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alex20

prostate cancer

Posted by @alex20 in Cancer, Jul 13, 2011

How do men handle prostate cancer

Tags: Cancer, Prostate Cancer

jimsanf

Posted by @jimsanf, Jul 13, 2011

I can tell you how I handled it. After the biopsy and discovery that I did, indeed, have prostate cancer, I immediately planned to have my prostate removed. I didn't even discuss radiation seeding, etc. The key to prostate cancer, in my opinion, is catching it early and removing the organ. It's an organ one does not have to have to live one's life. My surgery was on May 10, 2011 and my recovery was uneventful. I can provide more details if you are interested.

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titaniumhipster

Posted by @titaniumhipster, Jul 21, 2011

A week ago I was diagnosed with prostate cancer. I am 68 yo with a history of a heart attack in Feb. 2008 treated with placement of a stent rather than bypass surgery.
My urologist favors robotic surgery involving complete removal of the gland. The cancer has not spread at this point.
I am especially interested if you are about my age, any side effects you experienced, and what your experience was like at the Mayo Clinic.
Paul

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jimsanf

Posted by @jimsanf, Jul 21, 2011

Hello,

I am 66 years old and in otherwise very good health. First, my experience at the Mayo Clinic was absolutely the best! I recommend the robotic prostatectomy since I am a fan of technology and the thought of a speedier recovery appealed to me. There is some discomfort after the operation. It's primarily stomach muscle related and improves daily. The six incisions begin healing right away. The biggest aggravation was the need to wear a catheter for 10 days, but I found ways to make it more tolerable. Once the catheter is removed life gets better immediately. Incontinence was never an issue - that is to say that I never experienced uncontrolled urination and there was never a need for Depends. The side effect typically called incontinence is what I call an ucontrolled "whoops", meaning that a certain move or strain may produce a squirt of urine. You can buy "pads" at Walmart to deal with this. I used a brand called Options and at first I went with the "light" and then graduated to "very light". This, too, improves over time and now I do not wear them at all and it's been 9 weeks since my surgery. Erection? Not yet. I didn't have any problems prior to surgery so I am optimistic that will resolve itself in time. If not, my wife and I are comfortable knowing that my cancerous prostate has been removed and so be it. There may be other options, but for now it's wait and see.

Hope this helps. Let me know if you would like more details.

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titaniumhipster

Posted by @titaniumhipster, Jul 21, 2011

Hi,
I live in the NYC area which has many great hospitals. You make it clear that you were very pleased with your experience at the Mayo Clinic. But was geographic proximity the real reason for choosing this hospital?
Can you convince me to travel from NYC to Rochester, MN because the Mayo Clinic is really the cats pajamas?

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jimsanf

Posted by @jimsanf, Jul 22, 2011

Hi,

I live in the Savannah, GA area. The Mayo Clinic I went to is in Jacksonville, FL, so, yes, geography was a factor. More importantly for me, though, is the knowledge that the Mayo Clinic has been on the cutting edge of research and technology for as long as I can remember. I certainly felt that they were a better option than what we have locally. I can't comment on NYC facilities, nor is it my place to convince you to do anything. My experience at the Mayo was a good one; probably close to the cat's pajamas as you can get.

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darrold

Posted by @darrold, Sep 11, 2011

What was your Gleason score?

darrold

Posted by @darrold, Sep 12, 2011

What did you do to make the catheter easier?

jimsanf

Posted by @jimsanf, Sep 12, 2011

There are two types of collection bags. After the operation and during the brief hospital stay, they use a 2 liter collection bag which is connected to a "valve type thing" velcroed to your thigh using a long plastic tube. When they prepared me for release to go home, they explained how to deal with the catheter (cleaning, etc) and inform you that there is also a 1 liter "leg" bag available. It velcros to your leg just below the "valve type thing". The 2 liter larger bag has about a 4 ft tube and you have to carry the bag around. The bag has a hook and you can hook it anywhere convenient as long as it's below your bladder. Gravity is important here otherwise urine will flow back and up into your bladder - not good. The problem using this is walking or moving around. Urine in the tube starts sloshing back and forth and it sends pressure into the bladder when it sloshes backwards. Very uncomfortable!! The answer is the leg bag. Because it is velcroed directly to the "valve type thing", there is no sloshing and the problem is solved. You can't sleep with the leg bag, however. Anyway, after 10 days and catheter removal, life got instantly better.

