A healthy woman’s battle with breast cancer

By Eden Spodek

After months of agonizing over whether or not to make my story public, I’ve decided to come out as a woman who has decided to share something very private. Especially since so much of my life has become public over the past 20 months with the launch of my blog. This story is a very painful one and one I’ve only shared with close friends. Between 2002 and 2005, I had a double mastectomy, reconstruction and a complete hysterectomy. Here is my story…

Saturday, May 24, 2008 marked the date of my eldest son’s Bar Mitzvah. There was a time when I wondered whether or not I’d live to see the day. For me, it was a day for celebration on two levels.

Eight years ago I learned I had a genetic mutation known as BRCA1. According to current statistics, I had close to a 70% chance of developing breast cancer and a 40 % of developing ovarian cancer by age 70. The odds of it happening sooner than later were also staggering. It was the beginning of a difficult journey that I believe helped prolong my life. Otherwise, I feared I wouldn’t have been around to watch my children grow up.

Why did I get tested in the first place?

My mother was diagnosed with early-onset breast cancer at the age of 32 and died when she was 37 (I was 15). There was also a history of breast and ovarian cancer in her father’s family. I am also an Ashkenazi Jew (a high-risk group with 1 in 44 women having a BRCA gene.) Those two factors made me eligible to for genetic testing when the criteria was more stringent than it is today. (For the first time in Canada, Jewish women regardless of family history will be offered the genetic test for free*.)

I also had some early warning signs, excellent physicians and started having mammograms when I was 28. When the first familial breast cancer practice opened up in Toronto while I was in my early 30s, my gynecologist urged me to meet with Dr. Paul Goss, a medical oncologist specializing in familial breast cancer research. I think I had just given birth to my eldest son. I was offered genetic testing early on but knew I wanted another child and didn’t want the results to get in the way of my decision. I waited almost two years after my second son was born.

I suspected I already knew what the results would be and I wasn’t ready for them to be confirmed. Once they were and I was told I had the BRCA1 gene, I wasn’t surprised but I’d by lying if I said I wasn’t upset. I was upset enough to gain more weight than I had gained during pregnancy. (I lost 30 pounds six months later and kept if off until I struggled with my body image during the breast reconstruction process.) Through the familial breast cancer clinic, genetic counselors and social workers were at my disposal. I spent a lot of time studying the genetics issues. I had lots of decisions to make:
• do nothing,
• enter a more intense screening program,
• take Tamoxifin for five years which at that time was more experimental, or
• have prophylactic surgery – an option I had sworn against since I’d heard of high-risk women opting for it years earlier.

After doing some heavy soul-searching and scads of research, I chose more screening including regular mammograms and MRIs as part of a study. I also tried Tamoxifin. After 3 weeks and feeling like I’d aged 20 years, I nixed the experimental drugs. I hated the MRIs yet I refused to take the sedatives they offered during the procedure. I also hated waiting several weeks for results – results that were often unclear or false positives – that often required repeating. I also had an area described as “ropey” on the left side of my left breast. Doctors performing clinical breast exams were always concerned. I kept having doubts about the efficacy of the screening. I also had spots called calcifications – another warning sign of things to come.

Eventually, prophylactic surgery seemed like a more viable option. Dr. Goss was known for being aggressive when it came to recommending prophylactic surgery as prevention to otherwise healthy women who may or may not develop breast cancer. And, with early screening and detection the odds of survival were increasing. Except for one thing, he thought women with BRCA 1 or 2 seemed to get more aggressive cancers and even early detection wasn’t always enough.

So, he sent me on a journey.

I spoke to every leading breast cancer specialist in southern Ontario. Each one had a different area of interest and a different perspective. Male doctors also seemed more in favour of surgical options than their female counterparts. I also spoke to specialists in Eastern Canada and Chicago.

While on my journey, new information emerged about the relationship of ovaries and breast cancer. Specifically, removing them and/or tying fallopian tubes would not only decrease the chances of ovarian cancer but was also found to decrease the risk of estrogen-receptive breast cancers. My childbearing years were over and the thought of removing invisible organs instead of my breasts seemed like an easier option.  I started asking my gynecologist questions like “If I remove one ovary and tie the other tube, what would my risk reduction be?” She referred me to one of the two top gynecological oncologists in the city.

Timing is everything.

