Enough is enough!

cancerYesterday was a sad day in our small, online community of thyroid cancer survivors.  Two survivors lost their battles to thyroid cancer. While that may not seem like a lot in the grand scheme of things, it is enormous for those of us branded with the scarlet letter of cancer.  As many of my posts have explained, thyroid cancer is often dismissed as the “good cancer,” and as such, many doctors, cancer organizations, and even the public in general do not take this cancer seriously enough. Well, here is a news flash for you: thyroid cancer patients are sick to death of having to justify our disease in order to get a shred of respect.  If you think thyroid cancer is such a walk in the park, spend some time in our shoes and tell us how great it is.
 
FACT: There is no cure for several forms of thyroid cancer.   If you have distant metastasis, regardless of the type of thyroid cancer, there is no cure.  If you have Anaplastic or Medullary, and in some instances, BRAF or RAI (radioactive iodine) refractory thyroid cancer, it can be a death sentence.  If you have Hurthle Cell Carcinoma, traditional methods of treatment and monitoring for recurrence do not work, and the trick is finding it if it comes back, and surgically removing it.

 

FACT:  The traditional treatment for thyroid cancer (RAI) also puts us at an increased risk for secondary cancers.   The more radioactive iodine you receive, the greater your risk for other cancers.  Another common side effect of this traditional treatment is that it can destroy our teeth, salivary ducts and even cause issues for our parotid glands.  Of course, all of the dental work needed to repair this damage is not even covered by insurance.  Making matters even worse, if your thyroid cancer is not responsive to this traditional treatment, your treatment options are incredibly limited and do not always work!

 

FACT: Just because we don’t look like you think a cancer patient should, does not mean it’s not still kicking our ass!  Try living a normal life without a thyroid.  Adding insult to injury, try having your doctor tell you that “It’s no big deal. You’ll just take a pill for the rest of your life” only to find out that nothing could be further from the truth!   Your natural thyroid produces five different hormones (T4, T3, T2, T1 and calcitonin).  Yet, traditional thyroid hormone replacement only replaces T4 (a storage hormone), and your body is expected to convert that T4 into everything your body needs.  Unfortunately for a huge portion of the thyroid cancer community (and thyroid disease survivors in general), our bodies do not convert T4 into everything our body needs, and as a result, we must have direct T3 (the bio-active form of thyroid hormone that every cell in your body needs to function) in order to live a normal life.  Sadly, there is a significant portion of the medical community that refuses to give their patients a choice as to thyroid hormone replacement, and as a result, their patients’ quality of life suffers tremendously!  I see this every day in the Thyroid Survivor Network support groups, and it is inexcusable.

 

FACT:  Thyroid cancer is a life sentence. Most thyroid cancer patients will spend the rest of their lives dealing with the effects of losing their thyroid and/or dealing with thyroid cancer.  Most of us never have the security of being “cured” from cancer because thyroid cancer can come back decades later.  We are monitored for the rest of our lives, and often must spend thousands upon thousands of dollars in out-of-pocket medical bills just to get somewhat decent care.  Many of us were forced to break away from the confines of traditional endocrinologists in order to get our lives back.  Instead, we turned to more alternative doctors, such as those specializing in functional or integrative medicine.  But while we now have doctors willing to listen to us, who understand the importance of direct T3, and are willing to run thorough labs- doing so comes at a significant financial cost as getting our lives back is not covered by insurance.

 

FACT:  While thyroid cancer typically has a good prognosis (assuming all treatment protocols actually work), studies have demonstrated that thyroid cancer survivors have a similar or worse quality of life as compared to survivors of other types of cancer.  Please do not take this to mean that we do not appreciate the battle waged by other cancer survivors with traditionally more lethal forms of cancer.  We do.  We feel a strong kinship and respect for every single cancer patient that has to fight this battle, and we will continue to pray and fight for a cure to all cancers.  What this study, and others like it, demonstrate is that the overall impact of having thyroid cancer and living the rest of your life without a thyroid can be devastating and certainly worthy of garnering the same respect and support that survivors of other types of cancers receive.  Cancer is cancer, and we are all in this together!

 

FACT: There are no big charitable organizations that give a damn about thyroid cancer.  When was the last time you have seen a 3-day walk, or Relay, or fundraiser devoted to helping with thyroid cancer?   The fact is, many thyroid cancer patients have reached out to major organizations for help, only to be turned down because there were no programs available to us.  Yet, thyroid cancer is the #1 group of medically related bankruptcies among all cancer survivors.

 

FACT:  If it is one thing you get out of reading this post is that all cancer sucks.  It does not matter what kind of cancer someone has.  We all have to live the rest of our lives cognizant of the fact that we had cancer, that it can always come back, and it could eventually kill us. Because of that, survivors of any form of cancer are a family, and we mourn every time one of our fellow survivors loses their battle.

