Wise Advise for the Newly Diagnosed
In 1992, Marge Rudloff was diagnosed with uterine LMS after a hysterectomy. Despite pelvic radiation, it recurred on her bladder within a few years. Since her bladder surgery, she has not had another tumor. It’s been 22 years since she first heard the word, leiomyosarcoma.
There was no internet and online resources when Marge was diagnosed in 1992. All she had was a one page print out about LMS. In 1998, six years later, she found (on her work computer) the ACOR online discussion group and “talked” with other survivors. In 2003, she actually met them in person at the first LMS Hugfest gathering in Lancaster, Pennsylvania.
While Marge has not had a recurrence of LMS in the past 17 years, she has suffered from the long terms side effects of her treatments. Radiation damaged a large section of her bowel which had to be removed, resulting in on-going diarrhea. Surgery had its side effects too. After her bladder was removed, she suffered from kidney infections which developed into chronic kidney disease. That led to a nephrectomy (kidney removed) eight years later.
After 22 years, Marge continues to get annual CT scans of the chest, pelvic and abdomen.
Marge thinks about LMS often, but doesn't worry about it. If something different or unusual happens in her body, LMS is her first thought. Marge states, “I feel good but I don’t have my head in the sand. I volunteer for a Cancer Hotline so I try to keep up with things somewhat.”
An unexpected good side effect has been the enhancement of love and respect she has received. She was surprised at how many people cared and wanted to help.
Marge shared, “I’m still always amazed at how far my husband will go to care for me, encourage me, and just be there for me. We will be married 50 years in February, there definitely was a time I didn't think I would see that. Love that guy!”
From her LMS journey, Marge has learned to be her own advocate and research things for herself. She doesn't take everything a doctor says as gospel.
What’s her advice for newbies?
“When a doctor tells you to get your affairs in order, it often means you have reached the limit of HIS abilities. Don't be afraid to get a second opinion. I've heard too often that someone will stay with a doc because they like him. Don't rush to making a decision on treatment, research your choices. You are blessed to have so many people who can share their knowledge and experiences on the ACOR online list.”
If you'd like to share your long term thriver story, contact Sharon: 2SharonAnderson@gmail.com .