Lung Cancer Awareness Month- Personalized Medicine versus Statistics

If I could get only one message through to a newly diagnosed patient fighting cancer and to the oncologists delivering the news… it would be to PLEASE stop making everything about the statistics.

As a newcomer to the cancer advocacy space I know that thousands and thousands of people are more versed than myself in the science of battling cancer.  I also know that there is an innate tendency to respect the knowledge of medical professionals and experts who have years of study and practice in this field.  We believe that it is a science and that all knowledge is equal.  If you speak to anyone who is alive today because of a second, third or fourth opinion, however, they will tell you emphatically that all knowledge is not equal.

Somehow it became the norm in terminal or “incurable” diseases for doctors to deliver timelines of life expectancy.  In the case of my 39 year old brother he was told quite matter-of-factly that he had six to twelve months to live with treatment.  When someone who has spent their entire professional career fighting this disease tells you this “honest truth” there is a strong propensity to believe them.  They are certainly not trying to hurt their patients… they believe that they are just setting “reasonable expectations.”

I believe that this practice is flawed on many levels.  What are they not telling you when they quote these timelines?

1. The timelines are statistical averages.
2. The data they are based on can be up to five years old.
3. The data is not factoring in recent advances and breakthroughs.
4. The averages include those patients that once told the predictions opt to forego treatment and give up.
5. The averages do not factor in each individuals unique gene markers or mutations.
6. The fact that clinical trials are viable and in many cases successful options.

In short, a newly diagnosed Stage 4 Lung Cancer patient is frequently offered little to no hope for effective treatments.  The fact is that many, many cases are combined to create these statistics and very few patients are actually “the” average.  How is it, then, that one can say to a newly diagnosed patient “with your cancer you have six to twelve months to live.”?  So many patients accept the advice of the first oncologist they see without question.  Once the older, more traditional methods fail doctors are “compassionate and honest” about the grim prognosis.  I have seen patients who chose no further treatment.  This process tamped down whatever vestige of hope they had.  Without hope, there is no will to fight. Without hope, research does not advance.  Without hope, we will not win this war.  Cancer is perhaps the hardest, most painful, most life changing fight one will undertake… and I ask, what greater good is served by taking away hope?

In the last twenty-two months I have heard hundreds of stories of those who did not accept conventional wisdom… who defied the odds and are thriving with cancer.  That happened because somewhere in the process they received HOPE; they learned of other successful outcomes and they found a doctor (or doctors) who did not believe they were a statistic… a medical team that knew it was a battle but suited up to win none-the-less.  It breaks my heart when I see the cycle of lost hope continue.  I understand that we want to accept the first opinion as the final opinion.  We want to believe that all knowledge is equal. The simple (and complicated) fact is that with the speed of research and scientific advances that is just not the case.

Yes, scientifically I know nothing compared to our vast army of esteemed medical and scientific professionals.

What I do know is that every person is different, every cancer is different and that patients are neither the averages of old information nor are they statistics.

We never know how long any of us has, but we do know that if we take away hope and the will to fight the battle is lost.

As they say at my brother Jeff’s alma mater… Fight On!

Jaimi Julian Thompson

If you are or know a newly diagnosed Lung Cancer patients please get in touch with the with the patient-founded and patient-focused Bonnie J Addario Lung Cancer Foundation.

Bonnie J Addario Lung Cancer Foundation

 

 

 

 

Hope

This is my second year of embracing “one little word” for the year.    For those of you who may not have heard about the “one little word” movement, it is simply boiling down your theme for the year to one word and striving to reflect that in all of your endeavors.

On the heels of various, what now seem minor, health challenges in 2013, my word for 2014 was JOY.  I wanted to re-discover my joy.  While 2014 was a roller coaster of ups and downs – with exciting milestones tempered by the loss of loved ones and friends and family medical emergencies – I found great joy in making the most of each day and honoring those who had given so much joy to others and enriched our lives for so long.  2014 was filled to the brim with all things dear to me.

Since my early 20s I have ascribed to the philosophy of making the most of each day and never taking tomorrow for granted… almost to the point where family and friends would make fun of me.  I don’t believe in having regrets and I do everything in my power to minimize the opportunities for their existence.  I believe in seizing the day, working hard, playing hard and loving more.  I believe in making memories, letting people know how much they mean to you, in working to design your life and in staying true to your passions.  I believe in being there when it matters, in helping others when you are able to, empowering others to succeed and that “someday” is today.  Since I grew up in the army moving every year, my only constant was change.  The ability to embrace and seek out change is something I believe to be a key to success.  I never had to ask “who moved my cheese” because I never expected it to be in the same spot.

As 2015 started I had bronchitis and had not yet landed on my one little word.  On January 4th, January 7th and January 12th – learning of my youngest brother Jeff’s diagnosis of Stage 4 lung cancer at age 39 – his (and our) worlds turned upside down.  In the face of the “prevailing wisdom” of the medical community, my instinctive response on that first call (which I think I may have repeated 20 times) was “I do not accept that. I do not accept that. I do not accept that.”  Yet they continued to purvey hopelessness.  As we immersed into the urgent battle to leave “no stone unturned”, I believed my word for 2015 was to be Strength.  Strength not only for today, tomorrow, next week or next month – but strength for the long haul.  We will not stop.  In my search on “strength” I found the mantra “Hope*Strength*Love”.   The Hope, the Strength and the Love pouring out from across the country and the world for #TEAMjeff in the past month has taken my breath away.

In the office of the fourth oncologist (out of the five that we met with) there was a sign that said “Hope Practiced Here.”  The flame of Hope was renewed. We were done accepting the “omnipotent wisdom” that tamped down that flame.  The reality is that they do NOT know.  The more time that passes from that fateful day that they tried to extinguish our Hope the more I feel it was wrong.

So, my one little word for 2015 is HOPE.  It is the beginning of everything – our hope for the future, our dreams, our goals and our being.  Where would any one of us be without the HOPE that drives us forward?  Our hope for love, our hopes for our loved ones and our hopes for success as we each define it?  In my high school quote collection I have the following:  “An optimist is a person who knows how sad a place the world can be.  The pessimist is one who is forever finding out.”  Author unknown.  It always struck me that instinctively you would think it would be the opposite –  that the optimist would always be discovering the negative anew.  I think, however, that the optimist knows and simply makes a choice.  A choice to see the good.  A choice to choose HOPE.  It has been a long month and the battle looms large.  We will fight and keep fighting.  We will be stronger than we ever thought possible.  Most importantly, we will choose HOPE.  And life will be better, and more sweet, for it.  I am thankful from the bottom of my heart for the avalanche of prayers, support and love that continue to lift up Jeff, Kristine and Trenton, as well as our entire family, during this time.

To quote Jeff’s battle cry… “I believe. I am strong. I am ready. I WILL win.”

#TEAMjeff  #chooseHOPE   #julianstrong

#HopeStrengthLove   #NEGU

Love and prayers,

Jaimi Julian Thompson

If you would like to make a gift to Jeff and his family please go to: www.youcaring.com/other/-teamjeff/293551

If you would like to follow Jeff’s journey, his blog is available at: www.caringbridge.org/visit/jeffjulian

If you would like to get a #TEAMjeff shirt and find out more, please go to:  www.teamjeff.org