BY GUEST BLOGGER | JULY 11, 2013
In 2010, Lindsay and Tony Giannobile returned from a vacation in Italy, their last "hurrah" before starting a family, but the life-changing news they received wasn't what they were planning for.
At 28 years old, Lindsay received a diagnosis of stage 3 HER2-positive breast cancer. Listening to Lindsay talk about her struggles and determination to not let a cancer diagnosis stop her from becoming a mother, I was inspired. Her story could give other cancer patients and survivors hope of having or continuing to have a family.
"It was our dream to have a family," Lindsay says. Unfortunately, like many other young adults with a cancer diagnosis, Lindsay learned infertility was a risk with her treatment.
From what I've learned, not all patients are given upfront information about potential fertility risks before therapy. If I had treatment and learned, after it was too late, that I could've done something to be able to have children of my own one day, I would feel denied the right and ability to have biological children.
With chemotherapy, the possibility of infertility may depend on age, type of drug and drug dose. Ifosfamide, chlorambucil and cyclophosphamide are a few drugs that can damage eggs. High doses of radiation therapy can also lead to premature menopause by destroying eggs in the ovaries. Even radiation not aimed at the reproductive organs can still cause damage by bouncing rays inside the body. Several options are available for women who want to plan for a family after treatment, including egg or embryo freezing, using an egg donor, surrogacy and adoption, to name a few.
The couple chose to freeze embryos before Lindsay started chemotherapy in late 2010 with the hope that she might be able to carry them after her year-long treatment of chemotherapy, radiation and surgery.
"We're very blessed that I had babies on the brain," she says. "That really was our only chance at the time."
The Giannobiles' plan for Lindsay to complete therapy, be finished with cancer and have a child was derailed when, a year after starting treatment, she learned the cancer had spread to her bones. The cancer, now stage 4, ultimately means she will stay on treatment indefinitely.
"Tony kept saying, 'God will make it so that we can be parents'," Lindsay says, but at this point, the couple had very few options of starting a family. Surrogacy was their first choice. They would have tried adoption, but Lindsay was told by multiple sources that they wouldn't qualify to be adoptive parents because of her cancer diagnosis. "We wanted our biological baby, and we believed that God's plan for us was just that since we were able to freeze embryos successfully," she says.
Their first order of business: find a surrogate.
Lindsay and Tony reached out to surrogacy agencies and sent emails to friends and family, asking if they knew anyone who might be willing to carry their child.
The Giannobiles received a response from Kristen Keighley, who she met during treatment.
"She said, 'I can do this, I want to do this for you,'" Lindsay says. "We got things started from there."
Surrogacy is one of the most expensive options for women unable to conceive. It can cost anywhere from $10,000 to $100,000, which includes doctor appointments, embryo transfer, surrogate compensation and legal fees. Most costs are not covered by health insurance.
To help them finance the surrogacy, friends of the couple held fundraisers. Lindsay's friend, Matt Russo, raised $1,000 for every mile he ran in a Columbus, Ohio, marathon. The final total neared $30,000.
On May 15, Lindsay and Tony's son, Rocco, was born via caesarean section. Lindsay says words can't describe the experience of watching Rocco come into the world. It is something she and Tony will always "vividly remember."
"To think our baby was frozen for about two years, then developed in someone else's body is just an absolute miracle," she says.
Lindsay describes their surrogate as a "selfless, selfless person." Kristen, a single mom, works and attends school full-time. "And to add one more thing to her plate, she carried our child."
Lindsay isn't ashamed of her decision to use a surrogate and feels surrogacy isn't talked about enough.
"I think our generation has gotten better with talking about cancer, but surrogacy is a different story."
Lindsay encourages others to not give up on the dreams they had before cancer. "Look at the things that you thought your life would consist of before cancer" she says. "I think that is so important."
For more information on requirements, costs and support for surrogacy, here are a few resources:
You can read more about family planning with cancer in CURE's Summer issue article, "Managing Expectations."RELATED POSTS
BY ELIZABETH WHITTINGTON | JULY 8, 2013
Cost is one of those "difficult conversations" between a patient and a physician, right up there with end-of-life discussions. Does that surprise you?
An article posted online from the Journal of the American Medical Association addresses the issue of medical cost in "First, Do No (Financial) Harm."
