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CATEGORIES [ BREAST CANCER ]

Good medicine

BY GUEST BLOGGER | APRIL 17, 2014

Carolyn Choate

When I hear women in the locker room at the gym curse the day because of a broken nail or a parking ticket, I can't help but get sassy with them. "Let me get this straight," I might say, pointing at my chest where two perfectly formed breasts used to reside pre-double mastectomy. "I'm flat as a pancake, have chemo brain until noon, and my eye brows never grew back, but do you hear me complaining?"

"We don't know how you do it," they sigh, shaking their heads with a mixture of pity and ...well, pity. This is what kills me. That "civilians" – that's what my friend and fellow survivor, Noreen, calls the uninitiated – act like cancer survivors have a real choice in the matter. Like choosing the paint color for our car from the factory or selecting a new dish washer from Sears.

"Chutzpah!" I declare with a winning smile, "That's how I do it; chutzpah and good medicine keep me putting one foot in front of the other."

In spring 2004, I didn't think I had many steps left after a routine mammogram failed to detect a tumor the size of a golf ball. Thankfully, I noticed a change to the areola of my right breast a month later and quickly called my PCP. A biopsy confirmed my darkest fear but the prognosis after surgery was far worse.

Cancer had spread to my lymph nodes. That, coupled with the size of the tumor and my relatively young age – I had just turned 45 - lead my surgeon to determine that I had very aggressive breast cancer. Very apologetic, he predicted I had a 75 percent chance of dying within three years. I could feel the cancer goblins dancing on my grave within three minutes.

But then a funny thing happened on my way to the afterlife. I met my oncologist the following week for the first time, and she gave me a healthy dose of the medicine I needed most: hope. "I'm so excited to work with you," she said beaming, "with all the amazing treatments today for advanced estrogen receptor-positive breast cancer, you have a 25 percent chance or better of beating it."

With a "how do you do?" like that, I became 100 percent convinced that the odds were in my favor. I kicked kicking the bucket, truly excited for all the summer adventures that lay ahead with my husband and our two young daughters. Whether camping on the lake or camping out at the infusion center ingesting "cocktails" so exotic my hair fell out, my oncologist helped me see that it wasn't enough to merely accept treatment.

I wasn't a criminal resigned to serving my sentence. Quite the opposite, I saw myself as an eager and enterprising foreman, overseeing the biggest restoration project in my life, way bigger than remodeling our kitchen a few years prior. Cancer treatment or kitchen remodeling, if you don't have the right tools and know how to use them, chances are slim you'll get the results you wanted.

Survival is still an adventure all these years later, one that wouldn't be possible without continued pharmaceutical research and the dedication and encouragement of my oncology team. After an initial five-year course of the oral aromatase inhibitor, Letrozole, following chemotherapy and radiation, I recently completed an additional five years in a double-blind trial to determine if extended use of Letrozole gives added benefit. I won't find out the results until 2015 but, regardless, being part of such an important study in the fight against breast cancer recurrence has been an easy pill to swallow.

Carolyn Choate was diagnosed with stage 3B invasive lobular carcinoma more than 10 years ago. She is a long-time TV producer and on-air talent for WYCN in New Hampshire. A dedicated "coach potato" before cancer, Carolyn has since participated in the SheROX triathlon, is an avid kayaker with her daughters, and most recently rode her bike solo from Boston to Montreal to raise money for Rotary International's "End Polio Now" campaign. She is currently working on a memoir, Flat as a Pancake & Loving It.

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CATEGORIES [ SURVIVORSHIP, YOUNG ADULTS ]

The other option: Surrogacy after cancer

BY GUEST BLOGGER | MARCH 26, 2014

Jen Rachman

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.

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CATEGORIES [ SURVIVORSHIP, YOUNG ADULTS ]

So much to celebrate

BY GUEST BLOGGER | MARCH 25, 2014

Rachel Baumgartner Lozano

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.

