Many of the women we talk to say it’s difficult to get through the holiday season. Whether newly diagnosed, undergoing treatment, or in recovery the holidays can bring stress and set off a series of emotions that you may not know how to handle. Even caregivers often find themselves not wanting to celebrate the holidays because of feelings of guilt. For those of us who have lost a loved one, the holidays often underscore their absence and all the feelings associated with that void.
LBBC’s Guide to Understanding Your Emotions is a good resource to help you understand the range of feelings you may be experiencing. The guide will explain when and how to ask for emotional support and suggest steps you can take to move forward with your life.
Another good resource is LBBC’s Survivor’s Helpline, (888) 753-LBBC (5222), a national, toll-free telephone service staffed by trained volunteers who are also breast cancer survivors. Helpline volunteers are dedicated to offering guidance, information and hope in a confidential setting. This service is not intended as a substitute or replacement for professional counseling or medical services, but sometimes it helps to talk to someone who has “been there.”
If you feel stress around the holidays, consider the following tips provided by Richard Hara of CancerCare to get through this tough period:
Keep your expectations realistic: Know your physical limitations and give yourself extra time to rest as needed; anticipate that strong emotions will hit you unexpectedly, and give yourself permission to be less than “joyful” all the time.
Delegate— let others help: Creating a list of tasks you can ask others to take on for you accomplishes two things: it helps distribute responsibilities in a more manageable way, and people feel more comfortable when given something specific to do to help.
Save your energy for the important stuff: In other words, prioritize and pace yourself. If you need to turn in early, or aren’t able to eat in your accustomed way, just let people know. Everything doesn’t have to be done all at once: enjoy what you can now, and look forward to enjoying more in the future. Maintaining holiday traditions is important, but that doesn’t mean they can’t be altered or replaced with new ones.
Share your feelings with others: Don’t be afraid to express your feelings and concerns to family and friends. But consider in advance how much you feel comfortable sharing, and how much the other person may be able to hear. These are judgment calls, and not easy to make, but remember that the goal is not so much about imparting information, as it is supporting and enriching relationships.
How do you cope with the holidays? What advice do you have for women who may be struggling to get through this holiday season?
This entry was written by Hester Hill Schnipper, chief in oncology social work at Beth Israel Deaconess Medical Center. Ms. Schnipper is a member of LBBC’s medical advisory board:
You’ve been diagnosed with breast cancer. You’re probably feeling confused, scared, overwhelmed, or all of the above. Now it’s time to start making decisions about treatment. How do you go about tackling such an important decision?
Breast cancer is a complicated disease that is almost always treated by a team of physicians, nurses, oncology social workers, techs, and other health professionals. In the beginning, it can be difficult to make the best choices or know how to best interact with your team.
How do I make the best choice?
There are almost always decisions to be made about which doctors or which hospitals seem right for you. In large cities, there are many fine hospitals, but here’s the question: where will you feel the most comfortable and best cared for?
In more rural areas, there are fewer possibilities, but you may want to consider the possibility of traveling (at least for initial consultations, surgery, and/or treatment planning). At my hospital in Boston, we often take care of newly diagnosed women who have breast surgery here and then meet with radiation and medical oncologists to decide on the best treatment plan. That woman can then receive radiation or chemotherapy closer to home.
How do I find the best doctors?
Your GYN or PCP may make suggestions and referrals, but you are not bound to those ideas. Ask around! If you can, talk with other women who have been treated for breast cancer and ask if they were happy with their care. Once you meet with a doctor, get a second opinion.
My own rule of thumb is this: “If you are considering a second opinion, you should get it. You don’t want to look back later and wish that you had done so.” You will know when you have found the right doctors. You must trust, respect, and like them. The human connection is very important, and you deserve the best possible care.
I’ve started treatment. Now what?
Once you have begun treatment, you will discover how closely you work with your medical team. For the next months, you will see more of them than you do of most of your friends, and you will come to rely upon them for much of your support and well-being. It is smart to ask them how they prefer to be contacted. After all, who’s available 24/7? Here are some good questions to ask:
How quickly will someone call you back if you have a problem during the workday or in the middle of the night?
