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SBD
Admiral
Joined: 19 Aug 2004
Posts: 1022
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 Posted: Sat May 06, 2006 7:36 pm Post subject: Positive Margins Are Not Acceptable-Another Surgery May 12th |
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My letter to Dr. Novick, Chairman of the Glickman Urological Institute at Cleveland Clinic.
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April 26, 2006
RE:CCF# (MRN) xxxx-xxxxx
Andrew C. Novick, M.D.
Chairman, Glickman Urological Institute
Dear Dr. Novick,
I am writing to you in hopes that you may guide me to the proper care of my diagnosis of Renal Cell Carcinoma. On March 8, 2006, you had provided me with a second opinion through the eCleveland Clinic. Let me start by thanking you for your second opinion. I realize now that I should have had my surgery performed at the Cleveland Clinic. Instead, I was assured by my Urologist that he was very experienced in this procedure and had performed many, all with success.
My Urologist told me that during surgery, a Pathologist would be available to examine the tumor and if the tumor was not cancer, he would save more of the kidney. He stated that if the tumor was positive for cancer, he would be sure to take out enough of the surrounding tissue as possible. In the event he could not remove the tumor and surrounding tissue completely, the entire kidney would need to be removed.
You had predicted in my second opinion that open surgery was preferred due to possibility of bleeding and an open surgery would be safer. My Urologist performed an open surgery, but no Pathologist was utilized. The surgery lasted an extra 2 hours due to bleeding and I was given 2 pints of blood.
After surgery, my family and I kept asking if the tumor was cancer. He continued to assure us that he did not believe it was cancer. His assistant came to see how I was doing, and when asked, said without a doubt that the tumor was cancer. On the last day of my hospital stay, my Urologist told me that the tumor was cancer but he had got all of it and there was nothing to be concerned about.
Two weeks later, I visited my Urologist for removal of the staples and to go over the Pathology Report. He stated that the Pathology report indicates that there are positive margins. He also said that he thinks that he cauterized the entire area enough to have killed any remaining cancer cells. He said that my follow up care would consist of a CT scan 3 months after surgery and every 6 months thereafter. I asked him if during the 3 month period before the scan if the cancer could grow and spread quickly. He said that the cancer would be caught in time before it could spread.
On Friday, April 21, after posting my situation to the Kidney Cancer Association email list, several people questioned my follow up care and asked if I had a copy of my Pathology Report. I obtained my Pathology Report and found that I had a Fuhrman Grade of 3 out of 4. Upon further research, I have come to understand that the Fuhrman Grade is an indication of how aggressively the cancer grows. I called the Cancer Institute of America and spoke to a Nurse Oncologist who seemed to indicate that the only proper treatment of Renal Cell Carcinoma is full excision of all the cancer cells and positive margins are not acceptable.
I write to you today for some guidance and help. I am concerned that the longer I wait, the less chance I have to limit the cancer to the kidney. I am also concerned of the possibility that the cancer has already escaped the kidney due to the excessive bleeding during the procedure and the positive margins. What should my follow up care be? Should I have my right kidney removed? Can I find out for sure if it has spread? Is there some new drug that might kill any remaining cancer cells?
Dr. Novick, I need some professional guidance and am seeking your advice. If that means that I need to fly to Cleveland to have the Radical Nephrectomy, then that is what I will do. If you need me to pay for another Second Opinion, then I will submit payment, but please help me get the proper care that I need.
Thank you,
SBD
(2) Enclosures: eCleveland Clinic Second Opinion; Surgical Pathology Report |
Dr. Novick called me on Monday and immediately said that the Kidney should be removed. He gave me the names of two surgeons in California, one from USC and one from UCSF. After discussing my options with my family, it was decided that the best course of action was to go to Cleveland and have Dr. Novick perform the surgery. I will have the surgery May 12th and will leave for Cleveland May 9th. I am not worried about the surgery and know that I can beat this Cancer, as long as I know I am receiving the proper care. Dr. Novick is one of, if not the best in the country, so I know I am good hands.
SBD |
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Me#1You#10
Site Admin
Joined: 06 May 2004
Posts: 6503
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| Posted: Sat May 06, 2006 8:02 pm Post subject: |
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SBD...
Best of luck to you as you combat this dreadful malady. You are doing a great job in keeping on top of this thing and I'm confident it will reap you the dividend of a long and healthy life. I believe I can assure you of the
thoughts and prayers of your friends in this small corner of the universe.
Best wishes for a successful and speedy recovery.
Me#1 |
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dusty
Admiral
Joined: 27 Aug 2004
Posts: 1264
Location: East Texas
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| Posted: Sat May 06, 2006 11:00 pm Post subject: |
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What Me#1 said goes for sure SBD. Our prayers and thoughts are with you. Sounds like total removal of the kidney should do the trick for sure. Best of luck and keep that positive attitude.
Dusty
_________________
Left and Wrong are the opposite of Right! |
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MrJapan
PO1
Joined: 27 Sep 2004
Posts: 465
Location: Chiba, Japan
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| Posted: Sat May 06, 2006 11:13 pm Post subject: |
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I will be praying for your quick recovery and looking forward to reading your great posts here soon 
Hang in there  |
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USAFE5
PO2
Joined: 23 Aug 2004
Posts: 362
Location: Reno Nevada
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| Posted: Sat May 06, 2006 11:37 pm Post subject: |
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I have a spare if you need it (hoping you don't but just in case..) one vet to another
_________________
"The most terrifying words in the English language are: I'm from the government and I’m here to help." Ronald Reagan |
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kate
Admin
Joined: 14 May 2004
Posts: 1891
Location: Upstate, New York
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| Posted: Sun May 07, 2006 1:34 am Post subject: |
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SBD my thoughts and prayers will be with you too. (My Dad had Renal Cell CA. The kidney was removed, and the CA never returned. )
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one of..... We The People |
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shawa
CNO
Joined: 03 Sep 2004
Posts: 2004
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| Posted: Sun May 07, 2006 2:30 am Post subject: |
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SBD, my prayers are with you.