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CATEGORIES [ FEATURED, BREAST CANCER ]

Spreading the word about BRCA

BY GUEST BLOGGER | MARCH 5, 2014

Carrie Corey

When I was first diagnosed with breast cancer at age 29, doctors immediately sent me for genetic testing. We learned that even though I had no significant family history of cancer, I had inherited a genetic mutation from my dad's family, giving me more than a 50 percent chance of getting breast cancer in my lifetime. Unfortunately, I did not know about my BRCA2 status before finding a lump in my breast, since a prophylactic mastectomy could have significantly reduced my chances of getting breast cancer.

As a young woman with breast cancer, there have been times when I can't decide if I feel more like a pariah or a celebrity. Now that I am stage 4 and living with cancer (a concept even I can't wrap my head around sometimes), there are days when I struggle to be a normal person – a wife, mom, friend, daughter, sister ... not the poster child for "young women get breast cancer too." Although it is an important message to broadcast. I refuse to think there is a "master plan" reason for me getting cancer, but I do know some good things have happened as a result of it. The only way I know how to make sense of my roller coaster life, is to hope my journey positively impacts other people.

I witnessed one of those impacts just yesterday when I received a text from my friend Jennifer, saying, "You are more of an inspiration than you know."

My mom and I met Jennifer a few years ago at the Susan G. Komen 3-Day for the Cure in Dallas. With 60 miles of walking and talking, we quickly learned Jennifer was walking for her mom who had recently passed away from breast cancer. By the end of the three days, Jennifer had heard all about me and my breast cancer – and my increased risk as a result of a genetic mutation.

Over the next few years, Jennifer and I kept in touch. She met with my breast surgeon and underwent genetic counseling. She too, tested positive for a BRCA mutation, but without a cancer diagnosis, she had to face the tough question: now what? The last time I saw her, I had to break the news that my cancer had returned and is now stage 4.

Her text this week was to tell me she had scheduled a double mastectomy.

It's silly to think of myself as an inspiration because I don't feel like I have done or accomplished anything significant, but I do take comfort in knowing I have inspired her to take control of her own health. For those people who may not believe prophylactic surgery is the way to go – take a look at Jennifer's two little guys: don't you think they want their mommy to see them grow up? I know Henry does, and that's what gets me out of bed every day, fighting the good fight.

In a few months I will take part in a clinical study to look for additional biomarkers like BRCA; because the more we know about my cancer, the better equipped we will be to fight it. Congratulations to my friend Jennifer, for doing everything in her power to fight cancer. I hope we continue making genetic discoveries that can empower other people to do the same.

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.

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CATEGORIES [ GENERAL ]

Today is Rare Disease Day

BY GUEST BLOGGER | FEBRUARY 28, 2014

The most satisfying aspect of my job is when I meet a patient who is suffering from a rare disease that until very recently was untreatable, but which today can be treated with a newly-approved medication.

Last May, at my organization's annual dinner, we invited four patients to come to the podium to discuss their diseases. They then made presented awards to the presidents of the companies that had developed a new drug already being used to treat their disease. I saw tears come to the eyes of the people attending the dinner.

We all know one or more people who are alive today because of the remarkable medical advances made very recently. This includes the many new treatments for both rare and more common cancers. The latest report from the American Cancer Society noted that between 1991 and 2010, there was a 20 percent decline in the overall death rate from cancer. The organization that I head, the National Organization for Rare Disorders (NORD), focuses on patients with a rare disease, which is defined as a disease that affects 200,000 or fewer patients in the U.S. Many rare diseases are cancer, and as we learn more about cancer, more and more will be classified as "rare."

This week is a special week for all patients with a rare disease, as Friday, Feb. 28, is commemorated around the world as Rare Disease Day.

We designate the last day in February as Rare Disease Day because every four years, when there is a leap year, the last day of the month is February 29. It truly is the rarest date on the calendar.

This year, my thoughts turn to the remarkable progress we are making in developing new treatments. Cancer research is especially exciting. Cancer immunotherapy – using the body's own immune system to fight cancers – promises to lead to new therapies for solid tumor conditions such as melanoma, non-small cell lung cancer and bladder cancer.

