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

Posted by swenson @swenson, Aug 12, 2022

She now has a tracheostomy and feeding tube. FT is finally going ok. But the trach causes Phlem that she has to constantly clear and spit out. It is the bane of her existance. Any one else dealt with this same thing?

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

@jeanne4igfh

Hi Colleen. Thank you for the reply. She doesn’t have a symptom nurse. I didn’t know about that. The doctor didn’t tell us yet what type of chemo and radiation she’ll be getting. They’re waiting for us to make the decision. They suggested not to wait too long. They told us radiation is 5 days a week, 30 minutes each day for 7 weeks. Chemo is once a week for 7 weeks also.

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Hi Jeanne, different hospitals will have different names, but often in cancer centers there is a nurse who oversees the management of treatment side effects. You might also consider asking for a consult with palliative care. They specialize in symptom management.

I think it would be helpful to know what type of chemo she would be getting to help make your decision.

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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.

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@av8r525

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.

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@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/

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@colleenyoung

@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/

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

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@av8r525

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.

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hi av8r525, i do hope all is well with your son. this is what i have. it is scary for me as i am up in age, however, the dr. said they do not look at age. i would love to hear how he is doing.

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@av8r525

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

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hi av8r525, so sorry to hear that. i guess that is why they want to do this neck and soft tissue ultrasound so they can see how the lymph glands look.

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@av8r525

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

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hi av8r525, so sorry to hear that. i guess that is why they want to do this neck and soft tissue ultrasound so they can see how the lymph glands look.

are they going to give him the radioactive iodine? that is what they scheduled for me.

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@jpuntasecca

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.

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How are you doing now?

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