

    … Dennis (ProstateCancer.net TEAM)

  • Will Jones moderator author
    7 days ago

    Thanks for sharing your story, Ed. We have a lot of similarities. Being 71 makes it a little easier to deal with the side effects. I’ve not tried anything other than pills for the ED, but the truth is my wife and I are satisfied with the intimate life we have even after my surgery. Life is good and 90% of the time my mood reflects it. As you say, I can live with it.

  • tipton321
    1 week ago

    I understand what you are going through I have had the same regrets about whether I rushed my decision to have di vinci surgery based on the belief that it would work out. I have been 100 % impotent since 2012 and none of their gadgets and gizmos seem to really help. I am unmarried and the loneliness and isolation is very difficult. In 2012 there were fewer options and I was basically told that with a G7 3×4 T2b surgery or radiation were my only option. I though that by now I would be able to accept this but it is becoming more and more difficult as time goes on.

  • Dennis Golden moderator
    6 days ago

    If you have tried and have not been successful with other options such as pills, pumps, shots or Muse Intra-Urethral you may want to consider a penile implant – check out http://www.mayoclinic.org › penile-implants › about › pac-20384916

    Guys in our group have reported great success. Dennis (ProstateCancer.net Team)

  • Will Jones moderator author
    7 days ago

    Thanks @tipton321 for your support and for sharing your story. I’m sorry for the challenges you face in relation to the side effects and being alone. I hope you’ll stay close to our ProstateCancer.net community. I’m sure many would benefit from hearing your whole story if you’re willing to share it. I’m grateful every day that neither my cancer nor my heart problems were worse. I count my blessings when I get down from time-to-time. It works. Take care, Will

  • Eduardo1
    1 week ago

    tipton321 –

    I had RP in 2007. I agree; not many options years ago. In fact, I regard them as profit seeking and barbaric. I just wanted to validate your feelings of isolation and loneliness. I live with it like a second skin. We don’t discuss this ‘side-effect’ enough. Hang in there as best you can. Take care.

  • Will Jones moderator author
    7 days ago

    Your second skin metaphor is a good one, Eduardo. I hope all men in our situation will learn to share their feelings about prostate cancer, the available treatments and the side effects. Even in my support group, which is very safe, men are reluctant to share their feelings very deeply. I appreciate your honest and compassionate reply to tipton321’s share.

  • Oldspice
    1 week ago

    I am about to begin my treatment for my prostate cancer is a new treatment here in Houston called proton therapy I talked to the doctor and he let me know all the side effects to expect kind of nervous but I’m ready to get this started and get rid of this cancer wish me luck

  • Will Jones moderator author
    7 days ago

    Good luck, @oldspice. I considered proton therapy but in the end opted for surgery. I hope you get the results you’re looking for. Most of all, I hope that your first PSA, and all PSAs, after treatment are <0.004, like mine!

  • pfadtag
    1 week ago

    Great advice
    Do something fun today rather than regret the past
    Regarding your incontinence-
    Has anyone mentioned the possible of implanting an artificial urinary sphincter?
    I had one done 3 years ago and it immeasurably improved my quality of life
    From changing 6 thick pads a day even while wearing an adult diaper to only one medium pad a day worn with my regular underwear
    Talk to your urologist about this

  • Will Jones moderator author
    7 days ago

    Thanks @pfadtag. I’m fortunate that I rarely go through more than one lightweight shield per day. On many days, when I’m not too active, I don’t need any shields at all. I’ve discussed options with my urologist, but for right now I’ll stick with the status quo. Glad you had such good results!

  • kenneth1955
    1 week ago

    Hey Well.

    I think you just let the cancer get the best for you. You could have went for another few years with no problem. But it is to late not. You just have to deal with what you have now. You will be fine. Just relax and enjoy your life go go back in time what could have been.

    Just take day by day.

    Take care…..Ken

  • Will Jones moderator author
    7 days ago

    Thanks Ken. Good advice. I appreciate your support.

  • Dennis Golden moderator
    2 weeks ago

    As someone who has experienced some of the joys of prostate cancer and the treatment process,I agree with you on the decision process.

