First off, ThyroidChange volunteer and thyroid cancer patient, Jennifer Beaurone, discusses Thyrogen injections, RAI, TSH suppression and the low-iodine diet.
A (Jennifer Beaurone):
Thyrogen is a protein that is similar to TSH (human thyroid-stimulating hormone). It is administered to patients in the form of an injection and has multiple uses:
Thyrogen is injected into patients after thyroidectomy (thyroid removal) to ensure a reliable Thyroglobulin (Tg) blood test can be performed to detect the presence of any remaining thyroid cells that may or may not be cancerous. Post-thyroidectomy, Tg levels should be very low to non-existent. A positive result can indicate remnant cells, which need to be removed to eradicate the risk of thyroid cancer. Thyroid cells produce Tg, but can only do so if a patient’s TSH is sufficiently elevated. Thyrogen is administered to stimulate the body’s TSH production.
In addition, Thyrogen is used after a partial or total thyroidectomy to combat feeling hypothyroid prior to a thyroid remnant ablation, which is a dose of radioactive iodine given to destroy any remaining thyroid tissue in the body after a thyroidectomy. Thyrogen is administered to ensure the body has a sufficiently elevated TSH so the thyroid cells can effectively absorb this dose of radioactive iodine.
Q: Is Thyrogen 100% effective?
A (Jennifer Beaurone): No. Even when used, cancer might still be undetectable.
Q: Can anyone use it?
A (Jennifer Beaurone): It may not be used if you still have a large portion of thyroid remaining.
Q: What side effects are there?
A (Jennifer Beaurone): You may experience nausea, vomiting, headache, fatigue and dizziness.
Q: What is RAI?
A (Jennifer Beaurone): RAI is Radioactive Iodine. It is a treatment used to ablate thyroid tissue and to kill cancer cells.
Q: How is RAI given?
A (Jennifer Beaurone): It can come in either a capsule or an I.V. (intravenous)
Q: How does RAI work?
A (Jennifer Beaurone): Thyroid cells absorb iodine from the body. Because of this, radioactive iodine is absorbed into thyroid cells.
Q: How do I prepare for RAI?
A (Jennifer Beaurone): Usually your doctor will have you prepare by not taking your thyroid medications prior to the treatment. You may also need to be on a low-iodine diet for up to two weeks prior to RAI. Building up your TSH will allow for the treatment to be more effective.
Q: What side effects are there?
A (Jennifer Beaurone): If you’re not taking your thyroid medications, you will probably begin to feel the effects of hypothyroidism. You may gain weight, feel sluggish and tired, etc. You may also have swelling and soreness of the neck and salivary glands, as well as possible nausea and vomiting.
Q: Since this is Radioactive Iodine, will I be able to go home after my treatment?
A (Jennifer Beaurone): It depends on the dosage of your treatment. However, in most cases, you will be advised to stay away from others for at least one day (although other countries may have stricter guidelines) because the treatment will cause you to emit radioactivity.
Q: Once I’ve been treated for thyroid cancer what’s next?
A (Jennifer Beaurone): After treatment, your next step might be to suppress your thyroid. This means keeping your TSH below the normal range.
Q: How is TSH suppressed?
A (Jennifer Beaurone): You can do this by taking thyroid medications such as Armour Thyroid, Cytomel, Synthroid, etc. It will be up to you and your doctor to find what works best for you.
Q: How do I know if my TSH should be suppressed?
A (Jennifer Beaurone): This will depend on the type of cancer and your risk. Check with your doctor. The higher the risk, the greater the need to suppress your TSH. If you are not high risk, your doctor may keep your TSH within the normal range.
Q: If I am high risk, what is the ideal TSH range?
A (Jennifer Beaurone): If you are at risk, your doctor may want to keep your TSH at <.1.
Q: What types of thyroid cancer are there?
A (Jennifer Beaurone):
All have 4 stages and how advanced your thyroid cancer is will determine your doctor’s decision on whether to subsequently suppress your TSH.
Jill began by reaching out to Keegan Berber, a 16-year-old thyroid cancer patient and spokeswoman for the BITE Me Cancer nonprofit foundation … My name is Keegan Berber and I was diagnosed with papillary thyroid cancer when I was 13. I had a total thyroidectomy and 14 lymph nodes removed, all of which were positive for cancer. I also have the BRAF gene. I had a dose of RAI and still wasn't feeling any better. After eight months, they decided to biopsy some more lymph nodes and they all came back positive, so I had a central and lateral neck dissection a month before my 15th birthday. They removed 72 more lymph nodes and 38 were positive. They gave me another dose of RAI, and we have since moved to another state, so I’m seeing all new doctors. I’m now 16 and I still do not feel close to a “new normal”. I'm on 225 mcg Synthroid and I am still tired and still am losing a lot of my hair. I’m hoping that will change soon and that more research can be done on how the BRAF gene affects treatment. For more about BITE ME Cancer Foundation, check out their website or visit their Facebook page.
Q: So what is the BRAF gene and its relevance to thyroid cancer’s RAI resistance?
A (Jill Landover): BRAF mutation is the most common genetic alteration in patients with thyroid cancer, particularly those with papillary thyroid cancer. Excessive activation of BRAF/MAPK signaling due to the BRAF mutation plays a central role in tumor development in papillary thyroid cancer. BRAF mutation can result in reduced sensitivity of thyroid cancer to radioactive iodine treatment, an increase in tumor size, extrathyroidal invasion (where the cancer spreads to outside of the thyroid) and metastasis to local lymph nodes, as well as distant metastasis and progression to advanced stages of the disease. Before thyroid surgery, fine-needle aspiration can be used to detect BRAF mutation, which acts as a useful diagnostic marker and prognostic indicator for papillary thyroid cancer, thus influencing the surgeon’s decision on how to manage the patient’s papillary thyroid cancer.
Q: Does thyroid cancer just affect old people then? What are the statistics and who is at risk?
A (Jill Landover): Keegan Berber’s narration of her experiences clearly shows that thyroid cancer is not just a problem that is affecting “old people”. In fact, it is on the rise … thyroid cancer diagnosis has increased in recent years and it is the most rapidly increasing cancer in the US. This is mostly due to the increased prevalence of thyroid ultrasounds, which are capable of detecting small thyroid nodules, which might not have been found in the past. The American Cancer Society’s estimates for thyroid cancer in the United States for 2014 are:
- About 62,980 new cases of thyroid cancer (47,790 in women, and 15,190 in men).
- Thyroid cancer is commonly diagnosed at a younger age than most other adult cancers. Nearly 2 out of 3 cases are found in people younger than 55 years of age. About 2% of thyroid cancers occur in children and teens.
- About 1,890 deaths from thyroid cancer (1,060 women and 830 men)
Q: Which thyroid cancer support groups and forums would you personally recommend for guidance and support?
A (Jill Landover): As an avid Facebooker, I have found many Facebook sites for thyroid cancer. I have listed them with a hyperlink to the Facebook site and included their website link in brackets for those who have a separate website. Some of my favorites include THYCA (thyca.org) Thycans.com – Connecting Thyroid Cancer Patients (http://thycans.com/), I Support The Fight Against Thyroid Cancer, RAI Resistant Thyroid Cancer, Thyroid Cancer Awareness.
Tune in next time to read a blog by another ThyroidChange volunteer, Stacy Millman, featuring her personal tips and experiences that have helped her through her diagnosis of thyroid cancer …