Robert's Page - The New Prostate Cancer InfoLink

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Robert 48, Male Juneau, AK, United States: Share

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Robert's Groups

Gay, Bisexual Men & Transgender Women

6 members
Primary Issues

47 members

ED and incontinence post-treatment

66 members
Cryo

4 members

Activists and Advocates

24 members

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Robert's discussions

Latest Activity

Mike left a comment for Robert Sep 26

Robert commented on the group Cryo Sep 25

Robert added the blog post 'Post Cryo #1 7 weeks post procedure.'Sep 25

Robert added the blog post 'Treated with subtotal cryo'Aug 31

Robert replied to the discussion Should the PSA screening age be lowered to 40? Aug 26

Robert commented on the group Cryo Aug 26

Robert replied to the discussion Cryo as secondary treatment after RP? Aug 26

Profile Information

Have you been diagnosed with prostate cancer?: yes

What brings you to the New Prostate Cancer InfoLink social network?: I have prostate cancer

Would you help us grow the network? Would you tell others about it?: Yes

About Me:: I was diagnosed with prostate cancer 18 months ago when I was 46. I am not 48. I hope to help create an information resource with current and accurate treatment information. Also one that respects the whole patient and looks beyond our own borders for solutions.

Robert's Blog

Post Cryo #1 7 weeks post procedure.

I had my sub total cryo on 8/8/2008. Please refer to that post for details. It is now. almost 7 weeks post cryo. Continence - Perfect Soft erections, perfectly good for masturbation but not strong enough for good penetration without drugs. I have been using some 2.5 (yes 2.5 not 25 mg) cialis on a semi daily basis. I say semi daily because I have had a cold and the flu and did not feel like taking them. As I am getting soft erections anyway, I know blood flow is pretty good. I tried 1/2 of one… Continue

Posted on September 24th, 2008 at 9:58pm —

Treated with subtotal cryo

I finally had my PC treated. I was treated with sub total cryo. That is 100 percent of the right side of my gland was ablated. The left side of the gland was treated sparing the nerves by making sure that they did not get below 10 degrees centrigrade (thermocouple placed there). Approximately 90 percent of the left side was destroyed. Catheter was in 5 days. Took it out myself at home per docs instructions. I had removed one before. One bumpy day where peeing was a bit difficult. Then continual… Continue

Posted on August 30th, 2008 at 11:07pm —

Diagnosed at 46 and feeling pretty far out on the bell curve

I was diagnosed at 46 and have felt pretty far out on the bell curve. The conventional wisdom is, you are young - go have surgery. But I have spoken to some pretty disappointed guys after surgery. Combine that with being single and I have a strong desire (need?) to preserve my quality of life. I will easily trade 3 or for years of later stage life for quality time now. If I was 65 I pretty much no what decision I would make. At 48 now, I have a LONG time to live with the results of whatever trea… Continue

Posted on April 9th, 2008 at 8:54pm — 6 Comments

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Comment Wall (15 comments)

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At 8:32am on September 26th, 2008, Mike said…: Hi Robert! Glad to see that you are making good progress after the cryo. Sounds to me like you have an excellent potential for a "high performance" recovery! It may just take a little while.

:O)

At 10:15am on August 17th, 2008, Steve Watson said…: Hi Robert
I'm sorry I have'nt been in touch. I do not buget my time very well.
Any how, how are you doing? I hope your path to recovery is going well. As for myself, I'm "cured", at least that is what my follow up at the Mayo indicated. I still need follow up blood tests, but do not need to see Dr. Frank untill the 1 year mark.
Good luck Robert
Steve

At 10:43am on June 19th, 2008, John Grover said…: Hi Robert,
I'm 47 and had RP 1 month ago. No post op PSA yet. As for quality of life, it has been great for me so far. I am already working out in the gym though not as intensely as before. I have a little incontinence that is getting better every day. No ED at all, and sexual activity feels 99% normal. I know there are a lot of men with ED problems after RP, and I don't know if it depends on the surgeon or personal physiology or both. I had a great surgeon (Dr. Scott Miller in Atlanta, GA), and he was very serious about making every attempt to maintain all my functions. He does over 300 RP surgeries per year, so I think that experience helped too. For me having the cancer OUT is a great psychological boost, and even if I had had total ED I think I would make the same decision. I have so much left to do and see in the next 40 years :-)
Good Luck!

At 5:33pm on June 7th, 2008, Steve Watson said…: Hi Robert, welcme.
My wife and are currently on a motorcycle trip,so I'm going to be
mostly out of touch. I will be back jun 20th or so. I chose surgery, at 56 I'm too young . I'm a success story,after surgery,99.8% continance,no ED problems, still need a follow up PSA, to which I'm praying for positive results. GET THE BEST DOCTOR POSSIBLE! The most experience is important.
I went to the Mayo Clinic in Minnesota. Dr. Frank.
gotta go
lotsa luck!

At 10:06am on June 7th, 2008, Dan Newman / PCA Racing said…: Hi Robert,

E-mail me at pca.racing@hotmail.com when you get a chance and I will send you some articles written about my cancer and my awareness efforts. I had a low PSA and a low Gleason score, but by the time I got my prostate removed, the doctor informed me that my cancer was a nano-second away from breaching the prostate. That is why I created a poster called "Procrastination Kills". I hope to find a way to get my posters displayed on my page soon, so everyone can see them.

I had a lot of concerns as well regarding "quality of life", and maybe even more so, because I was 46 years old at the time, and my wife was 24 years old. We had two little children, now 6 and 3, and the most important thing for me was getting the cancer out of my body. I thank God everyday that I made that decision.

Talk to you soon,

Dan Newman
PCA Racing

At 8:22pm on May 11th, 2008, PaulC said…: Hi Robert,
I just now discovered the envelope icon in the top upper left of the page and remembered that you had wanted some way of transmitting private messages. I'm going to try it out now. Can you let me know if you receive it?

At 11:02am on April 17th, 2008, Robert said…: Did you have a girlfriend when you went for surgery?

At 10:56am on April 17th, 2008, John Frascello said…: I still don't have full erections....just partial but, it's enough to please my girlfriend. I've found that taking Levitra helps a bunch. If you're having cryo, you may not have any trouble with erections. I had everything removed and things had to be re-attached, etc. I'm not worried about it as, I know things will be back to normal soon.

At 10:35am on April 17th, 2008, John Frascello said…: The sooner you get it taken care of, the faster your recovery will be. Honestly, Robert.....it's not bad at all having it done. I had the option of radiation, cryo, etc. but, I opted to have the entire prostate removed. I didn't want a SINGLE cancer cell left to go somewhere else to "eat" away at my body.

At 10:21am on April 17th, 2008, John Frascello said…: Robert,
I realize how important it is at your age to "keep going as you always have" but, you really ought to reconsider. Yes, prostate cancer is slow-growing but, at 46, if you don't have it taken care of, it WILL kill you. Belive me, it's not as bad as you think it is. I'm almost back to normal and it's only been 7 months since my surgery. Do yourself and your loved ones a favor and have the cancer removed. My dad died from prostate cancer after it had gone outside the prostate and into his bladder. He died a very agonizing death so, please think about what I've suggested, ok?