Kathy’s LMS journey: learning hope, compassion and new normals
Kathy Breit’s cancer story is a difficult one, but the current chapter is full of happiness and hope. Kathy’s LMS odyssey began in 2012, when she was 58 years old. While showering, she discovered a painless lump half the size of a ping pong ball in her inner upper thigh. Unfortunately, the first doctor who attempted to treat her thought the lump was a cyst and cut it open. When the “cyst” didn’t seem to be draining properly, he cut into it deeper, and then was unable to close up the resulting wound. Kathy was sent home still bleeding and given antibiotics (a kind she was allergic to!) to take while awaiting a diagnosis. She feared it might be cancer, since she had recently lost some weight without trying. Sure enough, it was retroperitoneal LMS—and receiving that diagnosis on the phone while at work was truly hard. Kathy learned that her tumor was attached to her vagina, resting against her rectum and close to her bladder.
Kathy was referred to a good gastroenterologist who acted quickly to plan her treatment, putting together a team of three different doctors within just three weeks. By this time, the partial ping pong ball had grown into an orange. While her doctors were afraid Kathy would lose her rectum and possibly her bladder in the surgery, she didn’t; however, to preserve it, they had to settle for narrower margins than they would have liked. After surgery, Kathy did chemotherapy (gem/tax). There was disagreement about whether she also needed to do radiation; while her oncologist didn’t think it was necessary, the hospital’s tumor board did, and the scary statistics they shared, together with the knowledge that her surgical margins had not been ideal, led Kathy go ahead with it.
Unfortunately, the radiation went about as badly as it is possible for radiation to go. While receiving radiation treatments, Kathy developed a c-diff infection, lost 30 lbs. in just a month, and developed a bladder infection and severe potassium deficiency that resulted in a 9-day hospitalization. But the radiation sessions continued despite all of these problems, leaving Kathy with a severely burned vagina, bladder, and rectum. She now has a colostomy, which has actually made things easier in some ways and relieved a lot of pain; unfortunately, she also has a perineal wound that just doesn’t want to stay closed and other ongoing problems. And the combination of severe pain, cognitive difficulties related to tapering her oxycontin, and being in and out of treatment made it impossible for Kathy to continue working at her job as a resort event planner, which she had loved. They terminated her employment after first telling her she would either have to step down from her management position and take a lesser position or leave. She left! She was able to get approved for disability quickly, though, since LMS is on the Social Security “compassionate allowance” list.
After her surgery and radiation, 18 months in, Kathy developed metastases in her spine at the T8, T9, and T10 vertebrae. She confronted a very difficult treatment decision when it became clear that stereotactic radiation did not work. The sarcoma specialist she went to for a second opinion in Ann Arbor, Michigan warned her against having spinal surgery, saying she had an 80% chance of developing more tumors. The spine surgeon had had previous 2 patients who were left paralyzed after this operation, and the doctors pointed out that the operation might not work anyway. But one doctor Kathy trusted gave her hope and encouragement, as did another patient in our LMSDR Facebook group who had had a similar surgery and recovered well. The surgery was performed in two parts, with 3 days of medically-induced coma in between, and it was extensive—they removed a rib and placed a cage on her spine to fuse to her missing vertebrae, and 4 titanium rods were placed around her spine for stability. It took about a year to really recover. Kathy also had some inoperable lung metastases that were successfully treated with Cyberknife; while the masses remain in her lungs, they have shrunk and appear to be dead.
One very unusual aspect of Kathy’s situation—and one that caused a lot of stress and confusion at the time—was that her spine tumors tested positive for both LMS and GIST. Kathy was initially worried that she had been misdiagnosed and received the wrong treatments, but it turned out that she is just an incredibly rare patient—so rare that her case was discussed in a medical journal.
Although Kathy has suffered a great deal, she is very happy to say that she currently has no evidence of active disease. She is on letrozole and being scanned every 4 months. She has sought out counseling and taken antidepressants when necessary, and she finds that medical marijuana helps a great deal with managing anxiety, pain, and sleep difficulties. Kathy takes exercise classes like chair yoga, works out on her outdoor recumbent bike (she rode 350 miles last year), gets outdoors whenever she can, and loves to spend time with her family, her cat, and her 3-month-old puppy. And she has learned what matters most to her: family, friends, and seizing every opportunity for happiness.
Kathy’s wonderful partner Linda is still at her side after 20 years, helping her maintain her sense of humor and her sassy style–when she had her head shaved during chemo, Kathy decided she would keep part of it in a mohawk as long as she could. It has been hard for Linda to see what Kathy has had to endure; she cries more often than Kathy does. But she has always been there for Kathy.
Kathy encourages others to find doctors they truly trust; while she agrees with the common advice that it is important to see a sarcoma specialist, her first doctor was not one. She was living in a rural area at that time, so it was easiest to see him, and he did follow all of the appropriate protocols. When Kathy’s LMS metastasized, they both decided she needed to change doctors. She recommends that everyone be very proactive about testing, especially for ER/PR (even for non-ULMS tumors), and says that taking someone along to appointments is extremely helpful.
While Kathy has always been a kind-hearted person, her experiences have made her more aware on a day-to-day basis of the ways in which others may be struggling. Kathy is grateful for the chance to help others, and she is also grateful for the support she has received. When she was diagnosed with LMS, she couldn’t find any information about it—but our wonderful former LMSDR group member Daryl Brown saw something Kathy had posted online and reached out to her. Through the LMSDR group, Kathy ended up connecting with several people who became her friends. Knowing how important it is for all of us to be supported by others who truly understand the struggle of LMS treatment, Kathy decided to give back by serving as a group moderator for 1.5 years. She is sharing her story now to give others hope; despite all she has gone through, this is the happiest she has ever been. She is so glad to still be here for her 2 children, watching her 3 grandchildren grow and enjoying each day.
If you have survived leiomyosarcoma for 7 years or more, please share your story to pass the hope forward! Contact Vicki Behrens at firstname.lastname@example.org