Does your doctor like to communicate via email?
What is their coverage if they are away or unavailable?
Do they want to hear from you about any medical concerns or should those concerns go to your PCP first?
Different providers have different systems, but you should be able to access them quickly.
Thoughts to leave you with…
Most of the time, you’ll establish strong relationships with your healthcare team. You can maximize this likelihood by remembering the old Golden Rule: Do unto others as you would have them do unto you. This translates to being on time for your appointments, organizing your questions, being clear with your concerns, expressing your needs, and expecting that your health care team will do the same. If you are not feeling heard or well cared-for… speak up. Remember that doctors are human, too, and describing your feelings in a calm manner will reduce the likelihood of them becoming defensive.
If, for example, you feel that you are not being given time to ask all your questions, say something like: “I understand that you have many patients and are very busy. However, when I am with you, I need to feel that all of your attention is with me. I need you to answer all my questions and listen to my fears. Is there something I could do differently to make this work better for us both?”
The bottom line
You’re hiring these specialists to provide you with care, and they should be giving you their very best. You deserve nothing less.
How did you go about making treatment decisions? What advice do you have for women who may be struggling to communicate with their healthcare team?
We at LBBC are committed to finding cool, unique opportunities for breast cancer survivors and caregivers to share their stories and get support. We’ve found something amazing and can’t wait to share it with all of you…
A free cruise!
Amoena USA Corporation and Young Survival Coalition are celebrating breast cancer survivors in a unique way. They’re holding a contest. The survivor whose inspirational story they choose (a hard job, we’re sure!) will be the winner.
It’s easy. Simply fill out the online form. Then write an inspirational story about a woman who never gave up and the people who encouraged her to keep going.
What kinds of stories do they want?
Amoena wants to hear stories about the following:
Young mothers who went through treatment
Women who stayed positive, despite their diagnosis
Caregivers who helped their loved ones through diagnosis and stayed by their side every step of the way
Contest Details
Nominations are being accepted now through March 1, 2010. Go here for complete contest details. And did we mention that Young Survival Coalition will cover all travel costs for the winner and a guest?
Pretty amazing stuff!
We wouldn’t mind a week in the sun, and we’re sure you wouldn’t either. So start writing! And while you’re at it, share your stories with us by leaving a comment below with your email address. You might just see them featured in our blog or on our website.
USPSTF “grades” its recommendations (A, B, C, etc.); BSE received a “D” grade, meaning the task force has “moderate or high certainty that the service has no net benefit or that the harms outweigh the benefits.” These recommendations apply to large groups of, rather than individual, women.
The task force’s recommendations weighed heavily on my mind in the days following their release, and not just because of their implications for Living Beyond Breast Cancer. Four days earlier, I had found a lump in my own breast. I am 38 years old, have not had breast cancer and do not regularly perform BSE. I saw the mass while standing in front of a mirror.
While I waited for tests, I followed the arguments over BSE and mammography with equal levels of detachment and fear, helping our staff to work through the evidence to formulate LBBC’s recommendation. What we knew, but what many of you may have discovered for the first time, is that questions about the effectiveness of BSE are not new. The American Cancer Society does not endorse BSE, saying it is an “option” for women, starting in their 20s. On its Web site, the National Cancer Institute writes that “formal instruction and encouragement to perform breast self-examinations leads to more breast biopsies and to the diagnosis of more benign breast legions.” And the National Breast Cancer Coalition says that “it is unclear whether BSE aids women in discovering breast cancer…[and] resources would be better spent on funding more research studies to identify interventions that really work, such as better ways to detect, treat and prevent breast cancer.”
Are these trusted sources telling us to ignore the bumps and lumps in our breasts? Of course not. That would be ridiculous (as well as irresponsible and patronizing). What they are saying is that clinical trials have shown BSE to be ineffective at the two primary goals of cancer screening: preventing death and finding disease early. By the time we feel (or see) a mass, by a formal method like BSE or by any of the informal ways we touch our breasts, the biological makeup of that mass has far greater influence on our survival than how we found it.