A mere two weeks before my appointment, a well-supported study was released comparing two groups of women with BRCA1 who opted for prophylactic surgery. There was a staggering difference in the occurrence of ovarian cancer for those women who removed just their ovaries vs. those who removed their ovaries and had a hysterectomy. The surgeon made a convincing case for the latter. I left the office in tears and was told I should have the surgery within two years because I was two years away from the age when the cases of ovarian cancer in BRCA women increased exponentially. Ovarian cancer is very difficult to detect, particularly in the early stages and difficult to cure.

After much research, anxiety and introspection, I decided to start what would later become a three-year surgical misadventure, with an oophorectomy and hysterectomy. I had just turned 40, and a young 40 at that. The thought of premature aging and losing my breasts was daunting and scared the you-know-what out of me but I was married with two young children and the though of them living without me was far more frightening. I knew what it was like to grow up without my mother and couldn’t bare the thought of my kids growing up without me.

Besides with laproscopic surgery, the procedure was supposed to be quick and the recovery relatively easy. Unfortunately, things don’t always go as planned. I started bleeding uncontrollably. They had to cut me open after all. I almost bled out on the table. When I woke up, I was left with huge stretch marks (I never got any during pregnancy so they were quite a shock), anemia, chronic lower back pain and frequent bladder infections for the next six months. A 3-week recovery period turned into a three month absence from work.

Back to the boobs…

I continued with the MRIs, mammograms and clinical exams. After getting the all clear several times, things changed. I was diagnosed with a fibroid adenoma. I had a small benign spot on my right breast that was indicative of a future malignancy. I had two needle biopsies – the first one inconclusive, the second one seemed all clear. Regardless, I couldn’t stand feeling like a sitting target. I was ready to tackle the next round and have a bilateral mastectomy.

Next I had to interview and be interviewed by the surgical team. They needed to make sure I was comfortable with my decision and had done my research. It didn’t take much to convince them. The plan was for immediate reconstruction with expanders for six months to be replaced with cohesive gel implants.

Unfortunately, things didn’t go as planned this time either. My incisions didn’t heal properly. The expanders had to be removed two weeks later. I went from a double DD cup to being flat as a board for eight weeks. I wanted to end up a B or small C.  Instead I wore prosthetics for several months until I was healed enough to have the expanders reinserted. It was almost two years before my breast reconstruction was complete. For most women it takes between six months and one year to complete the process. The good news was they didn’t find any malignancies during the post-op biopsy of my breast tissue.

Along the way I had a supportive husband and family, joined a support group and spent a lot of time as part of an online community for high-risk women called FORCE as “ElisaS” (a hybrid of my real name). I met several other women in real-life and online who were dealing with similar issues. Out of the 10 women in my real-life support group, 5 of us have remained close over the years. Of the 5 of us, only one woman hasn’t had any preventative surgery. She was recently diagnosed with breast cancer. Fortunately, it was caught early but it may have already spread to her lymph nodes. She’s awaiting her prognosis.

Why didn’t I do this sooner?

I was concerned about my privacy and that of my family. I needed to wait until they were comfortable with my decision to go public. I believe there is a stigma attached to women with a BRCA gene mutation who choose surgical prevention. We’re caught between a bit of a rock and a hard place because we’re treated sort of like we have breast cancer and sort of like we don’t. We’re still pioneers as far as the medical community is concerned too. I’ve experienced adversity as a result of my prevention decisions and I am concerned about whether or not people will treat me differently as a result. It’s been weighing on me for a long time.

Inspiration

After sharing my experience with Susan Reynolds for months, Katie Delahaye Paine at mesh last week, and conversing with Mathew Ingram on twitter about transparency in the context of the story that broke on the front page of Canada’s national newspaper, The Globe and Mail (also his employer) last weekend – coincidentally, on the same day as my eldest son’s Bar Mitzvah – I knew it was time to tell my story.

I decided the benefits of sharing my experience and possibly helping other women outweighed the costs. I hope I’m right.

...
*NB Dr. Steven Narod, holds the Canada Research Chair in breast cancer and director of the familial breast cancer unit at Women’s College Hospital in Toronto. He is instrumental in the program being offered to test Jewish women for the BRCA gene mutations in Canada. I consulted with him and genetic counselors on his team during my journey.

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.