From Funeral Planning to Wedding Planning: Patsy's Journey with LMS

By Patsy Paolino

12/3/24

My story started in 2013 when my uterus prolapsed. I had surgery to insert a mesh sling that held my uterus in place however there was no investigation into what had caused it to happen in the first place. In late July 2014, I had a sudden onset of extreme abdominal pain and went to the emergency room where an ultrasound found a softball sized tumor sitting on top of my cervix. I went in for surgery to have the tumor removed in August. After the removal I was told that everything looked great and that my prospects for future childbearing looked good. So I went on my way and didn't think anything more about it.

Fast forward to Monday, Nov 2, 2015. I had been experiencing some shortness of breath and weight gain. Although as I have been a heavier gal my entire life that didn't spark concern for me. I went into our tiny rural hospital where an elderly male doctor put me in a room and never once did a physical exam on me. He ran blood work, told me I had a UTI, gave me antibiotics, and sent me on my way. That Friday. November 6 I was at work when I received a call from a nurse. Her tone was different and immediately I took note of the seriousness in her voice. She asked if I was still experiencing shortness of breath and I confirmed. She then told me to get to the closest emergency room. I told my boss that I had to leave and immediately drove myself to a freestanding ER that was close to where I was working that day. At the ER they gave me a CT scan. It felt like forever waiting for the results. I wish I had brought someone with me and hadn't gone alone. I will never forget watching as Dr. Crabtree entered the room and sat in the chair next to me and told me there was a very large tumor on top of my uterus that had multiple "arms" spreading from it. It involved my entire abdominal cavity. Even though we didn't have all the test results back yet, he told me that in his experience he had never seen anything like it that didn't turn out to be cancer. And given the size and how much was involved he estimated it was fairly late stage. My shortness of breath had been caused by the tumor pushing all the fluid from my abdominal cavity into my lungs. My right lung completely collapsed, and my left lung was over 80% collapsed. I had a thoracentesis to remove the fluid and allow me to breathe normally again.

I pretty quickly went into shock. Literally time stopped moving. I could see the air particles. I could hear the doctors and nurses mumbling words, but I just felt like I was floating. After I had the thoracentesis I picked up the phone and called my mother. I thought I would be okay to say the word "cancer" outloud but as soon as the word hit my lips I went from holding it together to breaking down and sobbing. A nurse rushed in and hugged me, and shortly after I was whisked away in an ambulance to the main hospital which was in the next town over. I spent the weekend in the hospital getting multiple tests run, including many scans of my lungs and abdomen. They had already contacted the Seattle Cancer Care Alliance (now Fred Hutch) and were arranging for me to be seen by a specialist up there. My father and I drove up to Seattle on Nov 16th for my first oncology appointment.

I remember looking at all the patients around me, some who were bald, others were pulling their IV poles along with them. Some looked like they were on the verge of death. It took all my will power to sit in the waiting room waiting for my name to be called so I could get blood drawn. I wanted to run away. I couldn't imagine being as sick as some of them looked. I couldn't imagine that I was looking into my own future. Throughout that first week I met with my sarcoma specialist and my surgeon. Both didn't have good news. From the surgeon's standpoint she didn't feel that putting me on an operating table would do much good considering how much involvement there was. She suggested we start with chemo and try to shrink the largest tumor. My sarcoma specialist was also concerned with how much involvement there was but was also because she knew that statistically speaking the chemo may not be of much help. So together we decided that if I was going to put myself through this we would give it all we could because I was only going to do this once. She called it a "hail mary regimen". I received massive doses of Adriamycin and Ifosfamide over six rounds.

My first chemo I was hospitalized for 9 days which included Thanksgiving. It was miserable and I didn't want to continue. But I did because I knew it might be worth it in the end. Either I would miraculously survive (spoiler alert - that's what's happened!! lol) or at the very least my body would be able to be studied and hopefully lead to new developments or discoveries for those with the same disease, as I planned to donate my body to science. I kind of just resigned myself to being a test subject for as long as it took. I've continued that during remission by joining the various studies like the Count Me In thing. I want my cancer to help if it can. I need to at least believe that it is being useful to someone out there who is fighting to end this disease.

For my next chemos I decided I would do them in Walla Walla, Washington, which was a lot closer to my home (at the time) than Seattle. Thankfully I had found an amazing medical oncologist Dr. Quackenbush who was happy to work as part of the team and conferred regularly with my specialist and surgeon. The staff at that hospital went above and beyond to try and make my stays as easy as possible. They knew I would be okay the first day, but by the end of Day 2, I was done, and I still had 3 days to go. They did what they could to keep my spirits up, such as letting me take a bath down in labor and delivery because that was literally all I wanted to make myself feel better. And they made it happen. I cried many times because of the kindness I was shown.

In late March 2016 I had a CT scan to see if there had been any shrinkage and to everyone's surprise there had been significant shrinkage in the largest tumor. They scheduled my surgery for April 26, 2016. My parents and I were at Emerald City Comic Con, sitting on the floor because we were exhausted from all the walking, when I got the phone call from the hospital that my surgery had been scheduled. My mother and I both broke down into tears. It was an incredible feeling knowing that there might just be hope on the horizon afterall.

On April 26, 2016 I checked into the University of Washington Medical Center early in the morning. I remember I was shaking because I was so nervous. I met with my surgeon and the team and before I knew it I was being pushed into the operating room. I remember laying on the table and the nurses and staff were getting the room in order and shouting off inventory supplies. There was this one nurse who came over to get me started on oxygen and I just remember staring so intently into his eyes because I was convinced his were the last eyes I would ever see. Sometimes when I close my eyes I can still see him. When I woke from surgery my first instinct was to check if I had a colostomy bag, as we knew that was a risk. Thankfully I was pleasantly surprised and did not. I lifted up my hospital gown and saw the staples leading from below my underwear line up to just under my breasts. Doctor came in later and told me she had successfully removed over 80 tumors, all of my reproductive organs, 11" total inches of intestines, and pieces of my bladder and abdominal wall. She had then used radiation to zap all the areas to ensure she got good margins. Everything was looking good. After 8 days I was discharged and got to go home.

I did one final round of chemo in June 2016. I was declared NED on August 1, 2016.

I have continued to have issues stemming from the many changes that happened to my body, and unfortunately I did suffer damage to my kidneys because of the high dose of Ifosfamide. That led to a 5 year struggle to get diagnosed with Acquired Fanconi Syndrome which is a rare side effect of this treatment. I spent 6 weeks in Minnesota in the summer of 2021 to meet with onco-nephrologist Dr. Manahar at Mayo Clinic who has experience treating patients with the syndrome. I was put on medication and have been fairly stable since. I do still deal with pain in my abdomen caused by the amount of scar tissue that grew in the months after surgery. I am still looking for a long term solution to that but have been unsuccessful so far. So I treat it with pain medications, THC, physical therapy, etc.

I have also struggled with mental health challenges over the years directly relating to cancer. Survivors' guilt hit me hard, and still can on some days. Joining a support group was both one of the best and hardest things I've done. I get to know these amazing people and then they pass away and I'm left wondering why. Why was I spared and they weren't? I spent years in therapy trying to get my brain back in order and for the most part I find that I have done that. I still have moments that are tough, but overall I am in a very happy place in my life. I am on antidepressant medication and likely will be for the remainder of my life, and I still occasionally see a therapist. I'd recommend everyone does.

The biggest lesson that my cancer taught me was that you can't do it alone. You need to have a great support system of family and friends, and you need to have an exceptional medical team that are willing and able to work with each other to get you the best care they can. You also have to not be afraid to advocate for yourself. I've met so many people over the years that don't understand how to advocate for themselves so I have enjoyed teaching that to others.

If I had to do it all over again the only things I would change are: 1) I would have had someone with me at the ER the day I was diagnosed. 2) I would have advocated for myself earlier. 3) I would have held my tongue longer and kept it private. Too many people came out of nowhere sending me books and websites on how to "cure" my cancer with baking soda and other nonsense. I wish I had taken some time to adjust before announcing it to the world.

Advice I give to all new patients whether they have LMS or not is to get a second opinion. A good oncologist won't care that you got a second opinion and should actually welcome it. Also don't be afraid to fire doctors or nurses from your team that just aren't working out. I had to get rid of the first oncologist they tried sending me to because he made me extremely uncomfortable, performed an unnecessary pelvic exam on me, and gave me the creeps. So I moved on and I found the best oncologist ever.

My fiance and I met in Sept 2022. I knew I was in love with him when he stayed by my side during a hospital stay and refused to leave. He has been with me to my doctors appointments and has seen some of what awaits if/when I have a recurrence. He really is the most amazing man I've ever met. He is kind, caring, and compassionate. He takes care of me and genuinely wants to do anything to make me smile and be happy. I cannot wait to walk down that aisle and become his wife. Our wedding will be on April 25, 2026.

If you are a long term survivor of leiomyosarcoma (7+ years) and would like to share your story, email us at info@LMSDR.org