Do you know if you have cancer in your family history? Share your story with us in the comments!
It was September 21, 2015, when my life completely changed, I was 22 years old, I was in a relationship with my boyfriend at the time, I loved my full-time job and life was great! Yet here I was lying in a hospital bed weighing a whole 102 lbs, anemic, and high off morphine to block the horrible stomach pain I had been having for the past year and a half, and kept getting sent home with a different diagnosis (gas, UTI, etc.,). Finally, an ER Dr thought it was my gallbladder and ordered an Ultrasound which led me straight to a CT scan because they found a large mass in my colon(size of a softball) and a dermoid cyst on my left ovary. A Doctor came in and asked if cancer ran in the family, I looked at my mom and neither of us even knew the answer so we looked at each other and said: “No we don’t think so?”
The doctor then got teary-eyed and told us that they believed I had colon cancer and possibly ovarian cancer as well and needed to be prepared for surgery ASAP. The gastro surgeon came in and told me I needed an emergency hemicolectomy and that I might wake up with a colostomy bag attached to me.
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When I woke up after surgery, my pain was completely gone, the intense stomach cramping I had for the past year and a half was finally gone! I, of course, had new pains like a giant drainage tube shoved down my throat and huge incision on my belly! (The cyst on my ovary wasn’t cancer but it did need to be removed) After a week in the hospital, came the real seriousness of the matter: “How’d I get cancer at age 22?” “Was it genetic?” “Do I need chemo?” “Can I still have kids?” “Am I going to die?!”.
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In October 2015, I had a genetics test done to see if I had Lynch Syndrome. That test came out positive so we went ahead and had my mom tested (who at the time didn’t even have health insurance) she came back positive. So after this discovery, my 2 brothers and my sister were all tested and came back negative. Out of 4 kids, I’m the only one that it got passed down to.
Okay so now back to my colon cancer, it was Stage 2 but they were able to remove all of it. Chemo was an option as a precaution and I decided to go through with it but only ended up doing 4 rounds instead of the full 12, because I realized doing chemo as a precaution just wasn’t worth all of the side effects. So I stopped chemo and went on with my life.
In March of 2017, my mom was diagnosed with a very early stage 1A of endometrial cancerthat was caught early because of my diagnosis. Had she not known about her Lynch Syndrome diagnosis it could’ve been a horrible outcome. She had surgery to remove cancer and a full hysterectomy done at the same time with no follow-up treatment needed.
In June of 2017 at the age of 24, I had been having what we thought was neuropathy for at least 6 months and my oncologist just kept dismissing it as neuropathy from chemo even though I only had it in my left hand and left foot, Well by June this “neuropathy” was only getting worse.
I had just started a new job at a bank that I was extremely excited about and was living with my 2 best friends at the time. From December 2016-June 2017 I slowly started experiencing severe depression and gained a ton of weight. I was in and out of the ER for what kept me getting dismissed as “dehydration”. The depression got so bad that I ended up moving back in with my mom and cutting my very unsupportive “friends” completely out my life, as they had no idea what I was going through and would just get upset that I didn’t want to go out with them.
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While working at the bank I started noticing how hard it was getting for me to count money and I kept messing up transactions and forgetting transactions. I started getting severe headaches and my oncologist kept dismissing me and suggested Advil and seeing a Psychologist for the depression, he didn’t believe me when I told him I needed a brain scan. I finally got sent home from work on June 16, 2017, because I couldn’t stop throwing up. I went straight home and had my mom take me back to the ER as I had just been there the night before and was dismissed after been given 2 bags of fluids. And the same thing happened this time as well “Oh you’re just dehydrated here’s some morphine and fluids”. My mom and I demanded an MRI for my brain and the ER doctor finally put a request in for one. I went home and the next day they were able to squeeze me in for an MRI and I remember looking down at my foot as I was walking to my scan and my left foot was just flopping around and I also remember how much of a struggle it was to even get my shoe on it.
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It was like my brain and my foot wasn’t communicating. After my MRI I was headed to a summer concert I had been looking forward to, it was about 100 degrees outside but I really wanted to go. I ended up leaving early and the next day I got a call from the oncologist that was on-call at Kaiser with the results of my MRI, she told me there was a large mass in my brain and she believed it to be cancer and that I needed to be hospitalized immediately, but needed to have someone to take me. My mom was out with a client and my sister was out of town. Luckily my brothers were home so they were able to take me, and I was admitted immediately. For some reason, they weren’t letting my brothers in the room with me and the ER Dr started telling me what was going on, he said my colon cancer metastasized to my brain. He said he talked to the neurosurgeon at a different Kaiser and that my prognosis was 1-2 months tops. I didn’t even realize what prognosis meant so I asked him and he grabbed my hand and told me it meant I had a month left to live. He said that the surgery wasn’t an option and I would have to stay in the hospital on steroids. I was in this room all by myself when he told me this horrible news. When I was moved to my hospital room I had a new oncologist came to check on me, he asked me why I was so upset since we didn’t know all of what was going on yet. I told him I was told I had a month to live and he said that wasn’t true and we wouldn’t know any of that without a biopsy first. He said I would need surgery for a shunt to help drain the fluids in my brain and be on steroids until then to bring the swelling down. That same night I received a call to schedule my surgery at another Kaiser hospital and I was released from the hospital the next day.
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July 7, 2017, was the day of my brain surgery where we discovered the tumor was inoperable so only a biopsy was able to be done. And the brain shunt was also installed. We then found out the tumor was a Grade 2 Oligodendroglioma which is a slow-growing tumor and was not related to my colon cancer but did test positive for Lynch Syndrome. I was prescribed 6 weeks of radiation and 7 rounds of chemo. The radiation took care of a good chunk of the tumor but there’s still a good amount left. So here I am 8 months later and I’m currently undergoing chemotherapy to hopefully get rid of the rest of the tumor, I just completed round 3/7 and have an MRI scheduled for next week to check on the progress. I lost my job through this whole ordeal and I lost most of my “friends” as well. I do have an amazing support system of family and family friends that I’m extremely grateful for. Oh, and I have a new oncologist now as well and he’s been great! Through all of this, we have really learned how important it is to know your family history and listen to your body so now my mom and I are working on spreading awareness to everyone we possibly can about Lynch Syndrome!
