We are excited to announce that we are expanding our one-on-one cancer support services to include cancer previvors and those in the high-risk community.
Since our inception, Imerman Angels has been dedicated to providing free one-on-one psychosocial support to cancer fighters, survivors and caregivers. Now, through several new partnerships with other cancer organizations, we are excited to expand our reach to assist previvors and the high-risk community for every type of cancer.
What is a previvor, and who is considered part of the high-risk community?
Previvors and high-risk individuals are people who have not been diagnosed with cancer, but have a predisposition to the disease due to their genetic makeup, family history or other predisposing factors.
One common genetic mutation you may have heard before involves BRCA mutations. Many breast cancer previvors are people who tested positive for a genetic mutation in their BRCA1 or BRCA2 genes. Although they may not be currently diagnosed with breast cancer, a mutation in either of these genes means that they have a higher risk for developing breast and ovarian cancer in the future than a person without these genetic mutations. We have partnered with national non-profit Bright Pink to integrate their Pink Pal program into our program to better serve their community of individuals at increased and high-risk for breast and ovarian cancer.
“I am thrilled about the partnership between Bright Pink and Imerman Angels,” says Carmen Williams, Lead Genetic Counselor at Northwestern. “Peer to peer support is key for many women found to be BRCA positive, and this collaboration will provide unprecedented access to that support for the many women who get connected to these two extraordinary organizations.”
In addition to Bright Pink, we also work with AliveAndKickn, a hereditary cancer foundation with a mission to improve the lives of individuals and families affected by Lynch syndrome and associated cancers through research, education, and screening. We hope to expand our scope in the future to include other previvors and high-risk community members.
Previvors and people in the high-risk community face a number of challenges that, although often different from those faced by cancer fighters, are still important and can be life changing. For example, someone with a high risk for breast cancer might choose to have a preventative double mastectomy. That is no easy decision, which is why we have expanded our services to include these individuals who also need support within the cancer community.
Breast Cancer and Beyond
Through our partnerships, we have been able to welcome many cancer previvors and high-risk individuals to our program. With the support of other partner organizations, we have been able to expand our reach and continue to create a unique peer-to-peer support system. Since our partnership with Bright Pink began in August, we’ve registered 29 Pink Pals as Mentor Angels in addition to the already extensive network of previvors and high risk individuals we serve. We hope to continue to grow our network of breast and ovarian cancer previvors as Mentor Angels and Support Seekers to better serve that segment of the cancer community.
But we don’t want to stop there.
It’s not just breast and ovarian cancer; any type of cancer can have a genetic mutation or hereditary component that makes some individuals more prone to developing the disease. We want to make sure that previvors and high risk individuals predisposed to ANY type of cancer have the resources they need to seek support and comfort from those who truly understand.
Previvors by the Numbers
Any type of cancer can have a higher prevalence in certain individuals depending on their family history and genetic makeup. Two common examples that demonstrate the effect of genetic mutations on cancer risk are Lynch syndrome and BRCA mutations.
Lynch syndrome indicates a mutation of the MMR gene, which means the person’s body is less able to fix errors in the DNA. A person with this mutation is more likely to get certain types of cancer. According to AliveAndKickn, Lynch syndrome increases the risk of getting colorectal cancer by 80% and endometrial cancer by 60%. Lynch syndrome can also lead to other cancers, including:
- Cancers of the stomach and small intestine
- Cancer of the pancreas
- Cancer of the urinary tract, including kidneys
- Cancer of the bile ducts
- Sebaceous (oil) gland tumors
- Ovarian cancer
- Skin cancer
- Glioblastoma multiforme (a type of brain cancer)
The BRCA mutation is another common example of how a person’s genetic makeup can influence the prevalence of cancer. According to the National Cancer Institute, the lifetime risk of being diagnosed with breast cancer for a woman with a BRCA mutation can be up to 72%, compared to 12% for those without the mutation. For ovarian cancer mutations, the risk is up to 44% compared to just 1% for the general population. This increased risk can bring difficult decisions to the forefront of the lives of otherwise healthy people, like removing the ovaries or undergoing a preventative double mastectomy, as Angelina Jolie famously did in 2013 after learning of her BRCA mutation.
While the specific increased risk depends on the cancer type and genetic and hereditary factors, the simple fact is this: if you have certain genetic mutations or family history, your risk of cancer goes up. And that’s scary; previvors need support.
Why Bright Pink?
Bright Pink is a national non profit on a mission to help save lives from breast and ovarian cancer by empowering women to know their risk and manage it proactively. Through their Pink Pal program, Bright Pink worked to connect their community through one-on-one peer support with a model similar to ours at Imerman Angels. Bright Pink CEO Katie Thiede decided to integrate their Pink Pal program into our network of fighters, survivors, caregivers and previvors because of our reputation as a leader in peer-to-peer support with individuals across the cancer continuum. Through our partnership, Bright Pink’s community will gain access to services in Spanish, support for caregivers, more regular check-ins with mentors, as well as access to a huge network beneficial for a wide range of individuals and experiences.
“We are thrilled to incorporate support for the high risk community into our program,” says Stephanie Lieber, Executive Director here at Imerman Angels. “This expansion means we can help even more people within the cancer community. This partnership with Bright Pink provides an amazing opportunity to serve more people and we’re already seeing an increase in previvor numbers thanks to the Pink Pal program. We encourage previvors of any cancer type to reach out and get connected with someone who understands.”
“We are honored to be partnering with Imerman Angels to bring critical one-on-one peer support to the Bright Pink community,” says Thiede. “We are confident that their services and expertise will positively impact the women in our network that are at increased and high risk for breast and ovarian cancer and be a source of light and comfort on their journey toward better breast and ovarian health. We have no doubt that this partnership will continue to grow and flourish in the years to come.”
This week is National Hereditary Breast & Ovarian Cancer Week (9/30-10/6). Millions of people have genetic mutations of a family history of cancer, and both of these factors contribute to a higher risk of developing the disease in the future. National Hereditary Breast & Ovarian Cancer Week was instituted to raise awareness for cancer previvors and encourage people to be proactive about their health.
If you are a cancer previvor, fighter, survivor or caregiver looking for support, request a Mentor Angel today. If you are are cancer previvor, fighter, survivor or caregiver and would like to provide support to someone in need, register to become a Mentor Angel today.
It would be great to see more attention on rare genetic mutations that can also cause many of the cancers mentioned above.
For myself Cowdens Syndrome is a genetic mutationI have, and the cause of my breast cancer I had almost 10 years ago.
I am both a previvor (for breast cancer) and a cancer survivor (for ovarian cancer). I’m an Imerman’s angel for ovarian. I’d like to also be considered as a previvor support person in your program. Feel free to add me to your distribution list to help other previvors.