Aug 16, 2017 Latest post:
May 20, 2019
I was diagnosed with uterine leiomyosarcoma cancer June of 2017. I went into the hospital on 6/2/17, for what was supposed to be a simple outpatient myomectomy to remove a fibroid. Well a few hour stay turned into an almost 3 week stay due to several complications. About a week after my surgery I was informed I had uterine leiomyosarcoma. A very rare cancer, especially for someone my age. I was not able to speak to an oncologist for about 2 weeks after my diagnosis and when I finally did I was told it was stage I cancer. (Update: Stage IV)
On July of 2017, I had a hysterectomy. That hospital stay was only 5 days. No complications. During the surgery the surgeon took several samples that looked suspicious, including a piece of my small bowel. All samples except the small bowel came back negative for cancer. Since the cancer had spread to the bowel, I moved up to stage III. I then went to see a sarcoma specialist to come up with a treatment plan.
I started chemo on 8/7/17. Each cycle consists of therapy once a week for 2 weeks then off the 3rd week. A few days before starting chemo I went in for a CT scan where they found that I had some nodules in my lungs and liver. The specialist suspects they are metastasis which means the cancer spread from the original site. That would move me up to stage IV. If the nodules respond to chemo then it is metastasis. If it doesn't , it doesn't mean it isn't so they might do a biopsy later to check if it is. The doctor decided to wait on biopsy in order to not delay chemo and risking it spread more. If it does respond to the chemo then they can try to do surgery, but the dr says they most likely won't be able to cure it. It's a possibility but odds are low. They'll continue chemo or try other things, but odds of cure aren't great if, in fact, it did spread to lungs and liver. Not great, but possible! The odds of me getting this type of cancer were lower so I'm sure I can beat these odds also! 😜
I've known for a few years I had a fibroid, but I was told it was benign and there wasn't a need to remove it unless it was bothering me. I was told that it was likely to return eventually so I decided to wait to remove it since I had minimal symptoms. I finally decided to have it removed in February of 2017. I ended up having to postpone my surgery until June because they found a blood clot in my lung. At the time they found it the doctors believed the blood clot was a result of a fall during a vacation or a long flight. Turns out it's a side effect from this type of cancer. They don't believe me removing the fibroid years earlier would have prevented the leiomyosarcoma. As far as they know, and they don't know much due to the rarity of this cancer and the minimal research, they don't believe this cancer arises from an already existing fibroid. There is also no way to know if you have this type of cancer until after surgery.
During the month preceding my surgery I noticed my fibroid was getting noticeably larger. I looked about 5 months pregnant. Prior to this month I couldn't even feel the fibroid. During my pre-op appointment I asked the surgeon why my fibroid would have doubled in size. He told me it could be because of the blood supply or that it could be uterine leiomyosarcoma. 1st time I had ever heard there was a possibility it could be cancer and he obviously wasn't planning on mentioning it since I asked him that question right when I was getting ready to leave. He nonchalantly proceeded to tell me... "yeah if it is cancer, it's pretty deadly so yea..." Just like if he was telling me what he was going to have for dinner! Now I'm thinking he felt the odds of me having it were so low that he didn't feel the need to mention it and was fine expressing how deadly it is. Not very cool! I'm hoping he learned from this experience.
After learning of the possibility of cancer I spoke to several doctors. I was told by all that they did not believe it was cancer. They felt I should go ahead with the myomectomy instead of a hysterectomy. A hysterectomy to begin with would have been much safer because it might have prevented it from spreading by taking the uterus out whole and not disturbing the tumor. Now I know that they were all just looking at my age and the rareness of this type of cancer. I had every possible symptom but not one doctor I spoke to, and I spoke to many, thought it could be uterine leiomyosarcoma.
No matter what, I'm staying very positive through all of this because of my strong faith and the very strong support I'm receiving from everyone. I'm totally being spoiled and feeling the love by all. I have so many people praying for me and I know God is listening to every single one of those prayers!!! With God by my side, I will beat this ugly beast!!! I am a fighter and will be fighting more than ever! I know I will come out of this stronger than I've ever been. I know God has big plans for me and in the end, no matter how hard the road will be, I know good will come out of it. For me and for others! I know God is with me! I feel his presence around me and he is surrounding me with peace and positivity!
philippians 4: 13 I can do all things through Christ who strengtheneth me.