Asking the Hardest Questions

Jessica Rice is an amazing woman who asks the hard questions.

stage iv

This week I was honored to guest post for Scope, the blog published by Stanford Medicine. The original post appears here.

Since becoming ill, I’ve learned that I have the innate ability to make doctors very uncomfortable – squirmy, even. It’s surprising because I had assumed medical professionals with decades of experience have fielded every possible question a patient might ask.

But I suppose I’m not a typical patient. In November 2011, I was diagnosed with stage IV lung cancer (bronchioloalveolar carcinoma, a subset of adenocarcinoma) with extensive spread to the mediastinal and hilar lymph nodes. At the ripe old age of 30, I joined a very exclusive club of young, non-smoking women with this rare cancer.

My biopsies were immediately tested for genetic mutation and found to be ALK+. Crizotinib had received FDA approval a few months earlier, so it was the logical first course of action. The…

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Sea-to-Sea: METAvivor and Metastatic Breast Cancer Awareness

1236342_223257914499618_934358087_n“…the biggest problem in the breast cancer business, and make no mistake, it is big business, is the fact that we’ve done nothing to change the death rate. NOTHING.” ~AnneMarie Ciccarella 

No Change in Death Rate From Breast Cancer Since 1970

Much media attention is brought to bear to advertise the breakthroughs in breast cancer research yet the truth is that the death rate from breast cancer is basically unchanged since 1970.  Actually, to be more precise, that is the death rate from metastatic breast cancer (MBC).

Sea-to-Sea For METAvivor

Real people are affected—people like little JJ and his father, Marine Lt. Col. Joseph Fagan.  Three years ago, Joe and Lainie Fagan were excited about the arrival of their new baby.  At age 29, and 34 weeks pregnant, Lainie received horrible news—she had metastatic breast cancer.  JJ was delivered immediately but his mama died nine months later.  “Joe Fagan and his wife Lainie were members of our local METAvivor group in Annapolis,” Dian CorneliussenJames (CJ) , founder of METAvivor explains.

“Joe approached me in February … said he wanted to tell people about METAvivor and raise awareness for MBC.  He wanted to do this by running across the USA … what did I think?” CJ says.  Needless to say, CJ was elated.

So February 1, 2014, Joe will start running.  The event is called Sea-to-Sea for MBC.  Joe will run from San Diego to New York City  3,845 miles, arriving in the Big Apple on Father’s Day.  He will be running through Arizona, Colorado, Kansas, Missouri, Illinois, Indiana, Ohio, Pennsylvania, New Jersey.  On the way he will meet with people who have metastatic breast cancer and recipients of METAvivor grants. “We plan for sponsorships and donations in kind to cover expenses. One hundred percent of funds raised through this fundraiser go to MBC research,” CJ states.

What is METAvivor?

METAvivor is an all volunteer organization founded 2009 to raise awareness of metastatic breast cancer and to fund research. Almost everyone working for METAvivor is a patient with metastatic breast cancer.

It’s hard to compete for media attention: the world of funding for breast cancer is primarily focused on prevention and awareness of breast cancer.  Pink, the color of breast cancer awareness, is everpresent, especially in Breast Cancer Awareness Month, October—what advocates for change call ‘Pinktober.’  “The pink community is enormous and has a huge amount of funding. They do everything with big splash … paid experts … “ CJ says.   METAvivor puts 100% of donations and fundraiser proceeds into its [research] grants. Others must raise millions to do what we can do with $250,000.  We want you to know that this week we chose 4 new grant recipients … Packages total $320,000!”

Metastatic Cancer

CJMany believe that the money that is donated to large philanthropic organizations is for research for a cure to breast cancer.  This is, unfortunately, not the case.  “We need to force a change in the conversation. Breast cancer doesn’t kill people. METASTATIC disease does. Their needs are URGENT,” AnneMarie Cicarrella,  Sea-to-Sea Run Volunteer, states.  “Prevention and early detection were noble goals but they have not worked.   How long will we practice triage in reverse?” CJ asks.

The primary goal of Joe’s run and for METAvivor is to bring *significant* attention to the metastatic breast cancer community. “  Their voices are lost in the pink hype,” AnneMarie says.

“This event is happening because the majority of public doesn’t even know what metastasis is.  We want to educate the public, raise awareness that 90% of all cancer deaths are from stage IV cancer,” says CJ.   Stage 4 is the medical terminology for cancer that has spread from the original site, like the breast, to other organs of the body.  It is fatal.  “We want to raise awareness that 100% of all “Breast Cancer” deaths are from MBC. …we want to raise awareness that only 2-5% of research funds go to stage IV cancer collectively,” says CJ.

