Here is a checklist of critical decisions and actions that are typically encountered in the progression of ATC.
Reminder: Appropriate medical care by specialists with expertise in treating ATC is critical! You may have very limited time to start treatment.
- Initial diagnosis.
- Second opinion from source experienced in diagnosing/treating ATC.
NOTE: A confirming second opinion may arrive after treatment is started.
- Assemble medical team experienced in treating ATC.
The key person is the oncologist (cancer specialist) who will help guide you to the right experts for ATC treatment. Do not hesitate to ask the oncologist how many ATC patients he or she has treated or whom he or she recommends you see.
- Determine the Course of Treatment based upon the patient’s needs.
Factors include: age, general health, speed of tumor growth, occurrence of cancer at other sites, patient personality, and patient choice of options. This is the time for a serious discussion about the patient’s wishes. What does the patient want? Discuss each treatment’s pros and cons. Treatment options to consider:
- Clinical Trials (Research Studies)
- Start the course of treatment as soon as possible.
- Ensure that all legal documents are in place.
If these documents are not already in place, now is the time to do so, no matter how hard the discussions will be. Ensure that the following documents are signed and copies provided to appropriate medical, legal, and family members. Consult your personal legal counsel for guidance.
- Medical Surrogate
- Power of Attorney
- Medical Advance Directives / Living Will. Note: Some versions are more detailed than others, identifying, for instance, decisions about nutrition, hydration, antibiotics, pain medication, and so on. A more detailed version is helpful to family members responsible for the patient’s care.<
- Will and trusts for disposition of assets.
- Optional: A joint bank account so that a caregiver can pay the patient’s monthly household expenses.
- Residence. Determine where the patient will live during treatment. Each patient’s needs are different. Some patients remain at home. Others will require housing near a specialized cancer treatment center. Some patients are admitted to a skilled-nursing facility. Make the right choice for the patient, family, and caregivers.
- Assemble the care team. No one person can provide all the necessary emotional and physical support. A team is needed. Consider including family members, friends, community, health care manager, nursing aides, housekeepers, and so on.
- When appropriate, contact a Hospice. This is different for each patient. Hospice offers a variety of support services and becomes a member of the Care Team.
“I have been reading the recent postings today and you have been given good information for your mother. You or your Mom's doctor need to act quickly on this….I am sure [that doctors experienced in treating ATC] would consult with your mother’s physician. Don't waste any time. Contact any of us for information and we will do all we can to help.”
“I just got back from the thyroid survivors conference in Chicago (2004). One of the major thought leaders in thyroid cancer said to treat ATC like one would treat a heart attack...immediately. I was having EBR (external beam radiation) therapy a week after my surgery along with chemo. Unfortunately, you don't have the luxury of waiting to make your decisions. I would recommend having one of your mom's physicians contact one of the physicians…who have treated ATC tomorrow and get her on a treatment protocol the next day. This may sound ridiculous to you but it isn't, and I think I will be backed up by everyone on this list. Make a decision based on the recommendation of a physician who has treated ATC, not anyone else! And do it quickly!”Treatment Options
Note: ATC is highly individualistic in both progression and appropriate treatment. Different doctors will have different opinions on what is appropriate. Also, some patients will have different criteria for what kind of treatment is "acceptable" in light of the benefits in terms of increased longevity and possible cure and the costs in terms of discomfort and the impact of treatment on their quality of life.Tracheostomy
Usually, an ATC tumor grows to the point that it physically compresses the trachea, or airway, causing the patient difficulty in breathing. Often, but not always, one of the first actions is to perform a tracheostomy.
In this surgery, a cut is made in the neck below the compression and a plastic pipe ("trach tube") is inserted. The patient then breathes through this tube. The patient can usually talk by placing his or her finger over the air hole (or tracheostomy) to force the breath through the vocal cords.
Sometimes the vocal cords are affected by the tumor via nerve compression, so this may impair clear speech.
The tracheostomy tube needs to be removed and cleaned several times a day to avoid blockage and infection.
There are many different sizes and styles of trach tubes. Several re-fits may be needed as the tumor grows and shrinks during treatment. Trachs are done by endocrine surgeons, ENT surgeons, or general surgeons experienced in these procedures. These surgeons are the experts in insertion and fitting of the tracheostomy tube for optimal comfort.Surgery
There is conflicting information on the effectiveness of surgery. In the DeCrevoisier, et. al. study, 12 patients had partial tumor removal or no surgery, and all died by 48 months. Twelve other patients had the tumor completely removed, and at the end of the study, 8 patients were alive, 7 of whom were in complete remission from 12 to 78 months after treatment.
This suggests that if there are no metastases, and it is surgically possible to remove the complete tumor, surgery should be considered.
On the other hand, a Mayo Clinic study "Anaplastic Thyroid Carcinoma: A 50-year experience at a single institution" by McIver, et. al. in Surgery, Volume 130, Number 6, concluded
"Although operation was associated with a longer life expectancy than palliation alone (3.5 months rather than 3 weeks), part of this apparent benefit may reflect selection bias, since patients selected for operation are likely to have less extensive disease. The difference in survival between patients who underwent extensive operation and those who underwent biopsy alone followed by XRT [radiation] was small and did not reach statistical significance."