"... seemingly simple decisions that physicians make about testing could directly lead to thousands of dollars in out-of-pocket costs," the authors write, noting that physicians shouldn't assume that high medical costs are a known and unavoidable fact of life for all patients. The article encourages physicians to optimize care for individual patients in regards to cost, a strategy used commonly to treat cancer. The article is geared toward a general medical audience, not specifically cancer, so the examples it provides may not apply. However, the overall theme is that physicians should have a financial conversation with their patients, including if patients are worried about cost and are understanding the financial ramifications of screening and treatment.
"Too often physicians choose less than ideal options for their particular patients not due to a lack of caring, but rather a lack of knowing. This includes not prescribing generic or other insurance-covered drugs when appropriate. Lack of awareness about the opportunities to provide higher-value care should no longer be an allowable excuse."
While the article is geared toward physicians having that financial conversation with their patients, this should also encourage patients to initiate the discussion. Asking for lower cost treatment alternatives, generics or making sure their doctor works within their insurance plan are conversations that patients shouldn't be ashamed to have with their physicians.
At the annual meeting of the American Society of Clinical Oncology this year, a study examined how likely insured patients were to talk to their physician about treatment cost. Nearly half of the 119 patients surveyed expressed a desire to discuss the issue, but only 21 percent had actually done so. Of that 21 percent, half felt the discussion helped lower their treatment costs.
In another study of women with breast cancer, 94 percent believed cost should be discussed between patient and physician, but only 14 percent reported ever having the discussion.
"To provide truly patient-centered care, physicians can live up to the mantra of 'First, do no harm' by not only caring for their patients' health, but also for their financial well-being," the authors conclude.
Do you discuss cost with your physician? And does cost affect your treatment decisions?
Stay tuned for more on this subject. CURE is producing a supplement on the cost of cancer care later this year, which will include tips and resources to help manage the financial burden of cancer.RELATED POSTS
BY DEBU TRIPATHY | JULY 3, 2013
It may confuse most of us how our DNA, a product of nature that defines our identity and personal traits, could have been patented in the first place. Some claim that patent protection for years of hard work is needed to continue our efforts to isolate and identify genes in order to help develop diagnostic tests and therapies for the good of the general public. [Nature: Myriad ruling causes confusion]
Myriad, the gene diagnostic company that has been in the cross hairs of the recent Supreme Court to invalidate key portions of their patent on the breast and ovarian susceptibility genes BRCA1 and 2, should be credited for their diligent work. They have helped thousands of patients know their cancer risk and act accordingly, and have allowed the medical community to better understand which mutations are actually harmful – something that requires access to large amounts of pooled information.
However, the prices commanded for testing no longer reflect the state of the art of gene sequencing that has dropped precipitously with newer "next generation" sequencing technology. [CURE: Can a Human Gene Be Patented?] Furthermore, the discovery of the BRCA genes were not made in isolation but rather grew out of earlier work to pinpoint the general location of these genes dating back nearly two decades earlier.
Nimble and efficient gene diagnostic companies are popping up like Internet start-up companies of the 1990s. Their day has now arrived as they find new freedom to operate.
The Supreme Court's decision is not fully sweeping and its effects will not be seen overnight [New York Times: Justices, 9-0, Bar Patenting Human Genes]. Larger companies like Myriad still retain significant intellectual property and will probably switch over to offering more complex gene panels tests and tissue assays that go beyond the effect of single gene mutation, but rather the biological impact on tissues. This too, will move the field forward. But will competition in the free market lower prices of testing at the cost of reciprocal stifling of investment and innovation? Only time will tell, but history seems to be on the side of healthy completion equaling continual improvements in both quality and value in most other areas.
We hope the same will pertain to the matter of our genes.RELATED POSTS
BY GUEST BLOGGER | JUNE 19, 2013
I've always known that cancer is the growth of abnormal cells, can spread from its primary site, consists of different types and stages and that it's sometimes called the silent killer.
If you're like me, you've always thought to yourself, "Knowing all of this gives me a good idea of what cancer is." After my first week interning at CURE, all I can do is laugh at myself.
By the way, I'm Jennifer. I'm the editorial intern at CURE for the summer. I'm very excited to be working with such an outstanding group of individuals, but I'll let you in on a little secret. I really don't know what I'm doing.
