Blog Archives

In loving memory of Lori Buckfire

Dear Lori,

You came into my life two short years ago and you touched me in a way so few people have.  We were instantly connected by our genetic mutation and our unending desire to see a world without cancer. 

With Lori at Relay for Life in 2008.

You introduced me at Relay for Life as a cancer warrior but you were the cancer warrior.  You fought Ovarian Cancer like a champion for so many years.  I admired your strength and your ability to find the humor in nearly every situation.  I looked forward to reading your blog posts and laughed out loud at your frank and hilarious stories.  Tomorrow will be a sad day for the thousands of people who were lucky to know you.  You were loved and admired by so many.   And we will all continue to fight this dreaded disease in your memory and in your honor.  

With love always and forever,

Ellyn

Advertisements

Not digging the newest breast cancer screening advice

I just sat down to do some work tonight and was distracted by the federal government’s latest announcement.  It seems that a task force has decided that women should wait until age 50 to get mammograms and it’s only necessary to get them every 2 years.  They go on to say that breast self-exams do no good and women should not be taught to do them.  I am outraged and furious at this latest advice. Earlier this month, I spoke to 3 women over the course of 3 days all in their thirties with a recent breast cancer diagnosis.  And nearly every day, I hear of another young woman beginning a breast cancer fight. 

Sure the guidelines are different for women with a family history or a genetic mutation but what about those of us that discovered a mutation only after we were diagnosed?  I think everyone can agree that mammograms are not perfect but we need to find a better tool for screening younger women before we take away the one tool that actually works.  And why debate breast self-exams and breast exams performed by doctors.  A breast self-exam ultimately led to my diagnosis.  Where would I be two and a half years later if I hadn’t discovered the tiny lump in my breast?  Does the federal government care or are they just worried about increased costs of biopsies?  Share your thoughts?  We need to be advocates for our own health and make sure we are not negatively impacted by this latest advice.

Raising Awareness of Hereditary Cancer

 I’ve spent a lot of time in the past month thinking about hereditary cancer issues.  Last Friday, I spoke to the Michigan Cancer Genetics Alliance about FORCE.  And in between, I’ve had two FORCE outreach meetings. In speaking to the MCGA, I communicated my concern with the lack of awareness of both hereditary cancer and the importance of Genetics Counselors in the process.  Through my interactions with many of them, I know that they have similar concerns.  They had some nice suggestions of various groups within Michigan that may help me take on this issue.  I talk to women everyday who don’t know they are at risk and don’t know what to do if they are at risk.  Clearly I fit in the “didn’t know I was at risk” category. We’ve come along way through organizations like FORCE and Be Bright Pink but we still have a long way to go. 

FORCE coined a term to give people with a hereditary cancer genetic mutation a name.

FORCE coined a term to give people with a hereditary cancer genetic mutation a name.

At my most recent FORCE meeting, I met a woman who’s sister was diagnosed with DCIS (stage 0 breast cancer).  Prior to this diagnosis, she had no idea that she was a risk for a BRCA mutation.  She tried to get genetic testing but her insurance company turned her down.  6 months later her sister was diagnosed with stage 3 breast cancer and 1 year later is back with more cancer.  Could this be avoided?  This is just one of many stories I hear.  How can we make sure that more women have the knowledge they need to ultimately avoid a cancer diagnosis?  Do we need a specific week devoted to hereditary cancer awareness?  I need your help, my readers, to make sure that we are able to inform, educate and spread the word.  We are a small but mighty group and we can do this together.  Post some comments and let me know how you think we can make an impact.

The Breast Cancer fight continues

It’s been a long interesting week, and I finally have a moment to share.  After my diagnosis, I was connected to an acquaintance that had just finished her journey.  She became a mentor of sorts—supplying me with cute hats, sending thoughtful cards and calling or emailing to check in on me.  She was honest and inspirational all at the same time.  We’ve kept in touch over the past two years—because breast cancer and the BRCA gene that we both share create somewhat of an unbreakable bond. 