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darrold

Posted by @darrold, Sep 12, 2011

Thanks! I consult with Dr. Igor Frank in Rochester on Sept. 26th. I may have more questions after the consultation.

jimsanf

Posted by @jimsanf, Sep 15, 2011

Good luck. Let me know if you have any more questions.

darrold

Posted by @darrold, Sep 15, 2011

I may have more questions after consultation on Sept. 26th at Mayo! Thanks again! You have answered some pertinent questions.

darrold

Posted by @darrold, Oct 4, 2011

I met with Dr. Frank on the 26th. He and his assistant Dr. Weight were very impressive. Robotic surgery is scheduled for Oct. 27th. I am ready!!

jimsanf

Posted by @jimsanf, Oct 14, 2011

Good to hear! I'll be anxious for the follow-up after surgery. If you have any questions prior, please let me know.

jimsanf

Posted by @jimsanf, Nov 3, 2011

How did your surgery go?

darrold

Posted by @darrold, Nov 5, 2011

Surgery went well. The catheter was removed two days ago. I am getting stronger each day. I am experiencing a very small squirt at times, but stay dry overnight. How are things going for you.

jimsanf

Posted by @jimsanf, Nov 5, 2011

Sounds like things are right on track for you. I stayed dry at night as well (still do) and the squirts will subside as your muscle gets stronger. You are probably experiencing slgiht bladder cramping at the end of urniation. That, too, will subside and it will decrease at little at a time. Mine went away at about the three month point. I'm sure you were as glad to get the catheter out as I was.

Keep up the progress and let me know if you have any questions.

Jim

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darrold

Posted by @darrold, Nov 5, 2011

I am not experiencing bladder cramping at this point. Getting rid of the catheter must be something like getting out of jail. Hope all is well with you.

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darrold

Posted by @darrold, Nov 11, 2011

I was advised to take cialis after the catheter was removed. I take the cialis at night. My legs ache after going to bed. It actually keeps me awake. did this happen to you?

jimsanf

Posted by @jimsanf, Nov 30, 2011

Hi Darrold, Sorry, I didn't realize you had sent a message and my computer didn't alert me. No, I didn't have any leg ache as you describe. I am not taking any other meds than BP, Cholesterol and baby aspirin that I've been on for 15 years. One thing that I did and still do is walk on my treadmill. I began walking immediately after catheter removal, albeit slowly, and kept increasing speed and distance up to 2 miles which is what I do 5 days a week. How are you doing now?

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darrold

Posted by @darrold, Nov 30, 2011

I was advised to take 1/2 dosage of cialis, and that is working. I am also walking on the treadmill about one mile at a time. I am getting along with a few pads a day. I seem to have more control in the morning. I assume the muscle gets tired by afternoon. Take Care!

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jimsanf

Posted by @jimsanf, Nov 30, 2011

Hmmm. Keep doing those Kegel exercises! The squirts are rare for me, but occasionally will happen if I'm not prepared for an unusual event such as a cough or some type of pressure on the bladder like leaning over sideways to get paper out of my printer. Also, careful when trying to pass gas! 🙂

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darrold

Posted by @darrold, Nov 30, 2011

I never miss the Kegel exercise routine. My surgery was only one month ago!

jimsanf

Posted by @jimsanf, Nov 30, 2011

If you would like to communicate directly my address is sanfordj@planters.net
It might make it easier.

dfsstevens

Posted by @dfsstevens, Sep 20, 2011

Thanks for this excellent advice. Since I am doing the daVinci next week finding your advice was very timely!!

darrold

Posted by @darrold, Oct 6, 2011

Hope your surgery and recovery is going well! I have Da Vinci on Oct. 27th at Rochester Mayo!

luvmyman

Posted by @luvmyman, Jun 20, 2012

Is the cath a for sure thing after removal of prostate ?

luvmyman

Posted by @luvmyman, Jun 20, 2012

Thank you for your in depth experience! After surgery is the cath a for sure?

jimsanf

Posted by @jimsanf, Jun 20, 2012

As far as I know, yes it is. When the prostate is removed they have to reattach the bladder, urethra and surrounding tissue. The catheter aids in the healing process. Keep in mind that I'm not a doctor, so it's just my opinion. I had my catheter in for 10 days. I know of one person that only had his in for four days which doesn't really seem long enough. Sorry to hear that your husband is facing this at his age. Best of luck to you both.

darrold

Posted by @darrold, Sep 11, 2011

What is your age? Incontinence? Impotency? Which Dr. Gleason score?

jimsanf

Posted by @jimsanf, Sep 11, 2011

See my July 21st post. My gleason score was 3+3 or 6. At 3-1/2 months incontinence is not a problem. Impotency is a problem, however, my surgeon/urologist said it could take up to a year or more. I've elected to stay away from the pills for now.

darrold

Posted by @darrold, Sep 11, 2011

Who was your Dr.? I am 68 years old and in good health. I am leaning towards Robotic Surgery. I consult with Dr. Frank on Sept. 26th! Thanks for the reply!!

