Triage Cancer Joins the Metastatic Breast Cancer Alliance!

Metastatic Breast Cancer Alliance

Triage Cancer is proud to announce that we are a new member of the Metastatic Breast Cancer Alliance! We are committed to providing education and support in an effort to ensure that the metastatic breast cancer community has access to crucial information about practical issues to improve their quality of life.

What is MBC?

Metastatic breast cancer (MBC) is cancer that originated in the breast but has spread to other parts of the body, such as liver, lung, bones and brain. MBC is the cause 40,000 deaths every year in the U.S. Learn more about MBC.

MBC Alliance Mission

Triage Cancer believes that collaboration is the key to providing valuable information and practical tools on the many issues that arise after a cancer diagnosis, particularly to underserved members of the cancer community. In alignment with our goals, the MBCA’s mission is to:

Unify the efforts of MBC Alliance members to improve the lives of, and outcomes for, those living with metastatic breast cancer and their families through increasing awareness and education about the disease and advancing policy and strategic coordination of research funding – specifically focused on metastasis – that has the potential to extend life, enhance quality of life and ultimately
to cure.”

One of the resources offered by the MBC Alliance is the Metastatic Trial Search, which is the first-ever clinical trial search engine designed specifically for people with MBC.

Metastatic trial search

Triage Cancer Resources & Tools

As a member of the MBC Alliance, we are committed to providing up-to-date and relevant resources to those coping with MBC. We offer a number of educational resources that have particular relevance to the metastatic community, such as our Quick Guides on disability insurance, clinical trials, and estate planning. Click here to watch our recent webinar on Taking Time Off Work & Disability Insurance.

Given the long-term treatment that many in the metastatic community receive, the financial burden can be significant. Triage Cancer hosts www.CancerFinances.org, which provides tailored information on topics that can have an impact on finances after a cancer diagnosis.

We also offer a number of free educational events throughout the year, which cover topics that pertain to the metastatic community:

Triage Cancer looks forward to working with the Alliance to continue to support the MBC community. For more information about the Metastatic Breast Cancer Alliance, visit www.mbcalliance.org.

Cancer Hope Network: talk with someone who’s been there.

Triage Cancer believes strongly in partnership. There are so many wonderful organizations in our community and today we are delighted to be highlighting the Cancer Hope Network. Cancer Hope Network provides one-on-one support for cancer patients and their loved ones. Because no one should face cancer alone.

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After weeks (months!?) of tests and scans and sleepless nights spent worrying, the doctor sits across the desk from you, looks up from the chart on her desk and says, “Unfortunately, it’s cancer.”Cancer Hope Network

Your care team recommends a new treatment protocol. You’ve heard horror stories of the side effects it brings.

Your beloved spouse has reached an especially difficult point in their treatment. As a caregiver, you find yourself physically and emotionally exhausted.

More than 1.6 million new cases of cancer will be diagnosed this year. Millions more will be treated. If you’re reading this post, chances are, you’ve experienced a moment like the ones above. If you haven’t, your loved one has.

Getting a cancer diagnosis can be time-stopping, world-spinning, forcing you to make choices between treatment options, worrying about side effects and facing fears about the future. It is, as they say, a lot.

That’s where Cancer Hope Network comes in. For more than 30 years, CHN has trained cancer survivors and their caregivers as Support Volunteers. Our 400+ volunteers have faced more than 80 cancer types. They’ve completed courses of chemotherapy and rounds of radiation, helped pioneer treatments and medications as clinical trial participants, received stem cell transplants, faced bisections, ostomy bags and surgeries. They’ve battled the crippling fear of leaving their children alone and grappled with the heart-wrenching realization they may never have children of their own.

They’ve been caregivers like Anne, a retired school secretary with grandchildren in Alabama. She’s a bladder cancer survivor who cared for her beloved husband through his last days of his own fight with bladder cancer. She encourages patients to keep the faith, “They’re coming out with new research, new information and drugs every day.” She’s also a voice of reason, reminding caregivers “You have to call and get help…You’re a person. You’re a human. You simply cannot do it alone.”

Others are survivors like Karla, a 7-year stomach cancer survivor who found purpose in sharing the lessons she’s learned. “Now that I had learned to eat and survived, I wanted to help.”