Just days before the Breast Cancer 3-Day, I learned her cancer had spread.   The words our mutual friend shared withry=400 me twisted my heart, took my breath away and made me feel like I had the biggest kick in the stomach.  Two days later, I walked and prayed and kept her in my continuous thoughts.  The walk this year had a whole new meaning for me personally.  I guess before this news, I lived in my blissful and optimistic world of thinking that those of us diagnosed with early stage breast cancer these days simply needed to do our time, have our surgeries, chemo, etc. and go on to live long healthy lives.  While this news shattered that for me, I also felt incredible sadness for her and her family.  I know her journey will be a tough one—I also know her incredible strength.  On Monday Night, I got an email from her.  She was back in the chemo chair as part of a PARP Inhibitor clinical trial.  More hopefulness as these are the drugs that are showing the most promising results.  She remains part of my daily thoughts and prayers.

About a year ago, I found a blog through my friend Pam.  The blog was written by a young woman in Minneapolis raising three young children and battling late stage breast cancer 1 year after her early stage breast cancer diagnosis.  I read her blog for several months following her journey.  Just minutes after I read my friend’s email on Monday Night, I ventured over to Pam’s blog to learn that Cari had lost her fight.  More heartache, sadness and the reality of this dreadful disease came crashing through me. 

At the same time, breast cancer awareness month is kicking into high gear.  I know there are many questions and potentially even criticisms about the amount of effort and money put into this disease.  But we can’t stop.  Not even for a minute.  Not when stories like this continue every day.  Breast Cancer is real and it’s cruel and we have to find a way to stop it in its tracks.  It can’t continue to rob children of their mothers, to steal wives from their husbands, to make parents feel the pain from the loss of a far too young daughter.  It must go away and until it does, I’ll keep fighting and I hope you’ll keep joining me.

BRCA awareness saves lives

I was so excited to get my mail yesterday and see the great cover story on the Detroit Jewish News on the breast cancer gene (BRCA).  I am so happy that Lisa Siegmann was willing to share her story to help so many women.  And I’m so grateful that the Jewish News recognized the importance of this message.  Social marketing can save lives–especially when it involves building awareness of an unknown risk factor.  Research into finding new diagnostics, treatments and a cure is essential.  However, we must make sure that a portion of our efforts are directed to raising awareness.  Until there is a cure, early detection and prevention for those at high risk is our life-saving hope.

Let’s continue to find ways to educate women and the community on BRCA and the risk factors associated with this genetic mutation.  I know there are many women, like Lisa, who chose prophylactic surgery only to find out  that it was only a matter of time until a diagnosis.  In this case, knowledge really is power.

So many breast reconstruction options!

Immediately after my doctor told me I had breast cancer, I told him I was having a bilateral mastectomy.  There was no doubt in my mind that on drop of cancer meant that both my breasts were going.  This was before I even knew about my genetic mutation.  As soon as I got through all the scary screening (bone scan, chest x-ray, blood work), I started focusing on breast doctors and plastic surgeons.  I made my decision pretty quickly and was ready to go.  My path was clearly defined.  I would have the mastectomy, have expanders put in place, go through several months of expanding and ultimately exchange the expanders for my implants.

While I knew there were several other breast reconstruction options, none of these were an option for me and I didn’t even bother reading or discussing any of them.  I made up my mind and had the surgery.  So this weekend was a completely eye-opening experience as I talked to women about their DIEPS, GAPS, one-step with Alloderm and their nipple sparing mastectomies.  I’m sure there’s others that I’ve missed so feel free to chime in if I’m missing something.  Not only did I hear about them, I got to see them and even touch them.  From 8p-11p each night in the show and tell suite reserved for women only, women lifted their shirts and discussed their experiences.  Choosing a mastectomy is a tough and emotional journey—especially for previvors—who haven’t had cancer and it’s so wonderful that FORCE provides this avenue for women to share their experiences, see the results and get answers to their questions first-hand.

