Vicki Behrens, Long Term Thriver
By Vicki Behrens 7/31/22
I was diagnosed with retroperitoneal leiomyosarcoma in late October 2013, when I was 41 years old. The diagnosis came as a complete surprise. I was the most active I’d ever been, and for almost a year, I had been assuming that the weight loss and flank pain I was experiencing were caused by running. When trips to a massage therapist, an acupuncturist, and a physical therapist failed to resolve the pain, I finally dragged myself to my primary care doctor. I was sure she would tell me to take some Tylenol and put an ice pack on my increasingly-sore side. Instead, after palpating the area, she ran a series of blood tests; the results of those concerned her enough that she sent me for an ultrasound, which led to a CT scan, and my LMS journey was underway.
I was fortunate that one of my close friends was a doctor in training; she asked people in her network where I should go, and everyone recommended a particular surgeon. As I sat in his office awaiting a treatment plan, it was hard to believe that I had been solo hiking in the Rockies a week before. My surgeon had been working for many years with a respected radiation oncologist; together, they developed a plan for me to receive carefully targeted IMRT (intensity-modulated radiation therapy), followed by surgery.
Those 25 sessions of radiation shrank my tumor and killed over half of the tissue in it, encapsulating it nicely. I didn’t realize at the time how lucky I was that radiation worked so very well for me. I was mostly struggling not to lose weight, which was a bizarre experience, as I had been overweight my entire adult life. Despite all the radiation oncologist’s efforts not to hit any of my major organs (all of which had fortunately been somewhat displaced by the large tumor), I was constantly nauseated. The tumor had also begun to press on some nerves, causing severe shoulder pain. I could have taken that month off work--after years as an employee at the same university, I had a ton of sick leave saved up--but I was stubborn. I dragged a futon mattress into my office so I could take naps in between meetings and appointments with students. I regret this now and would urge anyone who is exhausted during treatment to take advantage of whatever time off they have available--and to start taking prescription anti-nausea medication when it’s recommended, instead of trying every ginger-related food and drink known to humanity.
After radiation was done, I spent the months of December and January waiting for surgery. This period was very difficult, as I was still in pain and tired, and--though I wouldn’t admit it even to myself--terrified about the future. I started having episodes of difficulty breathing and was sure that the asthma problems I’d had in my early twenties had returned; when albuterol didn’t work and Xanax did, I realized these moments were probably panic attacks. My family, friends, and colleagues were all very supportive, but I didn’t really open up to anyone about how I was feeling. This, too, I regret; I have finally learned now that anxiety and sadness can be easier to manage when they are shared, even if all the person you are sharing them with can really do is listen.
The day before my surgery finally arrived. My parents had come to town to help me and my husband, my bag was packed with carefully-chosen nightgowns, slippers and books, and I knew exactly what time I wanted to leave the house the next morning. Then the storm started. If you are from the southeastern United States, you know what happens when snow is forecast--and to my horror, it became clear that we were going to have both snow and ice. The hospital called to say my surgery might have to be rescheduled if the surgical team couldn’t make it to work. To my own surprise, I was completely distraught--more upset than I could ever remember being. I realized then exactly how desperate I was to have the tumor out--how on some level I had been thinking about nothing else but the presence of this tumor ever since I had been diagnosed. Fortunately, my surgeon teased the radiation oncologist about being too chicken to drive in the snow until he agreed to brave the ice-rink roads, and the surgery went forward.
I had been forewarned that I might wake up with a missing kidney, a colostomy, a urostomy, a reconstructed IVC, and/or a host of other problems. A vascular surgery team was on call. But it turned out that the hardest thing about the surgery, according to my surgeon, was getting my gallbladder out! I apparently had more gallstones than he had ever seen, and he spent much of the five hours I was under anesthesia figuring out what to do with it. I was incredibly lucky--although the tumor had been large (17x15x13 cm after the radiation that shrank it), it peeled off nicely from the organs around it. A piece of my liver was also removed. Both of my kidneys were spared, though one had some radiation damage. I received intraoperative radiation on the one small area of my abdominal wall where the surgeon was concerned about margins.
