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:

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!

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.

Statistics and Breast Cancer…Don’t Pay Attention

We have all been guilty of it on more than one occasion no matter what place we are on Breast Cancer Road – patient or survivor.  Late at night, concerns fill our head, and as we sit in front of the computer,  suddenly we just cannot resist searching on Google “life expectancy for (enter your cancer stage, grade, and parameters).  Boom, up will pop that you will live one month, one year, two years, or 5 years, 3 months and 12 days.

As cancer patients and survivors, we have enough fears and side effects to concern ourselves with on a daily basis.  My philosophy is throw away those statistics.  Quit reading them, quit looking at them, and get them out of your head.  If you are Stage 0, Stage 4.or any stage in between . .don’t read them!

We all know or know of people who lived way beyond the statistics.  People who should have been dead 40 years ago from some dread disease, and they die from old age.  I want to be that person and not a statistic.

My maternal grandmother was a great source of inspiration to me in this area.  In her early 60s, Nana was told her heart was so bad she should have been dead years prior according to all the heart tests.  Her long-time doctor wasn’t helping her.  Often, she could barely breathe and would have terrible heart “spells.”   Nana decided she needed a young doctor with new ideas.

So she went out and found one!  Nana was a snowbird spending winters in Florida, so she decided there would be doctors with new ideas in Florida.   Dr. Werner, the young, bright, fresh out of medical school cardiologist said he would try some new drugs on her that were just approved by the FDA.   He warned her that these drugs did not have much of a track record, but because she had no choice, she should try them. Nana was thrilled to try them as my grandmother always loved trying new things!

When she got out of that appointment, I was extremely concerned.  I asked, “Nana, aren’t you afraid you will die knowing the statistics?”   Nana answered in her sassy, spunky yet loving and faith-filled way:  “Denise, honey, I am not a statistic.  When it’s my time, it’s my time.  I am not going to listen to a statistic.  And I trust that young Dr. Werner will help me get better. God brought him to me.”    My grandmother lived to be 92 and died peacefully of old age.  She was still singing Dr. Werner’s praises until the end and taking the same medicines he prescribed 30 years previously.

That is the spirit I want to live by as a Cancer Survivor.   I replay over and over in my head my encounters with three Stage 4 women I met during chemo.  They were all given 3 to 6 months to live.  All three of them said, “NO WAY.”  They all took action and found a new Oncologist that gave them hope.  When I encountered these inspirational women, they had been alive 7 years, 12 years, and 20 years respectively!!  Separately, they all said the same thing to me.  “NEVER give up HOPE and make sure you trust your Oncologist with your life!”

Don’t let ANYONE take away your hope, especially a statistic.  Protect HOPE like it is the greatest gift you have ever received because it is.  Do whatever is necessary to protect that gift.   Guard and defend it.  Wrap it up in a box, decorate it, put ribbons and jewels on it!  It is your most prized possession.  Treat it that way!