NCI Designated Cancer Centers and What They Mean For You After Cancer Diagnosis

Recently, I was asked what was the #1 advice I give to cancer patients through my blog and business.  My cancer experiences are based upon two years of Stage 3 cancer treatment myself, along with the cancer diagnoses and treatment for my mom, my sister,  (both survivors) and my beloved dad who died from Stage 4 pancreatic cancer.   My response came quickly:  “Always get a second opinion from a National Cancer Institute Designated Cancer Center.”

nci-comprehensive-logo     What is an NCI Designated Cancer Center?   NCI-Designated Cancer Centers deliver cutting-edge cancer treatments to patients in communities across the United States, mostly large university hospitals.  The NCI-Designated Cancer Centers are recognized for their scientific leadership, resources, and the depth and breadth of their research in basic, clinical, and/or population science.  Receiving the NCI-designation places these NCI cancer centers among the top 4 percent of the approximately 1,500 cancer centers in the United States.

Now that we have a brief definition of what they are, this is why I am such an advocate of these cancer centers.  And here are a few more reasons why:

1)  I received an email from a woman who had just been diagnosed with a  rare breast cancer, but it was very early stage.  At her local hospital, she had been told she would need 5 months of grueling chemotherapy and another dangerous intravenous drug for one year.  Literally, I begged her to go to an NCI Designated Cancer Center as there was one 60 miles from her home.  After back and forth emails for weeks, finally, she relented and went for a second opinion.  It was discovered that an error had been made in the pathology report at her local hospital.  She did not have the more rare cancer she was told.  Thus, she did not need chemotherapy or the other drug!

2)  My 80 year old mom was diagnosed with breast cancer.  She told she would need chemo and radiation which at her age, could have been deadly with her heart condition.  Upon examination at an NCI Designated Cancer Center, it was determined that she would not need either, only a lumpectomy.  The experts determined she was more likely to die of something other than breast cancer, yet the final decision was hers.   Five years later, she is going strong!

3)  Having spent hundreds of hours around an NCI Designated Cancer Center Waiting Room for over 200 visits for 7 years and counting, it is a passion to talk with cancer patients and survivors to hear their stories.  Through the years I have heard countless stories of people who were told they had months to live and to get their affairs in order.  I remember one man named Herb very well.  He was told he had 3 months to live with a Stage 4 Esophageal Cancer diagnosis, and with that news, he decided he would make the 250 mile one way drive to an NCI Designated Cancer Center.  The day I met Herb, he was there for his 9 year checkup!

4)  Joan told me her story – she was also told she had months to live with a lung cancer diagnosis.  She made the decision to go to an NCI Designated Cancer Center where she took part in a Clinical Trial.  I met Joan on her sixth year of being cancer free.

5) Not only are NCI Designated Cancer Centers exceptional in their treatment and research, they have more money and resources to help patients.  My sister received a $21,000 grant from her NCI Designated Cancer Center to cover her ridiculously high insurance deductibles with no strings attached!!

6)  NCI Designated Cancer Centers treat cancer with a team approach.  A Tumor Board consisting of many cancer experts meets to review each and every case and makes an individual plan for you.  It takes the guesswork out of cancer by having these experts in one place at one appointment.

7)  Cheryl, a close family friend had a son and a daughter diagnosed with rare and deadly cancers in their 20s many years apart.  Cheryl, who was a medical professional, had MD Anderson Cancer Center in Houston (#1 NCI Cancer Center in the country) on the phone within minutes.  Their family had to make huge sacrifices, but both of those children are alive, well, cancer free and thriving in their adulthood.  Her daughter recently had her first baby.   When Cheryl was diagnosed with breast cancer years later, she didn’t even think about going anywhere but MD Anderson.  These large centers have departments that will help you find housing while you are living out of town.

8)  When I received my diagnosis for breast cancer, everyone thought I was Stage 4 but thankfully turned out to be Stage 3.  I knew I needed to get to a large cancer center so I chose the University of Michigan in Ann Arbor because it was the closest to my home, a 120 mile round trip drive.  I knew nothing about NCI Designated Cancer Centers at the time, but learned quickly about their quality and care since University of Michigan is an NCI Center.   My insurance was not in network when I got to U of M, and I was told I would be responsible for 40% of payment.  At that point, I just wanted to live and thought I would figure it out later even if that meant bankruptcy as 40% would be a huge number.  Within a month, I got the notice that my insurance company agreed with the University of Michigan and it was now IN NETWORK for me!   These large cancer centers have a lot of clout with insurance companies and the staff to accomplish coverage!

9)  Advice from an NCI Cancer Center can also mean not what you want to hear.  Sharon, a lifelong family friend was diagnosed with a rather rare late stage cancer and was told chemo would begin within days.  Her son, a big advocate of larger cancer centers, began to make calls to NCI Designated Cancer Centers including Mayo Clinic, Cleveland Clinic and University of Michigan.  He took his mom for the appointment where Sharon’s family was told not what they wanted to hear – do not begin chemo.  And when pressed how long she had to live, the doctor responded, “Two weeks – enjoy that time with your family.”  Sharon died two weeks to the day from that appointment and thankfully did not spend it being sicker than she was on chemotherapy.

10) Kathy, who is now my good friend thanks to cancer, called me the day of her breast cancer diagnosis.  “What do I do, where do I go?” she asked.   I told her my advice and she followed it.  Thankfully she did, as it turned out Kathy had an aggressive Stage 3 Triple Negative Cancer.  After a year of regular treatment, it was followed by a newer oral chemo drug and then she will participate in a clinical trial to keep that cancer at bay!

NCI Designated Cancer Centers are not perfect.  But getting a second opinion from an NCI Designated Cancer Center certainly ups your odds that you may survive that cancer diagnosis.  The NCI-designated cancer centers were established to be national leaders in cancer treatment, research, and education. To gain a designation, the highest ranking given by the NCI, a center must meet specific criteria:
-A strong core of basic laboratory research in several fields, such as biology, chemistry, immunology and molecular genetics
-A mechanism for transferring research findings into clinical practice
-A record of innovative clinical research studies in the community served by the center
-A program of high-priority clinical trials for therapies with unusual promise
-A program of cancer prevention and control research
-A program of research training and continuing education for health care professionals
-A wide range of cancer information services for patients, health professionals and the surrounding community
-A commitment to community services and outreach activities related to cancer prevention and control

It is always perplexing to me that individuals will travel thousands of miles on a road trip for vacation, will go to many surrounding cities to research before buying a new vehicle, will travel hundreds of miles just to go to a new shopping facility, but when it comes to their health, the closest cancer center is good enough.  The closest cancer center may very well be good enough.  Very often the NCI Center agrees with the treatment proposed at your local cancer center and treatment can happen close to your home.  But make sure that is the case by getting that second opinion from the NCI Designated Cancer Center.

Here is the link to find an NCI Designated Cancer Center in the USA:

https://www.cancer.gov/research/nci-role/cancer-centers/find

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Check out my cancer and chemo hats at http://www.hellocourage.com

 

 

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