At NORD, we rededicate ourselves this week to the tasks that are especially critical for the 30 million Americans with a rare disease. Five tasks stand out:

1. Supporting research for rare diseases, including cancers that are rare. It is ironic that we are on the cusp of so many scientific advances, at a time when the research dollars are becoming scarcer. At NORD, our goal is to support the federal and private commitment to medical research.

2. Enhancing the capability of physicians to diagnose rare diseases. Most physicians have little experience in diagnosing a rare disease, some of which affect a handful of people. For many diseases, it can take half a dozen years, or more, before an accurate diagnosis is made. At NORD, we support systems that provide broader education for physicians in enabling them to diagnose rare diseases more quickly and with greater accuracy.

3. Expediting clinical trials. Testing new treatments is always time consuming, especially when little is known about a disease, and when there are few patients to test. At NORD we are committed to increasing our knowledge about how a rare disease naturally progresses, with no intervention or with existing interventions, because we can then more easily assess the effectiveness of a new treatment. And we also have established networks of patients with rare diseases so that recruitment for clinical trials can be expedited.

4. Expediting new drug approvals. We are fortunate to have officials at the FDA who understand that, sometimes, it is not feasible to test a new treatment for a rare disease the same way that a treatment for a common disease would be tested. The FDA has demonstrated great flexibility in assessing new treatments for rare diseases, and we at NORD support that spirit.

5. Assuring access to new treatments. Our health care delivery and reimbursement systems are changing. There are more patients entering the system, and better and more expensive treatments are being developed. At NORD, we can committed to working with insurers -federal, state and private – to assure that new treatments become available in a timely way. At NORD we also pioneered patient assistance programs that enable patients in need to receive the support they need.

One more thought as we commemorate Rare Disease Day, and that has to do with the new empowerment of the patient. We are seeing more and more personalized drugs – drugs that are created for an individual patient. As personalized medicine becomes a reality, patient involvement in the development process becomes ever more important. The word that I use is "patient-centricity." We at NORD are committed to making the patient the center of the health care system.

I hope that everyone who is concerned about medical advances – and that should be every one of us – takes a few minutes this Friday to think about Rare Disease Day, and about the progress we have made, the progress we are making, and the challenges that remain.

Peter L. Saltonstall is the president and CEO of the National Organization for Rare Disorders (NORD), a nonprofit organization representing the 30 million Americans with rare diseases. Learn more about NORD at rarediseases.org.

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CATEGORIES [ SURVIVORSHIP, FEATURED, TREATMENT ]

In memory of my oncologist

BY GUEST BLOGGER | FEBRUARY 26, 2014

David Kalish

Since my diagnosis in 1994 of a rare, incurable condition--medullary thyroid carcinoma--I've searched for an effective treatment. After three neck operations and chemotherapy did little to check my cancer's spread, I entered a drug trial at Fletcher Allen Health Care in Vermont. The oncologist running the experiment was Dr. Steven Grunberg, who took me under his wing. Despite my aggressive disease, he reassured me with quiet confidence. We're going to help you stick around, he said.

Today, thanks to Dr. Grunberg and his staff, I'm still here. But Dr. Grunberg isn't. He died of lung cancer in September. It's a painful irony I'm still sorting through.

By the time I found Dr. Grunberg five years ago, my cancer had spread to my lungs. I was growing desperate. In my mid-40s, with many things yet to accomplish in life, I researched experimental treatments and exchanged information with other sufferers of my rare disease through the Thyroid Cancer Survivors' Association.

One day I clicked to the clinical trials page of the National Institutes of Health, and learned of a novel drug being tested against my specific condition. The drug, then called Zactima, is a tyrosine kinase inhibitor. Basically it works to block proteins that tell tumors to grow.

