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Comments

Bob LeDrew

Wow. What a story you tell. As someone who had a brush with cancer himself, I empathize with the difficult choices you found yourself having to make, and with the difficult experiences you've had with medicine.

I didn't have to deal with anything close to what you did physically.

Anyone who criticizes your choices oughta have their head examined. They're not walkin' in your shoes.

Mathew Ingram

Eden, as I said on Twitter just now, that must have been very difficult to write (not to mention having to live through it), but I'm glad you did. I'm sure your story will help to inspire others -- or at least I hope it will. And congratulations to your son on his Bar Mitzvah :-)

Eden Spodek

Bob, Wow! I'm so sorry you had a brush with cancer. You are the braver one here - part of my decision-making was out of fear- I was a vain wimp who didn't want to lose my hair or fight the fight.

As time goes on, I think preventative surgery is becoming more of an accepted practice. At the time, it was still relatively new. When I had genetic testing, it was done so that oncologists could provide me with more options. Today high-risk women I meet often have testing done to determine whether or not to have preventative surgery. Things are changing rapidly and there are always new and contradictory research findings to wade through.

I don't have any regrets and made the decision I felt was best for me and my family.

Eden Spodek

Mathew, Thanks for your feedback and support. It was difficult at the time but I've come a long way in the 2.5 years since my last surgery. I've already heard from one person who has a friend my story may help. Thanks for all your encouragement and congratulating me on my son's big day - he did great - we're very proud.

David Jones

Eden...that is quite the compelling tale. Clearly, you have tremendous bravery in the living of it and in the telling of it.

A relative of mine went through a double-mastectomy a few years ago after being diagnosed and she's doing fine today. Your story reminds me of how tough these decisions must be for a woman and how many suffer in silence. Thanks for telling it.

Eden Spodek

David, thanks. Guess I'm not such of an enigma to you anymore. ;) I've had to make some pretty grown-up decisions in my life despite my goofiness sometimes.

Glad to hear your relative is doing well. I have a friend with a family history who ignored screening and the warning signs. Fortunately, she finished her treatment a year ago and is doing great. One morning after dropping our kids off at school she looked at me and told me I did the right thing. We looked at each other and cried. We both think each other is the braver one.

I'm just happy I'm here, I'm healthy and I plan to be around for a long time.

Mark

Congratulations are in order, Eden, for being open about this story. While the struggles account for a large portion of what you shared, here, it's important to not lose site of the incredible victory and the positive message you are sending to women on their own screening.

Lisa Walker

Eden - I think you're right in that sharing your experience will be helpful to other women in what must be a very confusing time. I cannot imagine having to make those decisions myself and weighing all the factors that went into it. Thanks for sharing and you've certainly opened my eyes.

Kyra

Your story took my breath away, Eden. You are an incredibly brave woman and I have no idea what I would have done in your situation. A close friend has recently gone through chemo and radiation therapy and your story really hits close to home.

Thank you for sharing.

Susan Reynolds

I don't think for even a moment that what Eden says to discount her story is accurate.

Certainly some decision-making grows out of fear but "a vain wimp who didn't want to lose my hair or fight the fight" does not accurately portray the struggle any of us go through. How about thinking instead that Eden was a woman who didn't want to lose her life, or risk losing her life.

Why wait to let something develop if there's a way to prevent it?

If we thought of screening and prophylactic treatment for women with the BRCA gene like we think of screening and removal of precancerous skin lesions how much better off would be be? And if treatment was as advanced as it should be and communication was as open as it could be might that not be the case?

It's far far past time to put an end to any of us having to make heart wrenching decisions about whether to have a body part removed so we might live while meanwhile each year we spend millions of dollars on pretty pink ribbon items sponsored by groups from sea to shining sea, in many cases with only a fraction of that going to help people who actually need help, and educate the rest of us.

I don't see Eden as a wimp. I see her as having more courage than I can even imagine and applaud her willingness to speak out to help us understand at least one small piece of a vicious killer that lives among us.