Patients and loved ones may contact Cancer Hope Network by calling 877-HOPENET (877.467.3638) or visiting cancerhopenetwork.org.  They’ll work with a member of our Patient Services Team to connect with the Support Volunteer whose experience most closely mirrors their own.

Whatever the challenge, chances are a CHN Support Volunteer has faced it. They understand the fine balance between gratitude and the survivors’ guilt faced by the “lucky ones” who are here to talk about it. They’re working through the challenges of survivorship and cancer’s new normal – and are willing to share.

Support Volunteers’ passion is to lend a listening ear and supportive presence for others on cancer’s journey. Their commitment is that no one face cancer alone.

It’s a commitment that pays off with satisfied, encouraged patients. “If all your volunteers are like the one I spoke to, then you have exceptional people volunteering for you,” reads one patient survey. “That make the illness I’m going through easier to contend with!”

“My volunteer was very informative and eased my real fears about my CLL,” another recalls. “It was wonderful speaking with someone dealing with the same blood-related disease. His knowledge helped to calm my nerves.”

Patients and loved ones may contact Cancer Hope Network by calling 877-HOPENET (877.467.3638) or visiting cancerhopenetwork.org.  They’ll work with a member of our Patient Services Team to connect with the Support Volunteer whose experience most closely mirrors their own.

Testicular Cancer Awareness

As we close out Testicular Cancer Awareness Month, our partners at the Testicular Cancer Foundation share valuable information about testicular cancer awareness, prevention and detection.

Did you know that testicular cancer is the most commonly diagnosed cancer for men that fall between the ages of 15 and 34? Affecting those early in their lives, it’s important to detect signs of testicular cancer as soon as possible, starting the journey to survivorship. April is Testicular Cancer Awareness Month, and in an effort to help spread the word about steps to finding, diagnosing, treating and coping with this life-altering circumstance, Tommy John is partnering with the Testicular Cancer Foundation (TCF) to continue and strengthen our support of men.

Testicular cancer is the growth of malignant cells in one or both of the testicles. This directly impacts the male reproductive system and can alter lives in many ways, just as with any cancer diagnosis. Early detection is key, and it starts by being informed. Approximately one male is diagnosed with this cancer every hour, and on average, one male dies each day from this disease. However, it’s important to note that testicular cancer is one of the most beatable cancers when identified early. That being said, let’s take a look at methods for performing a quick self-check, as a proactive step before seeing a doctor or urologist. As always, be sure to consult a doctor for a proper diagnosis.

Testicular Cancer Awareness

 

Self-checks are an important step to taking control of your health and staying proactive when it comes to a potential cancer diagnosis. If diagnosed, one’s life can be understandably turned upside down. A common stigma that men often face, is that testicular cancer can negatively impact their manhood. This mindset can make it difficult to ask for professional help. However, with proper treatment, one can quickly work towards a healthy recovery. As TCF confirms, “The good news is that after surgery, and the potential treatment, the majority of men return back to a normal healthy life including, recreation/hobbies, work, sex, and family life.”

If diagnosed, what comes next? Cancer affects an individual on both a mental and physical level. Survivor Scott Lazerson urges, “My #1 recommendation for anyone facing cancer is positivity. Being positive is the biggest game-changer of life.” A healthy mindset can make a huge impact when embarking on a path to full recovery. What about the physical impact? The infected testicle, and in some cases other infected areas, are removed and sent for testing to determine that stage and nature of the cancer. This will help doctors to identify the best mode of treatment, whether this be surgery, post-op chemotherapy or further testing to determine the return of malignant cells. TCF has supplied many post-op TC patients with our Tommy John underwear in an effort to encourage a comfortable recovery. Research has also shown that proper-fitting underclothes can provide several other health benefits. Check out TJ underwear here, as well as our design dedicated to TCF. A portion of these purchases go towards the treatment, research and care associated with testicular cancer. Explore our #KnowYourBalls campaign for more information.

One of the most important points to keep in mind is that there is hope. Again, diagnosis and the most-effective path to recovery will be different for every individual and can only be determined under the care of a doctor. In the meantime, TCF educates men and offers support for early detection and prevention, noting that, “living a healthy lifestyle is a huge proponent to reducing your risk for all types of disease including testicular cancer. Being an advocate for your own health and knowing your body is extremely important.” There are many resources available to stay educated on this cancer, as well as support for those diagnosed and recovered. Take action today to ensure your personal health as well as the health of the men in our lives.

