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Missouri Folks look for best Care

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

Just wanted to let everyone know that we are from Central Missouri (close to Columbia)
and if anyone knows of great dr's or treatment centers or have heard good things about
any , well please let us know....we also border Illinois and kansas.

I am also curious to hear from anyone who has had the Turp sugery and then found the
need to seek treatment for prostate C. as I understand that changes the scenerio

One Thera-seed nurse told us that they may want us to wait 1 year after turp before
doing the seeds...I said, "1 year?" I am not sure that I feel comfortable with that.

She said, " we will do hormone therapy while you are waiting".....so nothing will grow.

I am now thinking>>> from what I have heard about hormone therapy on here...sounds pretty nasty...:-)

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

I've been on Lupron continuously for over two years. A lot of the side effects take a long time to develop, and they do vary from person to person. They are using it intermittently in some cases, which might reduce problems. I wouldn't be too afraid of it, provided that it is planned to be used for a limited time. My experience has been that the longer I'm on it, the less I like it.

I'm sure there are others here who have had it used as a pre-surgery (or whatever) treatment who can tell about their experiences with short-term use.

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

erisian

So the hormone therapy is not the one that takes away all of your libido and sends you into depression and freaks you out? maybe I have it mistaken with something else I read on here~~

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

But as I said, it doesn't happen fast, and it doesn't happen to everyone, so I hear. Part of the trouble that I had was the total lack of information that I received about it going in. I didn't realize at the time that I needed to push them into telling me about it. For example, I had no idea until recently that the hot flashes were treatable. Nobody told me, nor did anyone ask if they were bothering me, and since I didn't know, I didn't ask.

I would like to find out if there have been any studies done on the side effects since these drugs were approved. It seems like once a drug gets approved, no one cares any more unless patients start dropping dead. The pre-approval studies cited in the Lupron prescribing information were only 24 weeks (2 3-month shots) long and had 94 participants, so they didn't get any information about long-term use.

http://www.rxabbott.com/pdf/lupron3month22_5mg.pdf

Trew
Posts: 892
Joined: Jan 2010

With Eligard, ah, about 2 weeks and I was there as far as the end of libido goes. But I was still leaking a lot from surgery anyway, and half of my important nerves were taken out 4 weeks earlier with surgery, so I have no idea how things are with me.

I guess Lupron and Eligard are about the same. I hate to scare you but they are no nonsense type drugs. Serious stuff.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

I guess I should have said SOME of them don't happen fast: Atrophy and bone weakening come to mind. Of course, that makes it more insidious in a way, sneaking up on you.

Trew
Posts: 892
Joined: Jan 2010

So far this whole experience has been a surprise. Bang! Bang! Bang! And the Eligard is affecting my memory some and I sometimes have trouble keeping it all together.

I know the hot flashes and a few other dreaded side effects came pretty quick after that first shot.

absolutely no warning by the PA who mentioned I was going to get a shot- that really bothers me. anything that is life changing needs to be explained to a patient. Cancer doesn't make me less of a person or anything.

I am very close to changing doctors.....

Trying to figure out if I should do it before my next shot in April or after.

bdhilton
Posts: 758
Joined: Jan 2010

I believe your husband is 73…I am sorry he has been diagnosed and has become part of our reluctant brotherhood… I was diagnosed at 54 and had surgery right before my 55 birthday… You have many choices based on your clinical cancer grading.

From my understanding they typically do not recommend surgery over the age of 70 but that is just my understanding as I am not a doctor but during your journey of investigating the different options I would be looking hardest at the proton and different radiation treatments…just my 2 cents…

For myself I had an OPEN RPP by Dr. Catalona at Northwestern in Chicago (the best or one of the best in the world with this procedure) on March 3, 2010 but I will more than likely need some radiation “cleanup” (recommended by Dr. Catalona and my Urologist in Atlanta) within the next 90-120 days because my cancer did break through into my right Seminal Vestibule (apparently all negative margins but recommending as a cautionary measure
...So more research for me next couple of months…

Anyway, god bless during this new journey...

