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BY GUEST BLOGGER | MARCH 27, 2013
The first thing he asked should have tipped me off.
"Did you come alone?"
It was a sunny morning in July almost five years ago. The next four words my hematologist said will forever be embedded in my memory: You have multiple myeloma.
Like so many before me, the moment of my diagnosis was the first time I'd ever heard the word. As a teacher, I did what I often encouraged my students to do when they didn't recognize a word – I asked him to spell it out for me. When I told my family, they immediately thought I had been diagnosed with skin cancer.
But myeloma is not melanoma. Myeloma (also multiple myeloma) is a blood cancer. At the time, the only blood cancers I had been aware of were leukemia and lymphoma. The only blood cancer organization I'd ever heard of was the Leukemia and Lymphoma Society. Using deductive reasoning, I figured that since the word "myeloma" wasn't in the organization's name, then myeloma couldn't be a cancer. Some people call it wishful thinking. Others might call it denial.
Prior to my diagnosis, I'd been suffering from excruciating pain. I'd been having trouble with fatigue, and often felt myself forgetting things – like whether or not I recorded my students' grades before handing back their assignments.
My orthopedic doctor treated me with pain medication and physical therapy for two years before discovering that compression fractures in my spine were the source of my pain. I was scheduled for surgery to have the fractures repaired, but the surgeon required medical clearance from my primary care physician, who in turn referred me to a hematologist when my blood work revealed I had severe anemia.
That's how I ended up sitting across from a hematologist on a hot summer day, learning about my cancer.
Knowing what I know now about myeloma, it's frightening to remember the roundabout road I traveled to get my diagnosis. See, anemia and bone pain are two of the four common symptoms of myeloma. The other two are renal insufficiency and high calcium levels in the blood (which can cause confusion). If I had been aware of these symptoms and their connection to myeloma, I might have questioned why two years of physical therapy and pain medication were not working.
This is why I believe it is so important to promote myeloma awareness. I'm grateful that the International Myeloma Foundation has designated March as Myeloma Awareness Month and initiated their "Tell One Person" campaign to help spread life-saving information about a disease that, despite its being the second most common blood cancer, often goes untreated for years because of a lack of awareness.
This year, an estimated 22,350 adults in the United States will learn about myeloma when they receive their diagnosis. To help them know they are not alone, I have been doing my part by using social media to reach out to the myeloma community. I am @MyelomaTeacher on Twitter, where I post facts about myeloma symptoms, treatment and other information that benefits myeloma patients and their caregivers.
I keep going back to the realization that if I had known about the CRAB criteria (C-calcium, R-renal insufficiency, A-anemia, and B-bone involvement) I would have saved myself two years of debilitating pain and confusion.
If I can help one person avoid making the same mistake I did, and recognize their symptoms early on, it will make all the difference in the world.
Cynthia Chmielewski, a retired educator, is a patient advocate and mentor, a patient services volunteer, and a "life-long learner" who lives in New Jersey.
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BY GUEST BLOGGER | MARCH 19, 2013
Michael and I lived a traditional American lifestyle: he worked full time in the manufacturing industry while I stayed at home to raise our two young children. Our youngest was just two years old when Michael began experiencing serious back pain. We never imagined that the symptoms would mark the beginning of Michael's lifelong battle against cancer.
In 2000, at the age of 36, Michael was diagnosed with multiple myeloma, a cancer of cells in the bone marrow that affects production of red cells, white cells and stem cells, and can damage bone. Myeloma is also a cancer--as he was told by doctors--for which there was no cause or cure, and which had on average a five-year survival rate.
A five-year survival rate?
When we heard that, our first thoughts were for our children. Mikey was barely walking and Allison was only seven years old. We were devastated, but Michael was not willing to accept the idea that he wouldn't be there to watch them grow up.
Thirteen years later, Michel, the kids and I look back with gratitude that my stubborn husband refused to believe the doctors' prognosis. Allison is now a sophomore in college and just turned 20, and Mikey is already in high school. We are defying the odds 13 years later, and none of us takes a millisecond of life for granted.