New friends

I’m heading back from Orlando now with lots of new friends.  Day two of the FORCE conference was great.  We started the day with a panel of researchers telling us about lots of studies going on in the area of hereditary breast and ovarian cancer and BRCA specific research.  It was so promising to see all of these brilliant people sitting in front of me telling me about research they are doing to benefit me and the entire hereditary cancer community.  And I know that the studies I learned about were only a fraction of the research going on in this area.

After this panel, I was completely energized and I had the opportunity to sit with a woman from Susan G. Komen and share my thoughts and hopes.  I can’t wait to continue my conversation with her and others from Susan G. Komen.  I was particularly happy to hear about the level of grants they are providing in the area of hereditary breast cancer—knowing that the $87,000 Ta Ta Breast Cancer raised in 08 is contributing to the tremendous research they are funding in the hereditary breast cancer—6.1 million dollars in 2008 alone.

I spent more time in the exhibit hall—bought a fair share of pink from my new friend Courtney from Pink Wings.  And got to meet Lindsay Avner—the founder of Bright Pink—an organization I’ve admired for awhile.

A group of 8 of us had dinner in Downtown Disney.  IMG_1318The number of fingers we’re holding up show whether we are BRCA 1 or 2.  In the group, we had 3 survivors and 5 previvors (women that carry the gene but have never had cancer).  We shared our stories over a fun Cuban dinner with a pitcher of Sangria and some Mojitos  added to the mix.  And most importantly we laughed a lot.

The day was packed with information, networking, meeting and connecting with new people.  I even squeezed in a long walk around Orlando and Disney with my new friend Debbie and ended the evening with a “Pure Romance” girls night in.  What a great day!

Disney magic and the magic of FORCE all in one day

Taking a break in between activities at the FORCE conference. Time to put some thoughts down on paper. logo_forceIt’s been an inspiring experience with a bit of sadness too. There are 500 people here—some are healthcare providers but most of the 500 are women with a BRCA mutation or women who are at risk for hereditary breast and ovarian cancer. It’s unbelievable to hear everyone’s stories, their lives and their histories.

Last night, I met two women in their 20s here with their mother. Both women found out this past January that they carry the BRCA mutation. Now they are exploring surgery options. I can’t help but think of my own daughter when I look at these two young women and wonder where we’ll be in 15 years. I admire these women for their energy, spirit and acceptance of the genetic mutation. And I’m guessing that FORCE is helping them realize they are not alone and they do have options. That is the truly magical part of FORCE. There are so many women who’ve walked incredibly journeys— losing parents, grandmothers and siblings to cancer. And taking preventative measures like prophylactic surgeries so that they will be able to see their own children grow up.

I spent a little time walking around downtown Disney, humming to the tunes and watching families enjoy Disney.  It Mickey_Mouse_jpgwas nice to leave the hotel for a bit to have some time to think and regroup.  There’s no place like Disney to help you clear your head. 

After my walk, I checked out the exhibit hall.  There are wonderful speakers and exhibitors here sharing their knowledge and advice to show women they have options. Yesterday I had lunch with Informed Medical decisions, a company that provides genetic counseling over the phone. What a great resource if you live in a area that doesn’t have a genetics counselor or if your genetics counselor is booked for several months.

I also had the opportunity to meet a really energetic woman with da Vinci Surgery. That’s the name of the robot they used for my hysterectomy and oophrectomy.  Quite honestly, I didn’t know much about how the machine worked.

And how about this research study on whether or not exercise can reduce your breast cancer risk. If you’re high risk and under 40, you can qualify. And you get a free treadmill out of the deal. The study is coming out of the University of Pennsylvania and I met the researcher behind it who inspired me to go hop on the treadmill for a little afternoon exercise. So now I’m off to find some dinner. And later to the show and tell room where I get to share my breasts with lots of other women. More tomorrow!

So much to share!

Oops.  I’ve been neglecting my blog again.  There’s always so much to share but so little time.  I’ve started training again—pretty short distances at this point but still takes a chunk of time.  It feels good to get back in walking mode and now that the sun is finally shining, I can’t wait to get outside.  Work is keeping me busy too—writing proposals, proposals and more proposals and working on our Brogan & Partner’s blog.  I was extremely flattered to recently be named Breast Cancer Survivor of the Month on the breastcaresite.com.  And I still have my moments when I lose myself in Twitter and can’t find my way out.  If my tweet deck is up, breast cancer tweets pop up every other second and if they include links to articles or videos, I’m in big trouble.

