~ I’m grateful to be a ThyCa survivor ~ I’m grateful to be a ThyCa survivor ♥ ~ I’m grateful to be a ThyCa survivor ~ ♥ ~ I’m grateful to be a ThyCa survivor ~ I’m grateful to be a ThyCa survivor ~ My parotid gland still hurts when I eat from the RAI (RadioActive Iodine). I get small bits of food caught in my throat at times. My vocal chords are still a little damaged from the thyroidectomy. My fear wakes up every 6 months when I go for follow-up scans and blood work. I get hot flashes and chills now more than ever. My memory is not was it was before. So I need to remind myself, despite it all. I FOUGHT THE FIGHT. I AM A CANCER SURVIVOR and THRIVER!!!  AND FOR THAT, I AM SO GRATEFUL!!
I’m going for my ThyCa ultrasound scan later today. The cycle of fearful thoughts are waking up in my mind.  They overpower me at times.  I wish there was a volume button, so I could put the negative ones on mute!  The thoughts are spinning around over and over.  The typical ones are…What if the cancer came back? What if it spread? Will I need another operation? I don’t want to go through the LID and RAI again. When will this end? Will I be able to get through the cancer battle again?  Am I a burden on friends and family?  When will I get the results?
One after another, the thoughts pop into my mind.  The reality is that I am taking care of myself and going for my regular follow-up visits, blood work and scans. I’m taking my medicine.  I talk about how I feel good and not so good. I blog about it, which helps.  I get helpful comments from my readers and that fills my spirit.
At this moment, I am a cancer SURVIVOR!! All of the thought are simply thoughts.  They are not reality.  I don’t have to give them power. The rest is unknown, fear of the unknown. So for now, I will stay in the present moment.  Yeah, that feels much better. I just needed to adjust my mind.  Ah, a sigh of relief. Calmness washes over me.

“Cancer comes into a life and worms its way in. It’s the unspoken presence every day of the person’s life—‘the cancer’s back’ or ‘in remission’ are common references in the life of the person with cancer. However, it continues to be the people who can fight it that make the whole disease seem beatable and worth fighting.” ~Anonymous

I was so touched by this inspiring quote, that I had to share it with all of you.  There were so many thoughts that came up for me when I read it.  As a cancer survivor, I can look back and see that it was a fight.  There were so many times that I wanted to give up, but I kept on going.  I am grateful to be in remission.  There is an “unspoken presence” ever since I was diagnosed.  I don’t feel it most days, but it is there.  It is something that I have accepted.

My hope is to stay in remission.  There is a recurrence rate of about 30% with my type of cancer.  But percentages don’t really mean much to me.  When they found my tumor, I was told that there was a 95% chance that it was non-malignant.  Regardless of the percentage, I knew in my gut that it was cancer.  When the results came back, it was confirmed that the tumor was malignant.  I was one of the people in the 5% category.  Those were not odds that I was happy about beating.  But it did teach me not to give percentages too much power.

I also learned that my health and well-being were worth fighting for.  Surviving cancer was worth the fight.  I was worth the fight!  It changed me.  I discovered my inner-voice and spoke up instead of staying silent.  I asked doctors all of my questions, instead of filtering the ones out that didn’t seem important.  I made the calls to my insurance company many times to resolve issues with coverage and billing instead paying the first bill I received.  I didn’t pay the price for the disconnect within the healthcare system.  I opened my mouth and talked about how I felt and didn’t pretend that everything was alright all of the time.  I prayed and prayed and had faith that it would all work out.  I created this blog to share my experience and help others.  In turn, I was able to get my virtual voice heard.  And to my pleasant surprise, I have gotten back so much love and support in return.

We are all worth the fight!

At times I wonder if certain cancer treatments are more dangerous or harmful than cancer itself.  A couple of years ago, my cancer treatment made me radioactive for a couple of weeks to kill the remaining cancer cells.  (No, I did not glow.)  But I was isolated from friends and family for over 3 days.  They even gave me a letter to carry in case the radioactivity left in my body set off any alarms in government buildings or airports! That caused me to step back and wonder if that treatment was worth the risk.  It worked, so I guess it was.

I have friends that have gone through chemotherapy and take all kinds of medications with terrible side effects to treat cancer.  The goal is to kill the cancer, not the person.  At times, I wonder if the doctors remember that part.  It seems like the side effects from the treatments drain what little energy is left in our bodies at the time.

I’ve moved on from cancer treatment to cancer follow-up procedures.  My doctor recommended that I get Thyrogen shots and blood work to see if my levels change.  The Thyrogen stimulates the cancer producing cells.  The shots are administered two days in a row.  One shot is the left buttocks and the other shot in the right.  It is literally a pain in the @ss!  I got the first shot this morning.  Ouch!! It hurt and burned.  Now I have a headache and feel a little nauseous from the Thyrogen.  I don’t want to go back tomorrow for the second shot.  I’ve learned that part of surviving cancer is staying positive and doing things that I don’t necessarily want to do.  I will continue to fight the fight!!!

The results should be back next week.  I will do my best NOT to think about it and live my life. (Although every time I sit, my sore butt will remind me of the shots!) There is no point in worrying about it today.  I will need to remind myself of this several times a day.  If the blood work results are high enough to detect cancer, then they will move forward with treatment.  If not, then I will continue going back every six months for follow-up visits and testing.  Either way, I guess this pain in the @ss it worth it.  I am praying that the results are good.  Regardless, I will get through it and continue sharing my journey.

xoxo,

Thyro-Jenn

The American Cancer Society is the nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. www.cancer.org

The American Institute for Cancer Research is the cancer charity that fosters research on diet and cancer prevention, interprets the evidence, and educates the public about the results. www.aicr.org

American Society for Radiation Oncology ASTRO’s mission is to advance the practice of radiation oncology by promoting excellence in patient care, providing opportunities for educational and professional development, promoting research and disseminating research results and representing radiation oncology in a rapidly evolving healthcare environment. www.astro.org www.rtanswers.org

Association of Cancer Online Resources ACOR is a collection of online communities designed to provide timely and accurate information in a supportive environment. www.acor.org

Bloch Cancer Hot Line consists of a group of individuals who have had cancer who are available to talk with newly diagnosed cancer patients, promptly upon diagnosis. www.blochcancer.org

CanCare is made up of cancer survivors of more than 50 different types of cancer volunteer for CanCare to provide emotional support to those currently facing a battle with cancer. A patient is matched with a CanCare volunteer for one-on-one emotional support based on a variety of criteria including cancer site, treatments, age and gender. www.cancare.org

Cancer Hope Network provides one-on-one support to people undergoing treatment for cancer, and to their families. This support is provided by training individuals who have recovered from cancer, and matching them with cancer patients currently undergoing a similar experience. www.cancerhopenetwork.org

Cancer Research Institute CRI is dedicated exclusively to the support and coordination of laboratory and clinical efforts that will lead to the immunological treatment, control, and prevention cancer. www.cancerresearch.org

Cancer Support Community provide professional programs of emotional support, education and hope for people affected by cancer at no charge so that no one faces cancer alone. www.cancersupportcommunity.org

Cancer Survival Toolbox is a free, self-learning audio program that has been developed by leading cancer organizations to help people develop important skills to better meet and understand the challenges of their illness.
www.cancersurvivaltoolbox.org

Cancer.Net, formerly People Living With Cancer (PLWC), brings the expertise and resources of the American Society of Clinical Oncology (ASCO), the voice of the world’s cancer physicians, to people living with cancer and those who care for and care about them. All the information and content on Cancer.Net was developed and approved by the cancer doctors who are members of ASCO. www.cancer.net

CancerCare provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs—including counseling and support groups, education, financial assistance and practical help—are provided by professional oncology social workers and are completely free of charge. www.cancercare.org

Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life.
Click here for more information from Copingwww.caringinfo.org

The Coalition of Cancer Cooperative Groups is a nonprofit organization whose mission is to improve the quality of life and survival of cancer patients by increasing participation in cancer clinical trials.  www.CancerTrialsHelp.org

Coping® with Cancer magazine is written by and for the cancer community. A wide variety of professionals share their knowledge and experience in easy-to-read, relevant articles, and patients, caregivers, and survivors share their strategies for coping. www.copingmag.com/cwc

