20TH INTERNATIONAL THYROID CANCER SURVIVORS CONFERENCE
IMAGINE A COMING TOGETHER OF SUPPORTIVE PEOPLE, LAUGHTER, FRIENDSHIPS, some cute PUPS, and BEAUTIFUL HANDMADE QUILTS. ADD MANY DEVOTED MEDICAL DOCTORS and NATURAL HEALING PROFESSIONALS, CONCENTRATING SOLELY ON THOSE AFFECTED WITH THYROID CANCER, ALL IN ONE PLACE. . .
This sums up the 20th International Thyroid Cancer Survivors Conference, which was packed with over 650 people from 40 U.S. states, as well as others who came from Canada, and all the way from Ireland, Sweden and Curacao. This year the conference was held in Baltimore, Maryland and I was thrilled to be able to attend.
The annual conference is sponsored by the nonprofit organization Thyca: Thyroid Cancer Survivors Association, Inc. (Thyca.org) and each year the entire weekend is dedicated to those who have been touched by a diagnosis of thyroid cancer. There were patients, family members, medical doctors, natural practitioners, puppies, homemade quilts, and the halls and meeting places were filled with love and compassion, camaraderie, discussions, laughter and helpful information — lots and lots of information!
One of the biggest hits of the weekend was the Pet Therapy Room, with the generous volunteers from Baltimore’s “Pets On Wheels”. With every attendee being able to interact with their gentle pups (and one gentle kitty), this therapy was a huge hit with everyone! Pets can be very comforting, and their effectiveness in reducing stress and anxiety has been thoroughly documented.
A few of the four-legged stars from the weekend:
The walls were decorated with handmade quilts honoring those who have suffered mightily with thyroid cancer. Two of the beautiful and heartfelt Memorial Quilts created by ThyCa Volunteers are shown here.
Each quilt square is dedicated to a person who struggled with thyroid cancer, and they are sewn together to create a joining of sufferers. Their families and loved ones were affected as well, and the joining of the squares to create one whole quilt can signify the unity that comes from the compassion felt for all. Each name is an individual sufferer, yet the combining of names creates a unity. There were other visible signs of unity throughout the entire weekend, be it a hug, a conversation, a moment of laughter.
There were so many interesting and highly informative sessions throughout the weekend, and I tried my best to pack in as many sessions as I could while I was there! I learned a great deal and I am excited to bring this information to my clients!
Two sessions of contrast, which I will describe a little about, included a session by an endocrinologist on feeling better after thyroid cancer surgery, and a session on the positive effects of using EFT (Emotional Freedom Technique), also known as “tapping”, by a specialist who led the group through a very emotional and enlightening session!
FIRST SESSION: A MEDICAL DOCTOR’S DISCUSSION
(If you don’t want to read about what a medical doctor has to say about treatments after thyroid cancer, you can scroll down to the second part, and read about one of the refreshingly different ways of approaching healing yourself with natural modalities.)
Dr. John B. Tourtelot, MD, endocrinologist, led this discussion, entitled “After surgery, talking about thyroid hormone replacement, and steps toward feeling better”.
(My personal thoughts during the session as attendees discussed their concerns: From the very beginning of a diagnosis, patients very often feel rushed at doctors’ offices, and they are encouraged to “get this over with” as quickly as possible, since it is cancer, and cancer seems to have to be dealt with immediately….my impression from the attendees, who were asking questions and discussing treatment, was it’s extremely important to get people who have been diagnosed with thyroid cancer to research the Thyca website and get as educated as possible BEFORE making the decision to have surgery or RAI, definitely before RAI.)
Dr. Tourtelot explained how juggling the need to avoid cancer recurrence vs. the need to treat a patient’s symptoms can be tricky. He explained there can be heart issues involved if a patient is over-treated, and this unfortunately is not uncommon. He stressed the importance of realizing that “things change” in therapy goals. If there’s a concern about heart disease, it’s more dangerous to go up in medication than down. He discussed medical treatments after surgery, and explained that sometimes there will be no treatment, but usually there is radiation I-131, with the Low Iodine Diet being followed prior to the radiation.
Some Helpful Takeaways From This Session:
“Levothyroxine treatment should begin the day after the surgery.”
“If TSH is very high, this is considered ‘Medically Impaired’, and the patient should not be driving or operating machinery.
“Raising the levothyroxine dose Does NOT address weight gain issues, and going hyperthyroid means a patient could feel miserable and worse.”
“4.5 TSH is ‘barely normal’, and the patient should be put on medication”.
“Levothyroxine can be very dangerous if too high. If a crisis arises where there is too much medication causing distressing symptoms, then eliminate three days of medication. This should help to quickly reduce the symptoms of too much medication.”
“It’s ok to temporarily ‘jump start’ the patient with a T3 medication.” (In my experience, not everyone agrees with these methods but one thing that is agreed upon by this endocrinologist, and just about everyone else, is that “it is a fairly common problem to NOT feel well after surgery, even with medications. Hashimoto’s Thyroiditis is often the culprit involved.)