Francine hardaway

Stigma? You have got to be kidding -- or rather the people who stigmatize women who opt for surgical prevention have to be kidding. We have an epidemic of breast cancer, and we have to be as open about it as we can. I work with a site called Empowher.com, which urges women to share their stories about health issue. It is owned by a dear friend of mine who has become a patient advocate. As long as you have gone public, would you mind cross-posting there?

Charlotte

Eden, what an inspiration you are. I'm so in awe of your unflinching courage, intelligence and quiet determination.

Coming from a family that has had more than its fair share of brushes with cancer, I understand the need to be a patient advocate, and take control of your options. Kudos to you for your thorough examination of all the various factors that influenced your situation.

What a beautiful way to help others, through the power of your story.

Bravo, Eden, bravo!

Donna Papacosta

Eden, when I read the story in the Globe and Mail today about the funding for the testing of Jewish women, I wondered about those who would be now faced with these kinds of decisions. And then I saw your story. An amazing story from an amazing woman. Eden, I admire you for your decisiveness in facing this challenge head on.

And mazel tov on the Bar Mitvah. You and your family are blessed.

Eden Spodek

Thanks everyone. I’m totally overwhelmed by all your support and comments. This issue is so important to me I want to respond to each one of you personally.

Mark and Lisa, If I can help one person with my story, it will make opening up all worthwhile. I hope no one you know will ever be in the same situation. It was agonizing for several years. I often worried if I waited too long to act.

Kyra, You’re welcome. Please send positive thoughts to your friend from me. She’s an incredibly brave woman.

Susan, you’re right about the other considerations weighing heavily on my decision-making but I’d be lying if I didn’t admit the thought of losing my hair was an issue for me. I feared chemo and radiation after watching my mother and grandfather go through it at the same time.

I never thought of my decisions in the same way as removing a pre-cancerous skin lesion and your point is well taken. However, I think it’s also important to remember I made the right decisions for me. Everyone’s situation is different and I hope that if and when faced with other tough choices, people do what is best for them.

Waking up every morning and fighting the cancer beast takes a lot more courage than being able to take control of a situation like I did. It also took me years to speak out about my experience. I think it took you something like 5 minutes. Don’t discount what you’re going through or the number of other women and family members you’ve been helping throughout your journey.

Francine, most people have been supportive but not all. I think things are even different today than they were a few years ago and I’m overwhelmed by the support I’ve received since I’ve posted this story. I will discuss cross-posting my story with Susan Reynolds since this is her blog.

Charlotte, you know me better than to think that I’m quiet. ;) Unfortunately we’ve discussed how both of our families have had more than their fair share of brushes with cancer. I hope one day in the near future though genetic research all this will be a blur and the medical community will have the knowledge to help patients prevent these and other types of cancers more proactively.

Donna, I’m not sure what I’ve done is so amazing. Unfortunately, I’ve met many other women faced with a similar fate and decisions. The only difference is I’ve become more vocal. It’s also easy for me to appear decisive after the decisions have been made. No decision was easy and I spent a lot longer than many trying to figure out what was right for me through a maze of ever-changing research. I also had to make decisions knowing new studies and treatments would become available after the fact and there was no going back.

Alicia C. Staley (@stales)

Thank you for sharing your story... It will make a difference for many women. As a breast cancer survivor myself, I can tell you that your story is invaluable to the "conversation". Take care.

Eden Spodek

STALES, thanks for your feedback. Glad my story resonates with you and hope I can be of help. I'm probably a bit out of touch with the latest research and treatment options but at least I'm getting the issue out of the closet.

As much as I dont want to believe it - I've found out the hard way that health issues have stigmas.

For example - there was a case of my services suddenly not being needed for a start-up the week after my mini-stroke last fall.

It was a visible online position and I had not only admitted what was happening I was naive enough to be tweeting through going to the hospital and getting diagnosed ( http://susanreynolds.blogs.com/artist/2007/09/but-it-was-just.html )

The company founder I was dealing with obviously didn't want the person writing his press releases and doing his facebook, tweeting, pounce etc to not live up to some ideal. One week MY address was used on a press release so that he'd have a "DC presence" and two weeks later I was disposable.

