The Good…The Bad… The Ugly

My Story of Leiomyosarcoma
Susan Titus

In “honor” of Leiomyosarcoma Awareness Day, here is my story. I hope in sharing my tale, there will be at least one person who will be encouraged to get a check-up.
While I wasn’t diagnosed with LMS until September of 2012, my story starts well before that. I was in my early 40’s and changes had been happening to my body. I spoke to my gynecologist about it at a minimum of two annual appointments but she kept telling me that everything happening was “within normal range.” I assumed I was starting menopause early. I wish I had been stronger, I wish I had insisted that we run more tests. While everything happening was within normal range, it wasn’t normal for me. But she was the “doctor” and I trusted her. In June 2011, it got out of control – fever, pain in my abdomen. Finally I got a CT scan and it was discovered that I had fibroids – 9 of them. A hysterectomy was scheduled, a cruise to Alaska canceled (at least canceled for Ron and me) and they were removed. Pathology came back normal and life went on. (On a separate note, if you or a family member ever need a hysterectomy, DO NOT LET the doctor morcellate – cut up – the tumor to remove it. Never!)

In late August 2012, I had been feeling lousy but not bad enough to go to the doctor. I traveled a lot over the summer and thought it was just the travel catching up to me. Taking a nap one day on the couch, our cat Sparky jumped up to lay on top of me and the pain in my abdomen was overwhelming. I finally decided to go to the doctor. My regular doctor couldn’t get me in, so I went to one of those urgent care places. The doc there said he thought it was one of three things: Urinary tract infection, diverticulitis or (chemo brain, I don’t remember the third thing).

He treated me for the UTI and said if I was still feeling bad in a few days, that I should go to the ER to be checked for diverticulitis. He said that it could get pretty bad and require surgery so not to wait too long. That in the ER they could do a CT scan right away instead of going to my regular doctor and having to schedule it.

The following Tuesday after labor day I was still feeling bad so I dropped Eli at school and went to the ER by myself. I didn’t tell anyone I was going. I thought they would tell me I had diverticulitis and would treat me. I had a big business trip the following weekend and I wanted to make sure I felt well for it.

At the ER, they wanted to give me something for pain so they asked me to call someone to drive me home. I called my mom and she headed that way. After the CT scan and some bloodwork, a doctor I have never met before walked in the room and said “You have cancer. There is a mass in your abdomen the size of a grapefruit. It has also spread to your lungs and there are two nodules in your right lung. I am working on getting you in with Dr Walker at OU Medical Center.” To say my mom and I were stunned, is an understatement. Seriously, this was supposed to be diverticulitis!! I called Ron sobbing and asked him to come. This was the first time I truly understood what the different stages of cancer meant – I was stage 4. There is no stage 5.

However, even as stunned as I was, I was never scared. As soon as the doctor said I had cancer, I felt God’s arms wrap around me. I knew He would be with me for this journey and there was a reason He had chosen me. Cancer does not run in my family. In fact, I have joked with my doctor in the past that my family does heart disease not cancer.

The ‘official’ diagnosis from Mercy was Uterine Cancer. How could that be possible when I had a hysterectomy the summer prior and had my uterus removed?

The doctor could not get us an appointment with Dr Walker until September 17 – almost two weeks later. After some questioning and research, we realized that Dr. Walker is THE BEST and it would be worth the wait to see her.

My ob/gyn, Dr Engelbrecht, had me come in for some additional tests that she thought would be helpful to Dr Walker. She was confused also by the uterine cancer diagnosis. She was on the phone constantly to Dr Walker and managed to get my appointment moved up to September 14.

At that appointment, Dr Walker told me she thought it was ovarian cancer. I had one ovary left from my hysterectomy. The appointment was on Friday and she wanted to operate on Monday. The surgery went well and Dr Walker came out and said it was not ovarian cancer. When they removed the mass, they found a perfectly healthy ovary sitting right underneath it. They did remove the mass, the ovary, my appendix and had to re-section my small bowel where the tumor had attached itself. She said it was one of two things: either a non cancerous growth or a very rare type of cancer, Leimyosarcoma.

We found out the next day it was Leimyosarcoma which affects only four in a million people. Basically the doctors say it is a very aggressive type of cancer which never really goes away. I pulled up one or two articles online and haven’t googled the word since then. I don’t want the negativity. I am surrounded by an incredible group of family and friends that encourage me like crazy. I have never realized just how blessed I was until I started this journey. As my friend Bill says, this has been the worst time of my life and the best time of my life.

My first cycle of chemo started on November 1, 2012 (after a trip to MD Anderson to confirm the diagnosis). The chemo was rough but it helped to shrink the lung nodules. In April 2013, Ron and I met with a local lung surgeon who basically said he wouldn’t operate – that my prognosis was “set” and surgery wouldn’t give me a longer life. Then, we went to Sloan Kettering in NYC and met with the Chief Thoracic Surgeon who not only agreed to remove the lung nodules via a VAT procedure (robotic surgery) but insisted the surgery would be no big deal. She was spot on and from June to October the following year, I was “NED”. NED = no evidence of disease. LMS doesn’t go away … ever. But there can be periods of no active disease.

Then October 2014, cancer returned to my abdomen. A baseball size tumor connected to the femoral artery, colon and bladder. Back to chemo for some shrinkage and then surgery in Spring of 2015 to remove the tumor. However, they weren’t able to get clear margins due to tumor on artery. By October of 2015, it was back again. I’ve been on and off chemo since 2012 … the chemo I started with was very successful for me until earlier this year when it quit working. See, tumors are smart. They figure out ways around the chemo. They reprogram themselves to outsmart the meds. Who knew?? Well, now you know.
I tried a second type of chemo earlier this year with no luck. I am now on my third different chemo. Chemo is hard. Years and years on chemo is even harder. Your body isn’t the same. Your mind isn’t the same. It’s tough to be so dependent on other people when you have always been able to take care of yourself.

There are lots of tumors now – all in my abdomen. I don’t even know how many. The biggest and peskiest one is the one wrapped around my femoral artery. I also have tumors pressing on my ureters so I have kidney stents in both kidneys – just another medical procedure every 3 months to replace them.

I scan again in 10 days to find out if this new chemo is working. LMS is a rare cancer. There is not much research for rare cancers. There aren’t many options for chemo that have been tested for LMS. Cancer sucks. Rare cancer sucks so much more. There is no protocol for treatment. The statistics are frightening. There are no groups I can meet with in person – I only know a handful of people within 300 miles of me that have LMS. There is not a sarcoma oncologist in the entire state of Oklahoma. Luckily we have a great online support group that raises funds for LMS research. We are all available to each other to ask and answer questions. Dr Walker is always amazed when I come in with information for her that she didn’t know (and trust me, she is one smart cookie). She lets me direct my treatment as much as possible. Part of that is because she realizes there is no expert in this disease and part of that is having a stage 4 diagnosis. Pretty much they let you get away with what you want – after all, what can it hurt??
We have spent thousands and thousands of dollars in medical costs – even with fantastic insurance. I have been poked with a needle more times than I can even count. I have had medical tests that I wouldn’t wish on my worst enemy. In just a few short years, I have had more CT scans than an entire extended family should have in a lifetime. I could have built a skyscraper with all my empty prescription bottles and medical ID bracelets. The side effects can be brutal and unforgiving. I have been in and out of the hospital with random infections. Not an hour goes by that I don’t worry about my family and the impact that I am having on them.

However, despite all the bad stuff, I have been incredibly blessed with an awesome medical team from Dr Walker to the nurses in the infusion center to the staff members and my chemo pharmacist who, on her own, has made an incredible difference in my quality of life. My friends, coworkers and family have created the most incredible support system for me. I wish that everyone who had cancer had the love and support I have on a daily basis.

God has a plan. It isn’t up to me to know what it is. I’m blessed He has kept me around and I hope my journey has helped at least one person. God has been all over my journey – I can’t even explain how many times something incredible happened and it was apparent that it was a God thing. Those moments have kept my faith during the hard times. He is the greatest healer and has my future in the palm of His hand.

It’s not a journey I would have chosen for myself or my family. As a patient, I can guarantee you that being the patient is the easiest part of this. The family members, friends and loved ones all have it much harder. I can’t imagine the pain they go through when I am feeling bad and there is nothing they can do to help. It is heartbreaking to have your kid or husband or mom watch you suffer and know there is nothing they can do to help ease the discomfort.

So … if you made it through this story and are still reading. Please pay attention to your body. Make sure you get regular check-ups. Make sure your family gets regular check-ups. Remember that you know your body better than anyone else. If you don’t agree with your doctor, get another doctor. You are your own best advocate. And pray. #Psalm91