BY GUEST BLOGGER | JANUARY 9, 2014
For those of you who aren't familiar with the "whatever it takes" style of parenting, it's basically doing whatever it takes to keep everyone alive, well and happy. It's when you swore you would never give your child candy yet you're stashing suckers in your purse. I have (on more than one occasion) actually had to place a banana peel on the grocery store conveyer belt. Yep, I just paid for a banana peel, but it kept my child from screaming in the produce aisle...whatever it takes, right?
A friend with muscular dystrophy told me she often feels judged at her daughter's preschool when making her toddler walk inside the building, instead of carrying her like the other moms. When you have health issues – be it MD, cancer or something else – you have physical limitations other people don't understand. So what if you make your child walk into the school herself or teach your toddler how to climb into his own car seat.
Do whatever it takes to keep going.
And that includes ignoring guilt about not being the perfect parent and nasty looks from people who think such a creature exists. As a wife and mom living with cancer, I have started applying the whatever it takes theory to other areas of my life as well. While a "normal person" might say he/she has a lot on their plate, some of us have plates the size of a turkey platter. My day to day can be pretty heavy, so I give myself a pass on the little things like laundry to fold or dishes to wash.
I went in for my last PET of the year, and while overall I am still doing well, my cancer is starting to resist my current medication. Which means a new drug (but not back in the chemo chair yet!) and surgery. Instead of thinking about the big picture of what this means or the number of medications I haven't crossed off the list yet, I keep my sanity by taking the tactical approach. After all, I am a list maker.
1. New drugs? Researching new side effects.
2. Surgery? Scheduled as soon as possible.
3. Two week without driving? Time for a long visit from Mom.
4. Six weeks without lifting my 2-year old? Teaching Henry how to climb in and out of the car seat
Let's do this thing. I'll do whatever it takes to keep everyone alive, well and happy...including me.RELATED POSTS
BY ELIZABETH WHITTINGTON | JANUARY 2, 2014
Looking back on 2013, we've compiled CURE's Top 10 blogs of the year. We based the ranking on the number of views for each posting, and noticed that triple-negative breast cancer was a top read this year, along with fear of recurrence and metastatic cancer. There also appears to be a few popular posts from past years that continue to make the list.
What do you think? Did the one that impacted you the most last year make the list?
It's not hard to imagine why this one topped our list. The fear of cancer returning is a common emotion in survivors after treatment ends. Kathy LaTour describes her own experience with recurrence fears after her diagnosis 27 years ago, and how she overcame it.
This post was originally published in 2009, when news of PARP inhibitors as a potential treatment for TNBC excited everyone who had knowledge of the disease. While the original research didn't pan out, there is new "good news" in the field. You can read the latest in our Fall 2013 article "Divide and Conquer."
Continuing on with the TNBC coverage, many of our readers were interested in Patricia Prijatel's account of TNBC research from the 2012 San Antonio Breast Cancer Symposium. Patricia, a survivor of TNBC and a patient advocate, provided a great update that spanned various treatments and the biology of the disease. I wouldn't be surprised if our guest blogger from the 2013 Symposium, Michelle Esser, makes the list next year. Michelle wrote an update from this past year's meeting.
Oncologist Richard Frank shares his experience in treating a family friend, a patient with metastatic liver cancer.
While this post was originally published in 2012, we're understanding more and more that screening, treatment and follow-up is not a "one-size-fits-all." As for guidelines, and whether many physicians follow them, we'll be covering that topic later this year.
Maya Silver was 15 when her mother was diagnosed with breast cancer. Writing about her own experience and other teens facing a parent's diagnosis, she offers helpful advice on how to share the information with friends and receive the support teens need during this time.
Would you? A lot of survivors have weighed in since the post was originally published in 2009.
"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." Debbie Woodbury shares her tips on how to take control over the new normal.
This year, Kathy LaTour introduced us to Carrie Corey, a young wife and mother living with metastatic breast cancer. Carrie has become a regular guest blogger with CURE, sharing her experiences including a first beach trip with young son, Henry. You can read her first guest post at "Young, a new mother and metastatic."
What song describes your cancer experience the best or helped you with treatment? Our readers gave their best "fighting cancer" songs, and we compiled them for you.RELATED POSTS
BY SUZANNE LINDLEY | NOVEMBER 20, 2013
I've mentioned the Synergy 2013 meeting in a couple of my blogs now. It was great to see so many brilliant physicians, nurses, treatments and thoughts coming together. It was a learning experience for me, a time to see some old friends, and to also meet some new ones.
On my last day in Florida, Dr. Andrew Kennedy brought Dr. Jim Caridi over to the YES booth and introduced us. It was the most profound moment of the entire meeting for me. Dr. Caridi is a very gifted interventional radiologist of whom I've often heard reference. What I didn't know is the story that follows, taken with permission from his website (OneIAMClub.com).
