#LCSM Chat Topic 3/5/2020: Expanding Access to Cancer Clinical Trials
Cancer research is necessary if we are to find more durable treatments for all cancers. While research has come a long way, we still have a long way to go in order to establish quality, durable treatments for many diagnosed with advanced/metastatic disease.
Typically research begins, “at the bench” with cell lines and in organoids. Once an idea has shown some promise, it often moves on to testing in animals. When an idea, test or therapeutic shows significant promise, it must move to clinical trials. Clinical trials, allow diagnostic tests, screening methods, treatments, and patient care devices and methods to be evaluated for safety and effectiveness in humans. For many patients with advanced cancers, clinical trials may be their best care option.
We would all like research to move as swiftly as possible towards finding a cure. However, many clinical trials close without generating any useful information, or never even start, simply because they can’t enroll enough participants. This slows the pace of research considerably.
There are many barriers to clinical trial enrollment. In our #LCSM Chat this Thursday March 5, at 5 pm Pacific (8 pm Eastern), moderator Janet Freeman-Daily (@JFreemanDaily) and guest Stacey Tinianov (@coffeemommy) will lead our discussion of these barriers and how to address them using the following questions:
- T1: What are the barriers to cancer clinical trial participation and enrollment?
- T2: How might awareness of clinical trials be increased?
- T3: How might eligibility requirements be modernized to help increase clinical trial enrollment?
- T4: How might financial, travel, and administrative barriers to clinical trial enrollment be reduced?
Please join us, and bring your experiences and wisdom! Remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here.
#LCSM Chat 2020-02-06: Dealing with #lungcancer stigma and nihilism
All too often, lung cancer patients encounter stigma towards their disease and nihilism towards their chances of beating it. Although the causal connection between tobacco smoking and lung cancer was heavily emphasized in well intended public campaigns designed to curb cigarette use, unintended consequences arose.
Perhaps more than any other cancer, lung cancer is automatically associated with a bad personal choice – smoking. Many people believe patients could have avoided their lung cancer had they made better decisions. Such perceptions may stifle discussions about lung cancer, cause patients to refuse screening or to delay seeking medical evaluation, and often lead to self-blame and guilt among patients.
Therapeutic nihilism goes hand in hand with this stigma. For too long, survivors of lung cancer were reluctant to share their stories, perhaps in part as a result of their own burden of guilt. That, along with a survival percentage far below those of other cancers, led general physicians and the public to believe that all lung cancer patients would die soon after diagnosis. The only option was to tell the patient to “get your affairs in order.”
Fortunately, we are making progress. Advances in screening, surgical treatment, radiation therapy, molecular profiling, targeted therapy, and immunotherapy have drastically improved outcomes and quality of life for many lung cancer patients. At the same time, a growing community of lung cancer patients and advocates have raised their voices and demanded attention. They are sending a clear message: anyone with lungs can get lung cancer. The lung community has called for focused efforts promoting research, for programs highlighting survivorship, and for equal access to evidence-based care.
Despite progress, we still have much work to do. With that in mind, Dr. Brendon Stiles (@BrendonStilesMD) will lead our discussion on Thursday, February 6, at 8 pm Eastern Time, using the following questions:
- T1 How does stigma affect lung cancer patients and research?
- T2 Are doctors and patients still nihilistic about a new diagnosis of lung cancer?
- T3 Are there certain groups of patients who doctors particularly stigmatize or take a nihilistic view towards?
- T4 How can we better study the effects of stigma and nihilism on cancer patients?
- T5 What can we as a group do to best address stigma and nihilism?
Please join us, and bring your experiences and wisdom! Remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here.
#LCSM Chat 2020-01-09: Ways to support #lungcancer patients and caregivers
Our first #LCSM Chat of 2020 will focus on ways to support lung cancer patients and caregivers.
A lung cancer diagnosis can be overwhelming for both patients and those who love them. During diagnosis, the family schedule is disrupted by a myraid of doctors appointments and tests. The array of treatment options, newer therapies, and clinical trials is confusing. Once treatment begins, side effects and medical appointments may crowd out normal routine and make cancer the focus of everything. If the cancer returns or progresses, the cycle begins again. If the cancer is metastatic and not curable, it seems like one can plan life only from scan to scan. Given the shock of an often unexpected diagnosis and the seriousness of the disease, patients and families sometimes have difficulty communicating honestly and effectively about their experiences, what’s most important to them, and the best path forward.
On January 9 at 8 pm Eastern Time, moderator @JFreemanDaily will use the following questions to lead a discussion about ways to support lung cancer patients, their caregivers, and family members:
- T1. What are the biggest challenges faced by lung cancer patients, caregivers and families? Which factors most influence these challenges–cancer staging, family status, finances, access to lung cancer specialists, … ?
- T2. What support resources are available ONLINE for lung cancer patients, caregivers, and families?
- T3. What support resources and services are available for lung cancer patients, caregivers, and families who are NOT ONLINE?
- T4. How can organizations and individuals in the lung cancer community help provide supports to lung cancer patients, caregivers, and families?
Please join us Thursday January 9, 2020, and bring your experiences and wisdom! Remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here.