So, the next time you hear that thyroid cancer is the “good cancer,” please remember those who have lost their lives to this disease, and those who will spend their rest of their lives fighting it, without nearly the support or respect they deserve.  It’s the least you can do.

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48 thoughts on “Enough is enough!

  1. Well stated, Jill. I’m so proud of this article and of you. Thanks for being the voice that is inside all our heads.

  2. I read this twice. You nailed it Jill – 1000 %. Thank you thank you for writing what we want the world to know.

  3. 100% facts!!!! too bad many think it’s one surgery, and one pill and done. NOTHING is Further from the TRUTH of it thanks for posting this for ALL cancer survivors !!

  4. The only advise I could give is to never give up,live life to the fullest and believe that our God still performs miracles. Prayers for the families of the friends we have lost. May they rest in peace free from their cancer forever. God Bless all cancer patients.

    1. I agree! We have to live life to the fullest and never take a single day for granted! Wonderful advice! Thank you!

  5. Thank you, I wish there was a way to be sure my fam would read this?! I will share it and Pray they do , for in their eyes I am an attention seeker, feel sorry for myself. I’m judged harshly.
    Thank you again for this, I know with you and all our thyca community I’m not alone. 💖

    1. Thank you, Elena! Please feel free to share with your family and friends. I hope they do read it so that they can understand all that we go through! Even if they don’t, remember that you are never alone!!

  6. While I did not have cancer, I have had my thyroid removed and you are so right when you say we “look” normal ..i can’t imagine having had my thyroid removed AND the dark cloud of cancer looming on top of that. Great article!

    1. Living without a thyroid is challenging to say the least! I hope you are doing well, Patti! Thank you for your comments!

  7. Thank You Jill you always have our back. It’s even more confusing when they tell you that you have cancer and 3 years later they have new guidelines. So no Thyroid & no cancer and have to live with taking a pill the rest of your life.. 1000 Thank Yous isn’t enough for all you do!!

  8. Wonderfully written Jill. This is very educational to those that have no clue, such as myself. I’m so very proud of you. Your strength alone is so very inspirational to those that know what an incredible woman you are. I love you dearly and wish nothing but health and happiness for you. ❤️

  9. Great information to share!!!! Thank you so much for sharing! We need the medical community to understand that thyroid illness and sickness changes our lives forever. I have been in and out of the hospital with so many health issues since the removal of the thyroid due to cancer and it has been far from a walk in the park!!!!! 13 years on Synthroid and all the endocrinologist say well your TSH is normal so I’m perfectly fine!!!!!!! This is the furthest from the truth. Everyday is a struggle just to get out of bed!!!! Finally found a doctor who is also functional medicine and she gets it!!!!!! Can’t wait to get my life back and to “Stop this Madness!!!!! Never give up and find a doctor that listens!!!!!

    1. Thank you, Sally! We have a long way to go to educate others as well as the medical community- but we’ll get there!

  10. Thank you for your straightforward thoughts! We started the Bite Me Cancer Foundation because my 23 year old daughter was diagnosed with Sporadic Medullary Thyroid Cancer 6 years ago; yes, at age 17. Such a challenge to have no thyroid! Such a challenge to be told there is no treatment other than surgery. Now she is on a new oral chemo, has to take it every day until it stops working, and it sucks. Bite Me Cancer raises research funds for thyroid cancer (and also supports teenagers dealing with all cancers.)

    1. Thank you, Sharon! Bite Me Cancer is a fantastic organization! I am so sorry for all your daughter is going through. We need more treatment options for thyroid cancer patients, especially those of us where surgery is really the only option. I hope both your daughter are both doing well! XO

  11. Thanks so much! Your truthful words brought tears to my eyes. How can others appreciate what we must deal with, when our own Endocrinologists have no respect for us?

  12. Yes!!! Health care professionals that continue the myths about thyroid cancer are doing harm to the very people that they should be helping. It is their responsibility to get the facts and educate the public. Thank God for those that are spreading the truth. Shame on those that are spreading the myths and ignorance about a topic as serious as cancer. The words “good” and cancer DO NOT even belong in the same sentence!!!! It’s an oxyMORON.

  13. Thank you very much for this information I am a 16 yr survivor and go see my doctor every 6 months for my check up and he has been great. And check all of my thyroid levels but hasn’t understood I don’t feel like me . I have just now started to find these groups on line and they have been very helpful. Thank you again for this. I will be passing it on.

  14. On one of my ThyCa insomnia nights this blog
    post made me feel halfway normal. I long for my friends and doctors to be educated that it is not the “good cancer”. Thank you for all you do for the ThyCa community.

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