Even though I knew the facts, I questioned myself. Could I have found the mass earlier? Would it have made a difference? We all struggle with these questions, but in clinical trials the numbers simply don’t add up. At LBBC, our view is that each woman should decide for herself. Some questions to consider:
Do you have a family history of breast or ovarian cancer that puts you at higher risk?
Do you feel educated about what to do if you feel a change in your breast?
Do you know what your breasts normally feel like?
Do you handle your breasts frequently and intimately enough to notice changes?
That last question is not irrelevant. Formal training in the handling of our breasts—which is, after all, all BSE is—should be unnecessary, but often we are squeamish about touching and discussing our breasts. LBBC encourages you to speak openly with children, at home and in schools, so they learn early in life what their breasts normally feel like and can easily recognize potential problems. As advocates, we need to do a better job of raising awareness of the importance of knowing our own bodies.
In late November I got the happy news that I have a sebaceous cyst, a harmless mass made up of fat. By then, my colleagues and I had already worked through LBBC’s formal position. I feel confident about that position professionally, but I feel equally good about it personally.
By the way, it wasn’t a mammogram that gave the radiologist a definitive finding about my cyst. It was an ultrasound.
How do you feel about the task force’s recommendations on breast self-exams? Continue the conversation here or on Facebook!
This entry was written by Karen Gagnier, a yoga instructor at Focus Fitness:
I initially tried yoga because I was a runner with tight hips and hamstrings, and because I had a good friend who continued to encourage (pester) me to join her in a yoga class. I had heard and read about the many benefits of yoga but didn’t think I was a “yoga-type” gal and all that talk about breathing seemed to me to be a waste of time. But my friend persisted, and I joined her for some yoga. The instructor made a point that yoga shouldn’t be judged on a single basis, that in order to experience the benefits, one should commit to several weeks of yoga—and I did. Within two months my hips and hamstrings were more flexible and I was stronger.
Then my mother got lung cancer and I found that yoga was what helped me cope. Not only was I developing physical strength, I was developing mental stamina through my yoga practice. I wasn’t aware of being better able to cope, I just knew that I was better equipped to handle the stress of caring for a dying mother.
Then it happened.
Six months later I was diagnosed with breast cancer. Through it all–through the chemotherapy, the mastectomy, and the radiation, yoga was there for me as a tool… to help myself physically, mentally and spiritually.
Post cancer treatment, we all know that we experience a “new normal.” As a mother of four (ages 14 thru 21) I was ready to do something for myself, and I wanted that something to include giving back to others. That is when I decided to become a yoga instructor and more specifically, a yoga instructor for cancer survivors. Yoga had a huge impact on me and I wanted to pay it forward. This was confirmed when I took an OM yoga class in NYC for cancer survivors. I was overwhelmed emotionally when I walked into the studio and saw women of all ages, shapes and sizes, with their bald heads, bandanas, and wigs, but I left empowered. Being in the presence of these proactive women taking charge of their health was where I wanted to be. I wanted to be connected to these amazing women, and involved in spreading the word to other women about the many compelling benefits of yoga.
I now teach a yoga for cancer survivors class at Focus Fitness studio in Bryn Mawr and continue to be in awe of the ladies who show up to class: different ages, different bodies, different stories but all taking charge of their health. There are many women who have never taken a yoga class, or any type of exercise class, but are willing to open themselves up to new possibilities, and what I have learned is that yoga in its purest form is about meeting the individual wherever she is. Yoga is a personal experience that is accessible to all. The first and most important step is to simply show up, and just do what you can. The benefits will unfold.
Karen will teach others about the physical & emotional benefits of yoga at our December 14 program, Yoga: Uniting, Body, Mind, Spirit. Haven’t tried yoga before? Use this program as your opportunity to pay it forward—by showing up and supporting women with breast cancer. It’s that easy.