At first, I felt a bit out of place; like I didn't belong here because I had no idea what anybody was talking about. Yes, it was overwhelming. I'm working at a publication for cancer patients, survivors, caregivers and families, and don't have much background in cancer. My interest in CURE came from writing for my college newspaper, The Daily Mississippian at the University of Mississippi. As an editor/reporter, I often wrote stories of how people overcame unwanted obstacles or burdens. I've always enjoyed telling the stories of others, and appreciated the lessons that came out of it.
But a comment from Lindsay Ray, the assistant editor at CURE, made me feel that my lack of knowledge wasn't necessarily a bad thing, and that it somehow connects me to our readers.
"Think of yourself as a newly diagnosed patient," she told me. "Most of them don't know anything about their cancer at first."
True. It was definitely a lot to take in on Day One. I was scared and intimidated listening to the editorial staff on my first day. I'm willing to bet it's scary to hear that you have cancer. If something didn't make sense to me, I would look it up. If you're diagnosed with something you're unfamiliar with, you're very likely to do your research on it.
Obviously, learning about cancer will not happen overnight. It will not happen over a week. It probably won't even happen by the end of my internship in August. No, scratch that, it for sure won't happen then.
The beginning of a journey can be many things. It can be scary, overwhelming, exciting or anything else. There are sometimes when we're unprepared for it, whether it's a new job or a new diagnosis. The rest of the journey is up to us, and we can only control how we handle it.
So please, what do I need to know to help you?
Jennifer Nassar, a journalism graduate of Ole Miss, is a summer editorial intern with CURE. Jennifer enters graduate school at the University of North Texas this August.RELATED POSTS
BY KATHY LATOUR | JUNE 17, 2013
The Tampa Bay Times did a story on the country's worst charities, and it won't surprise you how many are for cancer.
These aren't charities that are trying their best to help, these are charities that are trying their best to get you to give them money so they can live an expensive lifestyle. They have no intention of helping anyone. They just want you to think they are so they can get your money. (You can read the full story here.)
Charities that don't do what they are supposed to with donated money are a particular issue of mine because the millions and millions of dollars that they bilk from honest people in the name of true pain and suffering makes me . . . well it makes me really mad. The reporter did a little math and came up with these figures for the top 100.
$970.6 million cash paid to solicitors -- $380.3 million cash to the charities -- $49.1 million to direct cash aid --
If you are going to make a donation to a charity, do your homework. First, read up on these worst charities and see how they run their scam.
If you are called or someone comes to your door, don't be taken in, ask for their documentation and then do your research. Don't let anyone bully you into giving them money.
Here is what you need to know:
What does it take to be a good nonprofit? What questions do you need to ask? Nonprofits are awarded their status by the IRS based on having a board of directors and a mission. It's not hard to do, which makes fraud easy. A legitimate nonprofit takes lots of hard work to raise money and to provide a mission. This doesn't mean there is no paid staff. Nonprofits have to be run like a business, and because of fraud, the IRS now has a ruling that you can walk into any nonprofit and ask for their 990, which is documentation of what they have raised and what they declared to the IRS. Of course, those documents can also be falsified. So there are professional organizations who judge the legitimacy of nonprofits to help us know where to give money.
The best of these is Charity Navigator. Go to this site and put in the name of a nonprofit you want to support and see where they are graded in a number of areas. Also, if you are looking for a place to give a donation, you can see which nonprofit would do the most with your money. So if it's mammograms for poor women you want, search for the nonprofits that provide those and have a four-star rating and give to that group.
Charity Navigator also offers education on how to know when a nonprofit is trying to misdirect you. They have provided one link called The Top 10 Practices of Savvy Donors, which I highly recommend. But before you go there, I have a few suggestions of my own. 1. In your research on a nonprofit, don't go to their website. It's not hard to lie on a website or have a few pretty pictures to document lies. Just check the website of the first organization on the list of worst charities. 2. Don't let them talk you into it when you are at your worst. It's not above these people to call you when the obituary is in the paper.
The list given by Charity Navigator includes being proactive, or knowing exactly what the group does with your money. What is their mission? If they can't tell you when you ask, tell them you will get back to them and then do your research.