"As a physician, his efforts were to allay the fears of the patient and make them more comfortable in their situation. He has an uncanny ability to put himself in others shoes and would attempt to lessen the discomfort of the situation. Jim would enter the hospital every day and passing patients, would think to himself "as long as I am on the other side of the glass, I am OK."
On August 10th, 2011, the glass shattered and he entered the other side. Our world stopped when we received the deafening news--Jim had bone cancer. A year has passed and we have been through the emotional roller coaster that all cancer patients and their significant others endure. Though we have not achieved remission, Jim has fought this battle with the same passion and finesse that made him successful in his career and life in general."
Here is a link to his speech at Synergy presented to his peers...from his perspective as a patient.
His talk ends with a quote from Jimmy V, "A good day is when you laugh, you think, and you cry." Jim says he gets two or three of these most of the time and eloquently added two additional thoughts to Jimmy V's quote. You need to dream and be passionate about your dream and you need to pay it forward.
You might ask what do you mean: "pay it forward?" All of you in this room have the ability to pay it forward...I can name 30 people in this room who have emailed me, called me, given me this opportunity. It's simple to do and can make such a difference in people's lives."
I hope you enjoy the video. I hope you are inspired. AND I hope you "Pay it Forward." Truly, it's quite simple! What will you do?RELATED POSTS
BY ELIZABETH WHITTINGTON | SEPTEMBER 11, 2013
In the fall issue of CURE, we look at how patients can prevent common treatment-related side effects, including pharmaceutical strategies and integrative therapies.
We asked our Facebook fans, "Did integrative therapy approaches help you in dealing with side effects from cancer or treatment?"
We received many responses, and they were all across the board.
From yoga and acupuncture to laughing and music therapy, patients and survivors shared what integrative therapies helped them deal with side effects and the psychosocial issues in dealing with cancer and its effects. Many large cancer centers and hospitals offer integrative therapies, and several now have their own dedicated departments and staff.
However, not everyone was quick to answer. Some patients said it was hard to find integrative therapies, especially if they were not offered at the location they received their cancer treatment. If integrative therapies aren't offered at your clinic, there are several non-profit groups that offer support, information and services.
Here are a few tips to find integrative therapy options:
1. Talk with a dietitian. Foods that boost immunity, lower fatigue and have the right amount of calories may help reduce certain side effects. Many insurance plans and Medicare cover nutrition services if it is prescribed by your physician. You can get a referral from your medical team. You can also find registered dietitians at eatright.org. Use your ZIP code and refine your search to "expertise: oncology, cancer nutrition."
2. Ask your medical team and fellow survivors about fitness programs geared toward survivors, including those at gyms, yoga studios and other local hospitals. LIVESTRONG at the YMCA is a twelve-week program that helps survivors increase their health and fitness, but also aims to reduce the severity of side effects. The program is available at certain YMCAs across the country.
3. Investigate whether your insurance company offers discounts or coverage on health programs, acupuncture, massage or other non-traditional therapies.
4. Reach out to local support groups and non-profits that may offer integrative therapies. Organizations such as the Cancer Support Community offer onsite support and classes, including yoga and meditation.
Where did you find your integrative therapy services? Did it help alleviate side effects?RELATED POSTS
BY DEBU TRIPATHY | AUGUST 2, 2013
Can a simple act of a few individuals change how we think about cancer?
Well, not a few, anymore, but a growing choir of voices are now redefining the term "cancer." We have known for a long time that there is a continuum from benign to cancerous growth. We even have names for some of these, such as borderline malignancy of the ovary. In the case of ductal carcinoma in situ of the breast (DCIS), the survival of patients is equal to the general population, but it is often treated with surgery, radiation and tamoxifen.
The Institute of Medicine has called for not just a redefinition of names, but a realignment of the cancer culture of "detect and eradicate." A recent article (Overdiagnosis and Overtreatment in Cancer: An Opportunity for Improvement) in the Journal of the American Medical Association highlights this problem in cancer screening, where the knee-jerk reaction for any cancer is to treat low- and high-risk cancer with many of the same treatment, therefore exposing everyone to side effects and complications while many derive no benefit--because their chance of dying or having their life affect by their "cancer" was minimal.
Solutions proposed in this article include getting rid of the word "cancer" and using terms like "indolent lesions of epithelial origin"--this may alter behavior both on side of the medical team and the patient. Of course, one cannot just declare a new system into existence.
The medical system must provide safeguards that truly dangerous cancers will be diagnosed and treated appropriately. Even some cases of DCIS can recur as invasive cancer, which can then potentially spread and lead to death. This means more research on prognostic tests – a huge ongoing needed in oncology that involves molecular/biological assays and large follow-up studies to validate these tests. We have a long way to go on redefining cancer, but perhaps starting with labeling changes is at least a symbolic start – but hopefully will be followed by both a scientific and cultural shift.RELATED POSTS
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