Thyroid cancer diagnosis with a BRAF description

Posted by rockon79 @rockon79, 2 days ago

I had a thyroidectomy because of papillary cancer. In its description of the removed thyroid the pathology report noted a group of nodules as "BRAF unequivocal" I checked the meaning (checked a lot of those words) and have somewhat of an understanding but not really sure of what actually is happening (I do know I am glad its not a BRAF V600E). My endocrinologist ordered an RAI treatment without speaking at all to me about my actual diagnosis, and at that early point of having thyroid cancer, I was too much in a fog to ask. I have also reached out to my oncologist and they just gave me a future appointment. SO, at this point I still do not have a professional explanation of exactly what my cancer is. I would like to hear from others that have A BRAF in their diagnosis, what it meant and how it effected their recovery. I realize that any info I get might not be medically approved but, I am sure it would help me understand my situation better.

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

I got my Papillary cancer diagnosis on an ap. Very confusing and scary.
Web MD is your friend. Also this forum was very helpful.
I was lucky my margins were clear. Had a scare on a scan 8 months later but turned out to be just a shadow,

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@rockon79
I looked up an AI summary response to your question. Here is what came back:

“ A diagnosis of thyroid cancer, particularly when associated with a BRAF mutation, involves several important aspects. Here’s an overview of thyroid cancer, the significance of BRAF mutations, and their implications for diagnosis and treatment:
1. Thyroid Cancer Overview
Types: The most common types of thyroid cancer include papillary thyroid carcinoma (PTC), follicular thyroid carcinoma, medullary thyroid carcinoma, and anaplastic thyroid carcinoma. Papillary thyroid carcinoma is the most prevalent and often has a good prognosis.
Symptoms: Symptoms may include a noticeable lump in the neck, changes in voice, difficulty swallowing, and neck pain. However, many cases are asymptomatic and discovered incidentally.
2. BRAF Mutation
What is BRAF?: BRAF is a gene that encodes a protein involved in sending signals inside cells, which helps regulate cell growth. Mutations in the BRAF gene can lead to uncontrolled cell growth and are associated with various cancers, including thyroid cancer.
Common Mutation: The most common BRAF mutation in thyroid cancer is BRAF V600E. This mutation is particularly associated with papillary thyroid carcinoma and can indicate a more aggressive form of the disease.
3. Implications of BRAF Mutation in Thyroid Cancer
Prognosis: The presence of a BRAF mutation, especially V600E, is often associated with a higher risk of aggressive disease, including increased likelihood of metastasis and recurrence.
Diagnosis: Testing for BRAF mutations is typically performed on tissue samples obtained from a biopsy or surgical resection. This molecular testing can help in confirming the diagnosis and assessing the aggressiveness of the cancer.
Treatment Considerations:
Surgical Intervention: The primary treatment for thyroid cancer is usually surgical removal of the thyroid gland (thyroidectomy) and possibly surrounding lymph nodes.
Targeted Therapy: In cases where the cancer is aggressive or recurrent, targeted therapies that inhibit BRAF may be considered. Drugs like vemurafenib and dabrafenib are examples of BRAF inhibitors used in other cancers and are being studied in thyroid cancer.
Radioactive Iodine Therapy: This may be used post-surgery, especially if there is a risk of residual disease.
4. Follow-Up and Monitoring
After treatment, regular follow-up is essential to monitor for recurrence. This may include physical exams, blood tests for thyroid hormone levels, and imaging studies.
Conclusion
A diagnosis of thyroid cancer with a BRAF mutation, particularly BRAF V600E, indicates a need for careful management due to the potential for more aggressive disease. It is important to work closely with an endocrinologist and oncologist to develop a comprehensive treatment plan tailored to the specific characteristics of the cancer. Regular monitoring and follow-up care are crucial for managing the disease effectively.”

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@rockon79
Here is another AI response (see below in quotation marks). It does seem you may have a need for radiation therapy to ensure there is no remaining cancerous thyroid tissue. My sister needed it after her thyroidectomy at the age of 27. I had a thyroid lobectomy and the nodule was 2.5 cm but luckily not cancerous but they did find a micro cancer that did not require radiation or further treatment. I have my left lobe monitored due to a macro calcification and there is new thyroid tissue regrowth where my right lobe used to be. Thyroid tissue can regrow after your thyroidectomy so you will definitely want to have them monitor with regular ultrasound/MRI.

“ I understand that receiving a diagnosis of thyroid cancer and navigating the details can be overwhelming, especially when it comes to specific findings like "BRAF unequivocal." Here’s a breakdown of what this might mean for you and how it relates to your treatment and recovery:
Understanding "BRAF Unequivocal"
BRAF Status: The term "BRAF unequivocal" in your pathology report suggests that there is a clear indication of BRAF involvement in your thyroid cancer. This typically means that the cancer cells have a BRAF mutation, which can influence the behavior of the cancer.
Implications of BRAF Mutations:
Aggressiveness: BRAF mutations, particularly in papillary thyroid carcinoma, can be associated with a more aggressive form of the disease. This may lead to a higher risk of recurrence or metastasis.
Treatment Decisions: The presence of a BRAF mutation can sometimes influence treatment decisions, including the use of radioactive iodine (RAI) therapy, which is often used after thyroidectomy to eliminate any remaining cancer cells.
Radioactive Iodine (RAI) Treatment
Purpose of RAI: RAI treatment is commonly used after thyroidectomy in cases of differentiated thyroid cancer (like papillary thyroid carcinoma) to target any residual thyroid tissue or cancer cells. It is particularly considered when there are certain risk factors, such as the presence of BRAF mutations.
Timing and Dosage: The decision to proceed with RAI is based on various factors, including the size of the tumor, lymph node involvement, and the presence of mutations. Your endocrinologist likely recommended RAI to minimize the risk of recurrence.
Recovery and Follow-Up
Monitoring: After RAI treatment, you will typically have follow-up appointments to monitor your thyroid hormone levels and check for any signs of recurrence. This may include blood tests for thyroglobulin (a marker for thyroid cancer) and imaging studies.
Long-Term Outlook: Many patients with papillary thyroid carcinoma, even with BRAF mutations, have a good prognosis, especially with appropriate treatment and follow-up care. The key is to stay vigilant with monitoring and follow your healthcare team’s recommendations.
Connecting with Others
Support Groups: Connecting with others who have experienced similar diagnoses can be incredibly helpful. Online forums, local support groups, or organizations focused on thyroid cancer can provide a platform for sharing experiences and advice.
Patient Advocacy Organizations: Organizations like the American Thyroid Association or Thyroid Cancer Survivors' Association can offer resources, information, and community support.
Conclusion
It’s understandable to feel uncertain and seek clarity about your diagnosis and treatment. While it’s important to wait for your oncologist to provide a detailed explanation, reaching out to support groups and gathering information can help you feel more empowered. Don’t hesitate to ask your healthcare providers specific questions about your diagnosis, treatment plan, and what to expect moving forward. Your health and understanding of your situation are paramount, and advocating for clear communication is essential.”