Imerman Angels connects a person fighting cancer with someone who has beaten that same type of cancer, completely free of charge. This one-on-one, mentor-type relationship is provided to anyone needing support during his or her battle with cancer, anywhere across the country and worldwide. ImermanAngels.org

Journey Forward‘s computer-based tool enables anyone diagnosed with any type of cancer to have their medical history, cancer treatment summary and a post-treatment survivorship care plan captured in one place.
www.journeyforward.org/professionals/survivorship-care-plan-builder.htm

Kids Konnected provides friendship, understanding, education, and support for the children who have a parent with cancer, or have lost a parent to cancer. www.kidskonnected.org

The Lance Armstrong Foundation unites people to fight cancer and pursue an agenda focused on prevention, access to screening and care, improvement of the quality of life for cancer survivors, and investment in research. www.livestrong.org

Life Beyond Cancer is a life coaching program for people who are ready to move forward and start a new chapter in their lives.  This program is offered to individuals and groups.  All life coaching sessions are conducted via telephone.  If you are ready to live life beyond cancer, set up a free intro life coaching call today. http://www.readytochangelifecoaching.com/Life_Beyond_Cancer.html

National Cancer Survivors Day is held annually in hundreds of communities throughout the world on the first Sunday in June. It is a symbolic event to demonstrate that life after a cancer diagnosis can be a reality.
www.ncsd.org

The National Coalition for Cancer Survivorship advocates for quality cancer care for all Americans. NCCS believes in evidence-based advocacy for systemic changes at the federal level in how the nation researches, regulates, finances, and delivers quality cancer care.  www.canceradvocacy.org

National Comprehensive Cancer Network improves the quality, effectiveness, and efficiency of oncology practice so patients can live better lives. www.nccn.org

National Lymphedema Network is an international non-profit organization providing education and guidance to lymphedema patients, health care professionals and the general public by disseminating information on the prevention and management of primary and secondary lymphedema. www.lymphnet.org

OncoLink was founded to help cancer patients, families, health care professionals and the general public get accurate cancer-related information at no charge. www.oncolink.upenn.edu

The Ulman Cancer Fund For Young Adults provides support programs, education and resources, free of charge, to benefit young adults, their families and friends, who are affected by cancer, and to promote awareness and prevention of cancer. Click here for more information from Copingwww.ulmanfund.org

Vital Options International is an international organization working with the patient advocacy and professional oncology community throughout the United States and Europe. Its programs enable patients and their loved ones to interact directly with leading worldwide oncology opinion leaders regarding the latest advances in cancer treatment, research, advocacy, and public policy issues www.vitaloptions.org

I went for a follow-up visit to my Endo the other day.  My results from my blood work and scan were good (yay!). However, he wants me to get Thyrogen shots and blood work so he can make sure we are not missing anything. The shots and blood work are supposed to give us a better look at whether those thyroid cancer cells are really gone or just hiding.  Managing Thyroid Cancer with Thyrogen is filled with information about Thyrogen and a good resource to have on file.  I found it to be very helpful.

I had the thyrogen shots in 2009 to help prepare my body for the RadioActive Iodine scan.  The shots were covered by my health insurance company.  Since each shot is around $1,200 and I got two shots, I was very happy that I didn’t have to come up with $2,400 to cover the cost.  This year, my Endo sent the Thyrogen order to the local CVS pharmacy.  I got a call from the Pharmacist telling me that it was NOT covered by my insurance company. What?!!!  This year, it seems my health insurance company is going to fight me on the coverage.

It really upsets me to know that many people would settle with that answer and charge the $2,400 for the shots on a credit card that they probably already owe a few thousand dollars on already.  The lesson here is DO NOT SETTLE.  FIGHT FOR YOUR INSURANCE COVERAGE!! At least that is what popped into my mind when I was told it was not covered.

First I called my insurance company, United Healthcare to see why it WAS covered last year, but NOT covered this year.  The UHC Rep asked me if it was processed through the prescription side or the medical side.  I had no idea. She looked it up and said that it was not showing on the prescription side.  She put me on hold for several minutes, then came back and transferred me to someone in the Claims and Benefits department for further assistance.