“You have cancer.” Now what?

by Aditi Narayan, MSW; LIVESTRONG Program Manager

When Ana heard the words “you have cancer” at the age of 23, she was in shock.  She told her parents right away. Her mother wanted to know whether she could still have children after treatment for cervical cancer.  Her father wanted her to get a second opinion.  Her friends wanted to know how they could support her.  Ana wanted to know whether she would live and how much having cancer would cost – financially, physically, and emotionally.

Her doctor told her about the side effects of the recommended treatments, but Ana left the appointment with more questions than answers about the myriad ways cancer would affect her for the rest of her life.

Do I have to tell my coworkers? How much time will I have to take off of work? Can I drive myself to chemotherapy or will someone else have to take me? How much will this cost? Can I afford this?

Unfortunately, Ana’s story is all too common among the more than 15.5 million people affected by cancer in the United States. While your health care team focuses on your medical needs, LIVESTRONG focuses on you, not the disease. Our free, personalized and confidential one-on-one navigation services can help with financial or insurance counseling, education on diagnosis and treatment options, access to discounted fertility preservation services, emotional support, clinical trial matching, and more. We can also help you and your family find essential resources to assist with daily practical issues. Our services are available via phone and online from 8:30am-5pm ET Mondays-Thursdays, and from 8:30am-4pm ET on Fridays. Call 1-855-220-7777 or go online at LIVESTRONG.org/CancerSupport to connect with a navigator today.

Iram, Brain Cancer Survivor and a former LIVESTRONG Navigation client

Iram, Brain Cancer Survivor and a former LIVESTRONG Navigation client

Recognizing that you and your loved ones may want to look for information on your own prior to or instead of contacting a navigator, we created an extensive suite of helpful articles, videos, and tools. Explore this information at LIVESTRONG.org/WeCanHelp.

Within one week of her call with her LIVESTRONG Navigator, Ana

  • Had a better understanding of her cancer diagnosis, the recommended treatment and the potential side effects;
  • She had received free medications to start the process of freezing her eggs at a discounted price;
  • She had scheduled an appointment with another oncologist to get a second opinion after learning her insurance would cover it;
  • She had discussed her financial options with her case manager so she wouldn’t feel overwhelmed with medical bills;
  • She had signed up for an online support group her case manager found for her to learn about ways she could take care of herself during and after treatment; and
  • By using LIVESTRONG Rally to mobilize her support network, she knew which of her family members and friends would be taking her to chemotherapy and bringing her meals for the next two weeks.

By connecting Ana with the resources she needed, LIVESTRONG saved Ana thousands of dollars in fertility preservation and stimulation medication costs, and also saved her the hours and energy it would have taken her to identify these resources and contact them. Contact us to learn about how we can help you today.

livestrong-logo

Since 2004, LIVESTRONG Cancer Navigation has helped over 115,000 people like Ana and Iram navigate their cancer at no cost in English and Spanish by being a central hub of cancer support services.

The Future of Clinical Trials is Now

triage-cancer-blog-future-of-clinical-trialsTriage Cancer believes that everyone should have access to quality cancer care. Sometimes, that care comes in the form of a clinical trial. We have a number of resources on clinical trials, but wanted to share with you a newer resource from one of our partners, that might be helpful for you.

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One of the earliest clinical trials can be dated as far back as the famous 1747 scurvy study conducted by James Lind. Almost 200 years later, in 1946, the first randomized controlled trial occurred on streptomycin, an antibiotic we continue to use today. Over time, technology has advanced but many aspects of running a clinical trial have remained the same, until now.

Science 37 has introduced a new model and approach to running clinical trials by combining technology with telemedicine. Participants in a Science 37 clinical trial can join, receive study medications, and participate from the comfort of their home, no matter where the study is being conducted. The goal is to allow participants to join clinical research from home, and reduce the pain of travel or the inability to participate due a patient’s geographic location. For current cancer research opportunities that are being conducted in this way, please visit https://www.science37.com/participants.