Being concerned about being public not just because of privacy of family but because medical issues can be perceived as stigma was a concern for me and for many others as we continue down treatment road and beyond.

I hope everyone can get past this kind of view but to be honest - that does not always happen.

lynette {radio}

Eden I'm sure that took more courage than we could ever know to hit that 'publish' button. Look, if there was a gun with 10 chambers and 7 bullets... why pull the trigger? **Your body, your choice.** No one knows what it's like to walk in your shoes, or Susan's, or anyone else's, cancer or not. BRCA or not.

In the last few years the Big-C has been showing up at a staggering rate in my family. Somewhere in the back of my head I know I'll have to personally deal with it myself. No matter what someone's view is, when you're in the thick of it, survival matters. Family matters. Friendship matters. Weed out anything or anyone that doesn't make a positive impact on your life. Seems you've figured that out already.

Saul Colt

Eden,

I am moved and inspired by your bravery to not only face this head on but to also share your experience with others so they too can build and learn from your experience and strength.

saul

Eden Spodek

Lynette, Fortunately, Susan pushed the publish button for me. ;) Sorry your family has been hit by the Big-C too. That really sucks! Let me know if you ever want to talk.

Saul, Thanks. It took a long time to decide to share my story with others. Susan told me she knew I was getting closer and she could see the signs. Must have been something in my subconscious. I thought about it months ago and then put the idea to rest. Even last week I told Katie Paine I wouldn't do it but by Saturday, all that had changed. No regrets either.

Susan Reynolds

What a wonderful bunch of comments, Eden, and also kudos to you for keeping up with a great conversation. You deserve all the credit for making this a story with authenticity that your family and friends much be very proud of.

To the readers - As this blog and my cancer story has developed, Eden has always been available to share with me what she knew and her experiences. That is something I'll always appreciate beyond words.

As time has gone on, it seemed important to focus in this blog on both the very personal "cancer experience" and the rest of the myriad of things I'm learning about all kinds of things connected with cancer that I would have never known if I hadn't gotten it - and people hadn't taked to me about THEIR experiences.

So the focus Eden and I have had throughout the process of sharing her story was that what we experience might make it easier for someone else.

Whether we make it easier for a reader to know that they are not alone or if we provide insights that the child never got from their mother who had cancer that was never talked about, or if we provide a link or a resource - or just an encouraging word - I thank Eden for helping me do it.

And thank her for helping me deal with my own far from ended cancer story too.

Dave Fleet

Eden: Wow. Inspirational. Thank you for documenting this for all the people out there who are going through what you went through.

So happy you're well now.

Eden Spodek

Susan, thanks again for all your kind words and support. I don't feel like I've done much for you at all. I think you've done more for me by graciously offering me the space to tell my story. I hope you know you can come to me anytime.

Dave, thanks for your comment. Now you probably have an even greater understanding of why I was so supportive of your fundraising efforts for the Boston Marathon and why I tried lobbying the PodCampToronto organizing committee for a donation to the Frozen Pea Fund from ooVoo. At that time, I wasn't ready to share my story. I also wanted the committee to make an objective decision.

Many people have commented about how my story has made them more aware of the importance of regular screening. Two of my friends are breast cancer survivors. Both of them are well-educated women who would do anything for their families. One is even a health care professional with a family history.

When it came to their own health, they ignored the warning signs. Both of them had symptoms and suspected they had breast cancer but ignored them until they were ready to deal with information they correctly assumed would change their lives forever. Unfortunately, by the time they were diagnosed, the cancer was somewhat advanced. Fortunately, not advanced enough to prevent successful treatment and hopefully a cure. Please don't underestimate the importance of regular screening.

michele

eden - your courage and strength throughout this battle, as well as your openness to share the story, are truly amazing. thank you so much for sharing your experiences and your humanity - to increase awareness and understanding.
wow.