Vermont's Fletcher Allen Health Care was among the study sites. One weekday morning I drove three hours from my Clifton Park, N.Y., home to Burlington, Vt., to meet Dr. Grunberg and get the ball rolling. Though untested drugs can be risky, he quickly earned my trust. A thick-haired man who spoke in quiet intelligent bursts, he'd keep a close eye on me, monitoring my status through bloodwork and scans. He spoke frankly of possible side effects, which included skin and intestinal problems. There was another concern. Two-thirds of study participants were supplied with the drug--but one-third received a placebo. Neither doctor nor patient knew which one patients had. I could be left without a life preserver.

By my next appointment, three months later, my levels of calcitonin--a hormone stimulated by my cancer--crashed to 10,000 from over 100,000 before the trial. It was apparent I was among the lucky two-thirds of patients. The drug was working!

Dr. Grunberg wasn't one to show a lot of emotion with me, but he shared an enthusiastic smile when he told me the good news. I immediately called my wife to tell her, and drove back to New York that afternoon, my heart singing with hope for my future.

Over the next five years I visited Fletcher Allen every three months. I came to refill my prescription of once-a-day Zactima pills, undergo CT scans and bloodwork -- and to feel supported by Dr. Grunberg and his staff of nurses and researchers. I remember pricking my ears to catch every morsel of what Dr. Grunberg was saying. He was a steadfast presence, and when he examined my neck and chest for recurrence, I was in sure hands.

He was more than a doctor to me. As a theater buff, he took an active interest in my writing, and spoke to me of his daughter's creative pursuits. I emailed him several of my short stories, and he always took time to send me a complimentary email back. I considered him a friend.

The drug kept my condition at bay, and as a result of the trial was approved as Caprelsa by the Food and Drug Administration for use against my cancer. Today thousands of patients like me can now benefit from work by Dr. Grunberg and other study researchers.

The last time I saw Dr. Grunberg was this past spring. I noticed no difference in his manner toward me. He seemed healthy, energetic--his hair as thick and dark as ever. He gave zero hint he had cancer, let alone terminal cancer, even as he treated mine. He betrayed nothing. But when I visited Fletcher Allen again in summer I received the odd news he'd taken a leave. I asked for elaboration but the staff was oddly quiet. It wasn't until I visited again this fall when his staff told me Dr. Grunberg had died of lung cancer.

I was stunned. But he didn't seem sick, I insisted. He kept working right up until the end. That's when it hit me: he didn't want his patients to know their doctor was dying of the same condition they hoped to beat. Dr. Grunberg didn't want them to lose hope, even as his own situation grew hopeless. My sense of betrayal at not being told sooner melted away into gratitude. His silence was admirably selfless. The world--my world--is poorer without him.

When I revisit Fletcher Allen for my next appointment in January, I'll see another oncologist who has replaced Dr. Grunberg on the trial I'd entered. She's a smart, caring doctor, and I recognize signs of selflessness in her as well, because I now have a standard against which to measure people's worth. Because Dr. Grunberg gave me a new lease on life, even as his own lease expired.

David Kalish is a survivor of medullary thyroid carcinoma and the author of the comedic novel, The Opposite of Everything, which inspired this essay and will be published this spring. You can read more at davidkalishwriter.com.

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CATEGORIES [ SURVIVORSHIP ]

Surviving oral and head and neck cancer: The new normal

BY GUEST BLOGGER | FEBRUARY 26, 2014

Dennis Abbott
We call them survivors for a reason. They inspire. They give us hope. They bestow upon future survivors the courage to face the darkest of times. They remind those of us who fight against cancer that our efforts are not in vain...that victories are sometimes won and lives saved. But for those who have faced death and conquered the disease, what now?

Life after cancer is different. The truth is survivorship experiences vary as greatly as the individual battles with cancer itself; but for many, survivorship may include a lifetime of struggles. Regardless of the type of cancer faced, many of these challenges revolve around oral health.

One of the most common side effects of chemotherapy and radiation treatment to the head or neck is severe dry mouth. For many, especially those who have survived oral and head and neck cancer, the impact of this condition is long-term and debilitating. Beyond just the discomfort, severe dry mouth can cause rampant dental decay, frequent oral infections and difficulty in chewing and swallowing. This, in itself, can lead to poor nutritional intake.