One of the ways we show our gratitude is by taking every opportunity to share what we've learned to help others who are struggling with the disease. Educating patients and doctors about myeloma, a disease that is growing in numbers and affecting increasingly younger people, has become our mission--particularly during March, which is Myeloma Awareness Month.
Like most patients at the time of diagnosis, neither Michael nor I had ever heard of myeloma. Fortunately, the International Myeloma Foundation (IMF) was there to help us find expert doctors and learn about the latest treatments and clinical trials of new drugs. The IMF also inspired us to reach out to others in our community who were struggling with myeloma and establish the first myeloma support group in our home state of Connecticut. Today we enjoy hosting monthly meetings with our fellow myeloma patients and caregivers--learning, sharing and celebrating our personal milestones as a group.
There have been some very scary moments since myeloma entered our lives. After an operation left Michael paralyzed for two months, he needed to re-learn to stand, walk and perform routine things again as simple as putting on his socks and shoes each morning, and was forced to stop working. I cannot tell you how much I admire his strength. He never gave up, and when the time came, he was able to recover enough to help coach Mikey's baseball team.
Though it was Michael who had to suffer through the radiation treatment to shrink a large plasma cell tumor that had destroyed two-thirds of his sacrum, a successful stem cell transplant, and an operation that resulted in irreparable nerve damage in both his legs--we faced the successes and setbacks together as a family.
Then--as is frequently the case with myeloma patients--Michael's disease returned. This time, after much debate, his doctors at New York-Presbyterian Hospital/Weill Cornell Medical Center settled on a course of treatment (a combination of Revlimid and dexamethasone) that worked.
By 2006, Michael had attained complete remission. In the summer of 2007, our family embarked on an educational outreach project called the Myeloma Mobile.
With Mikey, Allison and the dog and cat in tow, our family traveled across the country, covering over 12,000 miles, and shared our knowledge and experiences with other patients searching for help and hope. It was an eye-opening experience, not to mention a wonderful time of togetherness. Have you ever parallel-parked a 35-foot RV? I have.
For the past several months, Michael and I have been actively involved with the IMF's Myeloma Awareness Month outreach programs. Our hometown of Prospect has officially declared March as Myeloma Awareness Month along with more than 40 cities and towns; six counties; three states and the entire country of Barbados that have issued similar proclamations. (Barbados? Maybe we'd better go investigate!)
The future for myeloma patients doesn't look nearly as bleak as it did when Michael was first diagnosed. In the past 10 years, the Food and Drug Administration has approved eight new treatment therapies for multiple myeloma. People are living longer and with better quality of life with the disease.
Michael is an example of that. Our family leads an active life and we are encouraged that his remission will last a long time. In fact, Michael is also a musician and he wrote a song for our children entitled "I'm Not Leaving."
I think that pretty much says it all, doesn't it?
Robin Tuohy lives in Connecticut and is Senior Director of Support Groups for the International Myeloma Foundation. Before that, she worked as a paralegal for over 10 years at a Fortune 500 company. She and her husband Michael have been married for 23 years and "face all that life brings us together--both the blessings and the challenges."
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BY GUEST BLOGGER | MARCH 6, 2013
There are conversations all of us dread. Like telling your dad you put a dent in his car. Or admitting that you told a lie. Or breaking up with someone.
And then there's telling your friends that your mom or dad has cancer. After your parents told you the cancer news, your mind was probably flooded with a ton of questions: Is my mom/dad going to be okay? Do I still get to go out and have fun? What will my friends (and other people) think?
For some, "the friend talk" may not be such a difficult conversation to have. If you're a really open person and have great, understanding buddies, you may not have as much anxiety about telling your friends the news.
Many teens, however, may feel uncomfortable or embarrassed about having a parent with cancer. Some worry their friends will view or treat them differently.
"I was at boarding school, and my roommate was the only friend I told," remembered Hakeem, a teen from Virginia whose father battled pancreatic cancer. "He probably didn't understand, but he felt sympathetic. I remember telling him he couldn't tell anybody else. I don't want to feel pitied. I didn't want people to change their relationship with me."
You may decide that you only want to let a few close friends know what's up. Or you may prefer that everyone in your social circles at school be aware so they understand when you're feeling down.
