Sunday, February 17, 2013

Prostate Cancer Treatment Decisions

Feeding the seagulls this morning at Rehoboth Beach

Oh how I wish I could post something today that is light and upbeat.  The best I can do is post this picture of sea gulls that I took early this morning at Rehoboth Beach.  I had some left over Panera bread in my freezer that I was never going to eat (I'm not a bread person) so I decided to feed the sea gulls on this cold February morning.  They appreciate it plus I can take some new photos.

If it wasn't so cold (27 degrees) and windy this morning I would have taken a walk on the boardwalk but that was out of the question this morning.  In fact, the parking lot where I parked my car was an ice rink.  Not the ideal conditions for a morning walk.  Plus, I have yet another nagging cold.  

Yes, I have another cold.  This one is a head cold.  My sinuses are the repository this time of the cold/flu infection instead of my lungs like my last cold.  Thank God my sinuses are draining but still I feel washed out and my nose is raw from blowing it.  

So here is where I am on my decision for what kind of treatment for my prostate cancer.  After talking to some more men, including two "Riches" (a coincidence), I have just about decided to have my prostate removed and be done with it.  

Of course in any kind of treatment there are upsides and downsides.  The main downside to a radical prostatectomy is incontinence.  In other words I would be wearing a diaper for a certain period of time. This possibility was the main reason I decided not to get a prostate biopsy last year.  I met a man at a friend's Christmas dinner who had his prostate removed.  He was wearing Depends.  He said "Well, I don't have cancer anymore." Of course I was freaked out and cancelled my biopsy appointment.  

All year I lived with this dark cloud hanging over my head.  This year I decided to get the biopsy after I had more urinary problems.  My results came back that six of the twelve samples indicated cancer. 

My urologist strongly recommended radiation therapy.  He said "You don't want to be wearing a diaper for four months do you?" Of course I didn't.

When I got home I checked with my neighbor Rich (the first "Rich").  Last summer he underwent the twelve week regimen of radiation.  Quite frankly he looked like death warmed over during this period.  All gray and washed out.  He is 76 years old.  He looks good now though.  He told me that his PSA score was down and he should be good "until it comes back", which he said it will.  "Until it comes back?"  Do I want the cancer to come back?  I guess it will as long as those cancer cells are floating around your prostate gland.  The thinking here is that an older man will die of something else before he dies of prostate cancer.  

Yesterday I called a friend of a friend who had his prostate removed.  He is doing fine now but right after his surgery he was incontinent for two months.  He said another man he knew was incontinent for nine months.  So "one size doesn't fit all" which I am finding out during my research.

He strongly recommended removal of the prostate.  He said he didn't like his body radiated and just wanted to be rid of the cancer and possible return.  

This morning I talked to my friend Rich (the second "Rich") who had his prostate removed six years ago when he was 64 years old.  He said he wore a catheter for five days (over a long weekend) but wasn't incontinent at all. He said all his functions returned, including sexual.  In Rich's case he sought out a doctor who had a lot of experience with prostate removal.  

I think that is the key, get a doctor who is very experienced.  Last night I was on the Internet checking out the Johns Hopkins website.  Johns Hopkins Medical is only two hours away from where I live and one of the best medical facilities for prostate treatment.  A friend of mine said he would take me there.  This is too much for Bill and I have no experience driving in cities, especially one I'm not familiar with.  

So this is what I have decided.  Tomorrow I will call Johns Hopkins and tell them my situation.  I would like them to evaluate my medical records and give me a second opinion.  There is a slim chance that I don't have prostate cancer.  This is what happened with my cousin Steve Tipton.  He was all set to have his prostate removed and when he went to another doctor ("Dr. Magic Hands" he called him because Steve was concerned about losing his sexual function), that doctor reviewed his medical records and said he didn't have prostate cancer!  He said he had prostatitis, an infection of the prostate and thus did not have to have any treatment.  I don't think I'll be that lucky but I am going to get a second opinion first.

If it is confirmed that I have prostate cancer, then I will ask if I am a good candidate for prostate removal.  At 71 years of age, I am right on the cusp of those older men for whom prostate removal is not recommended, especially men who don't have good health.  Other than this nasty head cold I have now, I am in good health.  

So that's where I am now folks: tomorrow I will arrange to have my medical records transferred to Johns Hopkins for a second opinion.  If I do have prostate cancer then I will ask if I can have it removed.  I want to be done with this cancer and get my life back to normal.  

Thanks to all of you who have taken the time to comment on my previous posting on this subject.  I appreciate your concern, it is very comforting during this stressful time.  

20 comments:

  1. I got my second opinion from GW University's Lombardi Cancer Center; they confirmed with my GYN told me and I had my plumbing removed. 24 years later, still cancer free and kicking ass!

    you have nothing to lose by getting this second opinion. and don't let JH tell you no, they won't review your records! you still have many asses to kick too! :)

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    1. Anne Marie,

      I don't think there will be a problem with Johns Hopkins reviewing my records. They indicate as much on their website by saying to send the records to them. I'm sure I'm not the first person to make this request. I sure as hell don't want to go through another biopsy.

      I'm with you on getting the "plumbing removed" and be done with it once and for all. I don't want to live the rest of my life trying to outlive the prostate cancer returning.

      Now if I can just get rid of this cold.

