Rita Hamilton, Long Term LMS Thriver
Rita Hamilton, “Keep on Truckin”
Rita Hamilton was diagnosed with uterine leiomyosarcoma in August 2000, when she was 42 years old. At that time she was told she had 18 months to live. In the 19 years since then, she has learned that doctors cannot predict how different patients will do, and stage four sarcoma does not have to be a death sentence.
Nine months after Rita was diagnosed, her sister was also diagnosed with uLMS. Her sister only lived four weeks more after diagnosis.
At the time of diagnosis, Rita, who lives in rural Tillamook on the Oregon coast, worked for an excellent general surgeon, Dr. Lyle Mohr. He recommended a colleague and good friend for her initial hysterectomy. During surgery a tumor was found, and it was wrapped around Rita’s colon. A colostomy was recommended to her husband, but he refused since he was told it would not prolong her life. Instead, Rita’s doctors undertook the arduous task of picking the cancerous cells off her colon. The consulting surgeon was sure Rita would have an obstruction at some point, but that has never happened.
Rita believes her surgeon must have suspected a more serious tumor at the time of the operation because he had pathology on standby. By the end of the surgery, they knew she had some type of sarcoma. She was not the first or last LMS patient he had seen.
At an early oncology appointment, it was recommended that Rita do MAID (mesna, Adriamycin [doxorubicin], ifosfamide, and dacarbazine.) From the reading she and Dr. Mohr had done, they were not convinced it would be effective. So Dr. Mohr then consulted with Dr. Demetri at Dana Farber, who suggested a wait and see approach, which is what they did. Dr. Mohr continued to order the scans, reviewed the results with the radiologist, and then communicated to Rita the results.
For the first year post-surgery, Rita received CT scans every two months, and after that every three months. For the first two years all scans were clear. At the two-year mark, a tumor in her abdomen near her bladder was found and excised with good margins by Dr. Mohr, with the original GYN surgeon assisting. Close to this time a lump on the back of Rita’s head was also found, right at the edge of the scalp. Dr. Mohr came to the rescue again, removing the lump with a wide resection of Rita’s scalp. This intruder turned out to be an amelanotic malignant melanoma lymph node. A primary was never found, and Rita has had no issue with melanoma since.
Rita had clear scans again until the end of the third year, when her first lung metastasis appeared. It was removed by a thoracic surgeon. When more very small metastases appeared a few months later, it was time for a different course of action. This is when Rita consulted with Dr. Martee Hensley at Memorial Sloan Kettering Cancer Center (April 2004.) They tested her tumor and found that it had estrogen receptors. Doctor Hensley recommended letrozole, (brand name Femara), an estrogen blocker. Rita decided to take the letrozole under the care of her local oncologist.
In 2009, Rita decided she needed a short break from the letrozole because of the painful side effects. At the same time a mediastinal mass appeared. Fortunately, it was able to be removed via VATS (Video Assisted Thoracic Surgery.) In 2013 she was switched to exemestane (brand name Aromasin) because the letrozole was no longer working. Rita had developed a tumor behind her heart, which when biopsied, was found to be LMS. After 26 radiation treatments, the tumor shrank and has been stable ever since.
Then, in August 2018 it was discovered that Rita’s lung metastases were growing. So in November she had VATS, and the middle lobe of her right lung was removed. She also had a consultation with Dr. Kristin Ganjoo at Stanford who recommended trying Evista (raloxifene), a different type of estrogen blocker. It has kept her stable this last year, though the side effects are major joint pain and problems with swelling in her ankles and legs.
As of this writing, Rita has a tumor on the lower right lobe of her lung and small metastases on the left. She also has a tumor behind her heart that is inoperable because of its location. Nonetheless, her motto and advice to all is not to let LMS stop you from living.
How has Rita coped with the disease, scans, treatment, and the death of her sister to uLMS? She credits three non-medical factors: her faith, love of travel, and helping others. Medically, she credits the estrogen blockers. She feels it did not help by taking a break from these inhibitors. If she could do it over again, she would not have stopped this treatment. She is very glad she never had any traditional chemotherapy.
As for a final word of wisdom from this thriver of 19 years:
“HAVE YOUR TUMORS TESTED FOR HORMONE RECEPTORS, AND KEEP ON TRUCKIN’.”
UPDATE FROM RITA: Because I was given such dire survival prospects, one year after I was diagnosed we went on a “last trip” to Hawaii. Later, when I was still alive, we went on another “last trip”. We have been blessed with many “last trips”. Our friends started to go on these trips with us and asked me to do their booking. After my job ended and I had to go on disability I decided to officially become a travel advisor. I have been doing this for about 8 years. I was very excited when Sharon asked about arranging a cruise for LMSDR. This is something that I have wanted to do for quite some time. I look forward to sharing my love of cruising with all of you.