Even if they don't always "get" what you're going through, even if they say the wrong thing from time to time, having a trusted confidante will help you get through hard times. Trying to hide your parent's cancer from everyone will create anxiety over putting on a positive face 24/7 and telling white lies to explain what's going on.
Sometimes that understanding friend isn't your best buddy but someone who has gone through something similar. For Travis of Manitoba, his friend who had a mother suffer from and die of alcoholism was the one person who could understand having a mother with cancer. "If I didn't have him, I probably wouldn't have been able to get through it," says Travis, "Once or twice I cried in front of him, and he didn't think any less of me."
After I found out my mom had breast cancer, the news was always on the tip of my tongue at school. I wanted to tell my best friends but never seemed to find the perfect time to bring it up. Eventually, I started telling my friends one-by-one. Whenever there was a lull in the conversation, I turned to the friend and said something like, "So....my mom has breast cancer." Then I would diligently answer their string of questions about whether she'd be OK and how I was doing.
I have to admit: I never really liked talking about my mom's cancer. Whenever friends asked about how she was doing, my go-to answer was "fine." I never wanted to talk about it but it was comforting to know that my friends were all aware of what was up.
Whomever you decide to tell, there are many ways to do it. You can tell all your friends at once–say while you're eating lunch at school or having a sleepover. You can tell friends one-by-one like I did. You can even write an email or Facebook message to your buddies if you just can't bring yourself to talk about it (but check with your parents first–maybe they haven't told all their friends and don't want the news leaking out online).
Or you can tell one trusted friend and ask that they "be your messenger," letting others know so you don't have to have that conversation over and over again.
Once your friends know, you will find that some give you just what you need and others don't.
When my dad and I wrote My Parent Has Cancer and It Really Sucks, we spoke to over 100 teens whose parents fought the disease. Thirty percent said their friends "were always there for me," 45 percent said they were "somewhat helpful" and 25 percent said "they just didn't understand."
It's important to let your friends know what you need so they can be supportive–and to be forgiving when they don't always say the exact thing you want to hear. Let them know whether you want them to bring it up. Alert them if you want them to keep the news a secret. Finally, tell them what you need and be willing to accept support. Some teens find it hard to ask for help.
"Don't shut people out," says Pat Lee, a breast cancer survivor from Alabama, a single mom of two teens and director of Students of Survivors and Athletes Kicking Cancer. "When people want to help, let them...Let people help because they want to do that. Because they love you and it's a good thing...Embrace it. Accept it. And let it be what it is for the time."
Maya Silver is the co-author of My Parent Has Cancer and It Really Sucks: Real Life Advice from Real Life Teens (with her father, Marc Silver). She was 15 when her mother was diagnosed with triple-negative breast cancer. She lives in Crested Butte, Colorado. The book is now available through Amazon.
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BY GUEST BLOGGER | FEBRUARY 24, 2013
Last night was the dance party at C4YW. In my opinion it is the pinnacle of the conference.
We survivors can be a very emotional group, often laughing and crying simultaneously. At this dance party, we kick the crying to the curb.
The energy that fills the ballroom is like nothing I've felt anywhere else. Every year I look forward to filling my spiritual tank full of it.
It is a celebration of us. And by golly we deserve to celebrate! If ever there was a time when a room full of women were truly "dancing like no one is watching," this is the place.
CURE invited Lori Toombs to share her experience at the C4YW (conference for young women affected by breast cancer) being held in Seattle this weekend. The conference is sponsored by Young Survival Coalition and Living Beyond Breast Cancer.
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BY GUEST BLOGGER | FEBRUARY 24, 2013
I attended my first C4YW (conference for young women) in 2008. It was such an amazing experience that I have wanted to come back year after year. This year marks my fifth. (I had to miss it 2011.)
On Friday night, I taught a belly dancing class for attendees. I led the class for the first time at last year's conference in New Orleans. It received such wonderful reviews that I had the honor of being invited back.
I've been belly dancing for more than 20 years and teaching for more than 10. I danced throughout my treatment and doing so helped me regain flexibility and range of motion, as well as empower my post chemo and mastectomy body.