Did we mention we hold a fundraiser called Yoga Unites for Living Beyond Breast Cancer every May? The event is a basic, outdoor yoga class on the steps of the Philadelphia Museum of Art. It’s a class for people of all ages and skill levels. This year’s event will be held on Sunday, May 16, 2010. It’s a great opportunity to come together as a community in support of women with breast cancer & to promote healthy living.
Why not go one step further and form a fundraising team? Whatever you raise is your donation to LBBC. Check out the event website for more details. We’ve also included some photos from last year below. Enjoy!
This year we’ll be celebrating the 10th year of our Annual Conference for Young Women Affected by Breast Cancer. We host the conference with the Young Survival Coalition. This year’s conference will be in Atlanta and features a variety of workshops on topics like lymphedema, yoga, nutrition, advanced breast cancer, fertility/pregnancy, managing emotions, triple-negative breast cancer, caregiving and more. There’s also a Pure Romance pajama party on Friday night and a night of dancing on Saturday. The whole weekend will be about you getting the information you need & networking with other young women. Who knows, you may meet a lifelong friend!
The conference website has all the information on registration, the weekend agenda, workshops, speakers, things to do in Atlanta, etc. If you need financial assistance, we have a limited number of travel grants and fee waivers. These go fast, so don’t wait to apply!
If you’re unsure about whether to attend the conference, check out the video below. Many young women have found incredible support simply by attending the conference and meeting others like them. Give it a chance. It just may change your life.
I’ve been diagnosed twice now, and I think it does get a little easier each time. Has that been your experience?
For me, the worst day was day one –the day I heard that the breast cancer had returned. It was five years after my diagnosis (tubular, no lymph nodes, lumpectomy, radiation) and just as I was finally getting used to the idea that I was really, really going to be finished with “this”. So the diagnosis floored me. Literally. I was on the floor.
The second time, 17 years later, was easier. I had been dealing with back pain, couldn’t figure out the source (“it” was always in the back of my mind) and then we got the answer. More lesions in my back.
So how did I deal with the roller coaster of emotions? And how do you?
Lots of ways: panic, crying, fear. But I think the real answer, for me, was to get as much information as I needed (NOT as much information as I could find-two different things), try to make smart decisions, go to smart doctors, follow good advice.
And I see my therapist. I listen to what he has to say. I do relaxation exercises. I try to eat sensibly. I exercise when I’m feeling well. I avoid people who don’t make me happy. I do what I want to do. I keep track of life: I keep a journal and I keep a log of how I’m feeling. I acknowledge that this stinks and that I’m angry about it. I’m honest with the people who care about me.
That’s what I do. It might not work for you.
You might need to yell more or smile more or throw things or embrace things. You might need to dress in pink….or avoid pink at all costs. You might need to indulge your inner-kvetch or indulge your inner-cheerleader. Whatever works. Get help. This stinks. You don’t have to do it alone. Go to a support group if that works for you. Or go for long walks. Pay attention to what your heart and head are telling you, not what your family/neighbors/friends think is right for you. Do what you need to do. Know that you can get through lots of bad stuff because you’ve already done it and you’ve seen your strength. And your weaknesses. Acknowledge both.
Ok, enough soap box. I have advanced breast cancer. I wish I didn’t. But either way, I still get to make a life for myself. Thank God for that.
Want to continue the conversation? Become a fan of LBBC on Facebook or follow us on Twitter. And if you need to speak with someone who’s been through the same thing, call our Survivors’ Helpline at (888) 753-5222. Trained volunteers and breast cancer survivors are waiting to talk with you.
Each day, we here at LBBC are amazed by the generosity and commitment of those who support our programs and services. Amazed! It’s important to us that there are lots of different ways for our supporters – new and longstanding – to help us get these programs out to the women who need them most. We know that you are busy, engaged, diverse, and motivated to help, so we have made sure that there are so many unique ways to support the organization! Here is just a sampling…
Shop for the Cause
Did you know that many Philadelphia area retailers join forces with LBBC to host “mini events” in their store to raise money for LBBC’s programs? For a modest donation, guests enjoy benefits like big discounts on purchases, “first look” at seasonal items, private shopping, and often wine and hors d’ouevres.
