On Being Misdiagnosed Then Learning I Have Two Types of Cancer at 25

It all started six years ago when I was 24 years old. I was a “normal” college student figuring out what I wanted to do for the rest of my life, but not feeling well at the same time.

The first ER visit was the result of severe abdominal pain. I was seen by a nurse practitioner who was very thorough. She said it may be am ovarian cyst or appendicitis, so she gave me some tests to do in the community and said if I was still experiencing the pain, to come back right away.

The pain eventually subsided — it was a small ovarian cyst. Within that year, I went to the ER two more times with rectal bleeding and several abdominal pain. Blood work was done, showed low lymphocytes, but that was it. I was told I had hemmorrhoids and gastroenteritis and it would clear up in a couple of weeks.

The pain did not clear up, so I saw my family doctor twice and on the second visit, he referred me to a gastroenterologist. I saw the gastroenterologist a couple weeks later and he said we should do a colonoscopy.

I was happy I pushed for the referral because I knew something was wrong.

I had the colonoscopy done on September 25, 2012 and since the gastroenterologist was away, my family doctor gave me the results on October 3, 2012.

This was a day filled with mixed emotions.

I finally figured out what was wrong, but at the same time, I was diagnosed with cancer at the age of 25. I was diagnosed with two types of Non Hodgkin’s lymphoma — one aggressive (diffuse large B-cell lymphoma) and one indolent (MALT lymphoma) — both found in the bowel.

Two weeks later I met with my oncologist who outlined the tests I would be doing prior to chemo. I had a nuclear medicine test, CT scan and a bone marrow biopsy.

The bone marrow biopsy was so scary but I was glad I was able to make it through. The next week, I met with her again and we discussed the chemo — I would be on the R-CHOP protocol.

I began chemo on October 31, 2012. I had started a job serving seniors lunch and dinner at a retirement home six weeks earlier and I had to tell them I would be taking five months off. They said to take as much time as I needed and that I’d have my job when I got back. I was so happy to hear this.

Halloween was a neat day to start chemo — a lot of nurses and patients were dressed up. This made the day less anxious for me.

I started chemo at 9 a.m. with the medication I was most nervous about. Some people have an allergic reaction to this particular med. and I was one of those people. I had a mild reaction — throat swelling and a rash — but nurses were right on it. They slowed down the meds and I was at the suite until 6:45 p.m. that day.

They started the next round three weeks later with pre-meds so it wouldn’t happen again… but it didn’t so that was great.

Rewind to “Remembrance Day.” I had a fever and the center was closed, so my mom and I went to the ER and I was admitted with a very low neutrophil count and started a bone marrow stimulant.

I guess the chemo worked really well. I was discharged a couple of days later. After my second round of chemo, I had a port put in and that was not a fun experience, but I’m glad that it was in.

Over the coming months I had four more rounds and finished R-CHOP in February 2013. I started maintenance chemo in May 2013. This chemo was to keep the aggressive at bay and target the indolent lymphoma. I finished the maintenance chemo January 21, 2015.

I was officially on a watch and wait.

The journey continues… the indolent has flared up again and I am currently on another targeted chemo and for more details, I’ve been posting blog entries on www.mycurveintheroad.wordpress.com.

I wanted to share my story because as a young person diagnosed with cancer, especially lymphoma, I was misdiagnosed.  It took a while to come to the official diagnosis, and I want everyone to be their own advocate.

If something is wrong, keep fighting for it until you’ve figured out what is wrong.

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Thinkstock photo by mheim3011