Here are some potential scenarios to illustrate the differences between a Science 37 clinical trial and a traditional clinical trial:

Science 37 Clinical Trial                                             Traditional Clinical Trial

1. Initial Search & Signing Up

Jane is newly diagnosed and searches the internet to learn more about her condition. She lands on a virtual trial site.

 

Jane is newly diagnosed and searches the internet to learn more about her condition. She lands on an academic site’s research study page. The trial site is a 72 mile round trip from Jane’s home.

2. Being Contacted

Jane signs up online to receive more information. A study coordinator reaches out to her the following day.

 

Jane calls the site & is scheduled for a screening clinic visit.

3. Getting Screened

Jane is screened by phone to determine eligibility.  She answers questions about her condition.

 

Jane drives to the clinic site, checks in and waits to see the study staff who screen her to determine eligibility.  She answers questions about her condition.

4. Giving Consent

Upon confirming eligibility, Jane is given access to a secure website portal where she can review electronic informed consent documents. She takes time to review them while at home and discusses them with her family. She later contacts the research coordinator to complete the virtual informed consent process via phone & video teleconference. The study coordinator and investigator ensure that she understands the study & is willing to volunteer. Jane was able to schedule her virtual consent process around her busy work schedule.

 

Upon confirming eligibility, Jane is given the informed consent documents to review.  She decides to take them home so that she has more time to read them and discuss them with her family. She later makes a follow-up visit to return to the clinic where she undergoes the informed consent process. A study coordinator and investigator ensure that she understands the study & is willing to volunteer. Jane had to take time off from work to return to the clinic to complete the informed consent process.

 

5. Participation and Follow-Up Visits

Jane completes the study baseline procedures at home. These include getting vitals signs and blood work by a mobile nurse. Study medications are shipped to her home and her study questionnaires are completed through the NORA app on the study iPhone.

Jane receives a new shipment of study medications every month to her home and completes monthly study questionnaires on NORA.

 

Jane returns to the research clinic to complete the study baseline procedures. These include getting vitals signs and blood work by the clinic staff. She completes a paper questionnaire and is given her one month supply of study medication to take home. She is scheduled to return to the clinic every month to get a refill of study medications and to complete the study questionnaires. She has to check with her work to make sure she will be able to take time off for the next study visits.

6. Reporting Side Effects

Jane wants to report noticing a new rash so she calls her study coordinator using NORA on her study iPhone. She is advised to take a photo of the rash through NORA. The study investigator is notified and within a few hours, Jane is given instructions on how to manage the rash.

 

 

 

Jane wants to report noticing a new rash so she calls her study coordinator in the clinic. She describes the rash over the phone to the study coordinator who states that they will need to contact the investigator and call Jane back. After speaking to the investigator, the study coordinator calls Jane and instructs her to return to the research clinic the next day for evaluation. Jane is concerned and must ask her boss to take more time off from work to go to the clinic.

6. Study End

Jane is contacted by the study coordinator to give her instructions about completing the study. She completes some questionnaires on NORA, and ships back the remaining study medications and study iPhone. Jane joins a community of others who share her condition so that she can receive updates on the study and learn about future trials.

 

Jane takes a day off from work so that she can return to the research clinic for her last visit. She is accustomed to the routine of driving to the clinic, checking in at reception, and waiting to be evaluated by the research staff. During the visit, she complete some questionnaires and returns the remaining study medications to the staff.

Volunteer Opportunity: LIVESTRONG

livestrong-logoHave you or a loved one been impacted by cancer? Are you interested in volunteering for a mission-based organization specifically focused on the needs of those affected by cancer? Are you interested in making a difference in your local cancer community? 
 
LIVESTRONG means doing the best and the most for those affected by cancer, now! Our vision is that people living with cancer have everything they need throughout their journey. We provide individuals and communities with best-in-class programs and services that meaningfully improve their cancer experience. LIVESTRONG is about the person, not the disease.
 
With this in mind, the LIVESTRONG Leaders volunteer their time acting as community representatives to help LIVESTRONG strengthen our mission, amplify our message and expand our movement of supporters in local communities and online in three distinct ways: providing education and raising awareness around our programs and services, participating in LIVESTRONG supported and sanctioned legislative advocacy activities and taking part in Team LIVESTRONG and grassroots fundraising efforts. 
 