Fake charities use paid middlemen, either phone solicitors or door to door salesmen. NEVER give out your personal information over the phone and reconsider even giving funds to a group that uses telemarketing – except that some groups you may have given to in the past that are well known in the community may call to have you renew your donation.
Be very careful about sound-alike names. The Make-a-Wish Foundation is a national foundation that helps children with terminal illnesses and it has been in operation for many years. If you go to Charity Navigator, you will see that it is a four-star charity in a number of states (and does less better in others since it has state affiliates). But it is in no way connected to Kids Wish Network, which has the distinction of being at the top of the worst charities list.
Believe it or not, the basics should also be checked. Is the group truly a 501c(3)status, and that means they should be on Charity Navigator, and if they aren't they should have a good reason. (Let me put a word in here for the nonprofits that are not fraudulent but struggling. If that is the case and you think their mission is needed and relevant, then join the board and help them build the program.)
But back to the bad guys.
Ask to see the financials to determine if the amount of money spent on mission is 65 to 75 cents of each dollar raised. No more than $.35 of each dollar should be spent on development (fundraising).
If you plan to make a large donation, ask to see the mission in action. What exactly are they doing? Understand the problem in the community and see who else is working to solve it. Does this nonprofit even need to exist or could it do better to merge its energy with another group. Should you suggest this?
It doesn't matter how much you plan to give, it's your money and you can ask all the questions you want to be sure it will be spent the way you want. Right now, billions, yes billions is going into cars, lake houses and high living for people who have duped people into believing their money will provide something for a community in need.
Don't let it happen again. And, it's not too late. Go back to them and ask for the money back. Call the Better Business Bureau, call the media, call the IRS. Put them out of business.
I got a fundraising note on my door a few years ago. After starting two nonprofits and raising considerable money in my life, I knew it looked phony. It was also for breast cancer, and I had never heard of it. Instead of sending in a check in the stamped envelope, I called the number on the letter and got an answering service. I left my number, fully expecting not to get a call back. When I did, I asked for the man who had signed the letter. The person said he wasn't in, and why did I want to talk to him. I said I wanted to ask some questions about what they did.
She said she would have him call me. I never heard back. There were clearly too many other suckers to focus on than to spend time with me.
It's your hard-earned money. Don't give it to someone who will use it for a lake house.RELATED POSTS
BY LINDSAY RAY | MAY 8, 2013
I sat in on a session about genetics and biomarkers at the annual Oncology Nursing Society Congress in April. After the session was over, the nurse next to me turned and said, "This is the future." And that really was my feeling as well. What can sound like a lot of scientific jargon is actually really important to understanding how not only cancer works but also how our bodies function.
We have come a long way in our understanding of the inner workings of cells. April 14 was the tenth anniversary of completing the map of the human genome. With that basic road map, we've been able to ramp up research efforts into genetics and genomics. In 2009, there were about 285 genome-wide association studies; recently, there were more than 7,000. But what exactly are genetics and genomics? And what do they mean for cancer patients?
DNA contains all of our genes. The genome then is the entirety of that genetic information. Let's think of DNA as a book. The genome would be like the table of contents telling you what's in the book. And each gene would be like a chapter, complete with its own more detailed information. Genetics is the study of a single gene. It would be like intensely studying a chapter in the book.
Genomics is the study of several genes. So you'd look at multiple chapters in the book and see how they can improve your knowledge overall and relative to each other. There are ways that researchers can drill down even further and look at much more detailed genetic information as well. But while we have this book and table of contents, this wonderful resource of information, we still can't read all of it. Better understanding this information is what drives research.
In cancer research, scientists are mostly concerned with genetic mutations. The gene's purpose is often to produce necessary proteins. When a mutation occurs, and there are many kinds of mutations, the cell can no longer produce these proteins correctly. Genetic mutations can either be hereditary and passed on from family member to family member, or they can develop after we're born and as we grow older, changes called somatic mutations.
This is where biomarkers come in. A biomarker is any sort of biological molecule that can provide us with certain information about diseases and treatments. It can be found in the blood or tissue, for example, and it can even be a change in a gene. Some of the main uses for biomarkers in cancer help us try to find cancer early (screening), determine how treatable or "bad" a cancer is (prognosis), figure out if a treatment will work for a particular patient (predicting) or see if a treatment is working (monitoring).