However, this study goes back 50 years. Many of the patients did not receive current treatment.
As of 4/5/2005, the National Cancer Institute recommends:
"Surgery: Tracheostomy is frequently necessary. If the disease is confined to the local area, which is rare, total thyroidectomy is warranted to reduce symptoms caused by the tumor mass."Chemotherapy
Chemotherapy (treating cancer with drugs) is usually given for ATC treatment. While ATC cells are resistant to most types of chemotherapy, it is believed that the chemotherapy makes the radiation treatment more effective. As of mid-2005, common ATC chemotherapy drugs include cisplatin, doxorubicin (also known as Adriamycin), paclitaxil (also known as Taxol), and carboplatin. Others are available in clinical trials, such as combretastatin A-4, erlotinib (also known as Tarceva), manumycin, sorafenib (BAY 43-9006), and AG-013736. Thalidomide may slow the growth of ATC tumors.
As of 4/5/2005, the National Cancer Institute recommends:
"Anaplastic thyroid cancer is not responsive to I131 therapy; treatment with individual anticancer drugs has been reported to produce partial remissions in some patients. Approximately 30% of patients achieve a partial remission with doxorubicin. The combination of doxorubicin plus cisplatin appears to be more effective than doxorubicin alone and has been reported to produce more complete responses."Radiotherapy
Radiotherapy is radiation directed at the ATC tumor cells to reduce the size of the tumor or destroy it. Sometimes this is done after surgery to "clean up" any residual tumor. Sometimes this is done before surgery in an attempt to make an otherwise inoperable tumor smaller so it may then be removed.
Radiotherapy is typically delivered daily five days per week over a period of 4 to 6 weeks.
As of 4/5/2005, the National Cancer Institute recommends:
"External-beam radiation therapy may be used in patients who are not surgical candidates or whose tumor cannot be surgically excised."
Click here for more information on External Beam Radiation therapy.National Cancer Institute latest thoughts as of 4/5/2005:
"The combination of chemotherapy plus irradiation in patients following complete resection may provide prolonged survival, but has not been compared to any one modality alone. Clinical trials evaluating new treatment approaches for this disease should also be considered. Information about ongoing clinical trials is available from the NCI Web site."Clinical Trials
For general information about clinical trials, go to the ThyCa clinical trials web page.
If the conventional treatments for ATC are not successful, a patient might consider participating in a clinical trial.
A clinical trial is a research study where physicians try treatment that has theoretical promise, but has not been proven to work. During clinical trials physicians systematically collect data to find out whether the unproven treatment works.
Making the decision about participation is not easy. On the one hand, it offers hope of increased longevity or a cure.
Clinical trials also result in knowledge that might help others. If the treatment works, even partially, that information can be used to design better treatments for future patients. If the treatment does not work or has too many side effects, then physicians know to abandon that treatment for future patients.
On the other hand, clinical trials often involve drug side effects, and usually entail travel and expense. These can diminish a person’s remaining quality of life. This is a very personal decision best reached by careful consideration and discussion with your doctors, family, and friends.
Because of the rarity of ATC, most clinical trials are conducted through the National Cancer Institute, which is part of the National Institutes of Health or NIH, and conducted through the NCI’s nationwide network of Cancer Centers.
The best way to find out about clinical trials of experimental treatments is to go the National Cancer Institute Clinical Trials web page. (http://www.cancer.gov/search/clinical_trials/). Select Thyroid Cancer for the cancer type; select Anaplastic Thyroid Cancer for the subtype; and then click Search.
Another source of clinical trials for ATC is the NCI Cancer Centers home page(http://www.cancer.gov/clinicaltrials/finding/NCI-cancer-centers). It gives background information and links to the NCI Cancer Centers.
Most of the trials are Phase II, which means (according to the NCI's definition):
"A study to test whether a new treatment has an anticancer effect (for example, whether it shrinks a tumor or improves blood test results) and whether it works against a certain type of cancer."
A Phase III trial is defined as
"A study to compare the results of people taking a new treatment with the results of people taking the standard treatment (for example, which group has better survival rates or fewer side effects). In most cases, studies move into phase III only after a treatment seems to work in phases I and II. Phase III trials may include hundreds of people."ATC Clinical Trial Experiences
Clinical trials usually involve travel to one or more research centers funded for the trial. The cost of the trial itself is usually free, but associated physician care fees and medical tests are not usually covered. Travel and local accommodations are usually paid for by the patient. However, there are often special residences that are supported by charitable contributions with only a nominal fee from the patient. Hotels near the medical center may have special patient/caregiver rates.
Enhanced survival in locoregionally confined anaplastic thyroid carcinoma: a single-institution experience using aggressive multimodal therapy. Foote RL, Molina JR, Kasperbauer JL, Lloyd RV, McIver B, Morris JC, Grant CS, Thompson GB, Richards ML, Hay ID, Smallridge RC, Bible KC. Thyroid. 2011 Jan;21(1):25-30. Epub 2010 Dec 16.
- Complete Journal Article
- News Article: Hopeful Results from Recent Study of Treatment of Anaplastic Thyroid Cancer
- Phase Ib Clinical Trial Recruiting Patients with Anaplastic Thyroid Cancer
Last updated: February 27, 2012