Knowledge is Power!

I was fortunate enough to attend the Thyroid Cancer Survivor’s Association’s annual conference which is in its 17th year that was held on 17-19 October in Denver, CO. What a truly amazing experience and something which any thyroid cancer survivor can benefit from attending at least once. It’s not only the information gained about this disease, but those connections with other people who are facing similar circumstances. It was great being able to actually talk and meet those in person whom I have been communicating in the online support forums with.  I just love meeting new people and hearing their stories of where they have been in their journey; we really do learn from one another.

For the very first year after my diagnosis I really felt like I was up a creek without a paddle. I had no idea of how to steer my way through this cancer diagnosis. The only support system I had was my immediate family who did their best to provide that assurance to me that I was going to be ok. However, it would have been a much easier journey had there been someone I could talk and relate to who knew what I was going through and experiencing. At the time of my diagnosis, I was going in between having to be rushed out of Japan back to the United States in order to get good medical care, being separated from my immediate family for many months and then returning back to Japan for only a short time as then our family was transferred back to the United States for my husband’s job just so that we could be near some good facilities for my follow-up care. After our move to Colorado, I was able to learn about the local support group which I found out about from a flyer which was in the endocrinology office. So I thought to myself, what the hell I might as well kill two birds with one stone. So after one of my medical appointments I decided to stay a bit longer in Denver in order to attend the support meeting. Was that ever a good decision as the support group has been such a lifeline for me. It has helped me to know what is and is not normal and the questions I need to be asking my doctors. More importantly they are truly a wonderful group of people that I now call my dear friends. I would have to say that the majority of what I have learned about this disease has come from support groups, both local and online. Our doctors simply don’t have the time to tell us everything we need to know about our disease and why we need to be our own advocate and educate ourselves.

With that being said the support groups have spoken very highly of attending this annual conference that the Thyroid Cancer Association has every year. This is a conference where they have experts from all over the country come and talk about various topics. It is at a different location every year and this year it fortunately was held in Denver, so I was able to attend. There is new information that is evolving all of the time as researchers find new ways of treating this disease. The conference was full of so many wonderful speakers  with doctors from all over the country from some of the top cancer centers such as MD Anderson, Memorial-Sloan Kettering, John Hopkins, Massachusetts General…….the list just goes on and on.

The topics which I was most interested in were other treatment options for those with advanced disease that have failed traditional treatments with radioactive iodine. I wanted to educate myself about the chemo drugs that are being used in clinical trials that have had success. This will be the next step for me when this watchful waiting approach will no longer hold for me. My medical team will have to determine whether surgery is still an option, but I do understand that it might not be feasible, because of where my cancer is still located. It could possibly be too risky, but that is a decision which my surgeon will have to assess, but something that we will do together. I am fully aware that my cancer will grow at some point in time; we may need to explore other options and I just want to be prepared for what lies ahead.  It was quite interesting to hear these doctors explain about the different chemo drugs that are successful, but they also explained in great detail the science in how they work in a language that was easily understandable. I was able to gain knowledge about the different mutations and what specific drugs are being used to target these mutations. In addition, I learned about a clinical trial that Memorial-Sloan Kettering is working on to reverse the effect so that those of us who are RAI refractory can then have the ability to take up the iodine so that type of therapy can then be utilized.

One amazing speaker Dr. Steven Sherman, chairman from an organization called ITOG (International Thyroid Oncology Group) talked about the group and what their mission and purpose is.  This is a collection of scientists, doctors and patient volunteers in which they focus on identifying new therapies for thyroid cancer and improving patient experiences. More information can be obtained at their website:

http://itog.org/

The Dinner/Auction was a very fun night. At the live auction someone had offered to do a dance on the table to get people involved by pulling out their pocketbook to raise funds for research and throughout the night over $35,000 was raised for thyroid cancer research. One of the great doctors was honored for his work and support of all thyroid cancer patients, Dr. Bryan Haugen, who is such an amazing man! In addition, there was dancing which was a total blast and I think was just a fun night where we could all relax a bit and not have to think about cancer, but just to have some good old fun!

Overall, there were more than 600 people from the US, Canada, and United Kingdom which attended the ThyCa conference this year and from what I hear it was the biggest attendance on record! So much information was gained at this conference, but the key message that I want to get across to people is to educate, educate, educate yourself about your medical conditions and be aware of your own body, so when you see those red flags come up that you need to take action, because for some it is just too late. What I think is the big take away here is that knowledge is a powerful tool that we can utilize and something which needs to be shared which is why I continue to share what I know about this disease. I came across this quote that I think is very fitting:

 

knowledge-is-power1

 

 

 

Awareness

Well it is that time of year when summer ends and kids are back in school and after a nearly three-year hiatus I am back to working once again. I have started working for the local school district working with special needs children again. It is such a wonderful feeling to be back doing what you love and I didn’t realize just how much that I missed it! These children have such amazing sweet spirits that can accomplish more than what they are given credit for.

Awareness Month1

With that being said it is also Thyroid Cancer Awareness month. The history behind this awareness month is that it is a “worldwide observance, sponsored and initiated by ThyCa: Thyroid Cancer Survivors’ Association which began in 2000 as a week in September and then in 2003 was expanded for the whole month of September. Thyroid Cancer Awareness Month promotes thyroid cancer awareness for early detection, as well as care based on expert standards, and increased research to achieve cures for all thyroid cancer. People and organization in 56 countries around the world take part.

As a thyroid cancer survivor, it is my mission to spread awareness and to help others in their own journey with this disease. My hope is that this blog will get the word out about thyroid cancer, survivorship and much more. Tips which can help you to spread the word are by taking a look at ThyCa’s link on how to help:

http://www.thyca.org/how-to-help/awareness/awareness-tips/

Patient and Family Centered Care Council (PFCC)

Throughout November and December 2012 I have been in the process in joining the Patient and Family Care Council (PFCC) at UCH (University of Colorado Hospital). It has been a process, but I am so grateful to Tommy Stewart for getting me involved and wished that I could have been involved a lot sooner. Tommy is another thyroid cancer survivor that I have met while going to the ThyCA meetings in Denver, Colorado. It has been so refreshing being able to have a voice and to collaborate ideas with other members of this council that can benefit cancer patients and make their experiences better. In addition to serving on this council, I have been involved in assisting in other areas of the Cancer Center as well. By focusing on others whose cancer situation is a whole lot worse than mine, I see this as an opportunity in giving back to those who have helped me in my journey and I hope that I can help others in theirs.

When you lose yourself in helping others your own problems seem so minor and in some respect you also find yourself and know what you can accomplish with the right perspective. This really has been a turning point for me in my journey; it has allowed me to leave the adversity I have faced behind and to move in a more positive direction. My hope is that if I can persevere and move on, that anyone facing a similar situation can do the same and I hope that it provides inspiration and encouragement to others that there is life after cancer. Just because one receives that cancer diagnosis does not mean the end. What matters is how we face these trials and that we not only endure them, but to endure them well and remember that we are NEVER alone in this fight. There is always hope and that has what has helped me to continue moving forward.