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Shocked in Idaho

fishing_fool
Posts: 18
Joined: Apr 2009

On April 23rd @ 2:30 p.m. I received the info that my biopsy was positive for cancer. My mind is a complete mess. I have an appointment with Dr. Todd Wald*** in (Meridian, ID) just outside Boise, ID. I have been told he is very good with the da Vinci Surgical Method.

Has anyone gone to this Urologist? Any feed back? I am 56 - out of twelve biopsies 1 came back positive. Less than 5% tissue. My gleason score is 3+3=6. There is so much to absorb. First concern is to live - second concern is to save the nerve bundles on each side of the prostate. Feeling Shocked!

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

You are among friends here. There may be someone here that has heard of that physician. There are many among us, including myself who had the procedure performed back in February of this year, that have gone through the Da Vinci surgery and will gladly share experiences. I wish you the very best my friend, and here that is what you are, a friend to us all. Let us know how you progress.

lshick's picture
lshick
Posts: 63
Joined: Apr 2009

Take a deep breath. No, deeper, suck all the air out of the room. Now, let it alllll out.

Your Gleason tells us that you've got time to think this one through. There's no hurry. Really.

OK, now. What's your PSA number? Staging? If you don't know, go back to your urologist.

Take your numbers to the Sloan-Kettering website http://www.mskcc.org/applications/nomograms/Prostate/index.aspx and you'll get some initial guesstimations based upon those who have gone before you about outcomes from various treatment options.

Then go to the Partin Tables at http://urology.jhu.edu/prostate/partintables.php to see the odds that the cancer is confined to the prostate. Important, yes?

Finding the right treatment path is less important than finding the best practitioner. If you go with daVinci (I did, see my story at http://www.sv-moira.com/ProstateCancer.htm) you want someone who has done at least hundreds of prostatectomies with that technology, preferably thousands.

Go to the American Cancer Society (yup, the folks who host this site) at https://www.cancer.nexcura.com/Secure/ToolBox.asp?CB=265 for TONS of info on various treatment options (lots of data you have to put in, don't despair if you don't have it all).

With the numbers you've given us, your chances are very, very, very good.

Take another deep breath. You've got time to do this right.

lshick's picture
lshick
Posts: 63
Joined: Apr 2009

Begin putting together a list of questions (on paper!) for the Drs you're going to talk to. Keep written records of their answers (I wish I had). A good starting point is at http://ustoo.com/Newly_Diagnosed.asp.

Good luck, and come back and let us know how things are going.

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

Hello Fishing_fool, your numbers are like mine, I am 54, 3+3, one of twelve core samples positive. My PSA was 4.43. I will have my surgery on May 22nd, Da Vinci at Kaiser in West L.A. Everyone here knows what you are going thru. I even wondered about watchful waiting. But the fact is, I want to know it is out, gone, not growing (slow or fast) anywhere but in my body. Read everyones threads. Wubbs is always there on private e-mail, so was Ismetals,, they answered all the questions I put to them about their surgeries, etc. Olee, Shipjim, everyone is here for you. Been there , done that, so to speak. I have read every single thread here to get the feel of what we all have to go thru. We are here whenever you need us..any of us... welcome to the family. an extended family. Sorry you have to be here, but glad you found us.

hopeful and opt...
Posts: 1353
Joined: Apr 2009

Since I am a patient of a doctor from UCLA, I am interested in attending a support group from that area. I met someone at a support group in Long Beach, who mentioned that there is a support group in West LA that meets on a Monday. He said that the group is part of "The Wellness Community" . I looked it up, and there were a few different addresses, and I did not see anything about a prostate cancer support group.

Well, I am wondering if you know about a prostate support group that meets in west LA. If so what is the address, day of month and time.

Additionally it might be nice to meet there.

Good luck with your surgery. I had belonged to Kaiser for many years, and they always did a good job for me with whatever service that I required.

Ira

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

Thank you Ira, I also thought of active surveillance , but at 54-55 I feel it was too much of a risk to hope it stayed insignificant PCa. I am not sure of the times or locations of the support group. I live in the Riverside area, but if you contact Kaiser they do keep a listing of the support groups for prostate.I looked for a flyer I had on the last meeting,but I must have put it away. Best wishes on your continued success.
Jim

hopeful and opt...
Posts: 1353
Joined: Apr 2009

in all honesty.........a part of me wants to do the surgery, I am in good shape and 66 is not that old......and be done with it.....well, I had my mri last thursday........I called today, and was told that my doctor was out of town and will call me, I think tomorrow.......I made a list of questions to ask him about my cancer...anyway I will know where I stand .

