BY KATHY LATOUR | FEBRUARY 28, 2013
I loved it when breast surgeon and breast cancer advocate Susan Love said she would rather talk about death than sex. I think it puts in perspective how very difficult it is to discuss something that has always been seen as mystical, and yet, as we all know, people who can talk about it have the best sex lives.
I say "people" because single people get cancer too. So, whether single or married or divorced or whatever, cancer changes our perspective on sex. When I wrote my book "The Breast Cancer Companion," I wanted to include sex because it had been an issue in my marriage and I knew it would be for other women.
What surprised me was the wide variation of responses that women and men gave me when I asked about sex. One woman said she and her husband had become so close during the cancer experience that she was having trouble relating to him sexually, and another said she refused to talk about sex because they never had. It had been the one thing in their marriage that worked without words or communication of any kind and now the deal had changed and she was angry.
For men who get cancer the issues can be the same or different. Some men see it as their place to take charge in the bedroom, and if they feel diminished physically because they don't feel well or they have had to let their wives take care of them, they may have trouble finding their role again.
The bottom line is that cancer changes us, mentally, physically, emotionally, spiritually and if you look at that list, each of those facets is part of sex. It also changes our partners who will, perhaps, see us differently than they ever have. How these changes play out in sex will depend on the two people who have gone through the experience and their commitment to the relationship and each other.
For single people it's a whole different ball game as they try to find a life partner with the added chapters of their life that cancer brings. Fertility may be affected by cancer, and there is always the question, "So when do I tell him or her that I have had cancer."
Talk to people who have been there, get help to find your way, every piece of advice comes from a core message: communicate. Communicate with your partner, your potential partners, yourself.
We have done a number of stories about sex in CURE. Go to www.curetoday.com and put sex in the search field and have fun.RELATED POSTS
BY JON GARINN | FEBRUARY 22, 2013
In our winter 2011 issue, we wrote about "financial toxicity" being an unwelcome side effect of cancer care, noting that even insured patients are increasingly going bankrupt because of soaring out-of-pocket expenses. It seems like nearly every day we hear another terrible tale of someone's financial hardship, and many of our readers have asked us to dedicate more coverage to the cost of cancer and practical steps patients can take to cope with it. Look for a special extended report on the subject with our fall issue.
In the meantime, don't miss a word of Steven Brill's brilliant cover story in the current issue of Time magazine. Consider it a staff recommendation. In fact, it should be required reading for every American.
Why? Because knowledge is power.
To say it's an eye-opener is an understatement. Be warned: The piece is hefty--weighing in at more than 20,000 words--so you might want to take it in manageable doses. But do take it. Think about it. Discuss it. Because until we make a brutally honest assessment of why the cost of health care is so high, we won't be able to do anything about it.
Brill begins with a fairly simple premise: The problem with health care in America isn't so much about who should pay for it but how much it costs. He begins by looking at hospitals, starting with nonprofit institutions, where profits are huge and patients get gouged. Astronomical markups on everything from high-tech medical devices to humble gauze pads are simply beyond comprehension. Insurance companies and Medicare are best positioned to bargain with healthcare providers so that patients don't pay these insane prices, but pity the poor souls who are uninsured or underinsured. By telling the stories of several patients and examining their medical bills, Brill spotlights everything that is wrong with our healthcare economy .
Surprisingly, Medicare withstands the scrutiny. In fact, it works so well that Brill makes the case for lowering the enrollment age to include near-retirees. I think the case could be made to either open up the program for anyone who wants to buy into it or simply turn it into universal health care. As Slate's Matthew Yglesias observes, "Taxes would be higher, but overall health care spending would be much lower since Universal Medicare could push the unit cost of services way down."
In addition to expanding Medicare coverage, Brill also offers a number of other solutions, such as reforming medical malpractice, taxing operating profits and imposing price controls--all good ideas, but highly unlikely. And until more Americans get involved and recognize the core problem, which Brill describes as "lopsided pricing and outsize profits in a market that doesn't work," nothing will get fixed. While Obamacare has "changed the rules related to who pays for what...we haven't done much to change the prices we pay," he concludes.