      Ron

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  2. I am glad you will get a second opinion and make sure the surgeon has a lot of prostate removal surgeries experience "under his belt". Take one step at a time and all will be just fine. John Hopkins was the name I tried to remember in yesterday's comment.

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    1. Nadege,

      I'm definitely getting a second opinion. I start that procedure tomorrow. As you say, I take "one step at a time." That's what I always do when confronted with a challenging situation like this. I know no other way to handle it.

      Thank you for your concern.

      Ron

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  3. Ron, Many people would be paralyzed right now. I'm glad you're able to be decisive about this. My friend had the same experience as your second friend. All of his functions returned.

    The surgeon who did his surgery did not use a DaVinci robot. It was done by hand, specifically to preserve as many of the nerves as possible. The key seems to be finding a skilled surgeon.

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    1. Sean,

      I'm not paralyzed but I am confused and concerned. In situations like this I just weigh all my options and hope I choose the best one. I'm lucky in that I've never panicked in situations like this. I just do what has to be done.

      I still haven't made a decision though. First thing is to get a second opinion. Thank you for your concern.

      Ron

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    2. Ron, A second opinion is a good first step. All anyone can do is weigh their options and make the best decision based on the information he or she has.

      I feel the same way you do about totally trusting hospitals (or anything that's profit-driven for that matter.)

      Keep your chin up. Good night!

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    3. Sean,

      I do not trust profit driven hospitals, absolutely not. After talking to some other prostate cancer survivors, I'm pretty sure I'm going to take radiation therapy for my prostate cancer.

      Thank you for your concern.

      Ron

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  4. Ron, when dealing with major medical decisions, it is always best to get a second or even a third opinion. What I think is even more important is to use doctors and a facility that does a huge number of the procedures with good outcomes. It looks like that is the route you are taking. So best wishes to you as you move forward . . .

    David

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    1. David,

      Tomorrow, first thing I'm calling Johns Hopkins for the procedure to transfer my medical records for them to review. A second opinion is definitely called for here in this major decision in my life. Also, Johns Hopkins does many prostate procedures. I just have to make sure that if I go the route of having my prostate removed, that the doctor actually does and not an intern. I hate to say this, but ever since I almost lost my life during a routine hernia operations when I was 17 years old, I've never been able to fully trust hospitals or doctors since.

      Ron

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  5. Ron, I'm hesitant to add my two cents to this because - unlike some of your other friends - I have had no first-hand experience. I do think that it's a VERY good thing to get a second opinion and consult with a doctor who has a lot of expertise in this.

    I think my father had partial prostate removal, and I don't remember him ever having any serious problems with incontinence (he never wore a diaper).

    My Uncle Frank is in his 80's and had the radiation therapy last year. It does take about twelve weeks. I suppose he was miserable, but he got through it with flying colors.

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    1. Jon,

      I've pretty well made up my mind after talking to some other prostate cancer survivors. I think I'm going to go the radiation therapy route. I just don't want to take the chance of being incontinent the rest of my life or impotent. I still have some good years left and I would like them to be quality years.

      Ron

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  6. I know this is a difficult decision to make, but at least you are going about it the right way: gathering all the information you can, and getting more than one professional opinion. You are correct, prostate surgery has come a long way, and while I didn't know about the "temporary" incontinence, I did know that they can work around the nerves that feed "down there" so there is no loss of sexual function. Thank goodness for that.

    I continue to send positive thoughts and energy your way. I pray for you and Bill. I am sure you've got many years of healthy living in front of you!

    Peace <3
    Jay

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    1. Jay,

      You're right, this is a difficult decision, perhaps one of the most difficult of my life. After more research and consultation with other prostate cancer survivors, I've pretty well made up my mind to go with the radiation treatment. I just don't want to take the chance of being incontinent for months or the rest of my life.

      Thank you for your concern.

      Ron

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  7. when my father got his news at 59, his doctor recommended getting it removed; his four sons agreed not to pussyfoot around and do this. It went quite well/he's not had any further problems or complications. He's 76 now.
    If your option is removal, I hope yours is as good.

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    1. Dr. Spo,

      I was going to get my prostate removed but now after more consultation with others who have had prostate removal and radiation, I think I will go with the radiation therapy. I just don't want to take the chance of incontinence. Those who have had their prostate removed were under 70 years of age. Johns Hopkins does not recommend prostate removal for men over 70. For younger men, yes but not for older men. This is a hard decision for me to make but I think I've made it. Thank you for your concern.

      Ron

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  8. Anonymous2:52 AM

    Ron, Hopkins is the best for prostate cancer. The only thing I will warn you about is that Hopkins is in a bad neighborhood. Never park on the street there; only in a parking garage. You are safe within the medical campus.
    Lynne

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    1. Lynne,

      Thank you for this advice. I probably won't go to Johns Hopkins now because after more research I'm pretty sure I'm going to go with the radiation treatment. I just don't want to take the chance of incontinence.

      Ron

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  9. Best to get a second opinion, I always say, just in case.
    And best to have all the facts at your disposal.
    The hard part will be the decision making, but with all the facts at hand I'm guessing you'll make the one that rights for you.
    Still, we're sending positive energy your way.

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  10. Bob,

    I've made my decision after reviewing the fact, risks and talking to others who have had prostate cancer treatment. I'm going to go the radiation route because of my age (71).

    Thank you so much for your support and encouragement.

    Ron

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