top of page

From Diagnosed To Advocate

By Ann Fonfa

My Story

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.


My Advocacy

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.


What’s On The Horizon

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


42 views0 comments

Recent Posts

See All

Meditation Mondays:

Chakra Chanting with Gloria

Mondays at 10:00 a.m. ET 

RSVP

Thursday Night Thrivers:

All Stages

Thursdays at 7:00 p.m. ET

RSVP

 

Thursday Night Thrivers:

Metastatic Breast Cancer

First and third Thursdays

of the month at 7:00 p.m. ET

RSVP

 

Thursday Night Thrivers:

Inflammatory Breast Cancer

Second Thursday

of the month at 7:00 p.m. ET

RSVP

Tuesday Night Thrivers

Después de un Diagnóstico:

Spanish support group

2do y Cuarto Martes de cada mes 

7:00 p.m. ET

RSVP

Art Therapy

October 2 6:00 p.m. ET

RSVP

Yoga Stretching for DIEP flap

October 3 6:00 p.m. ET

RSVP

Yoga with

Chair assist 

October 10, 11:30 a.m. ET

RSVP

Writing Workshop:

Reflect and Recharge

October 16, 6:00 p.m. ET

RSVP

Restorative Yoga:

Fall into Meditation

October 17  6:40 p.m. ET

RSVP

Qi Gong 

October 24, 11:30 a.m. ET

RSVP

Breast Cancer Book Club

November 5, 11:00 a.m. ET

RSVP

Más eventos en español

RSVP

Upcoming Events

1

Surviving Breast Cancer provides breast cancer support, events, and webinars at no cost to you! Whether you are looking to gain more knowledge on a particular topic or meet up with other breast cancer survivors, we have something for everyone. 

2

Our standing appointment on Thursdays is for all stages. We also host specific breakout groups once a month for specific stages and subtypes such as Metastatic breast cancer, and Inflammatory Breast Cancer, etc. 

3

The Book Club meets the first Sunday of every month at 11 am ET. You are welcome to join each month or pick and choose your month based on your availability and the book we are reading. 

4

Through art, writing, and other creative modalities, we hold the power to manage our stress, make sense of our now, and relax into moments of stillness. 

5

Free, monthly, online classes in restorative yoga, yoga for breast cancer, and Zumba. 

6

Después de un Diagnóstico

bottom of page