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HAVE YOU JUST BEEN DIAGNOSED?

Patty R's picture
Patty R
Posts: 7
Joined: May 2017

I'll try to keep my background short, just to get to my point.  After seeking help for a kidney stone on my left kidney, I was diagnosed with a 2.9 cm kidney tumor on my right kidney in March 2013 by a Urologist with likely metastasis (due to location) and with that a diagnosis of 1-1.5 years.  I was scheduled for radical nephrectomy for three days later.  Well, MD Anderson happens to be in my hometown of Houston, so I decided to get a second opinion.  I called and was given an immediate appointment and so glad I did. In the meantime, I looked for and found a 1 year old x-ray done for my bladder when I lived in London.  I took it with me to see an MDAnderson Cancer Center Kidney Cancer Oncologist who had a different story.  Long story shortened I did have a 3.2cm tumor and 20% of my right kidney removed in April 2014.   It was Chromophobe RCC with clear margins, no metastisis.  I have my check ups with MD Anderson and am, thankfully, still cancer free.  

As a result of my experience I became part of team of Cancer Patient Advocates and I have housed, in my home, about 30 different cancer patients who were coming to MD Anderson for their second opinion. Needless to say, I've spent hours and hours turning into days and days of talking to all kinds of cancer patients, each with their own story, own outcome.   This is what I have learned. . . 

A)  When Doctors are receiving their degrees, someone is graduating last in that class.  Don't go to him or her.  Go to the best doctors in the graduating classes.  Same goes for radiologists.  They will be found at (AS OF JUNE, 2018 ranking by U.S. News & Report)

1. MD ANDERSON, Houston.

2.MEMORIAL SLOAN KETTERING, NYC

3.MAYO CLINIC, Phoenix AZ, Jacksonville, FL, Rochester, MN  

4.DANA-FARBER, Boston

5.SEATTLE CANCER CARE ALLIANCE

6.JOHN HOPKINS

7. CLEVELAND CLINIC.

This is your LIFE.  TRAVEL to the Cancer Center closest to you even if ONLY to get the smart and highly recommended second opinoin on a diagnosis and line of treatment. You can always take that protocol back to your local oncologist to administer.  This one decision can make the difference between life or death.  I've seen it and have the sad stories to tell.  

B) Start studying. It pays to be your own advocate.  Even though i switched to MD Anderson Cancer and Research Hospital for my partial nephrectomy, I still did online homework.  I found out the Very Good Kidney Oncologist I had been assigned to did not use the DaVinci Robotic Arm in surgery, so I was automatically scheduled for the big scissor cut half way around my body that this surgeon did.  When I learned, online, that a collegue at MD Anderson DID have experience with the Davinci Robotic procedue, a simply phone call requesting a different doctor at MD Anderson made my hospital stay go from 6 days to 2 and my healing time from 6 weeks to 2 weeks.  Instead of a scar half way around my body, I have 5 little bullet hole marks.  Keep studying.  If a doctor tells you to stay off the internet, he is the wrong doctor.  Know your disease, Know your Doctor's credentials...Get answers to any question you have, any way you can.  Most importantly, run them all by your Dr, also.

C). Have An Advocate.  This is especially true if you are going to be going through chemo, trials, radiation or any treatment that will incapacitate you somewhat here and there.  Have a Loved one Keep notes and a file for you, to be right there for you during this journey.  Someone to THINK FOR YOU, when you have the mind fog going on or physical side effects to deal with. 

D) Speaking of "Keeping".  Cancer patient or not, KEEP a copy of every test ever done on you.  This goes for blood work, x-rays, lab reports, ct scans, mri's.  Everything.  Because I kept a CD from a Bladder X-Ray (for Urinary Tract Infection), I went from an emergency radical nephrectomy to 1 year of observation, followed by a partial nephrectomy done robotically. 

E) Miracles Happen!!  I've seen them with my own eyes.  Do your own thorough research for various Cancer Trials being conducted all over the U.S. in addition to studying whatever treatment protocol you are given for your diagnosis.  KEEP THE HOPE AND FAITH BURNING WILDLY.

I'M Sorry for the long post.  I'm JUST a thankful cancer survivor who is PASSIONATE about getting the absolute best care you can get, when dealing with YOUR LIFE vs. Cancer. 

icemantoo's picture
icemantoo
Posts: 3208
Joined: Jan 2010

---and thank you for the help you have given others.

 

 

icemantoo

APny's picture
APny
Posts: 1933
Joined: Mar 2014

Great post, Patty. Totally agree with you.

donna_lee's picture
donna_lee
Posts: 892
Joined: Feb 2009

Thanks for the info and the work you've done, Patty.

Twelve years ago, I was offered 5-6 months, "unless something could be done," i.e. surgery.