For those survivors whose treatment included head or neck radiation, limited opening of the mouth, known as trismus, can make eating a difficult task and oral hygiene burdensome. Oral and head and neck cancer survivors also face unwanted oral health issues with the possibility of rapidly advancing periodontal disease (gum disease), burning mouth syndrome, and osteonecrosis, an occurrence of dead bone which becomes exposed through the gum tissue and is often painful and can lead to systemic infection.

It's not just those with oral and head and neck cancer who face oral health issues related to cancer care. Those treated with intravenous bisphosphonate drugs for multiple myeloma and metastatic bone disease have a similar risk for the development of osteonecrosis of the jaw.

Bisphosphonates are excellent drugs that have a definitive place in treatment regimens, but their effect on the bone remains for decades. Those survivors whose treatment has included intravenous bisphosphonates must be certain their dentist knows their medical history and is familiar with the risks associated with this class of medications. Survivors who continue to take maintenance medications often continue to experience issues with dry mouth. While dry mouth may not be as severe as during cancer therapy, the decreased salivary flow is often enough to increase the risk of rampant dental caries and intraoral infections.

Some of the challenges faced by survivors go well beyond health issues. Social and psychological changes are not uncommon. For the oral and head and neck cancer survivor, eating in a restaurant may be so great a chore that what was once a pleasant outing is avoided because of sensitivity to foods or inability to properly swallowing. Frequent choking or eating slowly makes the survivor self-conscious in a public setting. For survivors with cancer that has left them scarred with physical changes, psychological and emotional scars often take much longer to heal. Whether it is the head and neck cancer survivors acceptance of a reconstructed face, adjustment to a new body image for the breast cancer survivor, or the prostate cancer survivor's struggle with urinary incontinence, the challenges of survivorship are very real and a means of support and coping must be realized and valued.

As more healthcare providers prioritize the importance of providing services to cancer survivors, it is my hope that we will see more emphasis placed on meeting the physical, emotional and spiritual health of this special group of individuals. Survivorship issues transcend the perceived barriers between medicine and dentistry and mental health and social work. This is an appropriate cause for healthcare professionals from all walks and specialties to come together for the betterment of those who were once our patients and are now survivors!

Dennis M. Abbott, DDS, is the founder and CEO of Dental Oncology Professionals, an oral medicine practice dedicated to care for the unique dental and oral health needs of individuals battling cancer.

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CATEGORIES [ DIAGNOSIS ]

Misdiagnosed, but not misunderstood

BY GUEST BLOGGER | FEBRUARY 24, 2014

Becky Busch

One of the many unfortunate things about having a rare tumor was that for some time no one was certain what it was. In fact, I was misdiagnosed a couple of times.

The first surgeon that I came in contact with believed it to be esthesioneuroblastoma, which is quite rare. It has affected maybe 800 people in the world. However, it is a slower moving tumor, and he had me convinced that this thing could have been slowly growing for up to five years without me being the wiser.

His plan was to do surgery. I had my first CT scan on a Friday and he wanted to do surgery the following Tuesday. He said he couldn't do a biopsy beforehand because the tumor was in my brain. Being in 'fix it' mode I agreed to it. To sum up: This man, who was very nice by the way, and who happens to be a surgeon, said he could remove the tumor. It sounded good to me. My family flew in the next day and put the kibosh on that plan.

At first I argued with them. I wanted this tumor out of my head, and there is a man (who went to medical school) who says he can do the task, so why not let him.

While I was lying in the ICU that weekend, my family worked tirelessly to come up with a plan to make me listen. Finally, after the relentless efforts of my parents and siblings they made contact with the Anschutz Cancer Center at the University of Colorado hospital and MD Anderson. They believed a biopsy could be done through my nose.