I tell bits of my own story as we drop this or shimmy that. There are nods and looks of "yep, been there" from the faces before me. You can imagine the bevy of comments from the peanut gallery as I explain doing chest lifts or offer the helpful hint that if you hold your shoulder blades together when you shoulder shimmy "the girls"--if you have them, won't jiggle as much.
I imagine many people might expect this conference to be a serious place with an overall veil of sadness and tragedy. There are hints of those things here, but they are very much over shadowed by the strong, determined young women who are here to educate themselves to better advocate for their own health and that of others, and by all of the laughter joy and beauty that abounds.
CURE invited Lori Toombs to share her experience at the C4YW (conference for young women affected by breast cancer) being held in Seattle this weekend. The conference is sponsored by Young Survival Coalition and Living Beyond Breast Cancer.
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BY GUEST BLOGGER | JANUARY 18, 2013
I love Mark, my husband of nearly four months, and yet I couldn't bear the thought of him touching me. Our newly wed life was not going as we had imagined. In fact, I avoided undressing in front of him and hugged the edge of our bed at night. He took his cues from me and never attempted to cross the invisible barrier in the center of our bed. I knew I wasn't being fair to him. I wanted to invite him in. I longed to be the way we were before, but I just couldn't do it.
At the time, I couldn't see it yet, but today I know am a survivor; a survivor of gynecological cancer. Not once, but twice. My body had been ravaged by two surgeries: one vaginal and the other abdominal followed by chemo and radiation all before the age of 30. When it was all said and done, I had 2 inches of vaginal canal left and it had atrophied from the radiation treatment. I consider myself a bright girl and knew the old saying it's not about size but technique; but let's be real: with what I had left of my lady parts, every tool in the shed was going to be large and not in a good way. I was terrified. I had already suffered such severe pain during my battle I just could not wrap my brain around willingly subjecting myself to more. Sex was going to be painful and I did not want any part of that physical pain. I hadn't yet realized the emotional pain it was causing both my husband and me.
Remember the fear and anticipation you had the first time you had sex? Now imagine doing it with "damaged goods." At least the first time around I didn't know what sex was supposed to feel like. Therefore, that first guy didn't have much to live up to. Today, the stakes were higher. I desperately wanted to feel normal. I wanted my new husband to still find me sexy and desire me. I wanted an orgasm and for him to enjoy being inside me, but the fear of pain paralyzed me.
The pressure was intense. Neither of us wanted to hurt the other or be disappointed ourselves. So we did nothing. We didn't talk about it. We acted like it wasn't there. Suddenly, I found myself insecure for the first time ever. When he'd go out for a drink with his brother to unwind, I couldn't resist imagining some hot, sexy girl making a move on him. Hell, he was hot, young, and still had a fully active sex drive with no outlet at home. I realized it was crazy thinking. He loved me. He had willingly married me even knowing I had cancer. He would never stray; I knew it logically, but emotionally it was taking a toll on us.
It was then that I knew I had to act. I was ready to take my life and my sex life back. I met with my medical team and explained the situation. I could sense the tension in the room; even the doctors were uncomfortable with the sex topic. Immediately, I was handed a set of dilators without much explanation.
At home, I opened the box to find what looked like candle sticks with a rounded top. Was this a bad joke, I wondered. The length of each dilator was the same but the diameters were not; I had small, medium and large. I decided to share my new tools with Mark. I could see the curiosity on his face. I explained their purpose was to help stretch my vaginal walls in hope of someday enjoying sex again. Even as I explained what they were, I secretly wondered why they were so sterile and boring looking. I imagined them being replicas of an 1800's dildo.
We decided to do the dilation together. Some couples eat popcorn while watching TV; we dilated.
We agreed to take the process of rediscovery slowly. We drank wine and played music. Naked cuddle time became our favorite pastime along with hot baths. It was so nice to be close and feel physically connected again. Slowly, I became more comfortable in my new normal.