Talk about guilt-free shopping!
A full list of upcoming events is always available. The next one is at J.CREW in Ardmore this Sunday, December 6th, 6 to 8 pm. Come and get a jump on your holiday purchases and know that a portion of the proceeds will go directly to our programs and services!
Skirt boutique's shopping event to benefit LBBC
Involve the kids
Teaching the values of giving back to our children not only helps our community now, but will build a stronger future for everyone. We are often surprised that it is this younger generation that comes up with the most creative ideas for raising money to support women affected by breast cancer.
Students and teachers at Gwynnedd-Mercy Academy Elementary raised money for a breast cancer “dress down day,” where jeans and pink tops showed their support.
Students at The Shipley School were joined by LBBC staff member, Lisa Black, to talk about breast cancer and raise money for Breast Cancer Awareness Month, resulting in well over $2,000 of donations!
Maybe your child’s school would be interested in joining in on the fun!
Volunteers help us stuff bags for our annual Yoga Unites event
Make all that time on Facebook worth it!
Facebook has developed a powerful – and easy – tool to raise money for the organizations in which you believe…just by logging on and spreading the word!
Causes | Facebookis an application that can connect your friends with LBBC and raise money in the process. Already, our supporters have celebrated birthdays and anniversaries of their own cancer treatment by asking friends and families to give modest increments of money.
Celebrate your next birthday by asking friends and family to donate to LBBC instead of sending cards or another scarf you just don’t need. Has it been 10 years since you found out you were cancer-free? Encourage people to give $10 in support of LBBC’s programs!
Tap your inner Martha
Recently, our friends Judy and Jerry Herman were looking for a new way to support LBBC. They really wanted to do something special and Judy had a phenomenal chocolate chip banana cake recipe to share. Why not sell these cakes to raise money?
What started out as an afternoon of baking turned into a force of culinary nature! They have raised over $4,000$5600(!) already and orders are still coming in as word spreads. Even CBS took note and profiled them on their “Brotherly Love” segment.
Never would the Herman’s have guessed their crazy idea would be so successful! Which goes to show that if you have been thinking about trying something new to support the women affected by breast cancer…give it a shot!
Judy (second in from the right) and her "Angel Bakers"
Jayme Gittingsis the Manager of Individual Giving at LBBC and always interested in hearing the next “crazy” idea for raising money to support woman affected by breast cancer. Her door (and inbox) are always open, so feel free to drop her an email or call (484-708-1806) to talk about the next shopping event or your big idea for helping support LBBC. Remember, the sky is the limit!
Triple negative breast cancer is a subtype of breast cancer that lacks three receptors known to fuel most breast cancers: estrogen receptors, progesterone receptors or human epidermal growth factor receptor 2 (HER2). 15% of women will be diagnosed with this type of breast cancer. Among younger women with breast cancer, up to 1 in 5 will be diagnosed with triple negative breast cancer. Triple negative breast cancer is also the most common type of breast cancer diagnosed in women who carry an altered BRCA1 gene, which increases their likelihood of being diagnosed with breast cancer. Extensive research has taught doctors that triple negative breast cancer behaves aggressively and, without treatment, has a high chance of spreading or metastasizing. Because of the risk this type of breast cancer poses, doctors are continuing to learn more about it in order to find better treatments.
For decades, doctors have relied on chemotherapy as the only option to treat triple negative breast cancers. Though triple negative breast cancer is an aggressive form, it is also the type of breast cancer that is most likely to benefit from chemotherapy. Certain chemotherapies or combinations of chemotherapy appear to be effective in treating triple negative breast cancer and ongoing studies are looking at new combinations of these drugs specifically in triple negative tumors, both in the advanced and early stage.