I'll admit that after the biopsy, things became fuzzy for me. While the doctors convened on my case and treatment, my condition got worse. I was hardly able to get out of bed, and the prescription painkillers had me pretty much out of it. So much so that I don't remember the majority of things that happened in this time. I was finally hospitalized at the university hospital, and I began my first chemotherapy treatment. It was a 96-hour infusion of taxol, cisplatin and 5-FU. Nurses practically wore haz-mat suits while administering these toxins into my veins.

After my treatment, a couple weeks later, I started to feel better. A nurse was disconnecting my IV, and she started asking me about my condition. My sister was sitting in the room with me as I answered. I told the nurse it was esthesioneuroblastoma. My sister sat up and interrupted me, "Umm, Becks, you know that's not what you have, right?"

"It's not?"

"No. Don't you remember the doctor giving you the results of the biopsy in the hospital?"

"He did?" Like I said before, things got fuzzy. I didn't even retain important information. "What do I have?" I asked.

"Sinonasal undifferentiated carcinoma," she told me.

"Huh." I paused. "Is that better?" I asked with a ray of hope.

She shrunk in her chair. "No."

It turns out it was a more aggressive tumor. Instead of growing in five years, it grew in five months. It was also more rare, affecting 400 instead of 800, and it was classified as inoperable. They knew that it started in my sinuses and that is was some sort of carcinoma, but the word 'undifferentiated' pretty much meant they didn't really know what it was.

After six chemotherapy treatments and more than six weeks of radiation therapy, the tumor shrunk enough to be removed surgically. After the tumor was completely removed and available for further testing I was officially diagnosed with sinonasal teratocarcinosarcoma. When my surgeon told me the new diagnosis, I again asked, "Is that better?"

"No." Instead of being 1 in 400, I am now 1 in maybe 50-80 people in the world that have ever had it. It is highly aggressive and rare, and now we know that it is a polymorphic cancer, meaning it can affect and travel through blood, tissue and bone. In fact, part of the tumor had actually calcified and turned into bone--and you thought it couldn't get weirder.

Hindsight is always 20/20. If I had undergone that first surgery I most likely wouldn't have survived. Thank you to my family and friends who saved my life. You gave me the tools to live. You gave me a missile to take into a gun fight.

Being diagnosed with a rare cancer can be frustrating because there is not as much information out there on rare diseases. The study groups are small, so the statistics often sound very bleak. When I was looking into sinonasal teratocarcinosarcoma I was reading statistics like 'in a study group of 11 people, 8 died within 1 year. Of those who survived, 70% died within 5 years.' This was not encouraging information.

The support is not the same for those with rare cancers. The lack of support can be as small as not having our own color for a wrist band, and as large as minimal funding for research. There are no official parades, marathons or fundraisers for sinonasal teratocarcinosarcoma or the many other rare cancers out there. If you want those things for rare cancers you have to do it yourself. Sometimes that can make a person feel alone.

Everyone deals with trauma differently. For me I found that the best medicine was laughter. I found something to laugh about every day, and the amazing thing about laughter is that it is contagious. Others around us would open up more freely, and I have even made some lasting friendships from the waiting rooms in the cancer center. When you have a good attitude, you inspire other to do the same. Before you know it you won't feel so alone any more.

Becky Busch was diagnosed with a rare and aggressive cancer several years ago. Since surviving it, she has rediscovered her passion for writing. Among other things, she writes a blog about herself and her own battle with cancer at whoistherealbb.com.

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CATEGORIES [ TREATMENT, GENERAL ]

With rare cancers, information and support can be hard to find

BY GUEST BLOGGER | FEBRUARY 24, 2014

Les Mahler

Most any diagnosis of cancer is filled with worry and bad thoughts, but when the cancer diagnosis comes with the words that it's a rare cancer, the words are more than devastating, they're horrifying and nerve-racking.

How rare, what's the prognosis, why me, what did I do, what can be done and what are my odds or chances on recurrence and dying?

