Things to consider before treating prostate cancer.

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I don't have any signs of prostate cancer yet, but I am aware that most men will eventually contract it if they live long enough. I am also aware of the consequences of radical prostatectomy that other members of this forum are suffering from.

I read this report in today's newsletter from "The Peoples Pharmacy" that I found very interesting, so I thought I would share it in case it might help other men.

Are We Overtreating Prostate Cancer?

A diagnosis of prostate cancer creates anxiety. Many men tell their urologists to "get it out." But are we overtreating prostate cancer?

www.peoplespharmacy.com

In brief, it analyzed several diverse studies from around the world. They all seemed to conclude that it would be better to wait before trying to eradicate the cancer.

I also found the comments from readers helpful, especially the one that recommended that we should "...follow the money" and do our own research. He found the "CyberKnife" treatment. It is the same thing that was used to kill my wife's deep brain tumor in 1998. Back then the treatment was called a "Gamma Knife", and it worked great for her.

 

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Well, at 53 I was diagnosed and the cancer was bulging on one side of my prostate. PSA was rising rapidly, so I sure hope I made right decision for the prostatectomy 1 1/2 years ago. Got 2 opinions and both say get it out 100%. But what else would they say? American Cancer Society says 1 in 40 men die FROM prostate cancer, and it’s not a pleasant way to go. Sure miss my super penis though, as does my wife. I like to think my surgery was not optional, but who knows.

Study is something to think about.

 

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This is not a new point of view/study. It is somewhat misleading in my view. PSA testing is not reliable as some people have cancer without a rise in PSA, prostate cancer can move a lot quicker than doctors acknowledge and certainly a lot quicker than the UK NHS. Surveillance is right for some people but is going to cause a huge amount of stress and you cant be sure when you do need treatment that you will be able to get it. It is quite possible to have your prostate removed and be continent three months later and sexually capable eight months after surgery. If you delay treatment you are more likely to face chemotherapy and hormone therapy, and generally people want to avoid that.

All just my opinion based on my own experience. I will not be at all offended if people disagree-we all have different journeys.

 

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I echo Cajunfisherman’s comments. At 48, I sure didn’t expect prostate cancer but 1 year later post RP, I’m essentially back to normal. One inch loss in length isn’t great but it’s still functional. fingers crossed many healthy years ahead for all of us!

 

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What an interesting article! Especially the comments. Not sure it would have prevented me from RP (my gleason was 6/6 and second biopsy showed cancer in 4/22 samples vs 1/12 in the first biopsy) but I might have waited at least another year. Then again, after reading one of the comments ( the 1 involving 3 generations) maybe not! Such an unpredictable disease.

 

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Yes I picked up a recent study that seemed to suggest more Active Surveillance before deciding to treat with surgery or radio. My Gleason score was 3+4 and I was told it needed to be treated. As we all recognise the side effects are not pleasant. However, recently I spoke to a man who had just been diagnosed. After a bone scan it turns out there are three spots on his pelvic bone. I wonder would he advocate not being treated earlier if he had known. It's tricky decision for all of us who have to face it.

 

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It’s a difficult decision for anyone to make. I am 58 and had had my RP in September of last year. Happy the cancer is gone but do miss the ability to have an erection. Still holding out hope things will get better. Incontinence much better and now down to one pad/day.

 

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Corrected my numbers below from previous post- my fingers too fat on first post!
“What an interesting article! Especially the comments. Not sure it would have prevented me from RP (my gleason was 3/3 and second biopsy showed cancer in 4/12 samples vs 1/12 in the first biopsy) but I might have waited at least another year. Then again, after reading one of the comments ( the 1 involving 3 generations) maybe not! Such an unpredictable disease.”

 

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I had never had a PSA until a few weeks before turning 57. PSA was 10.2 I think. Biopsy showed a Gleason score 4+3 and 3+3 two separate tumors. Was felt on DRE on one side. Surgery was the only option really that worked. Cyber knife was possible but too expensive and wasn’t sure it would be covered by insurance as well as robotic surgery. Went to Vanderbilt had a surgeon that had performed the surgery over 10,000 times. So far so good 2.25 years ago and PSA remaining undetectable. 90+% continent. Still get so sound asleep that I may have an accident if I drink too much diet soda or sweet tea. Erections with penile injections. Partial erections without anything. Loss of size in girth and length. Would I do it all again? Absolutely. Best wishes to all. Make your own well advised decisions.

 

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@Aginghippy Most men on this form disagree with you about regaining continents in sexual function. They do not. Just because you did, doesn’t mean everyone else is going to be that lucky.

 

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I think if I had to make the choice again about having a partial hysterectomy because of cancer, even knowing now what I know about how shitty premature menopause is and having the top third of my vagina removed, I would still probably go through with it. It changed my entire life, including my personality for the worse. Changed my hope and outlook for the worse. But hey, I’m still alive, and I likely wouldn’t have been because my cancer was extremely aggressive. That was five years ago.

 

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I did active surveillance for 10 years. The last 5 years MRIs were added to PSA testing (every 6 months). I was biopsied several times when PSA bumped up, eventually a few small lesions, not near the margins, were found; when grade reached Gleason 4+3, I decided to get RP - that was in 9/22. I did not want the cancer to become more aggressive and move outside the prostate, which would mean radiation, maybe hormones, after RP. Six months from surgery, I have incontinence (one or two pads/day, one pull up overnight) and loss of sexual function so far, though I’m working on both issues. So far PSA has been undetectable, and my surgeon believes that it should stay that way. No way to know the outcome if I waited longer. I was 73 at the time of surgery, but healthy, i.e. something else not likely to kill me before prostate cancer metastasized.