The statistics–that 90% of all cancer deaths come from metastases, that 100% of all breast cancer deaths come from metastatic breast cancer, and that only two-to-five percent of research dollars go to studying stage IV cancer—are chilling.  But that is not the only problem with the numbers.   “Actually, the numbers of those with MBC are greatly distorted. WE ARE NOT COUNTED. We are counted only at initial diagnosis,” CJ relates.

What’s Not Happening in Research

METAvivor’s goal is to get commensurate funding, that is, funding for metastatic cancer that is equal to funding for awareness and prevention.  “Commensurate funding is the only way to stop the deaths of roughly 600,000 cancer patients every year in the US,” says CJ.  “Metastasis researchers are trying hard to find solutions, but at only 2–5% research funding … progress is snail pace.”

“We need these researchers to be funded. METAvivor is the only organization w peer-reviewed research grants solely for MBC. This is what Sea-to-Sea For MBC is trying to do.   Spread awareness.   Hear the patients.   Hear the researchers along the route.   Spread the word,” says CJ.

aacr

AnneMarie explains her interest in metastatic research with  her mother’s story,  “Early detection doesn’t guarantee anything. My mom’s mets came after a 25 year dormancy.  My mom is a 2-time survivor.   She surpassed five years on both breast cancers.   She’s in the ‘good stats’, but she’s metastatic. ”  CJ also shared her experience.  “Only about 6% of BC is known to be genetic. I was told I was low risk .. .but am metastatic.   You never know,” she says.

“Metastatic cells can exist prior to one having a detectable tumor.   These cells do not respond to primary BC treatment.   Hence MBC,”  CJ highlights. “People can metastasize any time. Mets cells can lie dormant over 20 years.  Everyone is at risk.   Not to scare.   Just being realistic.”   Anne Marie points out, “All of the questions posed… why cells leave, what causes them to wake up from dormancy…this is WHY work of METAvivor is so important.”

At this point, when the cancer spreads to other places in the body, medicine can only offer treatments to stave off the spread.  One type of chemotherapy and/or radiation therapy is used, when it fails, another is used.  With metastatic disease, there is a cycle of one difficult treatment with side effects after another until there is no treatment left.  The patient dies.  “With metastatic friends, my hope is that they never run out of treatment options. Theirs are very limited,” AnneMarie states.

loriLori Marx-Rubiner, METAvivor Board member and Director of Nationwide Ambassador Program agrees, “We don’t know WHAT causes cells to leave the breast, we can’t distinguish those which will from those which won’t.   Studies are in their infancy…”  The fact that so little funding is applied to metastatic breast cancer is extremely frustrating for those whose breast cancer has metastasized.  “It’s good to try to prevent MBC.   BUT this does NOT help those who have already metastasized.   We want research to extend our lives with quality and ultimately to save lives.   This is not helped by prevention of mets research.  I’d like ALL chronic disease curable, I’ll settle for chronic.   I’d like to see my son marry, grandkids.  Many live years with MBC but life expectancy is still about two years. Quality and quantity…we need both!”

Volunteers NEEDED

If you want to make a difference and fund research to extend lives with quality and quantity, then be a part of Sea-to-Sea for MBC. There is a need for volunteers for the Sea-to-Sea for MBC event.  Take a look at the <a href=” https://t.co/VC2weNLrnC”>Facebook Page</a> and sign up!

“As metastatic cancer patient, more than anything we need the truth spoken, we need to be seen and heard,” says Beck Bills, breast cancer activist.

 

The Frog List

image“I can use all the prayers I can get!”

In August 2011, Jessica Rice had a little cough—‘nothing to worry about’–and a low grade fever that kept her out of work a couple of days. By early October the cough became “productive.”  She did what any healthy, 30 year old Vice President of Global Projects at Citi Corporation would do–she went to the CVS Minute Clinic for some antibiotics.  Since the cough had been around for a bit, they sent her to her primary care physician.  Convenience always paramount, she found a physician who practiced in the building where she worked.  He said she had allergies.

By the end of October, she’d been sent to a rheumatologist and was coughing up blood.  Finally admitted to the hospital November 8th, she relates,  “I left work Friday as someone who just seemed really sick, and by Monday, I was stuck in the hospital .. .with a mystery illness that wouldn’t get better.  Didn’t know if I would ever get to even go home at that point. ”  It took six days of testing to find out she had lung cancer.

Not a smoker, with no family history of lung cancer, Jessica’s diagnosis is an extremely rare cancer called bronchioloalveolar cell carcinoma in the diffuse form. With this form, surgery is not an option.  Her cancer is stage 4—there is no stage 5.

When she learned her diagnosis, she wasn’t told a prognosis, “I believe…there are far too many variables to give an accurate prognosis,” she says.  “I do ask my specific questions regarding timelines. For example: If I have zero response to this treatment and my tumors continue to grow at the same rate, how long until I succumb to them?”

Until she lost her hair, in August 2013, she didn’t even look sick.  “People didn’t understand why a normal, younger adult was being pushed around the mall in a wheelchair.  Or why I parked in handicapped spaces.  It was a bit annoying, watching people scan me up and down, trying to figure out my defect…” Jessica states.  “Seth (my fiancé) and I have coined it “the jaw drop” when people find out.”

Lung Cancer: The Facts

Currently, most people are diagnosed with lung cancer at stage 3 or stage 4.   According to radiation oncologist Dr. Matthew Katz, “Our ability for early detection is poor and earliest symptoms are pretty silent or nonspecific.”   As Jessica writes in her blog, “Lung cancer tops the list with the highest number of deaths for both men and women.  In fact, it kills nearly the same amount of people as colon, breast, pancreatic, and prostate cancers combined.”  Though her former life didn’t include this type of advocacy, Jessica is now using her writing and social media skills to share her story and bring the lung cancer experience to light.  In her blog post ‘Lung Lost Love,’ she continues to describe  the terrifying statistics around this disease “The 5-year survival rates for stages IIIa, IIIb, and IV are 14%, 5%, and 1%, respectively.” And she notes that, even if it is caught early, treatment doesn’t result in much improvement—5 year survival rate for stage IIa non-small cell lung cancer is 30%.

Jessica has been fortunate to have oncologists  that she can trust.  “My oncologist is up-to-date on the latest treatments.  And when I would ask about consulting with another doctor, he would encourage me, reach out to that doctor himself to discuss my case both before and after I met with them.”

One positive outcome is the proactive work these physicians have done on her behalf.  “The hospital pulmonologist and my oncologist (before I ever met him) sent my biopsies for EGFR and ALK testing automatically. It seems that some people have to request this from their doctors, so I feel fortunate that mine were up-to-date on the latest treatments and didn’t hesitate to take action. (I did test ALK+, and the targeted therapy crizotinib was my first line of treatment.)”  Since her diagnosis, she has had 6 different treatments including a clinical trial and radiation.

This past June, Jessica had a gran mal seizure.  Fortunately, she received emergency care and survived without severe disability.  Unfortunately, the seizure signaled that something had changed.   This brilliant woman–a Wharton business school graduate – (now age 32) has brain metastases.  In her blog she writes, “If abnormal organs are prone to defects then my brain would be the lightning rod of my body. My entire life it has been my blessing and my curse. It’s riddled with more IQ points than even I believe and an intuition that can border on creepy.”   She’s coined a phrase for the tiny metastases that can be seen on MRI scans as “brain lint.”

“My Frog List”

Awareness of her mortality ever present, Jessica wishes “someone on my medical team would talk to me about what I want towards the end. After my seizure, I know it could come anytime.”  Some of the things she wants are found on her blog. “The term bucket list was made most popular by a movie in 2007.  Everyone knows it means that these are the things you want to do “before you kick the bucket.”  Honestly, it seems a little cold and crude to me.  And, never one to blend in to the crowd, I decided to think of something a little more creative, a little more me.”  That’s why she calls hers My Frog List .  “My Frog List is what I want to do before I croak!”

Jessica grew up on a hobby farm.  She and her mother (her “best friend”) now own a small hobby farm in West Virginia.  “Our animals are our family,” she says.  Part of her frog list is about bringing home and family closer. “Sometimes I look for normalcy more than anything else,” she relates.  Her frog list would bring normalcy to her life. “My Frog List is relatively short. Top priority is to get my mom (and our animals) closer to me. Need to do this ASAP.  After mom is close, a Wedding and Honeymoon,” she says.

Making these dreams a reality is possible but only with the help of others.   Friends have set up a website to make the move, her wedding and her honeymoon a reality. “It’s comforting to know that I’m not alone – WE (Seth and I) aren’t alone – as we go through this.”

You can find out how to help by visiting Stage IV Blog and YouCaring.com.

“I really want to thank you all for … listening to my rambling, reading my blog, and sharing my story,”

Based on #HCHLITSS transcript September 12, 2013  #LCSM transcript September 5, 2013.  Thanks to the Healthcare Hashtags Project