At least that was my reaction when I was told in 2007 that the tumor behind my right eye was adenoid cystic carcinoma; the more difficult part was the pronouncement by the oncologist that the cancer was incurable and fatal. "You will certainly die because of the cancer."

Wow, could it have been told in a gentler way, without the windows closed and dark curtains drawn all around?

After the surgeons and oncologist left, I took a half hour to myself and cried, uncontrollably. I needed that time to understand the magnitude of what had been said to me, and then I straightened up, took a deep breath, looked around and realized I was still alive and the cancer was just a disease like any other disease. All I had to do was find out more about the cancer and try to live life as best as possible.

The problem was gathering information about adenoid cystic carcinoma is that there's such scant information out there. Plus, what information is out there is sometimes so outdated and wrong.

For example, how many people are diagnosed each year with ACC, is it 1,200 or 1,500 or a lesser number? And what are the survival rates in terms of years? Different sites, different information. I wondered should I just pick my own numbers.

The other problem was finding an oncologist who had at least some experience with this type of cancer. The first one put it very bluntly, "30 years as an oncologist and you're my first ACC patient; I can't help you."

The second oncologist put it more mildly, "I know nothing about your cancer. I'm flying blind and learning as we go along. You probably know more about this cancer than I do."

My third and current oncologist hasn't said what he knows about this cancer, which I guess is good. During a visit, I did ask him if he's treating me like any other cancer patient, wondering if this cancer is different than other cancers.

It sure looks as though he's treating my cancer like any other cancer, with the standard six months between tests and check-ups.

I did pick five years as the starting number for survival rates; that sounded good but by 2012, a new tumor had been found pushing against the brain. It actually started growing in 2011 but it was missed, even with the MRI and contrast.

My oncologist gave me the bad news, there's nothing that can be done, surgery is out because the tumor had grown around a major blood vessel. If we tried surgery, I would die on the table. Oh, not good.

Chemotherapy has never been and was not an option with ACC because the cancer is so relentless.

It was almost as though the oncologist didn't have an answer; that he was at the end of the rope: and then, one last hope, radiation. But how much and how long, and would it be safe considering I had had radiation in the same general area in 2007; plus, this time there would be radiation to the brain. Thank God for Stanford.

Their recommendation, eight weeks of daily radiation and all will be good to go. Of course, with this cancer there is no good to go, ever.

On Jan. 2, news came that a growth had been found in the left lung; for now it's all observation and then a fine needle biopsy (I had that done for the eye in 2007, so no worries there).

What I've discovered in my cancer journey is that there is no ready-set information about adenoid cystic carcinoma. Yes, it is a rare cancer, and as such, there is little information out there on how to treat it and what to expect.

Also, there is little research being done leaving ACC patients to wonder why? Is it because this cancer affects so few? I know many ACC patients feel like we're the pariah, the black sheep of the family. I have noticed that ACC patients themselves have started their own websites for information on this cancer; only we understand what we're going through so it would stand to reason that we'd reach out to help each other.

We have several sites on Facebook, where we exchange information and often support each other as we fight this cancer; the sad part is so many new people are joining these sites and then there are the ones we say goodbye to...too often and too many. As for me, I am spending time with childhood cancer patients and helping raise funds for research.

Les Mahler is a journalist, copy editor, song writer, children's story writer, photographer, and an adenoid cystic cancer survivor since 2007. He's on his third fight against ACC.

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CATEGORIES [ LUNG CANCER, FEATURED ]

The road from caregiver to advocate

BY GUEST BLOGGER | FEBRUARY 24, 2014

Katie Brown

Many people don't know that lung cancer is a disease that can affect anyone. One in 14 people will be diagnosed with lung cancer and over half of those diagnosed will be people who either quit smoking decades ago or who never smoked a day in their lives. Lung cancer can happen to anyone regardless of age, gender, race, health or smoking history. Its patients have felt stigmatized, neglected and unsupported in their communities. Lung cancer is the least funded cancer even though it kills more people each year than breast, prostate, pancreatic and colorectal cancers combined.

