Selecting Your Cancer Medical Team – Priceless

Quite often I get emails asking my opinion about Oncologists or Surgeons.  Even though the patient has a gut feeling the doctor “isn’t the match for me” or “there’s just something I can’t put my finger on” or “I want someone who gives me more hope,” the patient still feels hesitant to look elsewhere or get a second opinion.   After cancer diagnosis, your head is reeling, your life is turned upside down, but remember, your doctor works for you!!  You, or your insurance carrier, are paying him or her for their services!

The  advice I give is this:  Go to the best doctors now or at the very least, get a second opinion from the best.  Your treatment should be the latest and the best.  Your life depends upon it whether you are Stage 0 or Stage 4. If you do not, you may end up there anyway but in much more dire circumstances. There are fabulous Oncologists and Surgeons in small towns and small hospitals as well as in the largest and best cancer hospitals.  The important part is to FIND THEM!

For example, it is in your best interest to find a BREAST surgeon if you have Breast Cancer, not a General Surgeon to do a Mastectomy or Lumpectomy.  Survival rates are higher when a Breast Surgeon does your surgery.   Johns Hopkins Cancer Center explains the reason for this far better than I can:

http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/breast_surgical_oncology/

The benefit of some of the large top cancer hospitals is that most of them use a team approach.  At the cancer center where I received treatment, University of Michigan,  and at most large cancer centers, there is a Multidisciplinary Tumor Board that meets and discusses every single patient that walks through the door diagnosed with cancer.  Not just ONE CANCER EXPERT  makes the decision, but at least TWENTY-FOUR CANCER EXPERTS collectively decide a patient’s course of treatment.  When I knew that many experts were charting my course of treatment, the burden was off my shoulders!  My trust level increased tremendously.

Perhaps a woman is Stage 1 and is on the fence about whether she should receive Chemotherapy.  Having dozens of cancer experts weigh in is invaluable not only because she will have the right treatment for her, but later she will not have regrets.   My sister’s close friend, Cheryl, was a woman like this.  She initially  she was Stage 1, but then had a few nodes involved, which moved her to Stage 2.  However, her local hospital said because she was in her 60s no Chemotherapy was necessary.  Cheryl has worked in the medical field her entire life and did not trust that opinion for her.  She flew to Houston to M. D. Anderson, the Number One cancer center in the USA, to get a second opinion.  Two of Cheryl’s three children’s lives were saved at M. D. Anderson as both had rare cancers in their 20s when they were given little to no hope locally.  Her past experience taught Cheryl to get to the best right away!  M. D. Anderson recommended Chemotherapy which Cheryl did.  Cheryl has no regrets as she knows she got the best care for her.

Not all of us can travel to M. D. Anderson.  But certainly it could not hurt to travel a few hours or a day’s drive to get a second opinion that could save your life.  Often cancer patients give more time to researching for a new car than they do for an Oncologist and Surgeon.  Please do not be that patient!

At larger cancer centers,  Oncologists only deal with their particular expertise of cancer.  A Breast Oncologist only deals with cancers of the breast and their next patient is not a prostate cancer patient.  Also, Clinical Trials are also more readily available at many of the larger cancer centers.  This is especially important because once again, it may save your life.

We all know cancer is expensive, even if you have the best insurance.  Often people hesitate to go to major hospitals because they question whether their insurance is accepted.  The benefit of large cancer hospitals is they have a lot of clout and will fight for your insurance carrier to cover you at their facility.  Initially, I was rejected by my insurance company and was told my major cancer center was Out of Network.  But with the weight of a big cancer hospital behind me, they were the ones who talked with my insurance company.  Next thing I knew my insurance company  changed their mind to In Network and covered all of my treatment.

Here is a list of the 2012-13 Top Oncology Hospitals in the USA by U.S .News and World Report which is well-respected.  If you live outside of the USA, do your research in your country!  It is so important!

http://health.usnews.com/best-hospitals/rankings/cancer

A woman recently wrote this sad plea on a Breast Cancer Discussion Board one month before her death.

“I am looking for a treatment center that someone can give me personal recommendations for that facility. I am in (her location) and do not have the confidence in my oncologist after a couple of  incidences. My recurrence to stage IV was within the past month. I have had one treatment of Doxil. We are having trouble getting my platelets up so I can have treatments but my gut feeling is to go somewhere else or I will die.”