 

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In 2014 my PSA rose slightly at age 66, but my urologist was, as was I, convinced that watchful waiting was the mode of treatment, unfortunately. Then a home sale and 3K move cross country deviated my attention from prostate, as I followed the watchful waiting without concern. In new state 2017 sought new urologist, who recommended biopsy immediately based upon paternal genetics. Thankfully, he found very aggressive cancer. 3 months later 2018 RP with no return of cancer PSA at <0.1 more than 5 years later. Only regret is ED and mild incontinence. Hopefully done with cutting and other surgical procedures. Too bad about watchful waiting, probably increasing severity of many cancer victims. Do biopsies when PSA rises.

 

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I have had several passed from protste cancer. Teh newwe treatments a lot more effective. I would not lose any sleep over it. Most likely the Lord will call you home from something else. No worries. I read your article-thanks for posting it.

 

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My experience. Slightly high PSA so went for biopsy in 2015 at age 56. Found Gleason 6. Surgeon said take it out. Went to Mayo for second opinion. They said no hurry so went on active surveillance for 8 years. A couple MRIs and biopsies and a $5000 genetic test(which said very low risk) in that time. PSA kept rising even though biopsies said still Gleason 6. When it hit 15 we decided to do the RP. Pathology rated the cancer as 3+5, so some of the worst kind in there. Totally contained but even so the chances of recurrence are much higher with the presence of Gleason 5. Surgery 6 weeks ago. Normal side effects at this point. Wait it out and hope it improves. Point is, even with the MRI guided biopsies at Mayo, they missed the aggressive cancer. Decision to treat can be tricky.

 

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Everyone’s perspective is different, I have six grandchildren and one on the way, they are my life, I want to be around to see them grow up. When I was diagnosed with pc last year at 69, my reaction was I had to get rid of the cancer. I had pelvic/nerve pain for years and then started to have urinary urge, frequency problems and extreme lack of sleep. My primary goal was to get more sleep and get lower pelvic pain. I had the prostate removed in September, it was not completely contained but nothing showed in the lymph nodes or nodules. My post PSA shows no cancer so far.
The pelvic pain near where the prostate was disappeared but I got bad pelvic pain in the rectum area giving me fecal incontinence and pain sitting and pain from the urinary sphincter area. I was doing Kegels and it hurt me to do them. I went for physical therapy, they stopped the Kegels, found trigger points and gave me pelvic stretching. I got better and only had minor pain sitting on a donut and some pain which seemed to be coming from the external sphincter. I learned was pelvic pain was worsened by stress and the muscles in the pelvic area had to be stretched and relaxed. I started the Kegels again and my pelvic pain sitting became worse again and the pain from the area of the external sphincter make me feel I have to go all the time. I wake in the morning with a stomach ache which is pain emanatingfrom the sphincter area and it goes away when I go. I get spiking pains and throbbing pains which are intense. The pain stops me from doing my walks at time. The nerve seems to intensify all muscle sensitivity in the pelvic area.
Again I had to prioritize and my goal is to lessen the pain. I stopped my Kegels and am doing my pelvic stretching. I am getting a little better. I am trying to get less stress. The pain is causing stress and the incontinence is causing stress. I am controlling the incontinence with briefs which is providing good protection but I worry about what others close to me think. The pain level slowly getting better helps my stress too

As I said above decisions are made based on each persons circumstances. After surgery I was very happy the cancer was gone. I have complete erectile dis function but this is not important to me. If I could lower the pelvic pain I would be very happy and hopefully this will lower my stress so I can more enjoy my grandchildren. I am able to control and live with incontinence.
I wish everybody happiness. PC causes stress and working on accepting which ever way you decide to go helps whether it is monitoring, surgery, ADT, or radiation. Always remember the good things in your life, with me it is my grandchildren. Best wishes to all

 

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In June I will have my 6 yr. anniversary since my prostatectomy/bladder diverticulectomy. I had green light Lazer surgery in 2008. I am incontinent and wear full tape on diapers during the day, and cloth pin on diapers at night. Since my prostatectomy I have developed a number of heart failure issues,and most recently a number of lumbar stenosis problems. I thinking my back problems have worsened my incontinence. In addition, I lost my wife suddenly this past August from creutzfeldt-jakob disease. I'm 75 years old. Needing to wear diapers is no big deal. However, losing my wife is a very big deal.

 

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God bless you. Loving a loved one is so hard.

 

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Anxiety, your side effects are very unusual I think. Just goes to show that while the statistics point to likely outcomes, no one can ever be certain. I pray your pain lessens and the medical folk come up with satisfactory treatment. You are so right to focus on the positive things in the future like your lovely grandchildren. At 68, one year on from RP, I am also now in the grandparent role with two gorgeous little boys. I would say also that prostate cancer treatment, which impacts continence, ED, fatigue, weight gain, feminisation etc etc is an emotional journey. Even grief at what you have lost is a normal reaction and important to recognise so we can move on, living life to the full as best we can.

 

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Damp, losing someone you have loved for such a long time is of course tough. I lost my only sister in a car accident at 19 years of age, many years ago. Grief is something we will all experience at some stage in our lives. I trust you find peace in your heart and get to that point where the memories are less painful and you can look back with fondness