How breast cancer research studies can help your family with early detection

How breast cancer research studies can help your family with early detection
By 
the PicnicHealth Team
October 16, 2023
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Introduction

Early detection of breast cancer can make all the difference in terms of treatment options and outcomes. In addition to regular self-exams and OBGYN appointments, having a complete picture of your family history is one of the best tools you have at your disposal.

Luckily, it’s easier than ever before to track your family history. Groundbreaking genetics testing like BRCA1 and BRCA2 have empowered millions of people to take control of their health. In addition to genetic testing, tools like PicnicHealth’s timeline feature and research studies make tracking your health journey, sharing it with family members, and moving breast cancer research forward in just a few clicks.

In our comprehensive guide, we'll break down everything you need to know about detecting breast cancer early and how your health history can help your family stay cancer-free.

Early breast cancer detection – genetic testing

Early detection of breast cancer can make all the difference, and empowering yourself with as much information as possible on your family history and the latest research is a key first step. Here are a few practical steps you can take.

Family history
Family history plays a crucial role in early breast cancer detection. If you have a close relative (your mom, sister, or daughter) who was diagnosed with breast cancer, you may also have a higher risk of developing it. This familial link suggests a pattern – which could be environmental or even genetic. It’s essential to keep track of your family history. One easy way to do this is by organizing your medical records in one place. PicnicHealth makes this easy. You can sign up for PicnicHealth and opt into the timeline feature and PicnicHealth will gather all of your medical records for you, including past exams, blood tests, doctor’s notes, and more, into one chronological timeline. You can share your timeline with anyone you’d like, including family members, and encourage them to do the same to make it easier to identify any concerning patterns.

Genetic testing
Genetic testing for breast cancer has made incredible strides over the past several years. It’s become a pivotal tool in assessing your risk of developing the condition. Here’s a breakdown of your options for genetic testing.

BRACA1 and BRCA2:
These genetic tests are specialized screenings designed to identify mutations in two genes known to increase the risk of breast and ovarian cancer. Both genes usually suppress tumors by helping repair breaks in your DNA. However, certain mutations in these genes can impact their ability to repair and stabilize a cell’s genetic material. These tests look for any mutations. If you test positive for one of these mutations, it means you have a higher risk of developing these cancers, but it doesn’t guarantee it. You can also still develop these cancers without having any of these mutations.

How testing works:
BRCA1 and BRCA2 testing is noninvasive. The procedure begins with collecting a DNA sample, usually with a blood draw or a cheek swab. This sample is then sent to a lab specializing in detecting these mutations. It can take a few weeks to hear back about the results.

Other genetic testing:
Besides BRCA1 and BRCA2 testing, there are other genes associated with an increased risk of breast cancer that you can test for. A few examples are PALB2, TP53, PTEN, and CDH1. You can use a multi-gene panel test to analyze several genes at once that may impact your risk for breast cancer. While these mutations are less common with breast cancer diagnosis, they can still increase your risk.

Every person’s personal risk and genetic profile are unique. It’s important to consult with your healthcare providers and genetic counselors to get a complete picture of what testing makes sense for you and the steps you can take if a positive mutation is detected. Every time you learn more, you can keep track using your PicnicHealth account and share information with family members who may benefit from having this knowledge as well.

Early breast cancer detection – self-exams

Getting to know your body is a critical part of breast cancer detection and your overall well-being. You know your body the best, and regular self-exams are the first line of defense. By regularly examining your breasts, you can familiarize yourself with their normal texture, size, and appearance, making it easier to notice any changes or abnormalities.

A typical self-exam involves looking at and feeling each breast and underarm. While examining, you can look for any lumps, thickening, changes in size or shape, unexplained pain, or nipple discharge other than breast milk.

It’s important to note that self-exams are not replacements for regular mammograms or clinical breast exams are done by a healthcare provider. They are mainly to keep up your awareness between these regular professional exams. Combined with regular medical check-ups and mammograms, self-exams are an extra layer of prevention.

Early breast cancer research

Taking part in early breast cancer research studies offers you the opportunity to contribute to advancing our understanding of breast cancer and its early detection while potentially benefitting from cutting-edge treatments or diagnostic methods. These studies are often broken out into clinical trials or research projects and are designed by experts in the field to evaluate new screening tools, techniques, treatments, and prevention strategies. Here’s how a few different types of studies work.

Screening studies
These studies focus on identifying the most effective ways to detect breast cancer in its early stages. They can evaluate and compare different methods, including mammograms, MRIs, ultrasounds, or even newer diagnostic tools.

Preventative studies
These studies concentrate on finding measures, including drugs, vaccines, or lifestyle changes, that could help reduce or even eliminate the risk of developing breast cancer in individuals who may be predisposed.

Genetic studies
These studies aim to identify and understand how much of an impact genetic mutations can have on breast cancer predisposition and outcomes.

Treatment studies and clinical trials
These studies test new therapies, drug combinations, and other interventions to evaluate how safe and effective they are. They can focus on managing or eradicating early-stage breast cancer. By joining one of these studies, you could potentially have early access to cutting-edge approaches while playing a vital role in moving breast cancer research forward.

PicnicHealth is making it easier than ever to participate in medical research that centers the patient experience. When you sign up for a PicnicHealth account, you not only get access to tools that make it easier to manage your care journey, you also get the option to participate in specialized medical research. Many of these studies can be done on your own time and don’t require you to travel to in-person appointments. Some also come with compensation as a bonus.

How PicnicHealth works

PicnicHealth’s mission is to make it easier to keep track of medical records and participate in groundbreaking research so patients and their care partners can focus on their well-being. When you sign up for a PicnicHealth account, you have the option to have PicnicHealth gather all of your past medical records for you, including detailed doctor’s notes, test results, scans, and more, and organize them into one chronological timeline that shows your health history at a glance. This is completely optional – you are in full control of what data is gathered and who it is shared with.

When you have all of your medical records at your fingertips, you can easily share your health history with new providers you’re seeing to get them up to speed and any loved ones you want to keep in the loop. When managing a condition that has a genetic component, like breast cancer, being able to share your detailed health history with family members can help them take control of their health and be proactive.

Once you’ve joined the PicnicHealth community, you also have the option to participate in PicnicHealth research studies. These studies are easy to join and accessible. You can often participate from the comfort of your own home and on a flexible timeline. All of your information is de-identified, so your privacy is always protected.

Conclusion

PicnicHealth is here to help you take control of your breast cancer journey. By creating an account, you get access to a personalized timeline that organizes all of your medical records in one secure place and opportunities to participate in breast cancer research studies from the comfort of your own home. Get started.

About 

the PicnicHealth Team

About PicnicHealth

Empower people to own their medical records. Advance medicine. We’re a passionate group of doctors, patients, data nerds, engineers, and builders, who believe in making something real that changes lives today and in the future.

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Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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Together, we can make a difference.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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1

Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

2

Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

3

Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

4

Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.

Having trouble managing your loved one's medical records?

Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.

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LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.

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Tip: Download or print the poster at the end of this article to review before your next appointment!
However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.

Learn more about contributing to IgAN research with PicnicHealth. 

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