BY GUEST BLOGGER | JULY 11, 2014
ATTN: Young adult cancer patients or survivors: Here's a chance to have your cancer story featured on curemagazine.com.
Cancer is popular in storytelling today. Movies, such as "The Fault in Our Stars," "50/50," "A Walk to Remember" and more, have been sharing the cancer journeys of young people, particularly love stories during treatment.
Is your story similar to a movie you've seen recently? How has it been different than the media's portrayal of cancer in young adult relationships? We want to share your story and opinion about how the entertainment industry gets cancer – both right and wrong.
Send an email to email@example.com with the following three sections:
1) Story: A brief description of your cancer journey. When did you receive your diagnosis? Are you in remission? If yes, for how long? What physical and emotional struggles are you facing or have faced?
2) Movie: Pick a movie that is similar to your story. How do you relate to it?
3) Entertainment View: What's your opinion of how cancer is portrayed in storytelling today? Do writers need to do more research? Is it portrayed correctly? If it's not convincing, do you find it insulting to cancer patients and survivors?
Send an email to Jennifer.Nassar@curemagazine.com, by 12 p.m. Central July 18. Please include your name, city, cancer type, phone number and email. If chosen, Jennifer will contact you to schedule an interview.RELATED POSTS
BY GUEST BLOGGER | JUNE 26, 2014
CURE's editor-at-large Kathy LaTour and I met up cancer survivors Diana DeVoe and Debbie Fitzer in Dallas to see "The Fault in Our Stars," based on the book by John Green.
Diana, 44, received a diagnosis of alveolar rhabdomyosarcoma at 18 in 1988. Debbie, 53, received a diagnosis of triple-negative breast cancer about nine years ago at 44. Diana's story was featured in the Fall 2012 issue of CURE. You can read more here.
During the movie, we laughed, and cried and cried. A word of advice for women: Don't wear eye make-up; you will leave the theater with raccoon eyes. Two hours and a few tissues later, we sat down for a causal discussion. During this, I noticed a very coincidental pattern that related Diana's story to the movie trailer.
TRAILER: "This is the truth...doctor's appointments..."
DIANA: She spent her 19th birthday in surgery to have two fingers removed on her left hand. After surgery, she underwent radiation and two years of chemotherapy.
TRAILER: "And worst of all, support groups."
DIANA: There were no support groups at the time of her diagnosis. She wouldn't have attended if there were any. "I didn't talk about cancer," she says.
TRAILER: "I'm in love with you." "I'm a grenade."
DIANA: She often pushed people away. "I didn't get into relationships," she says.
TRAILER: "We are a hot mess." (making love scene when Hazel struggles with her cannula )
DIANA: Being intimate was very hard for her when she wore a wig. "I would have to take it off, and then turn off the lights," she says.
While we agreed it was a beautiful story, the cancer portrayal wasn't convincing. "They didn't seem sick," Debbie says. "She (Hazel) looked way too healthy."
"When I heard that (thyroid cancer), I thought she would be pale, thin and incredibly frail," she says.
When Augustus' cancer, osteosarcoma, returned and spread just about everywhere, he still looked like his "handsome" self, we all agreed.
There was one side effect to Augustus' chemotherapy that was very realistic to Diana.
WARNING: Spoiler alert, okay?
Augustus alerts Hazel to meet him at a gas station where he is parked. She gets there to find him crying and that he has a serious infection from chemo.
"That was gut-wrenching for me," says Diana, who once had an infection from chemo with a temperature of 105 and was hospitalized.
Debbie saw a relation to the financial struggles that can come with cancer.
After a star-struck Hazel receives an email from her favorite author, she approaches her mom about taking a trip to Amsterdam to meet him. Her response, "We don't have the money."
Debbie blamed financial stress for her cancer after she received a diagnosis. "I would constantly ask myself 'Can I work?', 'Can I pay my bills?'" she says.
Diana and Debbie both agreed the discussion of cancer and death in the movie is a reflection of how more "comfortable" society is in acknowledging cancer.
When Debbie was little, her grandmother died from breast cancer. She said she didn't see much of how her grandmother's cancer affected her family because no one talked about it.
"Back then, parents didn't want kids around cancer," she says. "But today, we're more open."
One subject all of us kept going back to was love. Kathy thought the love "was too good to be true." Yes, the love in the movie is "amazing." But can we expect every movie about a cancer patient to be included in a love story? Is this becoming to cliché in the storytelling industry? My question to you: Is it right to use cancer to enhance a love story?
Jennifer Nassar is a graduate student at the University of North Texas. She is a summer intern for CURE magazine.RELATED POSTS
BY GUEST BLOGGER | MAY 14, 2014
A trip to Las Vegas does not typically include discussions on career rights, fertility options and sexual dilemmas. It doesn't necessarily mean you will see a comedic speaker, who is also a published author with a PhD, talk of his personal struggles and major accomplishments. One might not expect to meet the CEO of an organization who has spent so much of his time and energy helping others and changing lives, and now changing mine. I can also say that one might not plan to share a connection with over 500 people one has never met before.
But I did.
Different people from all over the country, even from different countries, were joined together because of one commonality: Cancer.
At my first Stupid Cancer event, OMG2014, I was surrounded by fellow survivors. It didn't matter what people looked like, if they had hair or not or if they were in a wheelchair. It didn't matter what people needed to talk about, or what emotions they needed to express, no one was there to judge and everyone was there to support one another. I learned of outlets and resources that will help me and so many others in the future.
Because of cancer, and the chemotherapy treatments I underwent, I have long-term side affects I deal with every day. Now I know I have someone to turn to and help when talking to my employers and co-workers about my disability. I met someone who can coach me in life and guide me in developing a plan for my future. Cancer will not hold me back, and I will live a better life.
After a session just for women, I also learned I am not alone in my sexual experiences, struggles and realities, and even though I may have to face these obstacles, it is OK. I am unique and beautiful. This meeting opened my eyes to these things, and I am ever grateful.
While some serious issues were discussed, a four-day trip to Vegas did not go without some relaxation and letting loose. I was able to bond with my roommates, even though we had never met before. We instantly felt as if we had been lifelong friends who were reuniting. There were others I formed such strong bonds with during the various event during the weekend. I want to keep in touch with them all, and I can't wait to see them again.
Everyone I met at the conference helped me to realize it is OK to struggle and it is OK to ask for help. We can overcome anything. Cancer is seen as such a negative thing, as if nothing good can come from it. I would disagree, because during the OMG! Summit, cancer brought us all together. I have come away with meaningful relationships, resources that will support me in the future, and memories that I will treasure forever.
Lindsay Braunwalder, 24, is a 14-year survivor of medulloblastoma and currently lives in Eagle, Idaho.RELATED POSTS
BY GUEST BLOGGER | MAY 6, 2014
Raise your hand if you're a cancer survivor. If you're reading this, you probably have an intimate relationship with the green-eyed monster, whether it's you or your loved one.
During my first breast cancer diagnosis, I focused on the light at the end of the tunnel. I remember counting down weeks for recovering from surgery or chemotherapy, thinking it was the number of weeks until I got my old life back.
You veterans are smiling right now; because once you've had cancer, your "old life" doesn't exist anymore. But hey, I was only 29 – I didn't know that yet!
Now I am a 34-year old wife and mom living with metastatic breast cancer. I receive my day-to-day treatment in Dallas where I live, but I travel to MD Anderson in Houston every three months for a PET scan and reevaluation. We manage to make a family event of our trips to Houston, enjoying two nights in a hotel and exploring new restaurants. This trip, Chris and I left our son with his grandparents so we could also celebrate our five-year wedding anniversary with a nice Galveston hotel and a fancy dinner (without a nacho-throwing toddler!)
In the two years since I was deemed incurable, I have tried to focus on living my life rather than the fear of it being taken away. Most days two-year-old Henry keeps me too busy to have idle hands and mind, but there are times even my "Pollyanna" mom can't help me ignore those dark thoughts.
This would be one of those times.
Today the fun is over. We have checked out of our nice hotel, and are on our way to the cancer center. In a few hours, I will receive the verdict of yesterday's scan. It all boils down to one simple, yet very complicated question: IS THE MEDICINE WORKING?
My last scan said NO. So in the five months since, I started a new drug regimen, had a laparoscopic hysterectomy, had a brief hospital stay with pneumonia (supposedly not related to my cancer), and tweaked my dosage on multiple occasions to try and keep the crazy new side effects at bay. We also celebrated Henry's second birthday, my 34th birthday, traveled to Pensacola and Phoenix, and lived through a complete kitchen renovation. HA!
When I write it all out...I am pretty much painting the picture of a crazy person! But remember what I said about idle hands and mind? I do like to keep busy.
Last night as I lay in bed, I kept running through my checklist of new aches, pains and irritations and guessing whether they are attributed to the cancer, the medicine or the germs Henry brings home from Mother's Day Out. My itchy hands and annoying mouth sores are side effects, but is my cough from last month's cold or swollen lymph nodes? Is my trouble sleeping a side effect or just a touch of anxiety? What about my recurring headache? Medicine or cancer in my skull?
If it's not a good scan, we will switch medicines again, and I will get a whole new list of side effects to manage. I will also cross one more off the very finite list of drugs available for my kind of cancer. At last count, I was one drug away from the chemo chair. (And darn it, my summer hair highlights look great!) But Pollyanna reminds me of what my doctors all say - new drugs are coming down the pipeline.
If it is a good scan, I get to breathe a little easier this summer, at least until I'm back here for my next round of scanxiety.
I approach today cautiously optimistic. I am hopeful for good news, but prepare myself for dealing with whatever may come. We'll spend the sobering four-hour drive back to Dallas wrapping our heads around it all and remembering to focus on how truly lucky we are, despite our challenges. Because there is an awesome little guy at home, impatiently waiting to see us.
And like me, you'll just have to wait for the results. Here we go...
Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.RELATED POSTS
BY GUEST BLOGGER | APRIL 30, 2014
I sit in a hotel conference room with 45 or so men, aged 20 to 50 or so. Some are in treatment right now, a few will be for the rest of their lives, and then there are a handful who were diagnosed a few decades ago, like me. Among the diverse diagnoses are men with testicular cancer, lymphomas, brain cancers, sarcomas and leukemias. And we seem to hail from all walks of life, an ex-steel worker with broad shoulders occupies a seat a few feet away from a doctor, there's an elite athlete who works for a tech startup next to a guy who works in a bowling alley. There's even a Hollywood actor in the mix. For the most part, we don't look ill and this could be a support group for anything. But it isn't anything, and this is an unusual meeting. I write this with some confidence after attending over 300 cancer-related conferences in the past 14 years.
I've never sat in a room with this many young adults with cancer in one place, especially not men. And we are vocal. With virtually no prompting, we talk about body image issues, bouts with depression, anorexia and post-traumatic stress, when to "come out" to potential romantic or sexual partners, and applying the resilience found in cancer to our occupations. While a few of the comments are superficial, for the most part these men have come to work and compared with other early support groups I've witnessed as a young adult survivor/psychologist, the ratio of substance to the superficial is weighted heavily on substance.
Perhaps equally surprising is the complete lack of machismo in the room. There's no posturing. I used to supervise group therapy run by psychiatry residents, and I was always grateful to have people who had been in alcoholics anonymous in the groups because they tend to cut through the superficial and focus on the issues quickly. This is what the room feels like.
"I've wrestled with anorexia and body image issues," one guy says. Another talks about how the disease obliterated his medical training. Others talk about how they'd handicapped themselves, thought of themselves as flawed and unnecessarily dampened their own ambitions or romantic expectations.
The group was one of many offerings at this past weekend's OMG! Conference sponsored by Stupid Cancer, a non-profit dedicated to young adults (women and men) diagnosed between ages 20 and 40. Over 450 young adults from around the country (and a few other countries) attended.
When I was diagnosed, I knew one other guy, my age, who'd had cancer. He was terrific, but we spoke by phone only twice during my first year of treatment. The waiting rooms and chemotherapy suites where I was treated in Hartford was a 60s and up crowd. It was like dropping down in a creaky elevator shaft into a dangerous coalmine and only speaking to one other guy who had been down there.
Even though I was diagnosed more than 25 years ago, the treatment environments for many, if not most young survivors, hasn't changed much. There are only a few centers nationwide that have young adult clinics. Perhaps this is why doctors are still not telling enough patients about fertility options, not referring us to clinicians who can address the body image and career fears we face, nor doing enough to help us navigate the long-term effects.