Sameer Vasta

Thank you for sharing this Eden. As someone who has a long history of breast cancer in the family, it is always great to hear stories of people who have not only survived, but thrived and overcome despite the challenges.

Thank you again for your courage and openness.

rjleaman

I hardly know what to say: Eden, you are so remarkably strong! Your story (incredibly brave in both the living of it and the public sharing here) makes me think of all the people who must struggle along with health issues they feel thay cannot talk about -- the needless isolation as each must travel the same road of difficult investigation and painful decision as the others, but each one doing it alone. Brava, Eden! Closets are no place for important issues like this to be kept.

Peter O'Connell

Eden:

I'm very glad you're here.

Best always,
- Peter

Eden Spodek

Michele, Vasta, RJ and Peter, Thank you all for your comments and words of encouragement.

I spoke to my recently-diagnosed friend this afternoon. Good news - the cancer hasn't spread to her lymph nodes. If she has surgery, she won't need chemo or radiation. She told me her options and asked what I would do. I reiterated the decision is personal but if it were me, I'd do whatever surgery was needed to reduce the chances of a recurrence. Apparently, that was exactly what her oncologist advised. It wasn't really what she wanted to hear but what she knows she probably should do.

FYI, she is about to start taking Tamoxifen and was concerned after reading my post (I sent the link to the 5 women I mentioned above). I reminded her there was a big difference between my situation and hers. She needs to do whatever she can to get better. I wasn't sick and had other options.

She also told me she was training for the Boston Marathon when she learned she had cancer and had to withdraw. Bummer!

Dave Fleet, perhaps you can train with her next year!

Michelle

Dear Eden,
I've always known you posess great courage. Now others know as well. You have constantly been an inspiration to me--in many ways.

With much love,
your proud sister,
Michelle

zoe

Eden - my thoughts and wishes are with you. You are a force to be reckoned with and an incredible inspiration.

z

Lex

Eden,

you are a very courageous woman. I'm honoured to know you.

Eden Spodek

Mich, you're making me cry. Stop it! ;)

Zoe, I know you've had a lot on your plate lately too. Unfortunately, too many families have to deal with this crap.

Lex, I'm speechless.

I think any of you (meaning everyone who commented and I know most of you personally) would have done something similar if put in the same situation. You all inspire me in many ways.

Douglas Walker

This was an intense and brave post. Knowning you personally I experienced disbelief, awe, and a hefty dose of fear.

I can't imagine the stress and heartache that being presented with these kind of choices must bring to you and your family. I am so glad that you are out the other side and able to discuss it openly. You are an excellent ambassador for this cause.
I wish you and your family health, happiness and hopefully no further need of your immense reserves of courage.

Mark Evans

Eden,

Glad you decided to share your experiences. So many difficult things in life are either kept hush-hush or pushed into the background for whatever reason. My mother was diagnosed with breast cancer a few years ago, and raged against the world because she had so much more to do, places to see, children and grandchildren to see grow up. While it was sometimes difficult to be at the receiving end, it helped her deal with the roller-coaster of emotions involved. Fortunately, she went through treatment and received a clean bill of health.

Good health to you!

Mark

Eden Spodek

Doug, Yes, there's another side of me than the nutjob you were sitting with at mesh last Thursday morning. Thanks for talking some sense into me. I often wonder how I am so strong when it comes to the bigger issues and not as strong when it comes to some of the others.

As for my story, believe it. I have the battle scars to prove it and fortunately they are starting to fade. I never set out to be an ambassador for the cause. I just felt the time was right to tell my tale. Thanks for all your wishes. I hope you're right. We've all been through enough.

Mark, Glad your mother is doing fine and sorry you had to watch her battle breast cancer. Her rage is a reminder that life is short and we should make the most of every day. I don't do that enough.

When it comes to BRCA and other gene mutations, going public is a difficult thing because of the implications for everyone who shares your gene pool. It wasn't only my story to tell. I wanted to make sure other family members were okay with my decision first. It has taken a long time and I know posting my story here will not invade much of their privacy.