Then one night I sat on the bed and said, "Do you want to f*#k?" I think Mark almost fell over. He jumped at the opportunity but made sure I knew we didn't have to. But we did. We had to try sometime, and my doctors kept saying, "use it or lose it." The vagina is a muscle and stretches for childbirth, so surely it would stretch for sex. At least that's what I told myself while searching for the courage to try. That first night, I held a pillow over my head and cried. I only allowed him a few minutes of penetration and it felt like a knife slicing into me. I hurt and, at the same time, felt relieved that we had had sex. Sex was a job at that point; tough, painful and draining. We were determined to keep trying.
Eventually, we upgraded those medical dilators for something more fun. I strongly advise visiting your local pleasure store--there are all sorts of things to try and explore. The more we explored each other, the more I realized I was a big part of my own problem. My body had been through hell and back. It was just as painful as I feared. However, I was still giving into the fear. I was mentally bracing myself for the pain and tensing up when Mark touched me. My actions were actually adding to my pain and preventing me from finding any enjoyment. I had to get outside my own head. So I experimented with relaxation techniques. I found a little liquid courage helpful, along with a hot bath before the act. We indulged in more foreplay. Then it happened. I actually had an orgasm. I was back!
Achieving an orgasm after all I had experienced gave me hope. Hope that my love life could be good again, and in time, maybe even great. Repeating, that act took time. It was like finding a needle in a haystack. I wanted that needle and was determined to get it. Check out my tips for reclaiming your sex life and share my tips from my husband with your partner.
Check out my tips for reclaiming your sex life and share my tips from my husband with your partner.
Michelle Whitlock is the award-winning author of the memoir, How I Lost My Uterus and Found My Voice. Michelle's story shares her falling in love, battling HPV and cervical cancer, facing sexual dysfunction, confronting her conflicting feelings about motherhood and becoming her own best advocate. Michelle lives in Cordova, Tenn., with her husband, Mark; their daughters, Riley Grier and Shelby-Kay; and their four-legged children, George and Charlee.
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BY GUEST BLOGGER | JANUARY 17, 2013
Staying active can help reduce cancer-related fatigue and other side effects like constipation, nausea or pain during and after cancer treatments. Physical activity can also promote cancer survivorship and improved quality of life.
In the past, patients were told to rest and limit their exercise. New research demonstrates there are many benefits of maintaining or adopting a physically active lifestyle during and after treatment for your mind and body. In fact, walking for three to five hours a week at a moderate pace has been shown to reduce recurrence risk by up to 40 percent in women with breast cancer. It has also become well established that exercise is not only helpful but can be very safe for patients.
Exercise can help patients at risk for unwanted weight loss maintain their muscle mass and help those at risk for unwanted weight gain manage their weight. Moderate intensity exercise is seen as the most effective and the safest. Intense exercise or "over training" has been shown to actually suppress the immune system. Start slow and build up your intensity or duration of exercise gradually over time. Be sure to allow yourself days off when you need it.
Cancer treatment centers are offering many classes and opportunities for cancer patients and survivors to be active, such as yoga, pilates, Qi Gong, aquatics, strength training, cardiovascular and personal training sessions. Community organizations like the YMCA also offer classes specifically designed for survivors that are taught by certified experts. But you don't have to sign up for a class to get moving or reap the benefits of exercise!
Check out these simple everyday tips to boost your physical activity:
• Take public transportation or walk to run errands when feasible.
• Get off the bus or train one stop early to walk.
• Take the stairs one or more flights instead of the elevator.
• Get up from your desk and move for 5 minutes every hour.
• Sit at your desk on an exercise ball.
• Carry a basket of groceries instead of using a shopping cart.
• Do calf raises or bicep curls with 16 oz (1 pound) of canned, boxed or bottled goods while waiting in line at the store.
• Walk your dog.
• Play with your children or grandchildren at the park.
• Do light flexibility or strength exercises at home before getting into the shower each day.
Before starting any exercise program, it's important to take the necessary precautions. Speak with your doctor before starting an exercise program. Seek out a personal trainer or fitness instructor certified or with experience working with cancer survivors. The American College of Sports Medicine offers a special certification in oncology in collaboration with the American Cancer Society. To find a certified trainer in their area, use the ACSM ProFinder service at acsm.org under the "Certification" tab, or call 317-637-9200, ext. 115.