However, chemotherapy alone is not sufficient. Scientific research has identified a large number of other pathways that breast cancer cells use to sustain themselves and eventually spread. Identifying these pathways shows promise for treating triple negative breast cancer and clinical trials are now ongoing that are specific for women with triple negative breast cancer.
Most recently, significant results have been seen with the PARP inhibitors. These drugs work by blocking enzymes in cancer cells that help them repair their own damaged DNA. When cancer cells cannot repair their DNA after treatment, the cells eventually die. This mechanism appears to be especially important for BRCA gene altered cancers and triple negative cancers. In combination with chemotherapy, the PARP inhibitors significantly improved responses for women with advanced breast cancer. Several different types of PARP inhibitors are now being studied specifically for triple negative cancers, either as single drug therapy or in combination with other standard forms of chemotherapy. Go here to find more information about these trials.
Given the aggressive nature of triple negative breast cancers, it is important that you discuss treatment options with your doctor and consider participating in a clinical trial, if possible.
As always, if you have something to say, leave us a comment! Or start a discussion on Facebook.
This entry was written by Virginia F. Borges, MD, MMSc. Dr. Borges is an assistant professor of medicine at the University of Colorado Health Science Center. She is also a member of our medical advisory board.
As I write this, it is 10 years ago today that I had my lumpectomy. The surgery was one week before Thanksgiving, which is the big holiday in our family. For more than 30 years we had hosted a large group at our table. Preparing that big dinner so soon after surgery was a challenge for me, but everyone pitched in and helped. The coping style in our family always includes humor. My husband was telling everyone, “Remember, when we cut the turkey, say ‘White Meat’, not ‘Breast’!”
One of our Thanksgiving dinner traditions is to go around the table and have all of us say what we are thankful for. When it was my turn, thinking of the pathology report I had received the day before, I exclaimed, “I’m thankful for clean margins and negative nodes!”
During that time, between diagnosisand surgery, after the lumpectomy, then through the months of chemotherapy and radiation that followed, so many people around me extended themselves countless times in an incredible variety of ways. My family and friends were generous in bringing us meals, taking me to treatment, sending flowers, notes and gifts. Each and every one of them touched me in a different way. They came to visit from near and far. Three of my visitors traveled from as far away as Boston and Dallas!
In one of the many books about breast cancer that I read shortly after diagnosis, I found this tip: make a list of things I needed and keep it relevant and handy. Then when someone said, “What can I do to help?” I would have a ready answer. Some examples were to have someone return a library book, stop by for a cup of tea, pick up an item at the grocery store. It made them feel good to do something that was helpful and that I actually wanted or needed.
My chemotherapy lasted six months and in the middle of that treatment I had the six weeks of radiation at a different facility. You can imagine how I was dragging, especially on the days when I had to go to both. Friends and family who took me to treatment during that time generously gave me help and support.
Someone once asked me what was the most helpful thing anyone had done for me. After reflection, I answered that it was the variety of all the different things people had done. Thinking of how much everyone did to help, support and comfort me during my treatment still fills me with a warm glow.
In the 10 years since, several people in my life have been diagnosed and treated for breast cancer. Each time I have reached out with whatever support I could give. Following the example of the many who had been there for me, I called, visited, gave gifts, sent emails, went along with them to doctors appointments and treatment, brought food, ran errands.
Now, as I approach Thanksgiving 10 years later, I reflect on how thankful I am for the wonderful people I am lucky to have in my life. They buoyed me through my treatment and in the years since. And I wonder: is there any way that I can repay them for all the kindness, help and support they have given me? Or perhaps the best way to thank them is to “pay it forward” and do for others what they so generously have done for me.
What are you thankful for? Leave a comment or share your story on our Facebook Page.
Living Beyond Breast Cancer (LBBC) is a national, nonprofit organization located outside Philadelphia. Our mission is to empower all women affected by breast cancer to live as long as possible with the best quality of life. Want to learn more or get involved? Give us a call at (610) 645-4567 or email us at mail@lbbc.org.
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