For example, two of the most well-known genetic biomarkers are in breast cancer--the BRCA1 and BRCA2 gene mutations. These genes give us prognosis information--women with these mutations are at an increased risk of ovarian and breast cancers.
An example of a biomarker that tells us slightly different information is the epidermal growth factor receptor (EGFR) in lung cancer. Some mutations to this receptor might mean that the tumor will respond well to certain tyrosine kinase inhibitors, whereas another mutation in the same receptor means that the tumor might actually resist these types of drugs.
These are only a few examples of the types of biomarkers for cancer, and this information only scratches the surface of what we're learning from genetics, genomics and biomarkers. As research moves forward, we get a little bit closer to reading more and more of our genetic material and understanding its implications in terms of better outcomes for cancer patients.RELATED POSTS
BY GUEST BLOGGER | MAY 3, 2013
"Life isn't about finding yourself. Life is about creating yourself." George Bernard Shaw
When cancer happens to us it's common to feel completely out of control. We go from our "normal" lives to something we reluctantly call the "new normal." The problem is that it doesn't feel normal at all because we are changed suddenly and forever.
I got a glimpse into the emotional trauma caused by sudden, catastrophic change as a trial attorney. Almost every accident victim I spoke with was overwhelmed by it, "I was going along fine and, all of a sudden, my entire life changed completely in a split second." I didn't relate then, but years later when I heard "You have cancer," I completely got it.
In truth, we feel out of control as we rocket through the diagnostic and treatment phases of cancer because we have little control. This is the nature of the beast. For the first six and a half months of my cancer journey (from mammogram to mastectomy), I white knuckled every decision, test, doctor's appointment and surgery.
It was only after my mastectomy that things began to slow down enough for me to begin the clean-up work that follows every emotional hurricane. For me, healing required accepting change and working through issues such as body image, mortality, stress, loss, loneliness and anger. As I did so I discovered the creative power of reinventing myself.
Although I had no control over the many sudden, traumatic changes cancer dealt me, when it comes to reinventing me, I have a lot of input. I can find little ways every day to live with mindful awareness. I can practice yoga and let uplifted feet lead to an uplifted heart. I can make small, healthy changes in my diet. I can savor moments of gratitude and cherish every opportunity to give back.
The following are the six tools you need to find your creative power of reinvention:
1. Resilience: The reason we're all still here and upright is because we're resilient. Nurture your resilience on a daily basis. (Read "Six Truths I've Learned About Resilience.")
2. Grief: No one gets hit by a bus and reinvents herself the next day. Grieving is the process of coming to accept the "new normal." It's painful, but it's a vital step in reinventing yourself.
3. Gratitude: I firmly believe that gratitude is the single most important building block of reinvention. Without gratitude, there is no hope. With gratitude, anything is possible because we know how very blessed we truly already are.
4. Support: Speak up, tell your story, share! If you want to find support you have to communicate. The beauty of finding others who "get it" is the strength they give you to reinvent yourself.
5. Small Successes: Make small stabs at reinvention to achieve small successes. As you do, you get bolder and can stomach more risk. You can do it!
6. Carefully Chosen Words: Reinvention is self-inflicted change and change is scary. That's why, even when you're excited to reinvent yourself, you're also anxious. Instead of scaring yourself unnecessarily, why not change your words and thus your approach. If you break out in a sweat every time you say, "I'm going back to work," try saying, "I'm excited to find new opportunities to (fill in the blank.)"
Reinvention also takes time and, most importantly, permission. We can reinvent ourselves and take back control over the "new normal." We can take what we've learned from our struggles and use our creative power to reinvent ourselves. When we decide "WhereWeGoNow," our reinvented selves create inspired healing, wellness and live out loud joy!
Debbie Woodbury is the author and founder of WhereWeGoNow, an interactive community for cancer survivors creating inspired healing, wellness and live out loud joy. Debbie is a blogger at The Huffington Post, an inspirational speaker, a support volunteer with The Cancer Hope Network, a member of the Carol G. Simon Cancer Center Oncology Community Advisory Board, a patient educator with the Pathways Women's Cancer Teaching Project, a wife and mother, and a former very stressed out lawyer. You can also find Debbie on Twitter and Facebook.RELATED POSTS
BY LINDSAY RAY | APRIL 26, 2013
As I spend more time with oncology nurses, I continue to be in awe of them. I walked over to the conference this morning with a wonderful nurse who was just completely excited about learning more information and being able to take this information back to Indiana to better help her patients. That eager, helpful spirit permeates the vibrant atmosphere at the Oncology Nursing Society Conference. Nurses view themselves as partners with their patients during the cancer experience. And that is evident in the compassion and empathy they demonstrate for their patients.