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@dlydailyhope

@rockon79
Here is another AI response (see below in quotation marks). It does seem you may have a need for radiation therapy to ensure there is no remaining cancerous thyroid tissue. My sister needed it after her thyroidectomy at the age of 27. I had a thyroid lobectomy and the nodule was 2.5 cm but luckily not cancerous but they did find a micro cancer that did not require radiation or further treatment. I have my left lobe monitored due to a macro calcification and there is new thyroid tissue regrowth where my right lobe used to be. Thyroid tissue can regrow after your thyroidectomy so you will definitely want to have them monitor with regular ultrasound/MRI.

“ I understand that receiving a diagnosis of thyroid cancer and navigating the details can be overwhelming, especially when it comes to specific findings like "BRAF unequivocal." Here’s a breakdown of what this might mean for you and how it relates to your treatment and recovery:
Understanding "BRAF Unequivocal"
BRAF Status: The term "BRAF unequivocal" in your pathology report suggests that there is a clear indication of BRAF involvement in your thyroid cancer. This typically means that the cancer cells have a BRAF mutation, which can influence the behavior of the cancer.
Implications of BRAF Mutations:
Aggressiveness: BRAF mutations, particularly in papillary thyroid carcinoma, can be associated with a more aggressive form of the disease. This may lead to a higher risk of recurrence or metastasis.
Treatment Decisions: The presence of a BRAF mutation can sometimes influence treatment decisions, including the use of radioactive iodine (RAI) therapy, which is often used after thyroidectomy to eliminate any remaining cancer cells.
Radioactive Iodine (RAI) Treatment
Purpose of RAI: RAI treatment is commonly used after thyroidectomy in cases of differentiated thyroid cancer (like papillary thyroid carcinoma) to target any residual thyroid tissue or cancer cells. It is particularly considered when there are certain risk factors, such as the presence of BRAF mutations.
Timing and Dosage: The decision to proceed with RAI is based on various factors, including the size of the tumor, lymph node involvement, and the presence of mutations. Your endocrinologist likely recommended RAI to minimize the risk of recurrence.
Recovery and Follow-Up
Monitoring: After RAI treatment, you will typically have follow-up appointments to monitor your thyroid hormone levels and check for any signs of recurrence. This may include blood tests for thyroglobulin (a marker for thyroid cancer) and imaging studies.
Long-Term Outlook: Many patients with papillary thyroid carcinoma, even with BRAF mutations, have a good prognosis, especially with appropriate treatment and follow-up care. The key is to stay vigilant with monitoring and follow your healthcare team’s recommendations.
Connecting with Others
Support Groups: Connecting with others who have experienced similar diagnoses can be incredibly helpful. Online forums, local support groups, or organizations focused on thyroid cancer can provide a platform for sharing experiences and advice.
Patient Advocacy Organizations: Organizations like the American Thyroid Association or Thyroid Cancer Survivors' Association can offer resources, information, and community support.
Conclusion
It’s understandable to feel uncertain and seek clarity about your diagnosis and treatment. While it’s important to wait for your oncologist to provide a detailed explanation, reaching out to support groups and gathering information can help you feel more empowered. Don’t hesitate to ask your healthcare providers specific questions about your diagnosis, treatment plan, and what to expect moving forward. Your health and understanding of your situation are paramount, and advocating for clear communication is essential.”

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Thank you dailyhope for taking the time to reply as you did. I have read similar information and I learn something new from each. Having said that, many articles about BRAF describe its complications yet down play its potentially very serious down side as far as treatment efficacy and out come. Others are more forthcoming and what they report can change one's entire out look. I am trying to avoid that negative and stay positive.

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I met with my surgeon today for the first post op checkup. He told me that during the procedure he found no indication of metastasis, nothing suspicious looking in the lymph glands, ( none were removed) etc. He also said the parathyroid and larynx were as undisturbed as possible. Because of the large size (4.1 cm) of the tumor and the BRAF E600V, he sent the entire gross description of the thyroid, the initial diagnosis and numerous pictures to "outside expert consultation for sub classification" . I asked him what his opinion might be now and he said he needed the expert consultation before he would say ANYTHING for sure and recommend any sort of treatment. I told him the local endocrinologist already set me up for RAI and he said to wait and he would call him. So, apparently the surgeon has chosen to oversee my care at this point anyway. He said he would advise me when he has that final report of exactly what my diagnosis and treatment will be. I'm getting anxious waiting!

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