Do You Feel Worse Since Your Surgery? If So, You Are Not Alone!
The most powerful moment in the session was when when the doctor asked “Who feels worse since their surgery?” Virtually everyone in the room raised their hand…. (So, take heart —You are not alone, if you have felt this way!)
There was an obvious “feeling of belonging” here in this group discussion, as opposed to being “out in the world”, where everyone thinks you should be bouncing back right away, and getting back to your life, feeleing as though others are judging you, and wondering why you are still not well. (This is a concern among most survivors I have worked with.)
Among the extensive information garnered from this session, there was a discussion about Natural Dessicated Thyroid medications. (NDT). The doctor explained how the body mainly uses T4 and converts it to T3 by enzymes. He said doctors (MDs) consider this the “natural way” of thyroid conversion. There are the theoretical concerns that NDT may throw off antibodies, and it is not considered the “standard of care” for Thyca. (Functionally trained doctors have a different view on this!) He further explained that since there’s two ingredients, if the dose goes up, then both T3 and T4 are going up. He prefers to use T3 separately.
He would only use NDT if the patient can’t tolerate levothyroxine, such as having an allergy to dyes, or other ingredients, and also when there is the issue of Hashimoto’s Thyroiditis. When it comes to Hashimoto’s, medical doctors “don’t want to deal with it.” (There, he said it!)
As you may have already heard before in your health journey after thyroid cancer, this endocrinologist explained that “Most people don’t need T3 supplementation”. There’s the chance that you can “Block enzymatic conversion when given both T4 and T3 together”. “You might feel great at first, then not”.
(My personal observation: This session was a little bit like going to a doctor’s appointment, in the sense that the attendees heard the same medical explanations that we hear whenever we go to a new medical doctor or whenever we ask those questions to our medical doctors. It was slightly discouraging (I have heard most of this medical explanation countless times with myself and with my clients), but the feeling of unity between the attendees was really empowering. However, there is a reason NOT to get down about this — medical doctors are an absolutely necessary part of your team of healthcare practitioners, and I personally am forever grateful that there are educated medical doctors who truly want to help, and they are doing everything that they can in the confines of their degree and within the constraints of the restrictions from the insurance companies. What each patient additionally needs is an advocate to guide them back to good health, and that is not a medical doctor’s job. Their job is expert diagnosis and high quality medical treatment.
Your job as a thyroid cancer survivor is to seek out knowledge and find contacts who can follow through along with you, and guide you, after the medical doctors have removed the cancer. You are responsible for bringing yourself back to better health and greater vitality!)
SECOND SESSION: AN UPLIFTING, NATURAL HEALING MODALITY
“What we think about, is what we bring about”
The second session I’ll discuss here was both hopeful and enlightening. Anita Bains, D.PSc, M.S., APRN, BC, led the group through a discussion on the uses of EFT (Emotional Freedom Technique). This relaxation technique is known as a “Mind Body Stress Relief Technique”. This modality uses simple tapping on acupuncture meridian points on the body, with effective physical and emotional benefits. It can be very effective in reducing depression, anxiety and regular day-to-day stress.
Dr. Bains has conducted long-term research on the beneficial effects of EFT with Iraq War Veterans, and there has been a great outcome to her research, as this technique now has been approved for vets with PTSD.
Your ABCs (attitude, beliefs and choices) determine your state of health.
A volunteer came forward during the session, and worked with Dr. Bains on an issue that was distressing her greatly. During this weekend’s sessions, a doctor in another session had just told her husband he was “incurable”, and that word set off a cascade of terror and emotions that culminated in her attending this session with Dr. Bains. As she went through the tapping sequence, she worked through her feelings and the entire audience felt the emotional and uplifting conclusion that she came to about this recent distressing incident.
Takeaway from this session: There’s so much anger and frustration with professionals (and loved ones) who feel they have the right to tell you what YOUR body can, or cannot, do. Remember that YOU are in control of your health. The power is in YOUR hands, and your attitude, beliefs, and choices make all the difference in your health and vitality!
Here’s a link to Dr. Bains’ book entitled “Tapping Into a Wellness State of Mind” : http://amzn.to/2gjeey4
Final comment from a conference attendee: “Wonderful weekend at the Conference. There’s really no way to explain the Conference experience– catching up with dear friends who share the same experience, getting cutting-edge information on the latest treatments, and making new friends. It’s beyond meaningful. Looking forward to next year in Chicago!”
LIVE VIDEO FROM THE CONFERENCE:
A Thyroid Cancer Survivor and ThyCa volunteer named Victoria Ballesteros shared her personal story and also interviewed R. Michael Tuttle, MD, an endocrinologist and Thyca’s Medical Advisor, and you can view the informative video on facebook at the following link:
If you are interested in learning more about what you can do to improve your health after thyroid cancer, click the link below and sign up for a free 20 Minute consultation with me:
For Free 20 Minute Session: https://beyondthyroidcancer.acuityscheduling.com/schedule.php?appointmentType=1231083