So, young adult survivors are trying to step up and fill those gaps. There were group sessions on genomics, chemical exposure, advocacy, meditation, managing anger, healthcare reform, panels for specific disease, nutrition and living with metastatic disease, among others. And perhaps more important, there was fun: scavenger hunts, night club dancing, bowling night and pool parties.
Perhaps the most remarkable aspect of the conference to me, having been active in the cancer community for 15 years or so, are the people who dedicate time and energy to this cause. Many of the activists are people who suffered when they were patients from a lack of access to other young survivors who might have helped them.
Amber Vance, a young woman with Hodgkin's disease was never informed about fertility options when she was diagnosed and now dedicates significant time to getting young survivors together for meet-ups.
Alli Ward, a main organizer of the conference, has lived through multiple relapses and gave a "Chronic Cancer" break-out session focused on living with metastatic disease. Jonny Imerman, a testicular cancer survivor, who has created an elaborate, national peer-to-peer mentorship program for young survivors based out of Chicago. And there were many more. There are camps, river trips, peer mentoring programs, fertility foundations, disease specific foundations and nutrition experts.
I did a talk at the conference this past Sunday and that evening, a cascade of social media followed, there were 30 new Facebook friends, a gaggle of new Twitter followers and photographs dancing across the electronic ether.
The cancer coalmine is still terrible. But going down now, with a lifeline to these volunteers and organized cancer warriors, would have been better.
Dan Shapiro is a psychologist and chair of the Humanities Department at the Penn State College of Medicine. He's written three books including, Mom's Marijuana (about his cancer experience) and "And In Health: A guide for couples facing cancer together." His writings about the patient experience and physician-patient communication have appeared in the New England Journal of Medicine, the New York Times, JAMA and he's been featured on National Public Radio's All Things Considered and Science Friday, among others.RELATED POSTS
BY GUEST BLOGGER | MARCH 26, 2014
At age 26, I was on my own, self-sufficient, secure and independent. I was already a few years into building my career as an adolescent therapist; a job that well suited me. I had my own apartment, and was about to move in with my boyfriend of several years. I took care of myself physically and emotionally. Life was pretty perfect, until the routine trip to the gynecologist that wound up saving my life.
When you hear the words, "you have cancer," there is truly no way to be prepared to absorb all that comes with it. My now unstable life became filled with terms like prognosis, oncologist, surgery, treatment and chemo. My doctors overwhelmed me with choices about what course of action to take. Suddenly, my secure sense of self became unraveled and presented me with a new identity – cancer patient. My oncologists' (who are wonderful) main goal was to rid me of cancer as quickly as possible. The recommended course of action when diagnosed with ovarian cancer is to have a complete hysterectomy.
Being only 26, the idea of parenthood wasn't even on my radar yet. But suddenly I felt forced to think about my fertility and my options. I was then hit with a double whammy: the idea that my cancer might render me infertile. I stressed to my doctors that while clearly the primary focus is to rid myself of cancer; I wanted them to make every attempt at preserving my fertility.
Over the course of seven months, I endured three surgeries and six rounds of chemotherapy. The treatment took my hair, put my body in menopause, and left me feeling twice my age. Unfortunately, the doctors weren't able to save my ovaries. I recovered and slowly acclimated to my new normal – survivor.
As I moved further away from my date of diagnosis, I became more accepting of my life as a survivor and it became less scary to invest in the idea of leading a longer, healthy life. My then boyfriend and I were married in 2005, and after several years were comfortable exploring the idea of having a family. I had come to terms with the loss of my fertility and began exploring my options to become a parent. I reached out to my oncologist and my supports in the cancer community about surrogacy and adoption.
I feared that with adoption, I might be discriminated against due to my cancer history and therefore it felt safer to me to explore the world of surrogacy. I also liked the idea that though our child might not be genetically mine; they could still be connected to my husband. As we researched, it quickly became apparent that there was a lack of information about surrogacy.
