Daughter, 45 anaplastic thyroid cancer. Had surgery, chemo, radiation.

Has anyone here had Anaplastic thyroid cancer? I had my thyroid removed, 44 radiation treatments, five chemo, and am now starting immunotherapy for two years! I am with MD Anderson for treatments. They have had a lot of success with this rare, once fatal cancer.

Good afternoon Swenson,

I was recently in a very similar situation you are in now.
My father was diagnosed with Anaplastic thyroid on June 26th 2002 and died on August 16th 2022, 58 after initial diagnosis.

After a STAT MRI scan was done it showed the cancer had metastasized (spread)
to the bones in his spine,
2 specs his liver,
a spec on his hip,
3 spec on his lungs
and the point of origin his Thyroid

My father went into emergency surgery at UCLA on July 7th to perform a thyroidectomy to remove the huge lump that was forming on the right side of his neck starting to obstruct his airway.

After his surgery he started to have a lot of phlem and loss of appetite. 6 different medications were given to him in order to counter problems and side effects of the cancer and medications. The doctors and Oncologist at UCLA and MD Anderson consulted and formed a team who concluded my dad should start several treatments.

On July 22nd at UCLA he begin oral chemo pill Lenvima, radiation, immunotherapy and ( hydration through IV 2x a week). This had little to no effect on slowing down the ATC.

On Friday August 12th I took my father to the ER at UCLA, he was extremely weak and dehydrated. They rushed him into the ICU. His health was rapidly deteriorating. After he was stabilized they gave him a feeding tube since all the food and water was aspirating into his lungs and he could no longer eat or drink without a feeding tube.
He died 4 days later on Tuesday the 16th.

How long has it been since your daughter was diagnosed?

Also do you know the Stage her ATC is at

Stage 4
IVA-Moderately advanced disease; tumor of any size with gross extrathyroidal extension into the nearby tissues of the neck, including subcutaneous soft tissue, larynx, trachea, esophagus, or recurrent laryngeal nerve.

IVB- Very advanced disease; tumor of any size with extension toward the spine or into nearby large blood vessels, gross extrathyroidal extension invading the prevertebral fascia, or encasing the carotid artery or mediastinal vessels.

IVC- Distant metastasis. Very advanced disease; tumor of any size with extension toward the spine or into nearby large blood vessels, gross extrathyroidal extension invading the prevertebral fascia, or encasing the carotid artery or mediastinal vessels.

I hope your son’s treatment is successful. I was diagnosed with ATC in February 2022. I had a complete Thyroidectomy and neck dissection at that time and a tracheostomy was done because the tumor was wrapped around the trachea. Unfortunately there was still cancer left after surgery because my surgeon stopped short of doing a laryngectomy. I am extremely grateful for that because i can speak with the use of a passy muir valve. After recovering i underwent radiation and chemo (doxorubicin). The radiation was extremely grueling. The treatment was very successful however. All that was left of the cancer was one lymph node in my neck! I just started taking Dabrafenib and Trametinib as my cancer has the BRAF mutation. I am hopeful those drugs will be successful in treating the small amount of disease that was left after the chemo radiation. I am also hopeful that I’ll be able to have the trach removed as the swelling from the radiation subsides. This whole process has been a rollercoaster of emotions. Unfortunately there isn’t a lot of positive info out there. I just want to offer others in the same situation a ray of hope. Luckily there are treatment options now for this ruthless disease.

Thank you, will follow both. He was found to have metastatic carcinoma upon removal of his thyroid.

Thank you, will follow both. He was found to have metastatic carcinoma upon removal of his thyroid.

My 38 year old Son is having surgery the Friday 11/11 for papillary carcinoma of the thyroid, would be curious to hear others experience with same.

@av8r525, I hope your son's surgery went well last week. Here are a couple of discussions where you can connect with others who have papillary carcinoma of the thyroid:

- Life after total thyroidectomy after papillary cancer https://connect.mayoclinic.org/discussion/papillary-thyroid-cancer/
- I have Papillary thyroid cancer that has spread: Is there help? https://connect.mayoclinic.org/discussion/life-after-total-thyroidectomy-after-papillary-cancer/

My 38 year old Son is having surgery the Friday 11/11 for papillary carcinoma of the thyroid, would be curious to hear others experience with same.