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Old 12-16-2010, 10:31 PM   #1
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Ajuvant Radiation after Prostatectomy - Any successes with overcoming ED???

Irv had his surgery 5 and a half weeks ago, so it isn't surprising that he's had no successes yet with any kind of erection. This might sound strange and maybe too much information but sometimes after putting some pressure down there in the bathroom, it seems to get a little bigger....nothing related to sexual functions.

With his stage T3B, I'm almost positive that Adjuvant Radiation will be the recommended next step, especially since he is so young (51 years old). The goal is to try and eradicate all of the cancer and go for a cure. We've also been told that hormone therapy is not the desired therapy at this time because of his age and it seems that it's highly possible that many stop responding to the effects of hormone therapy after a few years. That would be a very bad thing.

So, surgery and then radiation....Is there any hope that he'll be able to beat his ED? Is there anybody here who has been through the same thing or knows somebody who's been through the same thing and has managed to beat ED? The most important thing, of course, is that Irv lives. It would still be interesting, however, to know about others with a similar experience.

Looking forward to a many responses as I can get.

Regards, Rhonda

 
Old 12-17-2010, 09:54 AM   #2
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Re: Ajuvant Radiation after Prostatectomy - Any successes with overcoming ED???

I've talked to men for whom it's taken up to two years for the nerves to come back after surgery. They sometimes go into "shock" from being scraped. I assume Irv's taking daily doses of Cialis, Levitra or Viagra. He can also try Tri-Mix, which can sometimes work even when the nerves don't. It's a good idea to use it to avert penile atrophy.

As you've probably heard, surgery may damage the nerves while radiation may damage the blood vessels. Radiation effects are due to fibrosis of the blood vessels and may not show up for a year or two, if they occur at all. Usually adjuvant radiation is at a lower dose, so he may be spared those late term effects.

Dr. John Mulhall at Sloan-Kettering wrote a book called "Saving Your Sex Life: A Guide for Men with Prostate Cancer" that you may find useful. There are also videos of his lectures on the subject.

- Allen

 
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Old 12-17-2010, 11:14 AM   #3
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Re: Ajuvant Radiation after Prostatectomy - Any successes with overcoming ED???

Actually, I have that book and I started reading it and I'm feeling concerned. Irv had his surgery on November 9th and it was my understanding that, as soon as he got the catheter out, he'd start with the PDE5 inhibitors and yet, nothing was prescribed. His follow-up appointment isn't until January 4th which is 8 weeks after surgery. According to Dr. Mulhall, Irv should have been prescribed this medication right after the catheter came out.

Irv has an appointment with Dr. Fleshner to repair a small issue with his wound on Monday. I'm certainly going to bring this up. I don't know why we're made to wait so long to get this going. I feel like, everyday that Irv has no functions, is one day more progression into irreversability.

I would appreciate hearing about other experiences with this.

Rhonda

 
Old 12-22-2010, 07:07 AM   #4
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Re: Ajuvant Radiation after Prostatectomy - Any successes with overcoming ED???

Hi Rhonda
Off topic but I read your post to Jim in another thread regarding hormone blockade in Toronto. I understand Princess margaret is an excellent facility however i am not sure how knowledgeable they are on this subject. I was treated initially at UCLA med center which has very good overall ratings but found they were lacking in this area. I am not sure sure how the referral system works there now, I've been away too long, but it may be possible to get a second opinion. I know my brother in New brunswick was able to when he was deciding treatment options for cancer.
I had a friend who went through this a few years ago in the GTA areabut I've lost touch with him. He was treated initially by someone out Mississauga way then switched to Sunnybrook where he went on hormone therapy along with radiation. At the time there seemed to be some fairly knowledgeable folk there. I can't remember the names but I know Dr Koltz is there ( a uroligist who has done research with hormone therapy).

All the best

John

When I last visited Dr Myers he said there were a number of Drís in Canada that were very familiar with Hormone blockade. I didnít ask for names as I donít have plans to return at present although he did mention that one of his former students was at the McGill Medical center in Montreal (out of OHIP coverage I suppose).