jimsanf

Posted by @jimsanf, Sep 11, 2011

My surgeon was Dr. Todd Igel at Mayo's Jacksonville location. I can't speak for the seeding technique, but I would do the robotic surgery again.

dfsstevens

Posted by @dfsstevens, Sep 20, 2011

I'm 63, Gleason 7 in one sample and 6 in another. Robotic surgery scheduled for 9/28. Regarding the pills, I've decided to start them as soon as the urologist clears me to do so. I've been on daily Cialis for two years anyway with great success and no side effects so I anticipate no problem going forward. I am relieved to hear that continence wasn't really a big issue for you. That is my one worry.

darrold

Posted by @darrold, Sep 22, 2011

Good Luck! I have an appointment with Dr. Igor Frank at rochester Mayo on 9/26 to discuss options. Keep me posted on your progress!

kwilter

Posted by @kwilter, Jul 13, 2011

My father was diagnosed with prostate cancer in 1996. He/we looked into radiation seeding and other options but chose to come to Mayo Clinic for removal of his prostate. He is still cancer-free 15 years later. Thank you to the wonderful doctors and nurses who cared for him.

virginialaken

Posted by @virginialaken, Jul 28, 2011

I'm writing from the female partner point of view. My husband was diagnosed with prostate cancer 13 years ago and was treated at Mayo with surgery. He is cancer free to this day. However he suffered from impotence - erectile dysfunction. For a while this was devastating to him and of course affected me as well. With the help of Mayo we learned to refrain and regain our ability to be intimate. We have written a book about our experience but would be happy to share more if anyone is interested.

darrold

Posted by @darrold, Sep 12, 2011

What is the name of your book?

virginialaken

Posted by @virginialaken, Sep 12, 2011

The name of our book is MAKING LOVE AGAIN, Hope For Couples Facing Loss of Sexual Intimacy. The book is on Amazon or you can order directly from us. Keith and Virginia Laken 23597 County Road 7 Winona, MN 55987

darrold

Posted by @darrold, Sep 12, 2011

Thanks!

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knipper

Posted by @knipper, Jul 29, 2011

My husband is 51 years old and has been diagonsed with aggressive prostrate cancer with a rare form involving the seminal tubes. We were scheduled for surgery Aug 8, but now the specialist from Duke has said that it is too advanced from the tests and wants to go directly to radiation therapy. Has anyone experience this or knows of anyone who has?

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lyndenart

Posted by @lyndenart, Jun 4, 2012

I had my annual PSA test in April, 2011. It came back 6.94. My Urologist diagnosed it as prostaties (sp?) and prescribed an antibiotic for 30 days and to see him in a year. A year later my PSA test again was slightly over 7 so he did a biopsy - result - agressive cancer - gleason score of 9. I have had 2 CT skans, a bone scan, and an X-ray which has shown a probable spread of the cancer to my rib. I have a biopsy scheduled for tomorrow AM. I started on hormone therapy (Lupron) but they are not recommending radiation. Am I getting bad advive? I am disapointed that my urologist did not have a biopsy a year ago. Was his action standard treatment?

luvmyman

Posted by @luvmyman, Jun 20, 2012

My husband was just told he has stage 2 prostate cancer, Gleason 7 tsa2 , I think his urologist is a small town surgeon who is giving him no option but removal! Bone scan was negative and it is localized to his prostate. He has not had any urination or ejaculation problems or erectile distinctions.A discomfort in his testicals led him to a Psa test, results were 140!!!??? We have our appointment with Dr.Swanson at AZ Mayo 6/21/12. He is going to turn 38 6/23/12. I am fully aware of the possible side effects of surgery and seed, etc.. I just need some support and "real information" from men who have gone through this. I love him and would like some honest advice on the impotence and incontinence. I am prepared to hold his hand for the rest of our lives but need to know how I can help and comfort his personal insecurities with all of the upcoming worst case scenarios.

BuckyFestoon

Posted by @BuckyFestoon, Jul 2, 2014

There are 6 things i used to pull me through a MIRACULOUS recovery from Stage IV prostate cancer. I had a PSA of over 25,000 and was (according to my Dr. within a week of total hepatic and renal failure). That was August of 2011. I am now in great health (a bit overweight) with an undetectable PSA and clear scans.

They are:
1. Strong Faith
2. A Grateful / Thankful Heart
3. Wise Counselors - Great Dr's and others
4. A Tenacious Spirit
5. A Vision for the Future
6. A Strong Support Network - Family, Friends, Prayer Warriors, etc.

I can give you the gory details if you are interested. But I am living proof that no matter how bad things appear they can get better.

@PaulDickie

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