I had communicated with this woman in the past.  An awful thing had happened to her when she was GIVEN THE TOTALLY WRONG CHEMO DRUG at one of her infusions.  Obviously, that should not happen.  Within a year after treatment, she progressed to Stage IV.  This woman’s instincts were correct.  She did die and quickly.  When the wrong chemo drug was administered to her in her Oncologist’s office, she gave the Oncologist the benefit of the doubt.  Perhaps this story could have  a different outcome.

Please follow your instincts when it comes to your Medical Team.  And it never hurts to have that second or third opinion.

I-SPY2 Clinical Trial for Newly Diagnosed Breast Cancer Patients

UPDATE:  12/15/13   some breaking good news about experimental drugs in ISPY2 trials.

http://www.cbsnews.com/news/new-drug-study-method-show-breast-cancer-promise/

If you have been newly diagnosed with breast cancer, you are overwhelmed.  Not only are you frightened for your life and health,  afraid for your family and loved ones, but you have to make many huge medical decisions in a relatively short period of time.  The time when I was newly diagnosed before my treatment plan was is in place was the worst time.  One thing to consider when newly diagnosed is to see if you qualify for a clinical trial, which is a rigorously controlled test of  new drug(s) or procedures.

Katie Brown from Bainbridge Island, Washington wrote and told me about the Clinical Trial she is participating in for her diagnosis of breast cancer.  The Clinical Trial is called                I-SPY2 and is currently recruiting patients from across the country in various locations (see below).

Terry Maas, an Oncology Research Nurse Coordinator at Swedish Cancer Institute in Seattle, Washington where Katie is receiving treatment, encourages women to look at these Clinical Trial websites to allow yourself time to absorb the information, educate yourself by identifying and understanding new terminology, while formulating questions you may have, so you can further discuss them with your Health Care Team.  Ms. Maas recommends reviewing www.ISPY2.org and http://clinicaltrials.gov/show/NCT01042379 to learn more about this I-SPY2 Clinical Trial.

ispy2-clinical-trial.jpg

I-SPY2 will help get investigational drugs to the market much more quickly.  Katie is undergoing standard chemotherapy treatment for her tumor, Taxol with Herceptin, then on to Adriamycin and Cytoxan with Herceptin.  In addition, a yet unnamed drug is being added.  The trial drug she is on is MK2206 which is in pill form and for her is taken as part of the Taxol protocol.   Katie’s tumor shrunk by one-third after only two chemo treatments!

This from the www.ISpy2.org website:

I-SPY 2 is a clinical trial for women with newly diagnosed locally advanced breast cancer

Today most women with breast cancer receive standard chemotherapy.  We know that some breast cancers respond well to standard chemotherapy but some do not.  The I-SPY 2 TRIAL (Investigation of Serial Studies to Predict Your Therapeutic Response with Imaging And moLecular Analysis 2) is a clinical trial for women with newly diagnosed locally advanced breast cancer to test whether adding investigational drugs to standard chemotherapy is better than standard chemotherapy alone before having surgery.  The treatment phase of this trial will be testing multiple investigational drugs that are thought to target the biology of each participant’s tumor.  The trial will use the information from each participant who completes the study treatment to help decide treatment for future women who join the trial.  This will help the study researchers learn more quickly which investigational drugs will be most beneficial for women with certain tumor characteristics.  The I-SPY 2 TRIAL will test the idea of tailoring treatment by using molecular tests to help identify which patients should be treated with investigational drugs.  Results of this trial may help make investigational drugs available to more women in the future.

____________________

HERE ARE THE LOCATIONS WHICH ARE CURRENTLY RECRUITING FOR I-SPY2 PARTICIPANTS:

Please refer to this study by its ClinicalTrials.gov identifier: NCT01042379

Contacts
Contact: Meredith Buxton, MPhil, MPH 415-353-7357 meredith.buxton@ucsfmedctr.org
Contact: Donya Bagheri, MS, DABT 650-691-4400 ext 116 dbagheri@ccsainc.com

