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43, 4 months post Davinci, no guidance on sexual function CONFUSED

alevine1nc
Posts: 4
Joined: Oct 2011

I am 43 years old and was diagnosed with PC. Gleason 3+3, clinical diagnosis T2A. Had Davinci RP surgery at Duke in Durham. I am very disappointed with the lack of post-surgical treatment and counseling. I am 43!! I don't know what to do. My health is great. No complications except sexual dysfunction. I need someone to talk to and help me through day-to-day coping with the change in life. I beleived the promise of the "nerve-sparing" hype. My doctor's PA prescribed me the pump and I have a prescription for Viagara, but my insurance will only approve 6 pills a month! I am so confused. What am I supposed to be doing?? I have a great wife and 2 great kids but I am spiraling into depression because of this. Am I supposed to be taking Viagara everyday? Should I be using the pump all the time? What is the regimen supposed to be and what should I expect? At night time I am usually too tired to want to stand there in the bathroom like an idiot with this thing on my penis. Should I buy Viagara off the Internet to supplement what my insurance company approves for me? I've had good results with 100mg of Viagara, but not so great with 50mg. Should the goal of the regimen be to get daily erections? What am I supposed to do? Can someone please help me? I have no one to talk to about this.

Beau2
Posts: 232
Joined: Sep 2010

Hey Alevine,

Many very good urologists seem to drop the ball when it comes to telling their prostate cancer patients how to treat their ED. Your not alone and their is help you can get.

Dr. John Mulhall (a leading prostate ED expert) addresses your questions in his book,
"Saving Your Sex Life, A guide for Men With Prostate Cancer". He lays out a Penile Rehab program for men who have had their prostate surgically removed. The program does include the daily use of 1/4 strength PDE5 inhibitors (i.e. 25 mg Viagra).

The goal of the program is to get fresh blood into the penis on a daily basis.

Dr. Mulhall also has a video (about 1.5 hour) that covers much of the same information:
www.mskcc.org/mskcc/html/94910.cfm

Many men who post to this site buy their Viagra (or levitra) from the internet. Seems the most popular supplier is All Day Chemist from India.

alevine1nc
Posts: 4
Joined: Oct 2011

Thank you Beau2! I started watching the video from Dr. Mulhall on Penile Rehab and I am amazed that there is nothing offered like this at Duke Medicine! At least this gives me some kind of start. I've been using the pump off and on (something Dr. Mulhall doesn't seem to mention) but I don't know how long I should be using it. How long should I maintain the erection with the pump each time? Anyway, thanks for the good info. I will also get the book.

I've ordered some Viagara from All Day Chemist, but Dr. Mulhall recommends in his video 25mg of Viagara every night. IS it possible to cleanly split 100mg pill into quarters? All Day doesn't sell anything less.

Again, thanks for giving me a direction.

Beau2
Posts: 232
Joined: Sep 2010

Hey Alevine,

Go to your pharmacy and buy a pill splitter. Its basically a razor blade in a plastic holder. I've been using one for a few years. Once you get use to them they work real well. I did crush a few pills to start ... swallowed the crushed med ... worked fine. The companies do tend to make the pills in none round shapes, so it is more of a challenge to split them .... but once you get the hang of it there is no problem.

Mulhall's book does have a short chapter on VED's. He does not seem to be an advocate for the use of the VED for penile rehab (does work for sex), because according to him it only minimally increases the amount of oxygen in the penis. He recommends the use of PDE5 inhibitors (i.e. viagra, levitra, cialis) and injections.

Swingshiftworker
Posts: 625
Joined: Mar 2010

Your story is one of the reasons why I am so adamant in encouraging men w/early stage PCa to avoid surgery at all costs. The medical professionals who are so quick to recommend cutting out your prostate are the same ones who ignore or are incapable of adequately addressing your pleas for help to deal w/the problems of incontinence and ED which often follow.

To answer your specific questions, the penile pump has often been used by men as a sex toy to temporarily increase penis size (both length and girth) but there is no proof that any permanent gains in size result from its use. The pump is recommended for post surgical PCa patients in order to promote blood flow to the penis (which no longer occurs naturally). It it will not help you to actually achieve or retain an erection BUT using it regularly will keep your penis from atrophying (yes, that's possible -- Google it) until your normal erectile function returns. You probably don't need to do it more than 2-3 times a day.

Viagra (like other ED drugs) is designed to promote the chemical changes in your body necessary to create an erection by promoting blood flow to the penis in conjunction w/sexual stimulation. Viagra is designed to be taken immediately (usually win an hour) before you want to have sex. There are 2 different types of Cialis -- a low dose version taken daily and a high dosage version that is taken up to 3-4 hours before sex is planned. Neither of these nor any other ED drugs will work if there has been any damage to the penile nerves (ie., if the nerves were NOT actually spared) or if the nerves are still traumatized and recovering following surgery.