As ambassadors and boots on the ground in their local communities, LIVESTRONG Leaders speak to our mission, connect individuals to our services and advocate for change. Listen as some of our Leaders share their experience of participating in this important role. 
 
The LIVESTRONG Leader Program is a key engagement strategy for LIVESTRONG at the community level to deploy individuals across the globe in support of our mission and now is your chance to get involved! Applications for the 2017 program are now open here. The application will close on Friday, November 18. 

A New Resource for Those Considering a Clinical Trial: About Clinical Trials (ACT)

triage-cancer-blog-act

About Clinical Trials (ACT) is a collaboration between the American Cancer Society and Genentech.  Its aim is to increase patient interest in and awareness of cancer clinical trials through educational patient resources.  The idea is to empower people to understand cancer clinical trials and discuss this option with their doctors and loved ones.

Visit http://triagecancer.org/clinical-trials to learn more about clinical trials and ACT, including:

  • Six informational videos
    • Why Should I Consider a Clinical Trial?
    • How Will I Know if a Trial Is Right For Me?
    • How Should I Prepare for Discussions With My Doctor?
    • What Standards Are in Place to Safeguard Trial Participants?
    • What Is Informed Consent?
    • Where Can I Turn for Information and Support?
  • A patient discussion guide
  • Responses to common misconceptions about cancer clinical trials
  • List of helpful resources

If you prefer to talk with someone by phone about your clinical trials options, you can call the American Cancer Society at 1-800-227-2345 to request an ACT patient kit, which contains and educational brochure with a DVD and a USB drive.

Considering a clinical trial can be an overwhelming process.  Take advantage of any and all the resources out there.

For more information about clinical trials, read the other blogs in this series: http://triagecancer.org/blog/category/clinical-trials.

Addressing Mesothelioma from a Medical Perspective

Today’s guest blog comes from our new partners at the Mesothelioma Applied Research Foundation.The Mesothelioma Applied Research Foundation

The word, Mesothelioma (pronounced mez-uh-thee-lee-oh-muh), is often much better known than the illness it represents.

The legal issues surrounding this cancer make mesothelioma, the most expensive keyword on Google (while most keywords cost pennies, the keyword mesothelioma can cost over $300 per click). Mesothelioma, in most cases, can be traced back to exposure to asbestos. Therefore, there are legal avenues for patients to seek compensation.

Mesothelioma is a cancer that most often affects the lining of the lung or abdomen; it has no cure and treatment options for patients are few. Prognosis is generally considered poor, at less than 10% survival at five years post diagnosis. The vast majority of mesotheliomas are associated with exposure to asbestos, with the latency between exposure and disease development ranging between 20-50 years.

Diagnosis of mesothelioma has always been difficult, mostly because initially its symptoms are quite general (shortness of breath, general malaise, pleural effusion, gastro-intestinal problems). In addition, because of the long latency between exposure to asbestos and disease development, patients and their doctors aren’t led to a diagnosis quickly, thereby wasting valuable time that could have been used to begin treatment.

When the Mesothelioma Applied Research Foundation (Meso Foundation) began its operations in 1999, mesothelioma was a cancer largely ignored by the scientific community. At that time, virtually no research funding was available for it, and consequently, patients found themselves with little hope and sadly, very little time to live. What’s more, patients, as well as physicians, lacked updated and comprehensive treatment information about mesothelioma.

This is where the Meso Foundation comes into play. The Meso Foundation is a nonprofit organization dedicated to eradicating mesothelioma and ending the suffering caused by this aggressive and incurable cancer. It does so by funding peer-reviewed research, by providing education and support to patients and their family members, and by advocating Congress for an increased federal investment into mesothelioma research. To date, the organization has allocated more than $9.4 million of its own funds and has directed more than $13 million of Department of Defense (DoD) funding toward important mesothelioma research.

For years, mesothelioma has been known as a cancer that strikes predominantly older males because of their past occupational exposures. Most recently, however, the Meso Foundation has found that more than ever before men and women in their 20s, 30s, and 40s are contacting the Foundation for help.

To better define this patient population and to spur advances in mesothelioma clinical research and treatment a registry bill has been introduced in congress. HR 3284 enjoys bipartisan support and, if passed, we anticipate it will lead to unprecedented advances in mesothelioma science.