A few take-aways:
You will never look at a hospital bill the same way again. They've become so indecipherable with codes and acronyms that an entire cottage industry has sprung up around helping patients understand what they're being billed for.
If you're paying out-of-pocket costs for your treatment, negotiate with your doctor. Ask questions and discuss specific treatment and testing options with your doctor. Less expensive options may be available that can prevent you from hitting your insurance limit.
Don't be afraid to barter over the bill. Most billing representatives won't volunteer the information, but nearly everything is negotiable. Ask about charity programs, affordable payment plans, self-pay discounts and financial assistance. Do it before the bill gets turned over to a collection agency, when you still have room to negotiate.
When all else fails, turn to a billing advocate or a claims assistance professional. Among other things, these independent contractors can review medical bills and determine proper payment, negotiate with providers, resolve claim problems and audit fees and charges.RELATED POSTS
BY ELIZABETH WHITTINGTON | FEBRUARY 20, 2013
Robin Roberts, who was one of the most influential people in cancer last year, returns to "Good Morning America" today after recovering from MDS and a bone marrow transplantation.
ABC has documented her treatment and recovery from when she made her announcement to returning to the morning show, saying, "I've been waiting 174 days to say this: Good Morning, America."
Call it the Katie Couric effect, but Robin Roberts' announcement of her cancer diagnosis on GMA on June 11 had thousands of people Googling "MDS" and eventually registering to be a bone marrow donor with the non-profit organization, Be the Match.
The disease, which was most likely due to breast cancer treatment she received in 2007, is a rare blood disorder called myelodysplastic syndromes that affects the blood cells in the bone marrow. If left untreated, it can develop into acute myelogenous leukemia.
While only about 30 percent of patients who require a stem cell transplant have a related donor, Roberts found a match in her sister Sally-Ann. Knowing that most patients aren't as fortunate, Roberts encouraged viewers to join the Be the Match registry. (You can view that video here.)
In the 24 hours after announcing her diagnosis this past summer, potential donor applications on the Be the Match website increased 1000 percent.
In addition, friends of Roberts created a plastic wristband that contains her initials RRR and the words "Light Love Power Presence" to help raise awareness and funds for the organization.
Roberts, and essentially GMA, have documented her journey through the 100-day post-transplantation milestone, which she celebrated on Dec. 29. (Several complications can arise in the three months following the procedure, including graft-versus-host disease). She tweeted "All will be serene in 2013," a motto she credits to her sister, Dorothy.
She has received the all-clear from her doctors after her blood tests came back clean earlier this month. Roberts will be easing back into the anchor chair, but is set for an interview with First Lady Michelle Obama soon and will be at the Oscars this Sunday. But it's the impact that she's had raising awareness of secondary cancers and MDS, her encouragement of Be the Match's donor drive during her treatment and recovery, and giving attitude throughout that will most assuredly result in lives saved.
Welcome back, Robin.RELATED POSTS
BY ELIZABETH WHITTINGTON | FEBRUARY 14, 2013
There are several upcoming cancer meetings in the next few months that we thought our readers may be interested in. It's a great way to meet other patients and survivors, as well as thought leaders in advocacy, oncology practice and research, and practical matters, such as careers, finance, and sexuality.
Here are a few upcoming cancer conferences you may be interested in:
1. C4YW, co-sponsored by Living Beyond Breast Cancer and Young Survival Coalition, is being held in Seattle, Feb. 22-24. The Young Women Affected by Breast Cancer conference will feature talks and discussions on topics such as sex, fertility, careers, treatment, prevention and . Travel grant deadline is tomorrow, Feb. 15. While you may not be able to make this year's conference, it's never too early to start thinking about next year.
2. National Women's Survivors Conference will be held at the Gaylord Opryland Resort in Nashville, Tenn. Aug. 22-24. This conference will feature discussions on legal rights, high-risk cancers, sexuality, work-life balance, nutrition and lymphedema. CURE's Editor-at-Large, Kathy LaTour, will be giving a talk on fear of recurrence. The meeting will feature events, including the Celebrate Survivors: March Down Broadway 5K, a fashion show, pajama party and tours of Nashville.