I use the daily 5mg version of Cialis that costs me $120/mo; much less than the higher dose/per event verisons of Cialis and Viagra. You can buy cheaper overseas versions of all of the ED drugs but there are a lot of counterfeits. So, you need to be very careful about the source. HOWEVER, if the brand label version of any ED drug is not working for you, there's no reason to waste money buying cheaper overseas versions of it. Nothing will work if your nerves are not intact or have not yet recovered following surgery.

Fact is, you may never be able to achieve a normal erection again BUT it's way too early to judge that in your case. Most men regain some erectile function w/in a year to 2 years. But even if your situation is permanent, all is not lost. If that happens, you can get a penile implant which will allow you to simulate a normal erection and engage in intercourse (but unfortunately not ejaculate, which is eventually lost w/any form of treatment) with your wife again.

So, as difficult as it may be, try to be patient. Give your body time to recover and your erections may return. Keep using the pump to prevent the penis from atrophying and try using a known brand name ED drug from time to time (every 2 months or so) to see if actually helps you to regain an erection. After you see an demonstrable result w/a known ED drug, you can look into buying more for less on the Net. In the meantime, if you are really depressed about this problem, I encourage you to seek out the help of a qualified sex therapist (or other mental health professional) so that you can get support you need to deal w/this problem.

Good luck!!!

alevine1nc
Posts: 4
Joined: Oct 2011

Swingshiftworker, thank you for the information. I've been distressed because I don't have any kind of regimen. Being 43 I can only use the pump at morning and night because I can't do it at work. Ans tims is not always on my side. SOmetimes I am too tired at night and too rushed in the morning. I know I have to MAKE time and your comments really help. I ahve to be patient and I have to keep working at it.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

As all ready mentioned All day Chemist (You can find on the web) is a great place to get the viagra or Levitra from at a great price.
One word of caution though is lately there have been some reports on 'extra charges' appearing on your credit card. So keep a watch on your billing statement or get a pre-paid visa card and use that for your order. The pills are excellent quality. I am using the Levitra.

Also as suggested get and read the book on saving your sex life. Another web resource you might want to try is at www.franktalk.org. Its the place where you can ask the man questions with out fear of embarrasement!

Good luck!

lewvino (larry)

alevine1nc
Posts: 4
Joined: Oct 2011

Larry,
Thank you for the support. I've ordered some Viagara from All Day Chemist. The web site is a good resource too.

thegriz
Posts: 23
Joined: Nov 2008

Hopefully over time, Viagra or it's clones will work for you, and you may be able to then drop to a lower dose. Pill cutting works great. My cost for 100 mg is the same as for 25 mg. I have the prescript for 100's and cut them in quarters -- no problem. Good luck.

hunter49
Posts: 200
Joined: Oct 2011

You may want to loook into the University of Michigan. They have a great post op regiment for ED.

Prince_1
Posts: 1
Joined: Nov 2011

I just had RP surgery on Nov. 3rd at Boston's Beth Israel Deaconess (a teaching hospital for Harvard Medical School). Prior to agreeing to surgery, I became aware of the concept of penile rehab and, in particular, the work of Dr. John Mulhall at Memorial-Sloan Kettering. I emailed my surgeon about it, and he said that he offered penile rehab and that we could talk about it at the pre-op evaluation. At that meeting, he brushed it aside saying, "It's too early to worry about ED. We'll talk about it once the catheter is out." When I saw my surgeon last week to have the catheter removed, he gave me a prescription for a VED as well for Viagra and said, "I'll see you in 3 months."

This is most definitely not the kind of penile rehab that I want. I spoke to my PCP about it, and he was very supportive. He told me that if I found another urologist who would offer a more aggresive, regimented form of penile rehab, he would make a referral. I did a lot of searching last week and finally came across the Center for Sexual Medicine at Boston Medical Center (a teaching hospital for Boston University School of Medicine). The director of the Center agreed to see me the day after tomorrow.

I'm hopeful about this new urologist because as I was doing research on him, I found that he contributed a chapter to the book "Sexual Function in the Prostate Cancer Patient" (which was edited, by the way, by Dr. Mulhall). Moreover, I came across the following quote from an article that he wrote for the journal Oncology: "Unfortunately, men with cancer are often misled or poorly informed as to the potential sexual side effects of different cancer treatments, which may lead to overall dissatisfaction, frustration, anger, and deterioration of the patient-clinician relationship. The reasons why patients are poorly informed about sexual side effects are complex and multifactorial but often easy to fix by including a sexual medicine physician on the oncology team. This measure would not only improve patient care, satisfaction, and quality of life, but would also allow for faster biologic and psychological recovery after cancer treatment."

I hope that my experience (so far) may help fellow PCa survivors like Alevine.

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