Stacy Kennedy, MPH, RD, CSO, LDN, is a senior clinical nutritionist and integrative nutritionist at Dana Farber Cancer Institute/Brigham & Women's Hospital in Boston. She also works in private practice. Stacy is featured in the award-winning documentary, "Fat, Sick and Nearly Dead" and works as the nutritionist for its affiliated company, Reboot Your Life. Stacy writes for online health and wellness sites and was recently published by the "Huffington Post." Stacy is a certified personal trainer and fitness instructor through the American College of Sports Medicine. Besides cooking and juicing, Stacy loves hiking, yoga, Barre and spending time with her husband, 2 sons, 3 dogs and friends.
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BY GUEST BLOGGER | DECEMBER 9, 2012
The best news from the 2012 San Antonio Breast Cancer Symposium is its emphasis on triple-negative breast cancer. There are so many papers presented on the subject that I can't keep up. Those of us who have been hanging around this dance for a long time--I was diagnosed in 2006--remember the frustration of seeing and hearing little about this disease from researchers and nothing from the media, who simply didn't appear to comprehend the complexity of breast cancer as a whole and were unaware that there was a type not fueled by estrogen or progesterone. And HER2? What's that?
That is changing. More than 82 clinical trials are now looking for targeted treatments for TNBC. Because TNBC is defined by what it lacks--receptors for estrogen, progesterone and HER2/neu--it also lacks a targeted therapy. Researchers are busy finding a genetic signature of subsets of TNBC that will lead to those therapies.
The San Antonio symposium this year had at least 20 papers looking at the genetics of TNBC, its response to chemo, and the potential for those targeted drugs, which no longer look as elusive as they had once been.
The highlights of research presented on TNBC this year:
Androgens
Some 75 percent of all breast cancers and 10 to 20 percent of triple negative cancers are positive for the androgen receptor. Several research studies have looked at the influence of androgen receptors on TNBC, which means new treatments plus a broader and deeper understanding of the disease. TNBC cancers that are also positive for androgen receptors are molecularly similar to prostate cancer and could potentially be treated similarly.
AR-positive tumors responded well to bicalutamine and to 17-DMAG, a drug that has been recently in clinical trials, according to research presented by Jennifer Pietenpol, PhD, director of the Vanderbilt-Ingram Cancer Center.
A phase 1 clinical trial at the University of Colorado has been studying the effectiveness of enzalutamide, a drug used to treat prostate cancer, on triple-negative. A phase 2 trial is planned at Colorado, Memorial Sloan-Kettering Cancer Center and the Karmanos Cancer Institute.
A Heterogeneous Disease
It is increasingly clear that TNBC is not one disease, but a family of diseases, some of which are highly aggressive, and some that are not aggressive at all. We're getting increasingly closer to knowing which ones are which.
"This heterogeniety highlights the need for personal medicine," said Justin M. Balko, PharmD, PhD, research faculty in the laboratory of Carlos Arteaga, MD, at the Vanderbilt-Ingram Cancer Center in Nashville, Tenn. Balko's research looked at how TNBC tumors changed genetically after neoadjuvant chemotherapy, and highlighted frequent mutations and amplifications, including the novel JAK2 genetic mutation, that can lead future research and the development of TNBC-specific drugs.
The JAK2 gene has not been observed in previous research, Balko said. The patients in the study who had the JAK2 amplification tended to have a poor prognosis, which means that JAK2 may be a key to which cases of TNBC are aggressive and which aren't. Those with JAK2 expression may respond to inhibitors currently in clinical trials for inflammatory diseases, Balko said, which could be a game changer.
In both Pietenpol and Balko's presentations, each TNBC tumor was unique, with different mixtures of similar mutations and amplifications. While TNBC tumors might share a tendency toward specific genetic mutations, the way those mutations play out differs from tumor to tumor, and may even change during treatment. Both studies showed a frequent mutation of the TP53 tumor suppressor in TNBC tumors.