3. Stupid Cancer's presents its 5th Annual OMG! Cancer Summit for Young Adults, an oncology conference and social networking scene rolled into one. The young adult survivor organization, formerly known as I'm Too Young for This, will host the conference in Las Vegas on April 25-28. The events labels itself as "one of the largest gatherings of young adult patients, survivors, caregivers, professionals and advocates in the world. The event inspires thousands to get organized, build community and unite as one to drive change." The speaker list is long and filled with well-known advocates and experts, while the session topics encompass nearly every aspect of young adult cancer, including insurance, complimentary medicine, fertility, sexuality, survivor guilt and pain management. Just received an email that if you mention discount code (OMG2013CURE), you can score a $10 discount off the registration fee.
4. Can't Stomach Cancer's Third Annual Stomach Cancer Symposium will be April 20 in Hollywood, Fla. This free conference will feature experts in the field of gastric cancer and will offer participants the chance to ask questions. Those who can't attend in person can view a live webinar, as well as ask questions in real time. You can also view the flyer here.
5. The LUNGevity Hope Summit will take place in Arlington, Va. on May 3-5. The conference is for lung cancer survivors and travel grants are available. Topics included in the meeting include research and treatment, re-entering the work force, diet and exercise, with an opportunity to connect with other survivors and thought leaders. Sounds like this is a sought-after conference as there is a possibility of a wait list, so if you're interested, register early!
Let me know if there are any conferences or seminars you're planning on attending in the near future and we'll add them to the list. We'll share the knowledge!
[Added registration update and discount for OMG! Summit on Feb. 14, 2013 at 4:20 p.m.
Added information on the LUNGevity Hope Summit on Feb. 15, 2013 at 7:30 a.m.]
BY SUZANNE LINDLEY | JANUARY 14, 2013
After four whirlwind, fairy tale days in Los Angeles, I'm sitting quietly at home with the view of my horses in front of me and only my thoughts for company. Cancer stayed in the shadows this week as treasured moments were spent with friends and fellow cancer survivors. Together, we traveled to a world where dreams begin and cancer nightmares end. Suzanne Rico opened her magnificent home and shared her amazing family with us, Diana Lomelin transformed our hair and makeup, and Dalia MacPhee dressed us like queens. We floated through the glitz and glamour of the Red Carpet and cheered at the People's Choice Awards. For one incredible day and night, cancer completely disappeared.
Even as cancer took center stage at the fabulous GBK Golden Globes Luxury Gifting Lounge, the focus shifted to creating awareness about liver tumors, of making sure that no one faces a diagnosis like ours alone, and to ensuring that resources and support are available to everyone! It was a gift to let so many see that we truly are living with cancer and not dying from it. I thank Michael Mazzella for opening the door to this great event and to Gavin Kelly and his incredible team for such an amazing opportunity. The ripples of our hope, combined with those we met, will be limitless!
One by one, my friends headed home talking about the wonderful time. Each was cognizant of the reality that awaits. I, too, left behind thoughts of my upcoming scan and the chemo treatment that tomorrow brings. A part of me wishes that I could wind back the clock and relive the magical moments of a cancer free week. I would like to freeze them in time. I'm not excited about treatment tomorrow but I know that life moves forward. As it does, new wonders will be discovered in spite of cancer. Among them, there will be miracles and there will be milestones; there will be hope and, above all else, there will be love...RELATED POSTS
BY ELIZABETH WHITTINGTON | JANUARY 10, 2013
With such an increased awareness about the psychosocial, financial and practical implications that cancer brings, you would think that support would be an easy thing to come by now after a cancer diagnosis.
Unfortunately, when we posed that question to our readers on our Facebook page, it sounded like a lot of individuals were missing the support they needed. Why is that?
You can see the responses we received after we posed this question: Was it hard to find support after your diagnosis? What would have made it easier?
