5th Annual Joining Force Against Hereditary Cancer

FORCE, Reported by Toni Muirhead

The 5th Annual Joining Force Against Hereditary Cancer Conference was held in Orlando, June 24-26. The conference started Thursday evening with a well attended reception for first time attendees. This was the first time that I have participated as a previvor of ovarian cancer and I took advantage of the evening’s event.

My mom passed away from ovarian cancer and my hope was to find information for myself and my daughter to decrease our risks. Also, being passionate about spreading the word about the benefits of oncology massage I hoped to share my knowledge. I soon discovered that my desire to inform attendees about safe massage during and after treatment was appreciated.

Within minutes of introductions, name, medical history, etc, questions concerning massage were asked and answered as I made my way around the room. I was a bit nervous being there for the first time, but immediately felt more comfortable as stories were shared around the room and I realized that I had a story to share as well. More importantly I witnessed how everyone became resources for each other and role models for living life to the fullest.

During the introductory meeting I learned that FORCE is 10 years old and was formed to improve the lives of individuals and families affected by hereditary breast and ovarian cancer. It is the largest conference worldwide that focuses on hereditary breast and ovarian cancer.

This year 550 attendees came from all over the world to hear about the latest research, risk reducing surgery and reconstruction, healthy life styles that included the importance of diet and exercise, managing surgical menopause, understanding genetic counseling, fertility options for survivors and previvors, as well blending integrative and complementary medicine into your treatment.

Quality of survivorship was a thread that was weaved throughout the conference. The beads around our necks help us to connect as we told our story of why we were there. The beads allowed for ease of introduction as we met throughout the day.

I managed to write down Dr. Karen Hurley’s important message to the attendees. Even though these comments were suggestions while attending the conference, I realized the importance of these words for anyone at anytime.

1. Setting the information thermostat- figure out how much is overload. What is your Goal? Be attentive to your mental state.

2. Reach out and use social support, use tech support, don’t get lost in crowd. Book-endings- is support and encouragement before and after event.

3. Inter- conferencing-check in with inner self- cognitive self at forefront, but emotional memory is being triggered. Remember you are processing information at a deeper level.

4. Physical activity-use gym, walk, etc. A recurring theme throughout the conference.

5. Take a breath- hit reset button, “Breath Doesn’t Lie”- sports quote “ ball don’t lie”, lets you know how you are feeling.

6. When you are compassionately attentive, when you have heard all the information that you can absorb, you are truly empowered, you can then go from information to action.

Many of the breakout sessions dealt with diet and nutrition and the recurring theme that emphasized eat less, exercise more, and encouraged eating more plant based; Mediterranean diets and anti-inflammatory diets . Understanding that not everyone wants to be a vegetarian, but trying to be “more” of a vegetarian is beneficial to all of us, whether we are survivors or previvors.

Interesting facts that I am now aware of for breast reconstruction are silicone ruptures are silent ruptures and that MRI every 3 years are suggested to detect ruptures but insurance probably won’t cover the test. Another interesting tidbit of knowledge, implants are like tires, you can buy warranties and this might be a good idea as health insurance won’t always pay for breaks or ruptures. There is also a new one-step procedure that will add one more level of research for patients trying to decide what type of breast reconstruction to consider.

Dr. Carol Fabian had a full house with her talk on” Hormonal Replacement Therapy in Perspective.” I can imagine with the amount of conversations that took place after her talk and with her breakfast talks the next morning that many women were heading back to their oncologists to discuss the role of HRT in the symptom control of early menopause. Dr. Fabian is the expert in her field, listening to her explain the risks and benefits of HRT, I realized that attendees would be returning home and with the help of their physicians they would have to make tough personal decisions about using HRT, the lowest dosage for the shortest time possible.

Current use of CAM (complementary and alternative medicine) is 50-90% of all Americans. Integrative oncology reaffirms the importance of the relationship between doctor and patient, focuses on the whole person, is informed by evidence and makes use of all approaches, helps to emphasize the therapeutic relationship and makes use of all appropriate therapies, both conventional and alternative.

Many times these patients don’t talk to their healthcare provider about their use of CAM therapies, minorities talk less and not all providers are comfortable with all approaches. This makes talks given by doctors such as Dr. Singh on integrative and complementary so beneficial.

Dr. Diljeet K. Singh reviewed the current research on CAM therapies; supplements (botanicals, herbs, vitamins), controversies concerning antioxidants, soy and phytoestrogens, dairy and interactions with chemotherapy. Mind Body medicines included spirituality, social support, breathwork, manual medicines, which included massage, creative arts, acupuncture and whole body systems such as Ayurveda and Traditional Chinese Medicine.

As an Oncology Massage Therapist she mentioned that there was massage research that helped with the side effects of treatment. Any mention of this information in a room full of survivors by a MD is always appreciated. Research was reviewed on what works and what doesn’t work concerning CAM. Understanding this research allows patients to either find the right physician that will encourage CAM therapies or help to educate their physician.

Dr. Singh commented on the difficulty of conducting research in integrative or whole person or whole body system approaches. Cultures and lifestyles are different, researching one variable, green tea in China, does not take into consideration that their lifestyle is different and this makes research difficult.

Dr. Singh also mentioned that Vitamin C is not standardized, natural products are highly variable and sensitive to aging and that there will always be the PLACEBO effect with mind body and energy treatment. Again she reinforced filling your plate with fruits and vegetables, using almond milk, investigating an anti-inflammatory diet, cautioned people about not using anything in huge doses.

Returning to hear Dr. Singh speak again about Ovarian Prevention I learned that surveillance has its limitations and that the carrier gene-exams every 6 months and blood work, is all that there is there for now. She did mention that when we hear about the symptoms of ovarian cancer; bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly and urinary symptoms, that it is those symptoms that last longer than few weeks that we should be concerned about.

I am grateful for the opportunity of attending this conference. I look forward to spreading the word with everyone that we are in charge of our personal lifestyle changes, a recurring theme throughout the conference. Whether survivor or previvor we can choose to eat healthier, to be less sedentary, exercise more, be aware of our BMI, decrease stress, and use less alcohol.

Most importantly it is vital to be more aware of the environmental factors that cause cancer. Baby steps are better than no steps at all. I already realized that I am a better Massage Therapist because I do understand the complexity of cancer treatment, side effects, and resources that I can help patients find to help them make healthy choices for their quality of life. Added plus, is that I learned that I was about 75% on track for doing what is good for my health as well.

I am especially grateful for the opportunity to attend FORCE and I would like to thank FBCC and Ann Fonfa from Annieappleseeproject for helping me to make educate myself and share that knowledge with my community.

Toni Muirhead,LMT www.acaringtouchforcancer.com

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