We met with a few agencies and decided on Circle Surrogacy in guiding us through this process. We signed our contract with them and moved on to the matching process. Within four months of meeting our surrogate, we were expecting our son. The entire experience felt "right," as I believe this is the way we were intended to become a family. Our surrogate is truly an amazing woman, who we felt connected to from the start. Going into the experience, I had some anxiety about feeling envious or jealousy toward our surrogate as she was able to bring our child into this world; something that I couldn't do. I remember feeling surprised that I didn't feel this way toward her at all. As we were awaiting the arrival of our son, I felt humbled and grateful that she was doing this for us.
The day our son was born was truly the most amazing day of my life. It was as if all the struggle, loss and upset caused by cancer had been undone, or perhaps more so, solidified the reason for the journey.
As I reflected on the experience, I remained troubled by the idea that there was little information in the cancer community about surrogacy. I began exploring ways to get information about this amazing way to become a parent after cancer to survivors. I am fortunate to have made this a career goal and work now as an outreach coordinator to educate others about surrogacy.
Though being a cancer survivor is membership to a club I never wanted; I wouldn't say that cancer was the worst thing that happened to me. How could that be when it has brought so much to my life both personally and professionally?
Jen Rachman is a social worker from New York City. She is a 10-year ovarian cancer survivor having been diagnosed at age 26 and a parent through surrogacy. She is currently working as an outreach coordinator for Circle Surrogacy to educate survivors about this family building option after cancer.RELATED POSTS
BY GUEST BLOGGER | MARCH 25, 2014
Life has changed a lot for me since nominating my nurse, Tish Mullen, who became a finalist in the first Extraordinary Healer Award contest in 2007. From my essay, "My Own Fairy Godmother Nurse":
"...I was extremely sick and in the hospital for most of the second semester of my senior year of high school. Well, when prom came around, it was really touch-and-go whether I would be in the hospital or not. Because of Tish, I was not in the hospital, got to attend prom, stayed out late, and all of this without my ever-present I.V. backpack. This was quite a feat!
She came over right before I got ready and removed my I.V. and I.V. backpack as part of getting ready (sort of a substitute for doing my hair since there was none). I put on my flowing royal blue gown and was whisked off as a princess for the evening--putting the fact that I was going into an intense life-threatening stem cell transplant in a week in the back of my mind.
At about 4 in the morning, I arrived home from the after-festivities and called Tish, as I had been instructed to do. She came over and safely put the I.V. back in like it had never left.
This is a small example of the type of person Tish is--caring, selfless, and trying to help pediatric oncology patients with all of her resources..."
After the Extraordinary Healer contest, Tish did another overly generous thing for me. She transformed my mother's wedding dress into a custom dress for my wedding! This year, I am celebrating my six-year anniversary with Gabe Lozano, the man I took as my date to that awards ceremony in 2007.
I am also very excited to celebrate 10 years this May with no evidence of cancer. I'm still deciding how I may want to honor this milestone.
Last year, I completed a dual master's program in art therapy and counseling. I achieved my goal of becoming an art therapist, inspired by a woman who was my therapist during my cancer treatment. It was a long road as I had been in treatment on and off for so many years.
Recently, I began working in a residential facility for children and teens dealing with emotional and behavioral issues. The children inspire me so much every day, and I feel blessed to be there.
Combining my love for art therapy with helping others with cancer has led me to the opportunity of facilitating workshops for adults and children with cancer using art as the means of expression. I'm now helping plan a local young adult conference for people living with cancer this summer and will lead a session on art therapy.
I have continued to do inspirational speaking, which has taken me around the country and even to Europe. I have enjoyed meeting amazing people through all these experiences.
Although I still deal with many long-term side effects, I make the most of it, as I'd rather deal with them than the alternative. I'm even challenging myself to train with a program called Cancer to 5K to see how much I can push my body. It seems that if I'm busy with life, then I don't have much time to think about the lingering side effects.
As I reflect back on my experiences with CURE's Extraordinary Healer contest, getting the chance to honor such an amazing nurse who did so much for me has definitely been a highlight in my journey. I continue to see Tish occasionally, and she continues making the lives of children with cancer better and brighter. I hope to be more like her!
Rachel Lozano is an art therapist, artist and inspirational speaker. She is a three-time young adult survivor of Askin's tumor. Statistically, she had a 0 percent chance of survival the third time, but in May will celebrate 10 years of no sign of cancer. Feel free to contact her through her Facebook page, Rachel Lozano: Inspirational Speaker.
Editor's note: Nominate your nurse for CURE's 2014 Extraordinary Healer Award at curemagazine.com/healeraward. Deadline March 28, 2014.RELATED POSTS
BY GUEST BLOGGER | AUGUST 19, 2013
Words cannot describe how emotional I am that my internship at CUREis at an end. But hold on, this isn't a farewell blog.
Yes, I will be leaving to start graduate school at the University of North Texas where I will be pursuing a Masters in journalism. No, I'm not done with CURE; at least that's what I hope.
Since my full-time role is up, I would like to share with you a little about what I've learned the past 10 weeks.
I definitely think it's safe to say that my knowledge of cancer has gone up just a tad. I have more of an idea of what cancer is now than when I started at CURE.
One important thing I learned is that cancer doesn't have rules. It's a free game. Anything can happen to anyone at anytime for no apparent reason. Also, if your race, age or other characteristic gives you a low risk of cancer, it doesn't necessarily mean you're immune to it; something important I learned from speaking with Lindsay Giannobile.
Now, I'll talk about a few of the interesting projects I worked on at my time here. Some were very interesting, and even a bit concerning.
One significant project I worked on was the patient guide on metastatic breast cancer due out later this year. Another subject I found eye-opening was about how infertility is a side effect of chemotherapy or radiation therapy. One of my final journalism projects during my undergrad study at Ole Miss was on a story I did of a couple I went to church with that did four in vitro fertilization attempts before they were able to conceive. Before that project, I didn't realize what a hardship it was for women unable to get pregnant naturally. I can only imagine what that must be like for women undergoing cancer treatment, something I've learned since I've been here.
Oh, and one of my favorite assignments was on sexual dysfunction, a side effect of prostate cancer treatment. This will be featured in a prostate cancer article coming up later this year. I read about everything from erections to penis pumps. Yes, I know this is very common in prostate cancer patients and needs to be discussed, but yikes! My mom called me that day and asked how work went. I told her, "I read way too much about the penis."
Then there were those touching stories; stories about caregivers, how the little things made the biggest difference, determination and acceptance. It was those stories that encouraged me to look for hope in negative situations.
The list goes on and on.
Now for the CURE team. They are some of the smartest, funniest, most determined people I've ever had the pleasure of working with. For the first time in my life, I can honestly say that I like everyone I work with. Leaving them is definitely the hardest part of ending my internship.
I'm hoping after I'm done with school, I will continue in the path of health and science; whether it is in writing, public relations or marketing.
I still have a lot to learn and a lot to say, so it's safe to say that you will be seeing me around. Goodbye...but not really.RELATED POSTS
BY GUEST BLOGGER | AUGUST 13, 2013
Too young to date, too young to wear make-up, too young to dress like that, too young to get married, too young to see an R-rated movie; any of those ring a bell? Now let's say you were told you were too young for cancer.
Lindsay Giannobile says you're never too young for anything in the world of cancer; anything is possible. She is proof of that. Her long road to becoming a mom with metastatic breast cancer wasn't her only struggle with cancer. In fact, she had struggles even before her initial diagnosis.
In 2009, after completing a half marathon, Lindsay discovered a lump in her breast during a self-exam. "It was exactly what they say breast cancer feels like; a small hard rock," she says.
Lindsay immediately went to get it looked at, and a "quick ultrasound" was performed. The doctor told her it was nothing and, at 27, she was too young and active for breast cancer.
About 5 percent of breast cancers are diagnosed in women younger than 40, but just because something is rare, doesn't mean it's impossible.
Lindsay was told to come back if anything changes. She wasn't satisfied, but kept an eye on it.
Four months later, Lindsay discovers another lump in the same breast, and went back to the same facility to be examined again. She told the doctor, "I don't feel right about this."
Again, only an ultrasound was performed. No mammogram, no biopsy.
"They literally told me 'Lindsay, you can't keep coming back here. You're only 27, this isn't cancer. It's nothing to worry about'," Lindsay says. They told her to come back in a year if the lumps were still there.
"I felt like I did everything I could do, since I had the lumps checked out twice in a few months. I thought 'If a doctor is telling me nothing, clearly it's nothing and I'm overreacting.' At the time, I didn't think to go get a second opinion, and I really wish I had," she says.
Yes, women can get non-cancerous lumps, but a biopsy is the only way to rule out that a lump is cancerous.
Steven Sugarman, a medical breast oncologist at Memorial Sloan-Kettering Cancer Center in Commack, Long Island, who was not involved in Lindsay's care, encourages patients to seek a second opinion if they feel their physician isn't taking their concerns seriously. It's also important to look at "reputable sources" for information and advice, he says.
It wasn't until a year later that Lindsay and her husband, Tony, decided to get a second opinion. This time, Lindsay went to the James Cancer Hospital at The Ohio State University Medical Center. Within a week, ultrasounds, biopsies and mammograms were performed.
"We got a pathology report that had cancer written all over it," Lindsay says. Lindsay had stage 3 HER2-positive breast cancer, and within a year, the cancer spread to her bones.
Even if you're not a healthcare professional, it's perfectly normal to question a doctor. Lindsay has learned that since you know your body better than anyone, it's important to fight for yourself. "Be your own advocate," she says.
That doesn't mean that anything unusual is automatically cancer. It may be something else, or it may in fact be nothing--something people who have successfully been treated for cancer must frequently consider. When every little ache or cough brings up a fear of recurrence, the physician should respond to each worry with understanding.
"The role of the oncologist in caring for a very concerned patient is to listen carefully to the patient's complaint and order the appropriate tests to determine if the problem is a significant one that requires a specific treatment," says Sugarman.
"If the complaint turns out, after full evaluation, not to be serious, then the physician should prescribe the best plan, give the patient instructions on what changes to look for that would require further investigation, and provide words of reassurance and comfort to the patient."RELATED POSTS
BY GUEST BLOGGER | JULY 17, 2013
We've all seen cancer slogans on t-shirts, buttons and baseball caps. If you've received a cancer diagnosis, odds are good you've also heard them from your family and friends.
My first go-round with breast cancer, I wore my hot pink Cancer Sucks t-shirt with pride to my chemo treatments. A few years later, life is more challenging with my metastatic diagnosis and trying to live One Day at a Time.
Two weeks ago, I attended my uncle's funeral; after the service, we were traveling to MD Anderson for a PET scan and doctor's visit. During the service, I was looking at Uncle Bill's children, grandchildren and great-grandson.
"Hmmm.....let's see....if I was 31 when Henry (my son) was born, I'll be 36 when he starts kindergarten. If I'm 49 when he graduates high school, how many years until I could be a grandma?"
There I was, sitting second pew, when a familiar dark cloud slithered into my thoughts. "Will I live long enough to meet my grandchildren?"
My mom will tell you no one knows how much time they have; she could get hit by a bus tomorrow. While that may be true, some of us are standing in the middle of the road, making us more likely to get hit by a bus than the average person. Most people assume they'll live a long and healthy life, but when you're in my boat, it takes concerted effort to make that assumption.
It's been almost a year and a half since I was first deemed incurable. Henry was only a few weeks old and completely dependent on us, but I was the one that needed him. Even when the dark thoughts felt all consuming, I had to Put One Foot in Front of the Other and go fix him a bottle! He continues to give me purpose daily, making it impossible for me to hide under the covers.
My goal is to Enjoy Life in the Now, which is much easier said than done. Most days I choose to keep busy with being a wife and mom – balancing trips to the grocery store and play dates, with oncologist appointments and medicine side effects. I am still responding to my current medication, giving me 12 weeks until the next trip to Houston. Until then, we'll be enjoying summertime in the backyard and trying to stay cool in the Texas heat, just like a "normal" family would.
From now on, when the black cloud sneaks into my thoughts, I am going to follow Henry's lead. At 18 months old, my son doesn't look at the big picture or know what he'll be doing next year or even this afternoon. Every morning, Henry wakes up smiling and ready to tackle the day by running around like a wild man, terrorizing the dogs and trying to jump off the back of the couch.
I can't think of a better example of Live for Today, can you?
Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.RELATED POSTS