Despite the poor prognosis, patients today who are able to obtain a quick and accurate diagnosis and expert guidance to treatment options (like state-of-the-art clinical trials) can live long and fulfilling lives, with good quality of life. The Meso Foundation can help patients navigate the best path through most effective mesothelioma treatment options.

For more information about the Meso Foundation or to obtain help, patients and their families are encouraged to visit www.curemeso.org. Please note: the Meso Foundation does not provide legal referrals.

Cancer Survivorship Care Plans

Triage Cancer and the California Dialogue on Cancer (CDOC), have partnered together in the development of new tools to help increase the use of cancer survivorship care plans. These new tools include:

  • Cancer Survivorship Care Plans: A Toolkit for Health Care Professionals
  • Fact Sheets for Survivors & Caregivers (English, Spanish, Chinese, & Tagalog)

CDOC is a state cancer coalition administered by the California Department of Public CDOC Survivorship Care PlansHealth’s Comprehensive Cancer Control Program. CDOC includes members from state and local governments; private and nonprofit organizations; health, medical, and business communities; academic institutions; researchers; cancer survivors; caregivers; and advocates. One of CDOC’s responsibilities is to develop California’s Comprehensive Cancer Control Plan to reduce the cancer burden in our state.

One of the specified survivorship goals in California’s Cancer Control Plan is to improve survivorship care by increasing the use of survivorship care plans. Triage Cancer led a Survivorship Care Plan Advisory Group, which included doctors, public health educators, researchers, social workers, advocates, caregivers, survivors from throughout the state of California to develop a toolkit and fact sheets to increase the use of survivorship care plans in California.

What is a Cancer Survivorship Care Plan?

A cancer survivorship care plan is a written document this is a valuable tool for patients and their health care teams to monitor and manage a patient’s ongoing physical and emotional health. It summarizes the treatment that a patient has received, describes follow up care a patient should receive, and helps patients navigate other post-treatment needs.

The institute of Medicine suggested that the following information should be included in an effective cancer survivorship care plan:

  • Treatment Summary: details of your cancer diagnosis, contact information for your previous health care providers, and any treatments received
  • Follow-Up Care Plan: specific recommendations for ongoing care, managing side effects, signs of recurrence, screenings, nutrition, exercise, chemoprevention, etc
  • Psychosocial Issues: relationships, parenting, sexuality and intimacy, body image, genetic counseling, etc.
  • Practical Issues: insurance, employment, education, finances, etc.
  • Resources & Referrals: cancer-related organizations, follow-up care providers, support groups, etc.

What is Cancer Survivorship?

The National Cancer Institute defines cancer survivorship from the point of diagnosis, throughout life. There are approximately 14.5 million cancer survivors in the United States. Cancer survivorship issues are really any issues that come up for patients and caregivers as a result of a cancer diagnosis. Those issues could be physical, emotional, and practical issues.

Cancer Survivorship Guidelines

Numerous entities in the cancer community have developed guidelines on survivorship care, such as ASCO, the American Cancer Society, NCCN. and the Children’s Oncology Group. In 2012, the Commission on Cancer released accreditation standards, which require cancer centers to provide survivorship care plans to all of their eligible patients by January 1, 2019.

Cancer Survivorship Care Plans: A Toolkit for Health Care Professionals

In order to help cancer centers provide survivorship care plans, Triage Cancer and CDOC developed a toolkit that includes these topics:

  • Introduction to Cancer Survivorship & Survivorship Care Plans
  • Elements of an Effective Survivorship Care Plan
  • Survivorship & Survivorship Care Plan Guidelines
  • Survivorship Care Plan Templates
  • Implementing Survivorship Care Plans
  • Survivorship Care Plan Implementation Challenges & Practices
  • A Call to Action
  • Survivorship Care Plan Resources

Cancer Survivorship Care Plan Fact Sheets

In addition to the Toolkit, Triage Cancer and CDOC also created fact sheets about cancer survivorship care plans, to help patients and caregivers understand what they are and empower them to talk with their health care teams about this resource.

Click here to download a free copy of the Toolkit and fact sheets.

Click here to watch a video about cancer survivorship care plans.