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

Oh Yea.. and don't forget to breathe.....deep

JoeMac's picture
JoeMac
Posts: 77
Joined: Jun 2008

Aloha fishing_fool,
Your indications suggest that you have plenty of time, how is your PSA, steady, rising?
Many many men die of other causes, but most have prostate cancer. You have a choice. Most MEN want that cancer out, but do not realy understand what they will give up in the process. The following sites are useful
http://www.cancercare.org/
http://www.yananow.net/
At cancercare you can talk (800 numbers)to trained oncology counselors about PCa.
If you and your partner have an active life together, that will change if you are treated (any treatment) for PCa.
I did not have a choice, was treated, was very lucky. The past 2 years have been bad, but they are begining to look alot better.
Faith, Hope, & Love,
Joe 67 Hamakua Coast

hopeful and opt...
Posts: 1353
Joined: Apr 2009

do you have a history of your PSA's?

The volume of your cancer is low, your gleason is moderate. You do not have to rush to make a decision. Take your time. Prostate cancer is slow growing.

I would get a second opinion of the pathology of your biopsy. John's Hopkins, Dr. Epstein is a good choice.

By the way, I'm ten years older than you, with number somewhat similar,with a steady 2.2 PSA and I currently doing "active surveillance". A robotic surgeon told me that my cancer is indolent, not likely to grow. As part of this treatment at ucla, annual mri, biopsy and quarterly psa's.

I'm not saying that you should or should not do active surveilance, but especially if your psa is holding, you have plently of time to make the right decision with the RIGHT doctor. Remember if you get the surgery, you will get only one, so if you have to go to a different city for a good doctor, do that.

By the way, "shock' is a reaction that most if not all of us have gone thru.

I've found that we are all pretty much Brothers here, and and also at any support groups that I recommend you attend.

Ira

hopeful and opt...
Posts: 1353
Joined: Apr 2009

Thanks for the conversation that we had. Afterward I felt very upbeat. It was a plesure to speak with you...................Ira

whubbs
Posts: 77
Joined: Sep 2008

Fishing fool- Looks like the boys have beat me to the key advice that we've all heeded... stop and think, get some more opinions, read up on here, get yourself educated and make the best choice for YOU.
My thread http://csn.cancer.org/node/163769 documents my experience and as you may have read, I've offered to everyone to email me at cobrabite427@yahoo.com with ANY question you have regarding the robotic surgery, preparation, recovery, side effects, etc. and I'd be happy to share.
There were a couple guys I emailed back and forth with for a while, and we found that a simple phone call goes a long way too.
Your with friends here, we've all gone through the same thing (with varied treatments) and understand the gravity of what your feeling, and helping others who are facing what we did certainly is a good feeling for us too.
Good luck!

tonybear
Posts: 92
Joined: Mar 2009

relax, go fishing and clear your head, this will workout for you. we have all been there and had that hit with the cancer news. like you've been told, breath and know you're at a good site for information and support. tony

wishbone
Posts: 1
Joined: Apr 2009

Take a deep breath...then go get Pat Walsh's book "Guide to suriving Prostate Cancer-2nd edition". He helped pioneer "saving the the nerve bundles". Read all the chapters that you find relevant and then read them again.
We are in a similar place. I am 56, was diagnosed on April 17, 10% positive biopsy(1 of 10), Gleason 3+4. PSA 2 or 4 depending upon which lab your believe(but up from .8 PSA 19 months earlier). I am opting for the open surgery at Johns Hopkins in Baltimore. I am going that route because it is the method with the longest proven track record and the surgeon can feel the tissue/nerve bundles and make a decision about what tissue to take out and what to leave(that is what Pat Walsh says but he is an open surgeon).
Do your homework. If you go surgery, get one that has done A LOT of these. And ask him/her the questions that Walsh tells you to ask in his book. There is no need to rush.
You have a very high probability of a complete cure. You'll be out fishing again before you know it.
Be positive.

jeanj15
Posts: 1
Joined: Jun 2009

I saw your post and I hope that you will read this in time. There is a prostate cancer support group in Meridian where you can ask just those questions that you need to know to make a decision about local treatments. It meets every second Thursday of the month (that is tonight June 11) at St. Luke's in Meridian. It is called Us TOO and if you go there will be signs at the door directing you to a downstairs meeting room. The meeting starts at 7PM. Tonight a Dr. Williams is talking from 7-8 about PSA tests and their validity, then the group opens up for a general discussion amongst it's members. Wives and partners are welcome too. It's a good group if you are looking for local information. Good luck. Jean P.S. If you go tonight, look for Jean and Wendell and say "Hi".

fishing_fool
Posts: 18
Joined: Apr 2009

We are coming to Meridian next weekend. Have an appointment on the 19th with the Doc. AJ and I would have enjoyed attending. We live in IF. Do you know anything about Dr. Wald***? If so… and if you don't want it posted just ask for my e-mail address. We are still soaking in any and all information. Thank you so much!

