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New Doctor New Prospective New Direction

Trew
Posts: 897
Joined: Jan 2010

First appointment with the new doctor, Dr. Isacksen, today.

First, We agreed to stop the Eligard!!!!!! and see what happens. I am all for it and he feels comfortable with going that direction, too. So I am now on the down side of Eligard. Either the surgery, radiation and a year of hormone shots will hold and do its work, or it won't. Its time to find out.

Second, he told me in answer to my question that one of the downsides of prostate surgery is incontinence. No matter how good the surgeon is that is always a possible outcome whether the surgeon wants to admit it or not, no matter how good the surgeon is. I have always known that and it is one of the main reasons why I am and have been a strong advocate for proton therapy.

Third, I have been set up to see a Dr Bour in Kalamazoo who has done many- dozens- of the AMS 800 artifical Sphincter implants. I am not going to wait around for years trying to make kegels work. Dr. Isacksen said plainly, if you are still leaking after a year it won't get much better. He set up the appointment with the uro/surgeon. I see him on June 9.

fourth, after a serious surgery like having the prostate out and a T4 cancer like mine Dr Isacksen will see his patients every appointment for the first year. Then maybe the PA will start taking over. He never heard of a PA seeing a patient for the first year after surgery like I was. He could hardly believe it. He never heard of a surgeon saying to his patient after informing him he has positive margins, "You will need radiation or die." the old doc's exact words.

Fifth and very important, this doc spent about 45 min with me answering questions, setting up a referral apppointment, and treated me like a person!

I am so glad I made the change. Now to find out if all the treatment holds.

Exciting.

Good move on my part to change doctors.

lewvino's picture
lewvino
Posts: 1010
Joined: May 2009

Trew...So Glad to read your positive update! Congrats on making the switch to the new Doctor.

I was so impressed with my urologist when he spent over 1 hour with my wife and I talking about all the different treatment options. At the end he told me I do not care what action you take I WILL STILL BE HERE FOR YOU IF YOU CHOOSE ANOTHER Option. I choose as you know Robotic over open surgery (which he performed).

I've heard good things on the implant for urine control. I knew that was a risk with surgery and constantly tell my wife that I feel for my 'prostate cancer buddies' that have issues in that area. One man at our local Prostate cancer support group is on his 2nd implant (They will wear out in time) and loves it. He said you just squeeze your testicle lightly and it releases the value to let the urine out.

One gentleman posted on here about a bad experience he had with aColoplast Virtue Male Sling. User name of: bigxbadxjohn posted: October 31, 2009 - 4:44pm if you want to read his experience.

Still keeping you in my prayers!

Larry in Tennessee

Trew
Posts: 897
Joined: Jan 2010

The new Doc didn't speak very favorably of the sling- still too new and too many bugs that still need to be worked out. He did speak very favorably of the AMS 800 artifical sphincter. He did not think continence therapy would help much.

Nor did he think much of collagen injections either- only about 50% effective and then they have to be renewed regularly and while its wearing down yu start leaking again.

So I am now moving towards a big step in my life.

And at this time NO MORE ELIGARD!!!!!!! I need to give it 6- 12 months to get out of my system. But no more ELIGARD!!!! I hope I am not repeating myself.

bdhilton
Posts: 767
Joined: Jan 2010

Trew,

That is great news and for sure worth repeating and perhaps yelling from a mountain top…

Trew
Posts: 897
Joined: Jan 2010

NO MORE ELIGARD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am so excited, happy, glad, ettc.

(also a bit apprehensive about what may happen- but I can always start eligard again)

Trew
Posts: 897
Joined: Jan 2010

I was also told that the PSA will be slightly higher in men who get proton treatment than those who have surgery becasue they still have a working prostate! Like a .3 after proton treatment is ok- its not so much the number but how the number holds. A constant .3 month after month is as good a .01 if it is holding after proton treatment.

On the side here, I am a very difficult blood draw for some reason. I always get both arms checked twice, and then the hands. Today was one of the worst blood draws yet, but I am still happy- NO MORE ELIGARD!!!!!

Another thing- if I choose to go to Ann Arbor and get this AMS 800 installed- he told me he would help me out- no problem with him.

bdhilton
Posts: 767
Joined: Jan 2010

Trew,

Hang in there you have had for my perspective a bad experience with your care as many have noticed here…Perhaps you are finally going to make that turn and the positives in life will flow…In the mean time, enjoy each day and better yet NO MORE ELIGARD!!!!!

Best to all

Trew
Posts: 897
Joined: Jan 2010

Good positive thought and well received by me.

I also found out today: once a T4 always a T4. I was hoping for a little subtracting and get the number lower but it doesn't work that way. T4 - radiaiton = T4. New math.

Worse yet: T4 - eligard = T4. Imagine that!

:)

randy_in_indy's picture
randy_in_indy
Posts: 495
Joined: Oct 2009

I am so happy you are on a positive path now...keep it going brother keep it going! ...Man that was a HUGE appointment...no more Eligard!!! hope on the horizon for incontinence issue...and besides the CEO chair in the "Dryness Club" we are holding a spot for you in the Woody Club as well! Amen you found a Doc with compassion and sense. My surgeon has never told me I will ever be seeing the PA...only him every three months for the next two years and then every six months for two more years then every year after that. The only time I saw the PA was to pull the cath.

Again, So Happy for you!!!

Randy in indy

Trew
Posts: 897
Joined: Jan 2010

For the third time yesterday I heard the word "aggressive" used with my cancer. Dr. Isacksen said after two years we would simply stop the Eligard and then wait and see what happens. That is what we are going to do now, he said. He was not sure two years whould do any more for me than 1 year and quality of life was an important issue with me.

As far as studies go, he was not aware of any studies comparing men on 1 yr and men on 2 years of eligard. All studies are comparing men on eligard with men not on anything so there is a statistical advantage to those who were on eligard.

I guess we are going to push the edges a bit and see what happens. This is acceptable to me. I am going to find out if treatment holds or not.

but for now.....

NO MORE ELIGARD!

randy_in_indy's picture
randy_in_indy
Posts: 495
Joined: Oct 2009

With a better quality of life the attitudinal change may be what you need to get the cancer in check, the positivity from a new doc, new approach can only help the way I see it. I wish you the best in your battle!

Randy

Trew
Posts: 897
Joined: Jan 2010

Randy, I have been a little giddy all day- no more Eligard. I have no idea what is waiting ahead of me in the next year or two or three, but I would rather have as much time back near normal as possible, if it comes down to that.

Bladdernecks have a higher rate of recurrance than other margins- I understand that, too. But in the mean time- I want some quality back and it wasn't going to happen on eligard.

NO MORE ELIGARD!!!!!

No more eligard (tear of joy rolls down my cheek....;)

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