For example, I attended an informal discussion about the challenges young adult cancer patients face. Nurses had gathered to talk about what exactly defines a young adult, the isolation young adults can feel by being treated in patient unit usually filled with older adults. And the topics of sexuality and infertility became a main focus. Nurses worked on identifying reasons why they might not bring up the topic of sexuality with their young adult patients--nurses might not know how to answer the questions, there could be an age barrier, they're unsure when's the right time to bring up the topic, etc. Figuring out the barriers to having this particular conversation is just one step closer to making this topic more open to patients.
But a recurring theme I have heard from nurses is that it's not only their responsibility to teach their patients, but they also have the opportunity to listen and learn from their patients. Working together patients and nurses can make treatment and quality of life during cancer better.RELATED POSTS
BY LINDSAY RAY | APRIL 25, 2013
Although I've worked with CURE for a few years, this was my first opportunity to actually attend our Extraordinary Healer award event. I've always heard that this event is special, but there's a difference between knowing an event is special and actually being there to experience that special moment. No words can quite capture the feeling that was in the room. And I'm rarely at a loss for what to say--words are kind of my job. But I can try to capture some small amount of what happened this evening.
It was moving to listen to honorary mistress of ceremonies Marlee Maitlin describe the many obstacles she's had to overcome to achieve her dreams of being an actress and the people who helped to shape who she is along the way. As she so thoughtfully pointed out, oncology nurses often serve as the people who help shape cancer patients lives--they help to heal, but also help patients find their own gifts and overcome challenges both personal and medical.
And while I had read the nominating essays, it was different to actually hear these words from the patients themselves. To stare into the nurses' appreciative faces. But mostly what made it special was that it was a shared experience. There were people to share in the laughter and the tears, people who know all about the circumstances being described.
So thank you to all the oncology nurses who were able to share this experience with us. And thanks to all the oncology nurses and patients and families who have shared so much of themselves and their experiences with us over the years.RELATED POSTS
BY SUZANNE LINDLEY | APRIL 23, 2013
Chloe woke up and climbed into our bed at midnight. I was just drifting off to sleep after hours of restless and unsettled thoughts and had hoped that she would simply fall asleep. Instead, she loudly proclaimed that she was starving. I watched her lay sullenly for a minute or two and then, with an exasperated sigh, she once again declared her hunger.
My mind was still far, far away and focused on the anguish that had laced these past few days. I couldn't stop thinking of my friend Annie, whose husband and little ones were discovering their first nights of life without her, of Gabriele's family and their loss, of Debbie and her loneliness without Skeeter, of the horror that unfolded in Boston, and of the explosive catastrophe in West, Texas. I thought of Jen and her vigil by Kevin's bedside and my prayers for his recovery. So much in the world not right. So many friends struggling. I had spent sleepless hours marveling at the strength that was surfacing amidst the grief and tumult of these tragic events----in the chasm of death, the loss of life, the devastation of a community and the ravages of cancer were signs of courage and faith. Yet I felt lost in the uncertainty and sadness life holds.
I listened for a minute more to Ronnie's even breathing. Then I gently kissed Chloe's cheek and hugged her tight. Reluctantly at first, I pointed to the door and grabbed her hand. We quietly padded down the stairs and tiptoed into the kitchen; her happiness evident as we decided that Spaghetti-O's and hot chocolate would make the perfect late night snack. We talked about her friends and what she was doing at pre-school. We chatted about Fancy Nancy and Doc McStuffins. She giggled and proclaimed that this was fun and just as suddenly that she was tired. We danced through the kitchen and back up the stairs. The world once again seemed right. I tucked Chloe in and a tear fell from my cheek to hers as I realized the beauty of our adventure. We had just shared all in the world that is certain...the gift of this moment.RELATED POSTS