The Claims and Benefits Rep was pretty clueless.  She was not sure what Thyrogen was and asked me to repeat myself several times.  I think she was stalling so she could fumble through the “UHC Customer Services Manual” 🙂 Next, she put me on hold for about 10 minutes, which is to be expected.  (I think they do that sometimes hoping the caller will hang up!)  Then she read me a couple of paragraphs of health insurance coverage lingo about my plan. I started wondering why I even called.  I am perfectly capable of going online and looking up my coverage.  I was calling because I thought speaking to a live person would be helpful.  But instead it increased my blood pressure…a lot! After 22 minutes, I ended up with no update or additional information.

BUT I DIDN’T GIVE UP. I did a little digging to see what I could find on my own.  I called my contact from Johns Hopkins  to see how they got it covered last year.  She told me that they go through ThyrogenOne, which is part of Genzyme, the manufacturer of Thyrogen.  ThyrogenOne is set up to send prescription referrals to the most appropriate specialty pharmacy based upon the individual patients insurance.  Each insurance company usually contracts with one or two specialty pharmacies so it is important that the Rx referral get to the right place based upon your insurance.  ThyrogenOne’s phone number is 888 497 6436, option 1, they would be able to provide you with additional details and possibly the prescription form your physician needs to fill out and fax in.  First find out if your doctor has a ThyrogenOne T1 Reimbursement Form.  That is what they need to get the order going.  If not, your doctor will need to call Thyrogen One directly to find out how to get the form.

It all started to make sense. My Thyrogen order was placed by my Endo with the local CVS pharmacy and so it was not covered.  Interestingly enough, I learned that PharmaCare, a specialty pharmacy division and subsidiary of CVS Corporation has been selected by Genzyme to be a national distributor of its drug Thyrogen(R) (thyrotropin alfa for injection), a diagnostic tool in the management of patients with well-differentiated thyroid cancer. Oh really!! So the local CVS was not selected to distribute the Thyrogen and therefore it is not be covered by my insurance company.  However, if the Thyrogen was ordered through the CVS specialty pharmacy division, PharmaCare, it would be covered? The plot thickens.

I got in touch with my Endo and let him know the details about the coverage of my Thyrogen shots.  He did have the forms for ThyrogenOne, but tried going direct through the local pharmacy first because sometimes that works. He will contact ThyrogenOne and get them the information they need for the order.  I’m hoping it will be covered, but I won’t know for sure until next week.

One more note…I discovered that since May 2010, there is restricted availability of Thyrogen in the US. See for yourself in this write-up from the USDA site CDER Statement to Healthcare Professionals: Restricted Availability of Thyrogen.  Isn’t it amazing what we can find out these days with access to the internet?

My Endo is on vacation this week.  So I won’t know the final outcome until next week (fingers crossed.)  I don’t know what will happen.  I do know that I need to save my energy for this little battle with the insurance company.  I won’t focus on it until I hear back from my doctor or insurance company next week.  There is no point in allowing it to take up space in my head this week.

I’m sure many of you have gone through similar battles with your insurance companies.  Let’s help one another and share information that might allow others to get a claim covered.  I will keep all of you posted when I get the next update.  Until then, please share your comments and any other good tips or advice that might help another cancer survivor win the health insurance coverage battle!!!

Knowledge is power. One important thing I’ve learned during my journey down the cancer road is that I am my advocate for my health.  I am the one responsible for asking the questions and doing my homework.  There is no such thing as too much information and knowledge when it comes to cancer.

The medical field is constantly making changes to guidelines, procedures, recommended medications and more. Our doctors should be up to date on this information, but many of them are not.  Find the ones that are current on what is going on in the medical field.  As a patient and cancer survivor, it is also my responsibility to make sure that I learn all that I can about my medical condition.

As a thyroid cancer patient, I read things like the Revised American Thyroid Association Management Guidelines for Patients with Thyroid Nodules and Differentiated Thyroid Cancer and tried to stay awake while doing it.  There is a lot of good information in there.  I suggest you skim over it if you have been touched by thyroid cancer.

This is just one example.  There is a world-wide web of information out there.  Be sure to do your research on reputable sites.  Unfortunately there is a lot of bad information and fear-based opinions out there as well.  I found that when I stay on professional sites, I get the beneficial information that give me the knowledge that I need.