dopplerjockey's picture
dopplerjockey
Posts: 39
Joined: Jul 2009

Hey fishing fool. Sorry to hear the news. I just had Dr. Todd do my surgery on May 04,2009, pre-biopsy Gleason 6, post-surg. Gleason moved to 7. I like Dr. Todd very much, his staff at the clinic are a little difficult to work with at times. And the nursing care for the surgery at St. Al's was so very poor. Right now, I struggle with persistant incontinence, using 2-3 pads/day. So far, despite daily doses of Cialis/LEvitra, and using the VED pump daily, no spontaneous or useful erections. I continue to have pain in the perineum region, but a 3 week course of Aleve is supposed to help resolve the inflammation.
I am 56 yrs. of age, with a strong family history of Prostate cancer, with my grandfather dying from it, and my father and his two brothers having had treatment for it. So, I knew it was just a matter of time before it hit me.
This post-op recovery is no picnic for sure, but my wife and adult children are glad I had the surgery, giving me about a 70% chance of cure. So you hang in there, and contact me if you have further questions that may be of help.

fishing_fool
Posts: 18
Joined: Apr 2009

I was very happy to hear that someone knew Dr. Todd. He is suppose to be the doc who has the most experience with the divinci. Did you have the divinci? Tell me why his staff is difficult to work with... and St. Al's? We are coming from Idaho Falls. You would think that someone with cancer would be treated a little more kindly? I have read on the other comments that early incontinence and E/D are sooo common early on. Do you feel that he did not live up to a standard of which he is known for? I am very nervous with this whole thing. And the closer I get - it scares me. Sorry for all the question. I just have so many thoughts running all the time. Did they get all your cancer? Did they disturb any of the nerves? Why 70%??? I would think now you have had the surgery it would be higher. Thank you for sending me a message. I just saw it today. Best of luck and good thoughts to you. AJ - I appreciate you talking to me.

dopplerjockey's picture
dopplerjockey
Posts: 39
Joined: Jul 2009

It is my understanding that Dr. Waldmann is the most experienced urologist in DaVinci in Idaho. Yes, I had my surgery robotically. I had to stay in the hospital an extra day, as I take anticoagulants due to a previous stroke. Know that I have worked in medicine/surgery for the past 38 yrs. as a Vascular/Cardiac technologist, so I tend to be maybe more critical in my assessments of folks in medicine. Dr. Waldmann's staff are not of my age group, and I think that that reflects on their level of service. Example, they ran a post-op PSA test, and never called me the results, I had to call them to inquire as to the outcome. Now, wouldn't you think that something like that would important to the patient ? As far as St. Al's, maybe I just drew a bad hand when it came to the nursing care, and after having worked there for 8 yrs, I found I was embarrassed by the poor quality of patient care. I feel Dr. Waldmann did live up to his end of the bargain, however, as the surgeon, it would be my suggestion that he counsel his clinic staff, and hospital staff on doing a better job for his patients. I understand your concerns, I had the same feelings, it is probably very normal. They are not sure if they got all of the cancer, and they can't be at this time. It will take repeated PSA blood tests over the yrs. to decide if this procedure was a cure for me. Why 70%, because that percentage is based on a number of factors, like the Gleason score on the pathology report after the surgery. Mine was bumped to a Gleason 7, as cancer was in both lobes of the prostate, whereas the biospy in Feb. 2009 found it only in one lobe. Dr. Waldmann believes that he did spare nerves on both sides in my case. If you would like to chat, you can catch me on Yahoo chat messenger at clearh2ocwboy, and I will try to help in any way that I can. Best of luck.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

I live in Tn and am scheduled for my davinci surgery on August 12th. I'm 54. I can relate to your thoughts running through your head as they are mine also and the closer the date comes up the more nervous I become. You mentioned that your dad and brothers had the Prostate cancer also. Can you talk to them about how they are doing? My dad was treated back in the mid 90's and doing ok for his age (Late 70's).

Let us know how your appt goes everyone on this forum has been very supportive and I also appreciate all the feedback from other men and also the women who's husbands/boyfriends have been down this road.

NM
Posts: 214
Joined: Jul 2009

Hi fishing fool I know exactly what you mean i was diagnosed last week and have a gleason score of 3+4=7. I cant help you at all but just wanted you to know you arent alone on all the issues hope this helps a little.

gleason9
Posts: 6
Joined: Jul 2009

As you can tell by my name? Gleason 9 my pathology report was not encouraging. I had a radical robotic prostectomy Nov 2008, 5 months later I had a PSA score of .825 started Lupron depot hormones. Then 45 radiation treatments waiting for psa test in middle aug. Then decide what is next. I am playing golf 3 times a week go**** to the gym at least 2 times a week and I am 71. Hang in there.

dopplerjockey's picture
dopplerjockey
Posts: 39
Joined: Jul 2009

Somehow, I have not been able to retrieve you email address. When I responded previously, it did not go through to you, and you had requested my phone number. So if you are out there monitoring this discussion board, contact me at dgrant5347@yahoo.com
Hope you are doing OK
Dallas

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