Response to Chemotherapy
Breast cancer might be biologically different in very young women versus older women, according to Sibylle Loibl, MD, PhD, associate professor at the University of Frankfurt in Germany. This may explain why younger women tend to respond better to neoadjuvant chemotherapy than older women, achieving a complete pathological response more often that older women. A pathological complete response is associated with a much better prognosis.
And in a phase 3 multicenter study, women with metastatic TNBC had a more significant response to treatment with eribulin versus capecitabine, with a median overall survival of 14.4 months with eribulin compared with 9.4 months with capecitabine. The survival line for metastatic TNBC extended beyond six years.
Most Women Survive
The great majority of women with local and regional recurrences survive after five years with proper treatment. Women with estrogen-negative breast cancer benefited the most if that treatment included chemotherapy after surgery, according to the Chemotherapy as Adjuvant for Locally Recurrent Breast Cancer (CALOR) trial. Researchers reported a 67 percent disease-free survival rate after five years for those who received chemotherapy versus 35 percent for those who did not, and a 79 percent overall survival rate after five years for those who received chemotherapy and 69 percent for those who did not. A big takeaway here is that local and regional recurrences--near the site of the original primary tumor and in the lymph nodes--are highly treatable.
In the BEATRICE phase 3 trial, some 87 percent of TNBC patients with stages 1, 2 and 3 TNBC treated with current chemotherapy survived disease-free.
Such positive results are becoming common for TNBC, said Kent Osborne, MD, director of the Dan L. Duncan Cancer and the Lester and Sue Smith Breast Center at Baylor College of Medicine in Houston, Texas. "We're seeing this across the board."
Patricia Prijatel is the author of Surviving Triple-Negative Breast Cancer and The Magazine from Cover to Cover, both published by Oxford University Press, and the founder and editor of the Positives About Negative blog. She is the E.T. Meredith Distinguished Professor Emerita, the former director of the School of Journalism and Mass Communications, and founder of the E.T. Meredith Center for Magazine Studies at Drake University.
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BY GUEST BLOGGER | DECEMBER 5, 2012
This plane is full of doctors. I know this because, when a woman faints two seats in front of me and the flight attendant asks for a doctor, about half the passengers stand up. They are all going from Chicago to the San Antonio Breast Cancer Symposium, which is where I am headed.
The woman has diabetes and her blood sugar is seriously off balance. The doctor sitting in front of her gets her orange juice, a little sugar, and she starts to respond. He is calm, kindly, a man you would trust with your life. If I ever get sick again, I think, I want him. Apparently once a cancer patient, always a cancer patient, on the lookout for the best docs.
Ultimately, the doctor stabilizes the woman, so we continue on our way. And then I realize that all these docs are sitting back in coach class with me. It makes me like them more. These folks are real people. Of course, the plane is so small it could be wrapped and put under a Christmas tree, and there are probably only six seats in first class, so that was not an option. Still, they are sitting here in the cheap seats with me. Good for them.
The woman next to me is an oncologist and we share our experiences with triple-negative breast cancer, which is the subtype I had and the type I write about. She treats me like a colleague, takes me seriously, applauds my research on the disease, tells me about some of her patients and TNBC.
When the plane lands, we exchange business cards. I plan to communicate with her to continue our conversation, ask her about the young woman she mentioned whose cancer had recurred, perhaps ask if she would be a sounding board for some of the questions I get that are beyond my level of understanding.
This is a new experience for me, hobnobbing with the doctors. I have been a patient, going through the full plate of cancer treatments, so I have had close interaction with my surgeon, several oncologists, and a radiation oncologist. But the patient-doctor relationship, logically, and of necessity, is unequal. They are the experts, we are not, although it is our body going through all of this. After treatment, I began researching TNBC, first for my own benefit, then as a blog, and a book. But I had my nose in research papers and my work was solitary, done in my home office, interviewing the experts on the phone.
This business of sitting next to them and talking cancer, this is all new.
At the symposium, I sit in a packed ballroom while researchers explain how genetic research demonstrates that TNBC is not one disease, but many, and that they are getting wonderfully close to understanding how the subsets within subsets behave, which will ultimately lead to targeted drugs.
Yay! I think. I take copious notes and look forward to translating this in subsequent articles.
