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Forming a support network for people with papillary thyroid cancer lung metastases

Sarah100's picture
Sarah100
Posts: 3
Joined: Jan 2014
 

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I'm a 12+ year survivor (since 2001) of stage IV papillary thyroid cancer with lung metastases, first seen in 2005; and want to be in touch with other thyroid cancer patients with lung metastasis. I feel an uncomfortable level of tightness in my chest with some shoulder and arm pain. My wonderful doctor thinks part of the pain is tension. This is a slow growing cancer, etc. etc. so my life is not at risk. But I would very much like to be in contact with others who have similar circumstances, since this is not a common part of thyroid cancer. I can be reached at oursacreduniverse at gmail dot com. Thank you!

mb4932
Posts: 1
Joined: Feb 2014

My then 20 year old daughter had her thyroid removed April 2013, came back cancer, so her lymphnodes were biopsied for spreading in May. Local hospital said came back benign but I wanted a second opinion, so took her to a larger hospital. Test were performed in June right side of neck came back malignant, she went back a week or so later to do the other side and it was malignant too. Finally Sept 2013 lyphnodes in her neck were removed but they left a small area of the cancer at her esophagus due to high risk of a trach for the rest of her life. They then treated her with radiation iodine pill in October. She is suppose to go back April 2014 for another treatment, but now she is experiencing shoulder pain that is painful and keeping her awake at night. My fear as her mother is "has it metastisized somewhere else?" Now to figure out our next step. What to do?

 

alapah's picture
alapah
Posts: 259
Joined: Oct 2009

Every case is different but I wanted to share with you my experience and make a suggestion to your daughter after reading your post. In my case the papillary thyroid cancer tumor had adhered to my trachea and was not encapsulated which meant that there was likely to be residual tissue which might not be taken care of by radioactive iodine alone.

I realize the esophagus and trachea are two different kinds of tissue so my experience is not really parallel. However, in my case I had six second opinions from radiation oncologists to determine if it was truly best for me to be treated not only with I131 but also conventional radiation. They all agreed in my case that this was the best route. I ended up working with a radiation oncologist at Mayo who specializes in head and neck and had over the course of his career treated a few patients in situations similar to mine.

I just had a CT of the neck and chest and the neck is still clear. I do, however, have agressive mets to the lungs which have not responded to chemo treatments.

It's very unusual for thyroid cancer patients to undergo external beam radiation and your daughter may not need it at all. The main point I am trying to make is that complex cases of thyroid cancer are not very common, so I would highly recommend that your daughter seek out an endocrinologist and radiation oncologist who are very very familiar with thyroid cancer. It can make a world of difference. If she can, seeking second opinions from specialists could at least be very helpful.  

The shoulder pain may or may not be mets. Has she had a recent CT and or ultrasound? That may be one place to start. Sometimes PET scans are ordered. If she has another dose of I131 coming up it may be able to show a lymph node or tissue with thyroid cancer. Then again, it may be unrelated. Thyroid cancer in lymph nodes can sometimes be treated by alcohol ablation (done at a few places in the US) or surgery. 

 

Best to you and your daughter

eileen

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