Locations
United States, Alabama
University of Alabama at Birmingham Recruiting
Birmingham, Alabama, United States, 35294
Contact: Valerie Caterinicchia, RN, BSN     205-934-5367     val7@uab.edu
Principal Investigator: Andres Forero, MD
United States, Arizona
Mayo Clinic – Scottsdale Active, not recruiting
Scottsdale, Arizona, United States, 85259
University of Arizona Recruiting
Tucson, Arizona, United States, 85724
Contact: Amy S Bauland     520-694-0859     abauland@azcc.arizona.edu
Principal Investigator: Rebecca Viscusi, MD
United States, California
University of California San Diego Recruiting
La Jolla, California, United States, 92093-0698
Contact: Cynthia Meyer     858-822-6575     cjmeyer@ucsd.edu
Contact     858-822-5354     CancerCTO@ucsd.edu
Principal Investigator: Anne Wallace, MD
University of Southern California Recruiting
Los Angeles, California, United States, 90033
Contact: Debu Tripathy, MD     323-865-3900     Tripathy@usc.edu
Contact: Kristy Watkins, RN     323-865-0452     Watkins_K@ccnt.usc.edu
Principal Investigator: Debasish Tripathy, MD
University of California San Francisco (UCSF) Recruiting
San Francisco, California, United States, 94115
Contact     877-827-3222
Principal Investigator: Amy Jo Chien, MD
United States, Colorado
University of Colorado Recruiting
Aurora, Colorado, United States, 80045
Contact: Tessa Mcspadden     720-848-0609     tessa.mcspadden@ucdenver.edu
Principal Investigator: Anthony Elias, MD
United States, District of Columbia
Georgetown University Medical Center Recruiting
Washington, District of Columbia, United States, 20007
Contact: Minetta Liu, MD     202-444-3677     Liumc@georgetown.edu
Principal Investigator: Claudine Isaacs, MD
United States, Georgia
Emory University Active, not recruiting
Atlanta, Georgia, United States, 30322
United States, Illinois
University of Chicago Recruiting
Chicago, Illinois, United States, 60453
Contact: Jean Gibson     773-834-2167     jgibson@medicine.bsd.uchicago.edu
Principal Investigator: Rita Nanda, MD
Loyola University Recruiting
Maywood, Illinois, United States, 60153
Contact: Kathy Czaplicki     708-327-3322     kczapli@lumc.edu
Contact: Agnes Natonton     708-327-2237     anatont@lumc.edu
Principal Investigator: Kathy Albain, MD
United States, Kansas
University of Kansas Active, not recruiting
Westwood, Kansas, United States, 66205
United States, Minnesota
University of Minnesota Recruiting
Minneapolis, Minnesota, United States, 55455
Contact: Charlotte Smith     612-625-9498     Smit4652@umn.edu
Principal Investigator: Doug Yee, MD
Mayo Clinic Recruiting
Rochester, Minnesota, United States, 55905
Contact     507-538-7623
Principal Investigator: Judy C Boughey, MD
United States, Oregon
Oregon Health & Science Institute (OHSU) Recruiting
Portland, Oregon, United States, 97239
Contact: Deirdre Nauman, BSN,CCRP     503-494-3078     naumand@ohsu.edu
Principal Investigator: Stephen Y Chui, MD
United States, Pennsylvania
University of Pennsylvania (U Penn) Recruiting
Philadelphia, Pennsylvania, United States, 19104
Contact: Luke Velders     215-615-6821     Luke.Velders@uphs.upenn.edu
Principal Investigator: Angela DeMichele, MD
United States, Texas
University of Texas, Southwestern Medical Center Recruiting
Dallas, Texas, United States, 75390-9155
Contact: Barabara Staves, BS     214-648-1988     barbara.staves@utsouthwestern.edu
Contact: Vanessa Tagoe, MA, CCRC     214-648-7020     Vanessa.Tagoe@utsouthwestern.edu
Principal Investigator: David Euhus, MD
University of Texas, M.D. Anderson Cancer Center Recruiting
Houston, Texas, United States, 77230-1439
Contact: Cara Dunlap, RN     713-745-8748     CLDunlap@mdanderson.org
Principal Investigator: Stacy Moulder, MD, MSCI
United States, Virginia
Inova Health System Recruiting
Falls Church, Virginia, United States, 22042
Contact: Alyssa Bruflodt     703-776-3565     Alyssa.Bruflodt@inova.org
Principal Investigator: Kirsten Edmiston, MD, FACS
United States, Washington
Swedish Cancer Institute Recruiting
Seattle, Washington, United States, 98104
Contact: Barry Boatman, RN     206-215-3086     CancerResearch@swedish.org
Principal Investigator: Hank Kaplan, MD
Principal Investigator: Erin Ellis, MD
University of Washington Recruiting
Seattle, Washington, United States, 98115
Principal Investigator: Larissa Korde, MD, MPH