This Saturday, I’m speaking at the St. John Health Breast Cancer Symposium.  Next week, I’ll be talking about Social Media to the Michigan Association of Realtors.  I’m looking forward to sharing my knowledge in both areas through other speaking engagements.  I’m also very busy ramping up fundraising efforts for the 3-Day.  While the economy is tough right now, it’s nowhere near as tough as cancer.  If you’ve got a spare $5, please donate. 

I found a site last night that I thought might be helpful to some of my readers.  It’s from a fellow FORCE member.  She chose to have a prophylactic mastectomy and does a wonderful job sharing details of her decision-making process, the surgery and post surgery.  I was too busy going through chemo and didn’t really pay much attention to the surgery and expansion process but I think this would so helpful to people who do have the BRCA mutation and may be considering surgery.  The unknown is always far scarier.  She does include pictures throughout the process and has yet to have her final reconstruction.  Thank you to Lianne for sharing your journey. 

Happy sunshine and spring to those of you living in the State of Michigan.  Hope the rest of the country is sunny today!

HoneyBaked to our rescue!

Last Night, we had another great FORCE meeting and HoneyBaked provided food for us.  After the meeting, I sent a thank you to our HoneyBaked contacts and realized that the letter was worth sharing on a broader scale. 

Dear Wendy and Geoff,

Thank you so much for providing the delicious HoneyBaked food last night.  The meeting was fantastic and each time I have one of these meetings, I realize the true power of FORCE and the importance of the ongoing success of this organization.  Here’s a few highlights. 

One woman attended the meeting with tears in her eyes.  As a young child, she watched her mother die of breast cancer.  She lost her father to Crones Disease and a brother to a heart attack.  She is 33 years old, unmarried with not one single family member.  Completely alone in this world except for some friends.  A week ago, she found out she has the BRCA mutation giving her an up to 85% lifetime risk of breast cancer.  She is prepared to have a bilateral mastectomy but her friends think she is absolutely crazy.  The first place she found was the FORCE message board and after posting her story, she got returned messages from perfect strangers who told her they were there for her and completely supported her.  The same thing happened in the meeting last night and she walked out feeling stronger, happier and more positive about her decision.

There was another young woman there with her sister, mother and father.  She started her battle with cancer in July and is in the reconstruction phase of her breasts.  She is very uncomfortable right now and worried about the final result.  After the meeting, we went in the bathroom and I was able to show her what her breasts will look like when she is done.  She gave me a huge hug, thanked me, and walked away so much happier.  Her sister (BRCA also) has not had cancer but spent the entire meeting with tears in her eyes.

A third woman also lost her mother and most of her family members to breast and ovarian cancer.  She has two young children and intends to see them grow up.  She is currently battling with her insurance company to cover preventative screenings.  The genetics counselors in the room stepped up to tell her that they will write letters of medical necessity to get her screenings covered.  She had no idea that they would take care of this for her.  We also were able to share that prophylactic surgeries are covered by insurance–most people had no idea. 

 These are just three of the stories.  There were more and this is just one meeting in one area.  I read the message boards and know the stories go on and on.  Without funding, FORCE cannot continue. 

 In addition, I know that FORCE is 100% looking out for me and my risk factors.  They are the ones making sure that research continues in the hereditary cancer and this is so incredibly important to people like me with the BRCA gene.  I intend to live the rest of my life free of all cancers.  And I credit FORCE for making my life better in this way.

I thank you from the very bottom of my heart for what you are doing for my organization!  I am telling the world about HoneyBaked!!!  I am sending my friends and family your way, blogging about you and announcing you to my Facebook friends.  I’m asking them to do the same. 

I wish you much success always and hope this campaign is tremendously successful for all of us!

 

Sincerely,

  

Ellyn

%d bloggers like this: