A Mother’s Advice

By Tea Marrocco

I came to know about leiomyosarcoma when my daughter was diagnosed at the tail-end of 2020. We’d been through two cancers in her childhood (bilateral retinoblastoma and a later lymphoma) so we had a little experience under our belt, but this time she was an adult (34) and the cancer, can I just say it, was a real doozie. I don’t like to say she’s no longer a survivor because Tiff, and you too, are a survivor each day you move through life. The LMSDR foundation was key to her education and support, and I wanted to make sure I came to you all with a very short, very distilled, list of impressions I feel are of use for anyone diagnosed with leiomyosarcoma. 

Here are some things she and I learned along the way as pertains to this disease and its care, particularly when it is not responding to treatment. I'll keep it short and to the essential:

1. Even the best sarcoma specialists are fallible--they are skilled but this is a tricky cancer. If you have a gut feeling about something, a nodule or a small tumor they are not focused on, be vocal about it. Request earlier scans, and if you don't get cooperation, push. You want results, not apologies later.

2. Sometimes docs will talk about trials but not follow through--sometimes they are floating possibilities. If you want to be part of a trial, push. Make sure they know and squeak, little wheel, squeak.

3. Be happy for the thrivers even if you are not one. Be gentle and kind with those the disease ravages quickly--those who are not thriving--even if you are a thriver.

4. If, despite your efforts and your feisty fight, you find yourself at the end of life., please listen to the doctors when/if they recommend hospice. Getting in front of the pain is so important because given adequate time those experts can offer much in the way of comfort. Without enough time, they will have difficulty tamping it down--trust their expertise.

Love to all.

Tea