From Diagnosed To Advocate

By Ann Fonfa

I was diagnosed with lobular breast cancer in January 1993 and was not told it was multi-focal. Our breasts have lobes and ducts, thus the delineation. At that time, I was suffering from extreme Multiple Chemical Sensitivity, a still not recognized illness. I avoided chemotherapy, hormonal, and radiation treatments using surgery and natural strategies to survive. I was told I was stage IV in 1997, due to a series of tiny tumors on the chest wall, so I then added personalized Chinese herbal prescriptions to a complex complementary protocol. I might have taken hormonal therapy such as Tamoxifen or an Aromatase Inhibitor if there had been a test to see if I was among the small percentage of those who would benefit. Nowadays, testing can be done to see if a person will benefit from chemotherapy or hormonal treatment. This is a great advance.

I didn’t use the natural, potential replacement dietary supplements Indole-3-carbinol or DIIM. Both have been studied, especially by a doctor at Weill Medical Center in NYC. See the Library of Medicine online pubmed.gov for studies and more information.

In 1999, I founded Annie Appleseed Project, an all-volunteer cancer nonprofit to share evidence-based information on complementary therapies (Integrative Oncology). As a breast cancer advocate, I have spoken at many conferences and events, have been interviewed, and have presented posters. My work continues to educate and inform the community of people with cancer as well as all in oncology. The Annie Appleseed Project has presented substantial information on males with breast cancer and on the LGBT community. The website had an International section, as well. Unfortunately in 2012 and again in 2015, the site was cut in size and content. We are still working to update it, but meanwhile we use our Facebook page (not my personal page) to offer current studies and articles, information on events, etc.

As part of my advocacy work and engagement in the breast cancer community, I serve on the board of directors for the National Breast Cancer Coalition and have been an active grant reviewer for journals and the Dept. of Defense, for which I recruit other cancer survivors. (Get in touch if you have never reviewed for DOD, but would like to know more about this annual event.) Please contact me directly, as I recommend breast cancer survivors as Consumer reviewers each year. There is a mentoring and training program - our views and opinions as we represent our community, are what is welcome at DOD.

I am very proud of my work, but I don’t take personal credit for the interest around Integrative oncology. I was the charter Advocate member of the Society for Integrative Oncology. And first advocate member of MASCC (Multi-National Assoc. for Supportive Care in Cancer). It’s time is NOW.

Today, many in oncology acknowledge the need and value for exercise, nutritional changes, handling stress, and more. The most important thing about complementary therapies, is that they NEED to be done ALONG with conventional, at the same time in order to best benefit. Luckily, they may work afterwards also. ASCO (American Society for Clinical Oncology) has now recognized and acknowledged that conventional medicine does harm us even as it may help. They are not ready to recommend that ALL patients receive this care, nor that insurance cover it. That will come as I continue to hope and advocate for these points.

Annie Appleseed Project hopes to host our 15th educational conference February 23-25, 2023 in West Palm Beach, FL. We offer scholarships for people with advanced cancers (any/ all types) and also to unpaid Advocates. All meals except Friday night dinner are included in the $299 cost (not increased in years). Speakers come from all over the US and abroad, representing a variety of medical approaches and professions. It’s a great place to meet like-minded others; everyone eats lunch together including the speakers! There’s free yoga classes both mornings - we start Thursday afternoon and run through Saturday late afternoon. There’s a FREE shuttle from the airport to the conference hotel and reduced rate rooms are available that can sleep 2-4 people. All food served is organic and much is locally grown. Our giveaway bags introduce the participants to healthy and interesting products.

I hope to get back to traveling soon so that I can be an in-the-room Advocate and ask the penetrating and important questions I am known for.

--

Connect with Ann on Instagram: @annieappleseedpr

and on Twitter: @annieappleseed