Back in the dark ages some fourteen years ago when I was diagnosed with breast cancer, the oncologist had to rattle the cage of the pathologist to get the results of a test that is now considered routine. The test was for a proto-oncogene called Her2-neu. My tumor was positive for over-expressing this protein.
This was not good news. It meant my cancer was even more dangerous.
In 1998 a drug called Herceptin was in clinical trials to determine if the drug could improve outcomes in people that had this tumor type. Researchers also knew that positive Her2-neu status was another one of those pieces of the puzzle that often seemed to be present in women like me who developed breast cancer at a young age. At the time I received chemo, Herceptin was only available to those with metastatic disease. I had Stage IIB breast cancer and did not meet the criteria.
Not long after I finished chemo, Herceptin proved to be highly effective against Her2-neu positive tumors and became more widely available. This is the way drug research works. It is a long, expensive difficult road that is littered with failure.
Of couse 1998 was not really the dark ages. The point is, things change fast in cancer research and treatment. The two are inseparably linked. Back in 1998 I also did not know I carried a defective BRCA1 gene. Insurance considered the genetic testing “experimental” and would not pay the $3500 tab.
Herceptin and many drugs like it come to market only with the combined efforts of many groups, including patients. For BRCA-positive people, the PARP inhibitors show promise, but may never reach the finish line. Why? There are not enough women who qualify enrolled in clinical trials.
Do you know anyone with advanced breast cancer who is BRCA positive? There is a large Phase II clinical trial for PARP inhibitors going on. Participating could mean a breakthrough for those with hereditary BRCA cancers, as well as the wider cancer community. Of course there are no guarantees. This is how science works.
For more information please read this important blog post from Sue Friedman, the founder of FORCE.
At the ripe old age of 8, pennies saved, I bought a special treat at summer camp. A charm bracelet. More than 40 years later I still have it despite numerous cross-country moves and a tendency toward getting rid of stuff. Packrat is not a word anyone would use to describe me. I do not know why I have held on to this fragment of childhood.
1970 Camp Wynakee charm bracelet
A couple of days ago I bought a charm for the first time since 1970. It cost quite a bit more than the last time I made such a purchase. Part of the proceeds from the sale of this charm went to support the only national non-profit organization dedicated to helping people who face hereditary breast and ovarian cancer. FORCE and its resources on both the local and national level have been indispensable for me and my BRCA1-positive family.
Silpada charm “Red Hot Love”
I don’t even own a charm bracelet, besides my tarnished vintage summer camp beauty. What possessed me to buy this pretty bauble? It seemed appropriate. Not only because it helps support a fine organization, but it is a reminder of one of the unexpected rewards that have been part of my personal journey this year as I’ve had one surgery after another to keep cancer from returning. Love, in so many forms has come my way from family, friends and perfect strangers. It’s been wonderful and humbling.
During the midst of a long and difficult hospital stay I learned my sister Anne had tested positive for the family mutation. Among the three girls in my immediate family, she is the only previvor. Wednesday is National Previvor Day. Yesterday, I sent my sister a care package filled with things she will find helpful during her own upcoming surgeries. Some love went in that package too.
Photo Credit: Foter.com kalexanderson
“May the force be with you.” A famous movie quote, morphed into the bad pun “May the 4th be with you” and a day to celebrate the iconic “Star Wars” saga was born. If the BRCA genes are part of your world, the word force has another meaning. It is the acronym for the organization Facing Our Risk of Cancer Empowered. FORCE is the only national non-profit organization whose mission is to improve the lives of those affected by hereditary breast and ovarian cancer.
In a crowded room filled with folding chairs were sixteen women who had little in common with one another except for a single issue: genetically inherited cancer. Among them were two sets of mothers and daughters, lesbians and straights, housewives and professionals, survivors and previvors, young and old, white and black. It was as if a movie director had called central casting and requested a perfect cross-section of American women. This gathering was no movie shoot. It was a local FORCE chapter meeting. I know because I was there.
The stories were powerful and as unique as each woman. There was an open exchange of ideas and information. Want to know what it is like to participate in Phase II PARP inhibitor trials? Have post-mastectomy pain syndrome? Battle metastatic ovarian cancer? Maintain privacy in the workplace? Wrangle with insurance companies? These were just a few of the many topics covered in this two-hour meeting.
I came away from the meeting with a few scraps of paper. E-mail addresses of people to follow up with later. I also got a better sense of how FORCE operates on a local level and what resources are available. Perhaps of even greater value was the emotional connection I felt with these strangers. The raw power of their stories, the tangible reminder that I am not alone in navigating these difficult waters. Not to mention the free chocolate. Dark Chocolate with raspberry. Mmmm.
If you are in the BRCA community let the FORCE be with you in more ways than just hunched over a computer screen in the middle of the night, as I often did, seeking information from the FORCE web site. While the value of the FORCE message boards, web site, chat rooms, phone lines and conferences should not be overlooked, they can never replace face-to-face conversations.
Happy Star Wars Day. May the force be with us all.