Best to all

Trew
Posts: 892
Joined: Jan 2010

My dad had the open surgery when he was 72. He was an active 72, and that was 14 years ago. Since then he has been on and off hormone shots. My mom and dad have no records of his surgery or exactly what the hormone shot is for. Mom thought his lymph nodes were involved- but we have no idea.

bdhilton
Posts: 758
Joined: Jan 2010

There are exceptions to the rules for everything and I am sure excellent health would be one of the requirements…I am not a doctor just read a lot…At the end of the day, everyone needs to make thier own treatment decision

Wow I am glad to hear that your dad is 86 and still fighting the fight…God bless

Trew
Posts: 892
Joined: Jan 2010

My dad turned 87 in January. He had the open surgery in the U.P. he sure looked rough for awhile but he is still hanging in there. When his PSA goes up he gets a shot and then it goes down- been like that for the last 10- 12 years.

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

thanks for your comment...He DH is 73 still works 3 days a week as a auto parts delivery driver...walks 2 miles a day ...but he is still 73...:-)
I was wondering about the age thing...Do you think the recommendation to not do prostate surgery at 73 or to not do ANY sugery after 70?? I guess what I need to know is ...Is Prostate surgery really a more difficult surgery to recover from than any other surgery...I am guessing that it is a major surgery...

Belive it or not I have heard about DR. Catalona from a girl that works in my building
she said that years ago that Dr. Catalona saved her brothers life with his surgery...that he had full sexual function after the removal of his prostate...
But isnt Dr. Catalona getting up there in age? and does he still do his surgeries?
and what exactly is an open RRP???

Sorry for so many ?'s but I have to know this stuff

thank YOu so much~~~

Eva

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

Here's a good page about it:
http://www.upmccancercenters.com/cancer/prostate/hormonedrugtherapy.html

It has a good list of the side effects, and info about intermittent therapy.

They list loss of libido and ED at 90%.

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

I had a friend who was getting the Davinci (robotic) surgery where they make 5 or 6 small cuts to remove the gland. During that surgery the robot failed & the "open" procedure had to be done. The open cut is from the near navel to the pubic bone...approx 6". There usually is more blood loss & greater heal time then the Davinci. Some say the open is better at "finding" all the cancer. I don't know if there is solid data to support this.
I personally had the Davinci surgery that was a failure....in that I still had a PSA...& rising after surgery.

The Davinci procedure itself is major surgery...but not that difficult for a man in reasonably good health. I was playing tennis 10 days after. However, most men over 70 will probably die of something other then prostate cancer since it is slow growing.

Have you considered radiation? I had 37 IMRT treatments with virtually no side effects. My PSA is .3. Take your time & do the research & hug your guy. Its not a pleasant time for him.....but he still should be able to live a quality life if he & you don't let PCa overwhelm you.

Trew
Posts: 892
Joined: Jan 2010

Doctors can collect more lymph nodes for sampling with the open. When I was at LLU for proton/rad my oncologist told me the average sampling he sees from Devinci is 3 lymph nodes when there are about 150 around the prostate. He told me he likes to see a sampling of 10% or 15 nodes which is very rare with the De Vinci.

bdhilton
Posts: 758
Joined: Jan 2010

I would like to talk to you about your IMRT treatments sinced it looks like I will more than likely go down the same path...thanks

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Sure, I can take questions here or email at koperg@bellsouth.net.

Regards,
George

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

GKOPER

I am also emailing you to ask you about IMRT~

bdhilton
Posts: 758
Joined: Jan 2010

RRP is just the open process...

Yes Catalona is 67-68 I believe but he is an exceptional man in general… He still does 2 surgeries a day Monday-Thursday plus has the time and professionalism to personaly call you and see how you are doing… He also runs a research facility, teaches surgery, writes medical papers, speaks at medical conventions around the world…etc…Yes he will not be doing this forever but he is still going strong…

My surgery was around 4 hours (pretty typical and he does 2 of these a day!!!) Yes the younger you are the better you will recover is why I suggested that you guys look into radiation or proton… Quality of life has a lot to do with this journey…Your husband is 18 years older than I am…

I had total control of my bladder when my cath was removed last Monday and I am already getting partial erections 2 ½ weeks after surgery plus walked over 4 miles today (4 separate walks)…so my experience so far has been excellent…Unfortunately my cancer turned out to be regional instead of local and it has been recommended (not required) for me to have some radiation “clean up” in about 90-120 days out from surgery ….
Good luck and god bless you guys in your journey

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

bdhilton

what exactly does "some radiation cleanup " mean? is it a short
round of radiation?

bdhilton
Posts: 758
Joined: Jan 2010

37 treatments i.e. 6 1/2 weeks and 64cy of radiation ...if I elect to do this

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