Although my kids were aware of what I was going through at the time and why from a family history perspective, they had no concept of genetics. Opening up has forced me to have the discussion with my 13 y/o earlier than I may have otherwise.

Hopefully, my children won't face any insurance issues or other discrimination when they grow up as a result of my decision. I'm also trusting this issue will stay off Facebook. I have younger relatives whose privacy I need to respect and who may not have the maturity to deal with this issue.

kdpaine

thank you SO much for writing this. I have so many friends wondering what to do, and you laid out all the right reasons to make the choices you did. You're an inspiration and I'm very proud and pleased to have met you.

Eden Spodek

Katie, I feel the exact same way about you only I wish I had even half the handle on understanding social media measurement as you. ;) Your friends have an open invitation to ping me anytime. You know where to find me. So glad we met and I hope to see you again soon. Sorry about June 29.

Brenna Flynn

Wow, you're an inspiration Eden. Thank you for sharing your story. Both my mother and my grandmother have overcome this scary disease. It's women like you, my mom and my grandma who make the rest of us women stronger.

Eden Spodek

Brenna, Glad to learn your mother and grandmother are both survivors. You're lucky to have them as role models.

WhyMommy

Thank you for sharing your story. I'd like to invite you to share more over at our brand new blog for mothers with cancer -- I've just written the initial post about it; the site is not ready yet, but we're lining up contributors.

This is great!

Eden Spodek

WhyMommy, Thanks for your comment. I'm not sure I'd qualify for you blog as I didn't have cancer. For now, I'll probably stick to posting here and back up Susan once and a while.

HappilySingle

Eden, thank you is all I can say. Sharing your story will help so many other women in ways we will never know. I know it from my mom's story. It is very brave and so important. I am so sorry for everything that you have had to undergo and am reminded what an incredible woman you are. I hope next time I am in Toronto we can get together to celebrate life.

Eden Spodek

Ayelet, thanks for your comment. I'm just a normal woman who looked adversity in the face and said "I'm going to win this fight!" It's been ages and I'd love to get together next time your in town.

As for helping other women, I spoke to Aletta Poll, the genetic counsellor who was quoted in the Globe article and works with Dr. Narod. She told me she's going to share this post with BRCA patients as a learning tool. Aletta made my day - sharing although difficult - was worthwhile.

Eden Spodek

There's been some confusion about BRCA and the testing guidelines for Jewish women in Canada, based on some of the feedback I've received.

The BRCA gene mutation isn't unique to Ashkenazi Jewish women. There were 10 women in my support group. They were from a variety of religious and ethnic backgrounds, with about half being Ashkenazi.

The comments to this entry are closed.

The Story Begins

About My Cancer

  • Invasive Lobular Carcinoma
    My form of breast cancer is less common than others. In fact only about 6 to 8% of cases of breast cancer are the invasive form that is based in the lobules, not in the milk ducts.

    Invasive, sometimes called Infiltrating, is a scary word. In most cases this form of breast cancer has been present for 8–10 years when detected by a mammogram or physical exam.

    In my case there was clearly an area that felt thickened or dense on December 6, 2007. A mammogram the next afternoon was not able to detect it but it clearly appeared on ultrasound and was confirmed by multiple biopsies the same day.

    During those 8 to 10 years the cancer took to become apparent to me, there has been plenty of opportunity for those invasive cells to get out of the breast and spread to the rest of the body.

    It is after all, by definition, an invasive form of cancer.

    Each year about 190 thousand women are diagnosed with invasive breast cancer in the US and about 40 thousand women will die of the disease. The larger the mass is when discovered the more risk. Mine had tentacled almost 5cm into the surrounding tissue and two other areas in the breast were discovered as well.

    My chances of living another 10 years without cancer in another area are about 40%. The likelihood of one of my other underlying health conditions doing the job before that is 20%. it took a few months to get used to that idea.

    Now though my attitude is that at least I know what I'm facing. It's just not what I expected. Life changes in an instant.

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