I was out of the hospital after just 3 days and back at work after 6 weeks. My incision healed well, though I had a lot of strange and sometimes painful abdominal sensations for at least a year afterward. I wore a binder for most of that first year because it made me feel more secure. I also found a great therapist (one with cancer experience) and started actually processing what I had been through, as well as my anxieties about the future. By this time, I knew how frequently LMS returns. When my surgeon flatly refused to order scans at 3-month intervals, I changed to a different hospital, where a sarcoma specialist took over my case. The process of changing doctors was very upsetting; my surgeon had saved my life, and I had (and have) tremendous respect for and faith in him, but it was clear to me that 3-month scans were the standard of care, and I was determined to have them. I also sought a second opinion at the Dana Farber Cancer Center, both to see if they recommended anything else (like chemo) for me and to establish care there in case I needed it in the future.
So far, I have not needed it; it has been 8 years now. I did develop a very large incisional hernia a couple of years after my surgery, because I lifted something too heavy; another big abdominal surgery was required to repair that, and afterwards I developed a partial bowel obstruction, then a lot of surgical adhesions that have worsened over time. It is difficult for me to bend over or sit in certain positions without a stabbing pain in my side, but that hasn’t caused any real problems. I have given up on trying to learn to run, but I go hiking frequently and generally feel like I don’t have many more medical issues than most people my age (I have just turned 50--something I was sure would never happen!). At this point, I have moved across the country and am receiving annual scans from an oncologist who is not a sarcoma specialist (because the nearest one of those is 5 hours away)--but if I have a recurrence, which could certainly happen, I will find a way to live near a major cancer center during treatment.
I have learned so much from everyone in the LMSDR Facebook group, where I am now a moderator. I love it that we share both our experiences (good and bad) and our knowledge. The stories of long-term Thrivers who have never been disease-free (NED) but are still living good lives and helping others give me hope that I will be able to cope if my LMS returns. I hang around in the group to try to remind newly diagnosed people that they cannot know their outcomes in advance--my initial prognosis was poor because my tumor was very large and very deep, but I turned out to be one of the luckiest LMS patients around.
People often wonder what has helped long-term survivors. I have never been on any kind of special diet, and I eat an obscene amount of sugar. I do not take any supplements. While I did mindfulness meditation regularly for a year or so and would strongly recommend it to anyone, I have not kept up that practice and am not any more calm, grounded, or positive than anyone else I know. I think that what has saved me so far is a combination of having a great surgeon and being incredibly lucky. I know that that is not what anyone wants to hear--especially at the beginning, we all want to identify things we can do to improve our odds because that gives us a sense of control. To anyone who is feeling that way, I would suggest focusing on two things: (1) be sure you are getting care from people who know what they are doing--preferably at a major sarcoma center, and (2) take care of your general health and fitness so that you are as ready as can be for whatever comes your way in the future.
Many cancer survivors are helped by their religious faith; I feel like I have been helped by my lack of it. I am, and always have been, an atheist. This has meant that I have no god to turn to for comfort--but I have also never had to ask myself why a loving god would allow such bad things to happen to me! Because I see cancer as an inevitable biological phenomenon that has been striking humans, animals, and even plants for as long as cells have reproduced by dividing, I have not spent much time fretting about whether I somehow caused my own cancer. I have also never been inclined to ask “Why me?” because I figure “Why not me?”
LMS arises in young people, older people, men and women, vegans and avid meat-eaters, marathon runners and couch potatoes. If you have it, it is not your fault, and there is not a known cause (except in the case of a few rare genetic mutations or childhood radiation exposure). There is also not a magical cure. Nobody is getting out of this life alive, right? But we can use our own strengths and lean on the people who care about us to get through hard times and live the best lives we are able to, for as long as we are able to. If you’re an LMS patient and you aren’t in the LMSDR Facebook group, join us! Nobody understands what you are going through better than we do, and we will do our best to support you, connect you with information and resources, and give you hope. And you can pass that hope forward by helping to support LMS research and sharing your experiences.
If you have survived leiomyosarcoma for 7+ years, share your story, and pass the hope forward. Email info@LMSDR.org