These were the statistics I read while Google searching the disease that had suddenly invaded our lives. I had fallen into the role of caregiver and patient advocate without any warning or training manual. It was the hardest job I've ever had and at the same time, the most rewarding.

When my dad was diagnosed with lung cancer in 2002, his diagnosis came out of the blue and we had no local support. The isolation of a lung cancer diagnosis was intense. With little treatment options, incredibly low survival rates and no support or resources specially for his disease, the odds of survival for him began to plummet. This was our devastating reality 10 years ago. My dad died 11 months and 21 days after his diagnosis and he fought fiercely to live every one of those days. I promised my dad then that I would never stop working to support those affected by lung cancer. And I haven't.

Today, 11 years later, I am the director of support and advocacy for the largest lung cancer nonprofit in the nation, LUNGevity Foundation. I have created and managed support programs for people impacted by lung cancer and survivorship conferences that take place nationally and regionally. But it's been a long road of advocacy.

I encourage people who feel a calling or mission to become advocates for what they believe in to make a plan and stay the course. We need more of you in the cancer community to be the voice for those who can no longer speak.

I do have a few pieces of advice:

Take care of yourself.

While you are caring for the life of someone your love, don't forget to take care of yourself. You won't be useful to anyone if you are burned out and exhausted. Fighting cancer and fighting for someone's life is incredibly hard. Mistakes get made when we are tired or emotionally charged. Don't forget to take care of yourself. You'll do a better job at being a caregiver to someone else if you do. Take care of yourself and ACCEPT help from others.

Find the unmet need.

In my case and with a disease like lung cancer, our immediate unmet need was support for patients and families. Eventually that turned into access to information about the disease and treatment options and more funding for research so that there can be more survivors. All of those unmet needs put together are HUGE but taken a bit at a time they can be addressed. I'm not a researcher or a doctor, but I can navigate a patient during their journey to find the answers they may be looking for. I wasn't a social worker or therapist, but I could create a peer to peer support resource for people to walk the lung cancer journey together and build ways in which patients and families could help themselves. Find your unmet need and come up with an action plan to address it.

Connect with others.

There are other caregivers, family members, survivors and advocates who share your passion to advocate for your cause. Seek them out and connect with them on message boards, websites, and advocacy groups in your local community. Have phone calls, twitter chats, and meetups to discuss ways you can raise awareness and make an impact. If one person can make a difference, image what a group of like-minded people can do!

Be gentle on yourself.

I wish I would have taken this advice more. As caregivers to those we love we tend to take every victory and every setback personally. We also sacrifice our health and needs while caregiving. I remember when my dad passed away thinking that I hadn't done enough to "save him", as if anything I could have done would have stopped the progression of his cancer. "I didn't search the internet enough. I didn't explore 3rd or 4th opinions. I didn't tell enough jokes, pray enough or keep up a positive attitude 100 percent of the time. He didn't try alternative therapies." And a dozen other what-ifs and second-guessing-myself thoughts that flowed through my mind.

Today, I know the outcome would have been the same no matter what I did then, and from that experience I take away the precious memories and moments I was able to share with him as his caregiver and his daughter.

Looking back now I know the landscape of this disease enough to know that having access to information and treatment options, access to clinical trials and medications for side effects will make the road smoother for someone else. I know that having others to talk to can alleviate feelings of fear and guilt and isolation. Those are the unmet needs I've been trying to address.

Seek out support for yourself and your loved one while you are actively walking through cancer. And when you are no longer caregiving and ready to be an advocate, surround yourself with others who believe in your cause, will support you and help you to succeed.

Finally, don't lose hope.

Even if things don't work out exactly like you planned, don't lose hope that one day there will be more. More support, more treatment options, more awareness, more research and more survivors. I absolutely believe that there isn't anything greater than hope. It picks you up when you've been knocked down. It hugs you when you feel defeated, carries you when you receive good news, and it's the whispered promise that everything you have done and everything that you will do, matters.

Katie Brown is the Director for Support and Advocacy for LUNGevity Foundation.

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