It appears that some of the support needs people have include:
1. A Mentor: Wanting to talk about their diagnosis with someone who has "been there." For a lot of young adults or those with rare cancers, this can be tough. The Internet has been a great help to these patients, but usually the responsibility is on them to locate and find these resources. And if you're wanting face-to-face support, it's even tougher. There are several organizations and websites that can pair you with other patients and survivors, including:
IHadCancer.com: A Facebook of sorts for cancer patients and survivors. You can also filter individuals by ZIP code, if you're wanting that face-to-face time.
Imerman Angels: A Match.com for patients. This non-profit organization put you in touch with a survivor that has a similar diagnosis (and other features, if possible). It's motto is "one-on-one communication." The survivor acts as a coach and mentor for the patient.
What's Next: Another website, this one from the American Cancer Society, aims to connect patients and survivors by sharing stories.
2. Family, friends, coworkers: It's amazing how cancer brings out the best or worst in people. I've heard several stories of how patient's family or friends distance themselves because they don't know what to say or do, or a diagnosis makes them think of their own mortality and they just don't know how to deal with it. On the flipside, some are amazed at the help they receive from acquaintances or coworkers who become their biggest supporters.
3. Information: It's hard to take in all the information thrown at you when you have a cancer diagnosis. For those individuals who credit their medical team for giving them support and information, they rave about them. It's hard to imagine why there isn't a process across the board on what to offer patients diagnosed with cancer. Often it's left up to the facility, individual doctor or medical team.
Vanessa posts: Yes it was. My family was obviously my main support. My oncologist failed to provide me with available resources. I learned what was out there through patients who were undergoing treatment. Without them I would have been lost. I have to say my reconstructive team was awesome!
Kim posts: It was not hard to find/get support after my diagnosis....it was spoon-fed to me and I could not ask for a better team than the one I have Thank you Bend Memorial Clinic and the St. Charles Cancer Center in Bend, Oregon.
For some people, it's not the support at diagnosis that's lacking, though.
Kytiana posts: It wasn't hard finding support, it was harder accepting when you go from being independent to be dependent on people for certain things...that was absolutely hard for me...
Nikki posts: Not do much after diagnosis as after treatment was over...life doesn't go back to normal for us
What would be the ideal situation to offer patients different types of support at diagnosis?RELATED POSTS
BY ELIZABETH WHITTINGTON | JANUARY 9, 2013
In honor of Cervical Cancer Awareness Month, several organizations are sponsoring a tweet chat on the disease and one of its main causes – the human papillomavirus (HPV).
When: Jan. 15, 1 p.m ET
Where: Twitter #cervicalca
The chat is hosted by Montefiore Medical Center (@MontefioreNews), in partnership with the Foundation for Women's Cancer (@GYNCancer) and the American Cancer Society (@americancancer) of New York and New Jersey (@cancerNYNJ).
Gynecological oncologist, Mark Einstein, MD, will be on hand to address prevention, diagnosis and treatment questions.
Other than it being January, it's a timely topic in light of the recent Annual Report to the Nation on the Status of Cancer report coming out yesterday highlighting the dangers of HPV and the importance of vaccination. [Report to the nation on cancer shows mortality drops, HPV-related cancers on the rise" Jan. 7, 2013]
What will you ask?RELATED POSTS
BY ELIZABETH WHITTINGTON | JANUARY 7, 2013
Today, the Annual Report to the Nation on the Status of Cancer was released, again showing cancer deaths continue to decrease overall. That's the good news.
The not-so-good news is some hard-to-treat cancers aren't. Melanoma (men only), liver, pancreatic and uterine cancers have increased in the past decade.
The number of oral cancers associated with human papillomavirus (HPV) is also rising. HPV is most notably known to cause cervical cancer, but lately it has been the cause of the high rate of oral cancers, specifically oropharyngeal cancers. ["Facing the Facts: HPV-Associated Head and Neck Cancers Get a Second Look" June 14, 2012]
In 2011, an analysis from the National Cancer Institute predicted HPV-related oral cancers could significantly increase over the next decade, overtaking HPV-related cervical cancer. ["Men May Be at Greater Risk Than Women for Developing HPV-Related Cancers" June 8, 2011].
The Annual Report to the Nation on the Status of Cancer is co-authored by researchers from the American Cancer Society, the Centers for Disease Control and Prevention, the National Cancer Institute and the North American Association of Central Cancer Registries. The full report will be available online and published in the Journal of the National Cancer Institute.
The report also features a special section on HPV, including HPV-associated cancers vaccination factoids. The NCI reports:
...in 2010, fewer than half (48.7 percent) of girls ages 13 through 17 had received at least one dose of the HPV vaccine, and only 32 percent had received all three recommended doses. Vaccination series completion rates were generally lower among certain sub-populations, including girls living in the South, those living below the poverty level, and among Hispanics. The national three-dose coverage estimate among girls ages 13 through 17 in 2010 falls well short of the U.S. Government's Healthy People 2020 target of 80 percent for three-dose coverage among girls ages 13 through 15...
The HPV vaccine is also approved for young boys. The CDC predicts that about 7,000 HPV-associated cancers in the U.S. may be prevented by vaccine each year in men, including oropharyngeal cancers.
Cancer prevention methods that appear so easy on paper (reduce tobacco, decrease obesity, vaccinate against cancer-associated viruses), unfortunately doesn't play out as quickly in real life. Here's hoping that we figure it out pretty soon.RELATED POSTS
BY KATHY LATOUR | NOVEMBER 13, 2012
Last Friday night I went to one of those fundraisers we all attend to support a cause we believe in. This one is a free clinic that happens to be in the basement of my church.
Agape Medical Clinic has been at Grace United Methodist since 1983 when a young doctor named Barbara Stark Baxter, MD, asked about physician volunteer opportunities in Dallas. She was connected with the church, which served an inner city community, and they offered her a closet in the basement until they could raise funds for something better. She began seeing patients that Saturday.
What were mostly back to school vaccines and coughs seen in a closet, grew into true medical care given in a five exam-room clinic in the basement that is now open 4 and a half days a week and has a regular case load and is operated by volunteer doctors and nurses.
Today, the line of those waiting to be seen begins well before daylight on Saturdays and because of Medicaid cuts in Texas, the clinic has never been more needed. This year Agape will expand into an additional 1,000 square feet of space in the basement which will allow them more exam rooms and the ability to see an estimated 7,500 patients – all free of charge. But this blog is not about politics or churches reaching into the community, it's about something Dr. Baxter said at the event on Friday night that made it all happen. Somoething simple that has change people's lives.
When she was addressing the crowd of supporters, she told the story of her medical school professor who worked in a free clinic and how working with him and seeing his passion had stayed with her throughout her residency to the day when she was able to volunteer her skills in the community.
By seeing what he was doing, she was changed.
The message here is simple. Get people involved in what you are doing to make the world a better place. The Agape Medical Clinic now offers mammograms for women who can't afford them, and part of this year's expansion will be a well woman clinic that will provide the kind of screening women in underserved communities don't get.
Find a way to volunteer at a program that makes someone's life easier. Pay it forward.RELATED POSTS
BY ELIZABETH WHITTINGTON | NOVEMBER 7, 2012
On Nov. 15, the American Cancer Society will sponsor its 37th call to action to encourage people to quit tobacco during the Great American Smokeout.
I grew up with both parents smoking. I saw their struggles with quitting, but eventually both of them were successful. From them, I learned a life lesson of never giving up, even if it takes you several tries. In fact, it takes about four tries for the average smoker to kick the habit.
In a recent Gallup Poll, Americans appear to be lighting up less than ever, with only 1 percent smoking a pack a day now. In addition to public awareness campaigns, smoking bans across the U.S. and access to cessation tools has helped lower smoking rates.
The ACS provides tools and tips to help tobacco users create a plan to quit smoking on its website "Guide to Quitting Smoking."
Here are a few other resources:
> CURE's "How Can I Quit Smoking?"
> National Cancer Institute's "Where To Get Help When You Decide To Quit Smoking"
For many patients, quitting smoking after a cancer diagnosis can help with treatment outcomes and quality of life, so it's never too late. And with that ... why wait until Nov. 15? Start today.
Will you be participating in the Great American Smokeout?RELATED POSTS