Mine had already mets'd to the liver and they weren't sure where else.  With the push from my local Onc., a team was assembled at Oregon Health and Sciences University to do the work.  Two specialist surgeons and a team of OR/radiology/and others performed an 11 1/2 hour surgery that removed the R. kidney, positive set of nodes posterior to the kidney, left lobe of my liver, the gall bladder and congenitally defective bile duct.  Several wedges of the right lobe of my liver were resected and biopsied while I remained blissfully "asleep".

I think I've done just about all the items you had on your list; but still have to go in regulary for monitoring and at least a yearly CT.

Way to go, Patty.

donna_lee

stub1969's picture
stub1969
Posts: 790
Joined: Jul 2016

Patty, I absolutely agree with the title of Donna's reply.  You've just been able to encapsulate some of the best advice, recommendations, and knowledge in a post that we should anchor to our CSN homepage.  A big thank you for supporting fellow RCC patients by welcoming them into your home and through the giving of your precious time.  

Here's to many more years of NED to you and continued good health so you can continue your service.

Stub (a fellow chromie)

 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

We have remarkably similar stories.  I posted mine in the Late Night with NED Post.

My tumor was 2.9 cm and in a difficult location.  The first urologist I visited at my local urology office grimaced as he viewe my CT scan and told me that he would need to remove my entire right kidney.  I could not leave that office fast enough, and I went home and started researching doctors and hospitals.  I found the 2012 or 2013 protocols for renal masses, and one of the authors of that protocol is Paul Russo at Memorial Sloan Kettering.  When I visited Dr. Russo, aside from being a reknowned professional in urology and kidney surgery, he and clicked immediately--he was warm, engaging and had a terrific sense of humor.  He gave me reasonable assurances that by performing an open (not robotic) surgery that he would be able to access my difficult tumor location and preserve my right kidney--and he did!!!--95% of it.

The worst part of my experience was my horrible health insurance company, which initially approved and then reneged and withdrew approval of MSKCC and Dr. Russo two weeks prior to my surgery.  It two straight weeks of fighting, including obtaining letters from my doctors, and finally, a call to a local Assemblywoman who called my health insurance company to advocate for me. It worked- and my health insurance company re-approved MSKCC and Dr. Russo.

One of the sayings I like to live by, and it is specific to cancer, is "Don't give up, don't ever give up."  These words were spoken by Jimmy Valvano, a college basketball coach from my alma mater, when he was near death and near the end of his life at 47 years old from cancer. 

 

Don't give up, don't ever give up.  So many people's stories epitomize those words.  Foxy comes to mind most often when I think of those words.

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

Patty, thank you so much for what you do! 

JoeyZ's picture
JoeyZ
Posts: 205
Joined: Mar 2018

Thank you so much for sharing such a great wealth of information! I agree, Superwoman should be in your resume!!

GivingupKidneyPie's picture
GivingupKidneyPie
Posts: 19
Joined: Aug 2018

Patty R - Hello.

I'm LeftBean (Jan). We love London & hope to return for a month or two visit in the not too distant years. Cleveland Clinic is opening a hospital in London in 2020, I hear.

Appreciations from this new diagnosis kidney cancer patient, who will have rad. nephrectomy at Cleveland Clinic (robotic, etc.) Aug. 21

Everything you share is extremely helpfu.

 

This is an odd question, but since we are traveling there from out of state, I'm more concerend about packing appropriate post-surgery clothing.

I'm assuming it will be a struggle to raise my arms to get on tops/shirts etc. that don't have buttons down the front?

I'm assuming no bras for a long time because of wound care issues?

Sorry if this sounds frivolous, among all the serious queries, but it would be helpful to me. I intend to ask the nurse this week, but since I saw your post, decided to ask you Patty R.

AND congratulations on your good journey & many appreciations for the way you have feet-on-the-ground helped so many cancer patients in your community. 

 

Kerri02's picture
Kerri02
Posts: 1
Joined: Aug 2018

Hello, LeftBean! I am actually traveling from Cincinnati to Cleveland for surgery this Wednesday. I pray this finds you healing well :) I would love any advice you could give me! I am so nervous. I am having an open partial nephrectomy. I was told by 2 surgeons it has to be open. I have the same questions as you do as far as post-surgery clothing and I'm curious how your Cleveland Clinic experience went. I did send you a private message as well with my email and phone number. 

Thank you, Patty for a wonderful post. 

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

With ur surgery on the 21st.  I  had a radical neph in October and the best advise I can give you about clothing is loose and comfortable is the way to go.  No bra for maybe a week-you will be healing for a while, take it slow and do what feels right for you-June

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Wonderful post

Goid luck

a_oaklee
Posts: 436
Joined: Nov 2013

Very good post.

For those that are too ill to travel, or perhaps dont have the financial ability to do so, a request for a second opinion can be done just by utilizing all your records and copies of your scans.  Arrangements can be made for a phone consultation.

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