Sounds like you are in good hands at the Cleveland Clinic.
May God bless you in your surgery and recovery.
_________________
“I love the man that can smile in trouble, that can gather strength from distress, and grow brave by reflection. ‘Tis the business of little minds to shrink; but he whose heart is firm, and whose conscience approves his conduct, will pursue his principles unto death.” (Thomas Paine, 1776) |
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Wing Wiper
Rear Admiral
Joined: 09 Aug 2004
Posts: 664
Location: Oregon
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| Posted: Sun May 07, 2006 6:20 am Post subject: |
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| Brother, we'll be rooting for you here. Keep a positive attitude and best of luck. |
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LewWaters
Admin
Joined: 18 May 2004
Posts: 4042
Location: Washington State
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| Posted: Sun May 07, 2006 7:20 am Post subject: |
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SBD, I join those wishing you well on this. You will be in my thoughts and prayers as you go through this.
Keep a positive attitude, we are all with you. |
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Uisguex Jack
Rear Admiral
Joined: 26 Jul 2004
Posts: 613
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| Posted: Sun May 07, 2006 4:15 pm Post subject: |
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SBD you weasel, you get better now.
In the meantime Here's something to get a chukle out of you.
Keep us posted! |
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Deuce
Senior Chief Petty Officer
Joined: 19 Mar 2005
Posts: 589
Location: FL
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| Posted: Sun May 07, 2006 7:22 pm Post subject: |
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SBD,
I want to join your friends here in wishing you a full and speedy recovery...and I also want to congratulate you on holding your line with your Medical practitioners...Cleveland, et al. I also want to add that, as a Vet, you have the opportunity for a 3rd opinion, your local VA clinic/hospital. (before I get trashed, please accept that I only have a sample of one, me, to base my opinions of VA medical care on). We all remember the VA medical of 20-30 years ago, that picture is long gone. The VA today has the best doctors in the country in a lot of areas. And guys, they know us better than we know ourselves! I also am in the early stage of a process to confirm a rare blood disease (in the general population, tho' not so rare amongst us Vietnam Vets, unfortunately).
Again, I'm not suggesting you NEED a 3rd opinion, just that it's available to you. and I'm not a medical professional of any kind, just an admirer of what has to be the best National health care system in the country. (again I recognize that it may not be right in every state of the union, but it's right in my state, and may well be right for you Buckeyes).
Finally, that suggestion also goes for most in this audience, especially if you're a Vietnam Veteran (agent orange, don't leave home without it). Please, no matter how good your doctor is, get your VA card, and add them to your favorite healthcare practitioners...you may need them someday.
Sincerely,
Deuce |
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SBD
Admiral
Joined: 19 Aug 2004
Posts: 1022
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| Posted: Sun May 07, 2006 7:55 pm Post subject: |
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Thanks again for all of your thoughts and prayers. I know that with all of you and my family praying each day, this is going to be a piece of cake. It's not like I don't have experiece with a similar surgery already.
I just wanted to clear something up, I am not a Veteran. I have never been in the military, but do have the utmost respect for all of you that continue to defend our nation and am here to help defend you against the likes of Kerry whenever possible.
Thanks again for everything, all of you here will always have a spot in my heart.
SBD |
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Schadow
Vice Admiral
Joined: 30 Sep 2004
Posts: 936
Location: Huntsville, Alabama
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| Posted: Sun May 07, 2006 8:18 pm Post subject: |
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SBD,
You seem to be in the best possible hands with this clinic and that doctor. We're all praying for you and wishing you a speedy and complete recovery.
Schadow
_________________
Capt, 8th U.S. Army, Korea '53 - '54 |
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dusty
Admiral
Joined: 27 Aug 2004
Posts: 1264
Location: East Texas
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| Posted: Sun May 07, 2006 8:38 pm Post subject: |
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Deuce said:
| Quote: | SBD,
I want to join your friends here in wishing you a full and speedy recovery...and I also want to congratulate you on holding your line with your Medical practitioners...Cleveland, et al. I also want to add that, as a Vet, you have the opportunity for a 3rd opinion, your local VA clinic/hospital. (before I get trashed, please accept that I only have a sample of one, me, to base my opinions of VA medical care on). We all remember the VA medical of 20-30 years ago, that picture is long gone. The VA today has the best doctors in the country in a lot of areas. And guys, they know us better than we know ourselves! I also am in the early stage of a process to confirm a rare blood disease (in the general population, tho' not so rare amongst us Vietnam Vets, unfortunately). |
That's the experience I've had with em down here in Texas. I go to hospital in Houston and so far they've been taking good care of me. They have a good reputation in the Houston area.
Dusty[/quote]
_________________
Left and Wrong are the opposite of Right! |
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GenrXr
Master Chief Petty Officer of the Navy
Joined: 05 Aug 2004
Posts: 1720
Location: Houston
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| Posted: Mon May 08, 2006 3:27 am Post subject: |
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Wishing you the best SBD!
Reading suggestion before surgery - The Adventures of Huckleberry Finn by Twain.
_________________
"An activist is the person who cleans up the water, not the one claiming its dirty."
"All that is necessary for evil to triumph is for good men to stand by and do nothing." Edmund Burke (1729-1797), Founder of Conservative Philosophy |
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