I think you can still post questions to Dr Myers online, you might try that and see if he responds with some Toronto names.

I was looking at the over 65 Ontario prescription drug plan the other day as I get closer to that age each year. My daughter North of Toronto suggested I look it up. At the cost of some of the drugs it might make sense to take up residence there in a couple of years, if I could just get past the thought winter

 
Old 12-22-2010, 08:44 AM   #5
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Re: Ajuvant Radiation after Prostatectomy - Any successes with overcoming ED???

John, unfortunately, we were told that Dr. Klotz will no longer take Irv on as a patient since he didn't have the surgery with him. Dr. Fleshner told us that hormone therapy is far more toxic than radiation so he is trying to stay away from that. Although he said, since Irv is prone to ulcerative collitis attacks (which he hasn't' been bothered with in several years), that radiation might be a problem.

When I asked him about triple blockade hormone therapy being the best, he said that that's debatable to single blockade.

Again, at our appointment this week with him, he said that with seminal vesicle invasion, there's a history of high rate of return of the cancer and he said that for Irv, being young, he isn't concerned about the next several years, but his concern would be in 15 years from now. He went back to the idea of that 15 years being the maximum for this level of cancer. I don't remember his exact words, but I listened carefully and I'm sure that's what he was saying.

How would I get in touch with Dr. Myers to let me know which are the best radiation and medical oncologists to deal with for the next leg of Irv's journey on this road to destroy the monster that lives inside him? Whether that will be radiation or hormone therapy or a combination of the two, it would be good to get the best for him, especially since he's so young. That makes it even more important because his expected lifespan is longer....we have more years to save.

Also, what's with the penile rehab? Is it usual that six weeks later, we are having so much difficulty getting help in this area? Dr. Fleshner gave us a sample of and a prescription for 5 mg. of Cialis and told him to take one every day. That was only after we asked about it and he didn't take the time to explain anything. Then we were given the run around full circle trying to get a pump. We still don't have one and no appointments for this either. I'm feeling frustrated with the process. It's been six weeks since surgery and about 4 since the cathether has come out. According to Dr. Mulhall's book, How to Save Your Sex Live, we're behind schedule here, and that doesn't sit well with me. Comments on this would be appreciated....Am I worrying too much?

Rhonda

 
Old 12-22-2010, 11:30 AM   #6
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Re: Ajuvant Radiation after Prostatectomy - Any successes with overcoming ED???

Hi Rhonda,

I recently consulted with Dr. Scholz, who co-wrote Invasion of the Prostate Snatchers, for my high-risk PC. I chose him after reading his book, but even more, after perusing his educational website - Prostate Cancer Research Institute. (I would recommend reading the articles you find at this website on topics of interest.) One article, written by a colleague, was quite helpful, and perhaps it would interest you as well. It's titled: "Nine Decisions Before Electing RADIATION THERAPY After Radical Prostatectomy. It was written this year and summarized several studies on the subject. In particular, it helped me realize that, even with high risk Gleason 9 PCa with positive margins but undetectable post-surgery PSA, I could wait to see a rise in PSA before undergoing further treatment. Everything depends on the ultrasensitive PSA test, with the treatment to start if it rises to .2, or trends otherwise indicate a recurrence.

You mention that the ultrasensitive test may not be available to you. Here in the States, several labs offer the test, and I would think labs in Canada do as well. The test isn't all that expensive, I believe, so it might be possible for you to get it done on your own if your clinic can't help you. A very interesting blog entry discusses the test and gives links to labs. Look up the title: "The Case for Ultra-Sensitive PSA Testing After Prostate Cancer Treatment" and you should find it.

In the consultation, Dr. Scholz also talked about ED and radiation as well. In his experience, if pre-surgery erections were strong, there was little risk of permanent ED damage from post-surgery radiation treatment.

Like Irv, I did not receive any ED treatment right after surgery. Only upon Dr. Scholz's advice 3.5 months after surgery did I start taking Cialis. I have since noticed an improvement in that area, and I expect things will eventually get back to normal.

I wish you and Irv all the best.

Tom

 
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