    Prior to my diagnosis I was pretty comfortable going into a doctor’s office with an issue and having him offer a solution. “Go home and rest and take some aspirin” If I had a sinus infection etc. a prescription was called in and I took round of antibiotics and was told to call in if things do not clear up. And of course things always got better.

    The killer cures he prescribed were the worst. They were the great pieces of medical advice that told me to cut back on the carbs and throw away the sweets and salt shaker. Well over time I actually listened and those cures worked as well.

    Then came a prostate cancer diagnosis. Those 4 words “you have prostate cancer” hit like a ton of bricks. I felt like Charlie Brown in class hearing the famous “wah wah” voice of Miss Othmar – the beloved teacher of the Peanuts gang.

    As the fog cleared my urologist asked me what course of action I wanted to take with my Gleason 9 cancer treatment. There we sit my wife and I as the most uninformed decision makers in the room making life changing decisions.

    Did I make the right one when I chose surgery? Who knows? That said I made a decision back in 2013 for surgery and once again in 2018 when my “cured” cancer returned and needed to be “zapped” with radiation. Right choice?

    Today I simply move on.

    Yup… I get the occasion leak when picking up something heavy or God forbid when I quietly try to pass some gas. Yup… my sex life is no longer like a 20 year old. Then again I will be 77 this year and the reality is …some parts of me just decided to take early retirement.

    I have decided to move on in life and accept that things are just different – not better or worse – just different. They are what they are.

    Looking back does no good so like you I embrace today and look forward to tomorrow and what ever it bring.

    I believe doubt, depression and stress are a natural part of any cancer diagnosis. I now expect it. I understand it …and embrace it as part of this crazy journey.

    That said … I do not accept it as part of my life. I do my best every day to put it behind me where it belongs. … Dennis(ProstateCancer.net Team)

  • Will Jones moderator author
    7 days ago

    Thanks, Dennis. I appreciate the detail in which you respond to posts on ProstateCancer.net and on the Facebook page. Acceptance is a word that has been in my vocabulary for a long time. It has helped me get through any number of trying circumstances. When I couple it with the right action, the results are usually good, even if they aren’t exactly what I wanted them to be. That’s life, right?

  • Dennis Golden moderator
    2 weeks ago

    As someone who has experienced some of the joys of prostate cancer and the treatment process,I agree with you on the decision process.

    Prior to my diagnosis I was pretty comfortable going into a doctor’s office with an issue and having him offer a solution. “Go home and rest and take some aspirin” If I had a sinus infection etc. a prescription was called in and I took round of antibiotics and was told to call in if things do not clear up. And of course things always got better.

    The killer cures he prescribed were the worst. They were the pieces of medical advice that told me to cut back on the carbs and throw away the sweets and salt shaker. Well over time I actually listened and those cures worked as well.

    Then came a prostate cancer diagnosis. Those 4 words “you have prostate cancer” hit like a ton of bricks. I felt like Charlie Brown in class hearing the famous “wah wah” voice of Miss Othmar – the beloved teacher of the Peanuts gang.

    As the fog cleared my urologist asked me what course of action I wanted to take with my Gleason 9 cancer treatment. There we sit my wife and I as the most uninformed decision makers in the room making life changing decisions.

    Did I make the right one when I chose surgery? Who knows? That said I made a decision back in 2013 or surgery and once again in 2018 when my “cured” cancer returned and needed to be “zapped” with radiation. Right choice?

    Today I simply move on.

    Yup… I get the occasion leak when picking up something heavy or God forbid quietly try to pass some gas. Yup… my sex life is no longer like a 20 year old. Then again I will be 77 this year and the reality is some parts of me just decide to take early retirement.

    I have decided to move on in life and accept that things are just different – not better or worse – just different. They are what they are. Looking back does me no good so like you I embrace today and look forward to tomorrow and what ever it bring.

    I believe doubt, depression and stress are a natural part of any cancer diagnosis. I now expect it. I understand it and embrace it as part of this crazy journey.

    That said … I do not accept it as part of my life. I do my best every day to put it behind me where it belongs. … Dennis(ProstateCancer.net Team)

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