This post is written by ASK Cancer Commons Scientist and Product Team Member Amanda Nottke, PhD. Dr. Nottke regularly provides guidance to patients through our ASK Cancer Commons service.
After a diagnosis of early stage, hormone-positive breast cancer, you may find yourself facing several daunting decisions, such as choosing between the extensive surgery of mastectomy versus a more minor lumpectomy procedure paired with radiation (with all its challenging side effects). And once surgery is complete, what next? Hormone therapy is clearly indicated for many women, but which drug, and how long to take it? And what about chemo—how to know if the tough side effects are worth the possible reduction in risk of recurrence?
Fortunately, there are a wealth of quality datasets available to inform these decisions. Below are some of the questions we get most frequently from patients using our ASK Cancer Commons service, answered according to the latest thinking from scientific literature and our expert physician network. If you are facing your own cancer treatment decisions and would like free one-one-one expert support, please submit your case here.
1. If my doctor has said either mastectomy or lumpectomy plus radiation are appropriate for me, how do I choose?
Many studies have looked at this, and overall the outcomes for mastectomy versus lumpectomy plus radiation are extremely similar (both are effective treatments, so you can instead weigh the side effects of radiation versus the more intensive surgery of the mastectomy). This webpage provides a helpful summary of the pros and cons of mastectomy compared to lumpectomy.Continue reading…
Cancer Commons provides expert, personalized guidance to patients and caregivers around the world through our ASK Cancer Commons service. Recently, we plotted the distribution of our ASK users on a world map to see where they live. We found that about 2,000 people in more than 44 countries have sought help from Cancer Commons.
“Cancer Commons is catering to an international audience and therefore has great potential even beyond the U.S., where the majority of under-served cancer patients may be present,” says summer intern Usman Raza, a graduate student at U.C. Berkeley School of Information, who prepared the map.
Further analysis revealed more about who uses the ASK service. We found that about 60% of ASK users are female, and one third of ASK users contacted us regarding their (or a loved one’s) lung cancer treatment. Other common cancer types were skin (14%), breast (13%), and gastrointestinal (10%) cancer.
We have received questions about cancer treatment for people of varying ages. Five percent of questions were regarding cancer in patients between 0 and 30 years of age. Twenty-nine percent of patients were between 30 and 50 years of age, and 53% were 50 to 70. Thirteen percent of questions were regarding patients 71 years old or older.
This analysis illuminates the diversity of people benefiting from our ASK service and will help guide our efforts to continue to improve the way cancer is treated for patients around the world.
Volunteers are essential members of the Cancer Commons community. We are deeply grateful to those who have generously donated their time to helping us change the way the world treats cancer.
This month, we celebrate the contributions of Cancer Commons volunteer Connor Sweetnam, who uses his engineering background to extract insights from our interactions with patients so they can be leveraged to help other patients. To learn more about his work, I interviewed Connor via email.
Can you tell me a bit about yourself?
I am the oldest of three boys and have come to call the Bay Area home. I graduated with a degree in biomedical engineering from the University of Southern California in May 2016 and now work as the Facilities Assistant for a cancer immunotherapy start-up named Alexo Therapeutics. I thoroughly enjoy reading, building things, watching college football, sports, snowboarding, backpacking, scuba diving, and traveling. As a next step, I’m thinking of going to graduate school in a field related to biotechnology or engineering.
How did you find out about Cancer Commons, and what made you want to volunteer?Continue reading…
Since September 1, 2016, the weekly number of new patients and caregivers seeking help through our ASK Cancer Commons service has increased by about 500%, compared to previous months. This surge occurred organically, with new users finding out about the service solely by word of mouth. Continue reading…
At last week’s Radiological Society of North America Annual Meeting, radiologists were encouraged to use social media to guide patients to valuable online resources—including Cancer Commons. Social media gives doctors a great opportunity to connect with patients, said ElliotFishman, MD, at the meeting in Chicago. He urged radiologists to use social media platforms to promote sites like radiologyinfo.org that can help patients learn and be more engaged in their own care.
We encourage radiologists to tell their patients about Ask Cancer Commons. This service helps patients connect with experts to answer questions about treatment, diagnosis, clinical trials, and more.
A stronger online presence could also allow radiologists to monitor and respond to reviews, improving their relationships with patients. Read more at Medscape.