What you need to know
By Emily Jordan, co-founder of Ancora.ai
“Too many patients don’t live near or get treated at a cancer center. Local oncologists need information and patients need to be informed of their choices and empowered to ask for them. Clinical trials are NOT last resorts in terms of treatment.” Metastatic breast cancer patient, Virginia, USA
Why have I never heard about clinical trials?
If you’ve never thought about clinical trials as an option for breast cancer treatment, you’re not alone. I’ve heard from countless patients that trials are not something that crossed their minds or that their doctors have brought up with them.
Clinical trials are how new treatments are brought to market. There are thousands of trials ongoing and each trial is looking for a particular type of patient, whether that’s someone at a specific stage of breast cancer or with particular genetic mutation. This can be difficult information to go through on your own as a patient if you wanted to look at what trials are out there. You also can’t necessarily rely on your doctor to bring them up. Oncologists see many patients each day and already have to optimize standard-of-care treatment for each patient, so it makes sense that they don’t always have the bandwidth to research and entertain all clinical trial possibilities for every patient. Even if a doctor does consider trials, typically they’ll only assess options in their own research center that they know about first-hand. For patients that aren’t being treated at a research hospital, this means most will never hear a word about trials, much less be presented with highly suitable options.
3 reasons you should care about clinical trials
With Ancora.ai, we are trying to change this pattern. We want to make sure that every breast cancer patient is aware of their trial options and that they are empowered to easily find this information on their own. In this post I’ll try to explain why and also share some quotes and experiences from patients who have been through trials.
Clinical trials are important for a few reasons:
1.Trials can benefit you!
- Just because you don’t hear about trials doesn’t mean you should ignore them. What patients aren’t usually aware of is that trials can be considered at ANY point in the treatment journey. Trials can offer more tolerable, newer, or more convenient treatment options vs. the standard of care. This, of course, can be particularly helpful for patients who are treatment experienced or later stage, such as secondary patients. Right now there are more than 1,500 clinical trials running for metastatic breast cancer. It can be good to consider your trial options before making a decision to start a standard treatment.
- “The two clinical trials I was part of gave me access to new drugs before I could get them in the clinic and 3.5 years of tumour stability…a lot when you think the median survival for metastatic breast cancer is only 3 years”, Canada, 10 years with metastatic breast cancer.
- If you enter a trial, you’ll either receive a new treatment or drug combination (that could become the new standard of care) or a standard-of-care treatment. Placebos are hardly ever used in cancer studies these days, as it would be unethical in most cases to do so.
- Some underserved groups stand to benefit especially from participation in trials. On average, for example, black women are more likely to have triple-negative breast cancer and have more aggressive cancer that is more likely to return. Clinical trials on triple-negative breast cancer are ongoing and will help not only to advance research in this area but also are likely to benefit trial participants who will receive new treatments before they are approved for the market. There are currently around 100 Phase 3, interventional clinical trials recruiting for triple negative, metastatic breast cancer.
2. You want to be prepared!
- Even if you are doing well on standard of care or off of treatment, and a trial isn’t right for you right now, it’s good to know what’s out there. One of our users, who has Stage IV cancer, put it well by saying:
- “You want to have those planes on the tarmac and have a list to reach out to.”
- It’s good to keep trials in mind if you want to stay informed on what’s up and coming in breast cancer treatment in case anything ever changes with your personal health situation.
3. It’s easy!
- While it’s still hard for doctors to make time to look at trials comprehensively for each and every patient who might benefit from them (we’re working on a solution for this), it’s actually now very easy for you to search for trials and stay updated on the latest developments in breast cancer.
Ancora.ai makes it simple to stay up to date on trials if you fill in our patient questionnaire (see “How Does Ancora work” on our home page), save a profile and set your notifications. It takes 4 minutes to do this on average. Then you’ll receive alerts if any trials that might be suitable for you are initiated or updated. In this way, you can make sure you don’t miss anything but don’t have to actively worry about or track trials. We suggest you spend a few minutes setting up your search and then you can forget about it, knowing that you’ll still be updated on any news. If you have any questions, you can always reach out to our team for support (email@example.com).
“Clinical trials are an OPPORTUNITY. it’s old school to think of them as a last resort. I found and advocated for my clinical trial. My oncologist doesn’t have the dedicated time to search for me. We must take an active role in our own survival.” – Metastatic breast cancer patient, California
How can I learn more?
If you want to find out more about clinical trials, you might also want to check out a few more resources. We can recommend the following:
In August 2020 Ancora.ai and Ticking off Breast Cancer did a focus week on clinical trials together and you can see some of the materials we developed here:
- Summary of clinical trials background info and who can join one
- Post on what every patient needs to know
- List of questions to ask clinical trials staff if you’re considering joining a trial
- Video of our Instagram TV Q&A session on trials and a recap post with all the Q&A topics
You can also follow Ancora.ai on social media to stay up to date on all things clinical trials: