Susan G. Komen Kansas: January 2014

Friday, January 24, 2014

January News 2014

Survivorship, the“Cost of the Cure” to Our Lives

Did you know that there are more than 2.9 million breast cancer survivors in the U.S.? As we continue to work so that the number of people who have had breast cancer drops, the sheer number of survivors shows the great strides that have been made in early detection and treatment. Today, most breast cancer survivors lead long and fulfilling lives.

When breast cancer treatment begins, many people think that their last day of treatment will signal the end of this challenge in their lives. But some report ongoing physical and emotional issues that they did not expect. Lasting side effects of treatment and emotional concerns are common. Susan G. Komen has partnered with The Dr. Susan Love Research Foundation in the Collateral Damage from Breast Cancer Treatment project, gathering topics and questions to help document the “cost of the cure” to our lives.

For more on this topic

Research Hot Topic –Survivorship

As the number of cancer survivors grows, so does the number of research dollars being spent on survivorship research. Currently there is close to $6M in open research grants through the National Cancer Institute specific to breast cancer survivorship research. Each year Susan G. Komen invests 13% of their research in survivorship topics.

For more on this topic

Cards for the Cure

Spike Andersondiscovered Texas Hold’em while in college, playing baseball at WichitaState. After a poker tournament to raise scholarship funds for graduates of his alma mater, ValleyCenter High School, a seed was planted. In 2011, Andersonmade his idea of a large scale poker tournament to benefit a national organization a reality, and Cards for the Cure was born.

For more on this topic

Survivor Tip

Visions of cake and celebration often go along with looking forward to the last day of treatment. But many survivors report that they feel let down, sad, tired and anxious. You find yourself wondering, “Will I ever feel normal again?” Friends and family often think that just because your active treatments are over, you are fully recovered. However, it may take as long as you were in treatment or longer to recover physically and emotionally. It is okay to take the time you need before agreeing to new obligations. If you find you have trouble saying “no” it may help to have a script ready. Practice saying, “No thanks, I’d rather not take on anything extra right now.”

Grantee Spotlight

How do you encourage women (and men) to pay attention to their breast health? According to Erma Patterson, BSN, Health Educator with the Geary County Health Dept., you go to the churches, you go to the beauty shops, and you talk to people at Wal-Mart or Dillons.

“The town knows me as the breast cancer lady,” she said. “And that’s okay.”

For more on this topic

Cards for the Cure

Spike Anderson discovered Texas Hold’em while in college, playing baseball at Wichita State. After a poker tournament to raise scholarship funds for graduates of his alma mater, Valley Center High School, a seed was planted. In 2011, Anderson made his idea of a large scale poker tournament to benefit a national organization a reality, and Cards for the Cure was born.

Looking at its fourth year, the tournament, which donates 100% of the net proceeds to Susan G. Komen, is continuing to grow. New this year is the addition of the High Roller Tournament, Friday, January 24^th, at 6:30 pm. Looking for ways to include more women, also new for 2014 is the Ladies Only Poker Palooza, Saturday, January 25^th, at 4:00 pm. Returning is the VIP Party, Friday, January 24^th, at the Wichita Boathouse from 6:30-9:00 pm. The Kansas Poker Tournament main event is Saturday, January 25^th, beginning at 10:00 am. All three tournaments will be at the Beech Activity Center.

Although Anderson sometimes jokes that the event was at first just an excuse to have a poker tournament, in the years since the first tournament the disease has touched him personally. In just the nine months since forming their advisory board, two breast cancer diagnoses have had a direct impact on the group. This has personalized the cause he supports and the impact the tournament has on people’s lives.

For more information

Research Hot Topic – Survivorship

One project that we can participate in is the HOW project. The HOW Study is a first-of-its-kind international online study for women and men with and without a history of breast cancer. HOW will study long-term breast cancer survivors in order to get a better understanding of how they are beating the odds as well as follow those without a history of breast cancer for information on risk.

Once you sign up to become a member of the HOW Study, you will receive periodic questionnaires that will ask questions about different health and exposure topics. Each new questionnaire will be released in a "Call to Action" email and will address a specific topic, such as reproductive health, cancer history (for those with breast cancer), environmental exposures, and much, much more. Each questionnaire should take about 60-90 minutes to fill out, and you will get a new one every three to four months.

Click here for more information and to JOIN

Survivorship, the “Cost of the Cure” to Our Lives

By asking breast cancer survivors about the collateral damage they experienced from their breast cancer treatments then comparing their experiences to those without a history of breast cancer, we can better document the side effects attributable to various treatments. Many of the collateral damage issues that are being reported were not unexpected, such as lymphedema, depression/anxiety, fatigue, memory problems/chemobrain, and sexual problems. Other side effects that are less recognized include issues with toenails and fingernails as well as dripping noses in those taking Herceptin.

While most of us would accept the consequences of treatment to save our lives, of particular interest was the fact that many were not told, or at least did not remember being told, about many of the side effects that are already well recognized. For example, you will always be numb after a mastectomy and will never get the feeling back. This has to do with the way the operation is done– cutting all the sensory nerves. Other long term consequences such as neuropathy, pins and needles, and sensory problems from the chemotherapy also don’t get better. Some of the sexual issues, such as loss of libido or dryness, can be caused by drugs like aromatase inhibitors (AI’s) which could resolve once you stop taking them, but if they are caused by menopause, they probably won’t resolve.

Be watching for the Collateral Damage questionnaire in the spring. This will go out to all HOW participants, both those with and without a previous diagnosis of breast cancer, because only by comparing the women who have undergone treatment to those that have not, will we be able to figure out what is normal aging or menopause-related, versus a result of the treatment.

Monday, January 6, 2014

Long-term Survivorship Care Plans

January is often a time of reflection and new beginnings as we look toward a new year. For a breast cancer survivor, there are many emotions and thoughts that come with ringing in the next year. As we celebrate another year of life, many of us may worry about what this year might bring. Taking action is often a good way to handle fears. As we look to 2014 I plan to add “I resolve to plan for my long-term survivorship care.” to my list of resolutions. So what is a long-term survivorship care plan?

Survivorship care plans help you keep all of your information in one place, and they help guide your doctors if you develop health issues later in life that could be related to cancer treatment. You also have a record of your treatment if your physician leaves, if you move or your records get destroyed.

As you and your doctor put together your plan, include information about:

Your final pathology report from after your surgery, including the cancer stage and characteristics of the tumor (ER, PR and HER2 status)
Treatments and doses
Problems with treatment and side effects
Medicines you took to manage side effects
Possible long-term side effects
A schedule for future follow-up tests and appointments
Recommended screening and surveillance tests for breast and other cancers
Ways to cope with ongoing emotional concerns related to breast cancer
General health and wellness recommendations like diet and exercise
Suggestions for the future such as genetic testing or reconstruction

A post-treatment care plan is a living document that grows over time as your health changes, so it must include recommendations for future care. Among the issues your doctor may explore with you are weight, diet and alcohol consumption, which could impact your overall health and risk for recurrence.

The best time to create a plan is immediately after treatment, but if you didn’t do so, or if you are in ongoing treatment, it is not too late. The five-year mark, or after completing hormonal or targeted treatment, are also great times to create or update a care plan. Update your plan any time you have a significant change to your health—even years after you create the plan. Ask your physician to revise your plan after follow-up tests and surgeries or if you have long-term side effects.