As I walk out of the ballroom, I talk to another oncologist and ask for some clarification of the research. He is thoughtful, helpful, appreciative of my interest, and he takes me seriously.
I am learning a great deal. My head is sparking with what I have soaked in just this afternoon. My feet hurt and my back is sore from carting my computer around. But it is worth it.
And the big lesson today is that this symposium teems with good people. Folks with amazing brains who are using them to help make us healthy. Nice people who really want us to understand what they're discovering.
I'll write more soon about the information they have shared, but for now, the fact that they are working hard and smart to understand this tricky form of cancer gives me great hope. And, while I want the information, I crave the hope.
Patricia Prijatel is the author of Surviving Triple-Negative Breast Cancer and The Magazine from Cover to Cover, both published by Oxford University Press, and the founder and editor of the Positives About Negative blog. She is the E.T. Meredith Distinguished Professor Emerita, the former director of the School of Journalism and Mass Communications, and founder of the E.T. Meredith Center for Magazine Studies at Drake University.
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BY GUEST BLOGGER | NOVEMBER 19, 2012
A diagnosis of cancer always comes with great shock, and a sense that the world has turned upside down and inside out. The certainty with which we all live our lives is shattered forever and life seems as if it will never be the same. A diagnosis of prostate cancer is no different, and like other cancers, the reaction of the partner/spouse is important. Cancer is always a couple's issue, but never more so than in the case of prostate cancer. Here are some pointers to help make your experience as a couple dealing with prostate cancer more bearable:
One of the only gifts from a diagnosis of prostate cancer is the gift of time. Even though the North American way of thinking about cancer is to get it out now, with prostate cancer you have time to consider all treatment options because it is generally a slow-growing cancer. Treatment does not have to take place immediately so take a deep breath, slow down and think about what comes next.
Some men don't need treatment at all and it may be safe just to watch the cancer with repeated tests and act only if something changes (this is called active surveillance). Depending on your partner's age and the stage of his disease, it may be possible to actively monitor the cancer and avoid treatment and its side effects.
Treatment is going to affect his quality of life, and this will have a profound affect on you as his partner/spouse. During the turbulent time after diagnosis, it may seem that you have to decide between life and sex and that choice may not seem difficult. This is rarely the case. Treatment of prostate cancer will affect his ability to have erections, but you do not have to choose between erections and life; prostate cancer tends not to be a lethal form of cancer for most men.
Loss of erections will profoundly affect your sex life but also his sense of self and confidence as a man. These will impact on you too so before rushing into treatment you need to talk about how you will manage your relationship with an altered sex life and a man who may not see himself the same way.
Even though he may not want you to, go with him to every appointment. Four ears are always better than two and having someone with him to hear the same information, take notes and ask questions will help you to feel more in control and help him make the necessary decisions.
Be careful about the stories other men with this cancer tell you. They often minimize their side effects, especially bladder leakage and erectile problems, because these are embarrassing. You may want to talk to the partners/spouses of these men to hear their side of the story; they often don't mesh!
Get a second opinion from another kind of specialist who treats prostate cancer. So if a urologist (who is a surgeon) recommends surgery, ask to see a radiation oncologist who treats prostate cancer with radiation. Weigh the pros and cons of the side effects of both kinds of treatment before making a decision. Remember, you have time!
Be wary of stories that you read on the internet. They are often 'fronts' for treatments that have no proof and the experience of someone else, if they actually exist, will not be the same experience that you and your spouse may have. If something sounds too good to be true, then it probably is. Stick to valid websites such as the American Cancer Society, and large treatment centers like the Mayo Clinic. But remember that they are trying to attract customers (patients) too!
Finally, remember that this is a very curable cancer with 97 percent of men surviving five or more years after diagnosis. Your partner/spouse needs you to support and care for him, and being an active part of his decision making process is a vital role that you can play.
Anne Katz, PhD, RN, is an author and sexuality counselor at CancerCare Manitoba. Her latest book is "Prostate Cancer and the Man You Love: Supporting and Caring for Your Partner" published by Rowman & Littlefield. It is available online at Rowman.com and through Amazon and Barnes & Noble.
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