LUCKY

Meet 16 year, long term thriver, Li-lien Yang

Li-lien Yang, despite having leiomyosarcoma, feels very lucky.

In 2008, when Li-lien was 48 years old, she sought help for her painful fibroids. The doctor dismissed her pain, so she went to a gynecologist. Luckily, the doctor was cautious and preformed an open hysterectomy. Li-lien was lucky that it was an open surgery, because she had uterine leiomyosarcoma.

The second lucky thing, was that her husband found the LMS support group. Li-lien followed the advice to get a sarcoma consult with Dr. Gina D’Amato, who was working at Emory in Atlanta at the time. Dr. D’Amato recommended adjuvant Gem/Tax. Li-lien asked Dr. D’Amato, “does it work?” Dr. D’Amato replied, she didn’t know. 

Li-lien decided not to get the chemo, because she was the only breadwinner at home.  She was supporting her 6th,  8th and 10th graders, husband and her parents who were in their 80’s. Li-lien didn’t want to get too sick with side effects, which would prevent her from working.

Li-lien changed her mind when support group member, Dr. Dee read the path report and told her that she had a very aggressive disease. Dr. Dee, an leiomyosarcoma patient herself, gave Li-lien “tough love.” Dr. D’Amato told her, “don’t fear chemo. Just help the chemo do its work.”

By the time Li-lien started the gem/tax chemo, she had a few lung metastases (mets for short). The chemo got rid of a few mets, and got the others under control. After chemo, she had a wedge resection to remove the remaining lung mets.

But a few more lung mets appeared. She did two rounds of gem/tax again, and then a second wedge resection. This was followed by yet more lung mets. She had her upper lobe removed surgically. The surgeon told her she could not have any more lung surgery.

In 2016, Li-lien had a tumor on her back surgically removed. Two lung mets followed. This time she had targeted radiation, stereotactic body radiation (SBRT).

She has been NED (no evidence of disease) since. It’s been 8 years!

Li-lien worked at her job as an educator at the Center for Disease Control (CDC), straight through all her treatments. She didn’t think about coping… she just stayed strong and kept working because she had to.

Today, Li-lien’s children are 28, 30 and 32 years old. Her youngest is a medical student who shadowed, Dr. D’Amato at the sarcoma clinic. 

Li-lien has some words of wisdom:

1.       Be open minded about treatments, especially chemo.

2.       Learn about the disease.

3.       Don’t think too far ahead.

4.       Don’t despair – the medical field keeps improving.

You can find Li-lien gardening, when she is not working.  She welcomes patients to contact her at lay1@cdc.gov

If you are a long term survivor (7 years or more) and would like to share your story, please email us at info@LMSDR.org