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Why I Traveled for Post Treatment Cervical Cancer Care

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In September 2012 I was 30 weeks pregnant with my daughter when I received a devastating diagnosis. I went in because I was having some bleeding and the OBGNY found a polyp. After further testing I got the call I had large-cell neuroendocrine carcinoma of the cervix. Luckily, it was found early, and I was able to deliver my daughter safely at 32 weeks via c-section. I also had a radical hysterectomy and four rounds of chemo. Since the cancer was contained to my cervix, I was able to keep my ovaries and I did not have to endure radiation.

My first two years of follow-up care took place at the same clinic that had discovered my cancer. I felt so comfortable with my oncologist and the staff that helped treat me. It was also nice to be at the same clinic/hospital that had given me such wonderful care while I was pregnant, as my daughter was cared for in the NICU.

Unfortunately, my oncologist left. I chose another whom I did not feel comfortable with. To say the least he was  a little too brass for my taste. So, I made the decision to switch clinics. Since I live in a rural area, traveling is expected. The first clinic was 40 minutes from my home. The second clinic I went to was 60 minutes. Again, I was blessed to find an oncologist who I felt comfortable with.

So, the follow-up scans commenced as usual, until that oncologist left as well. I was feeling like I needed to stay put since I had already made one switch.  I was marked as an “easy case” so I was given to the interim oncologist for my next six-month follow-up.

My six-month follow-up did not go as planned. I was told my cancer was back and with vengeance. It had started in my left ovary and most likely already spread to my hip. The oncologist was already telling me to “Make plans for your daughter.” I was stunned.

After a cancer diagnosis that fear of recurrence is always there. But somewhere inside there is a little voice telling you it won’t return. Since the tumor they found was in a tricky spot, they were not sure if surgery was even possible. If surgery could be done it would be lengthy, and they may only get just enough for a biopsy. After a potential surgery, I was told I would begin six rounds of chemo followed by two different types of radiation. Definitely, a more extensive regimen than I had previously.

There were some things that were not adding up. The most obvious was my lab work. Nothing in my lab work indicated I had a tumor in my ovary that was spreading to my hip. I felt fine and I had actually been exercising regularly
before my scan. Since I was confused, I scheduled an appointment with my primary physician to follow up on the news I was given.

After two weeks of scans, anxiety and planning for a possible surgery, I was given the news that in fact I did not have cancer for a second time. Instead, I was ovulating during my initial scan and I had arthritis in my hip. Hence the
“lighting up” on the scan. Since I am post-hysterectomy, my ovaries are not located where they once were. They are now pinned back. I guess that led to some confusion.

Of course I was relieved I did not have cancer again. But I was also very upset this could not have been resolved sooner, or maybe not taken place at all.

In the two weeks in-between my initial scan and the confirmation I did not have cancer, my primary physician had a luncheon with some oncologists from a cancer clinic that is located about four-and-a-half hours from my home. With my
permission she presented them with my case. After much agonizing on my part and convincing on everyone else’s part, I made the trip.

Even though I had the news I was still in remission, I was a little leery, to say the least. If an oncologist and radiologist can mistake ovaries and arthritis for cancer, how was I supposed to trust them? So, it still made sense to follow up and make double sure I was still in the clear.

Honestly, getting that second opinion was one of the best decisions I have ever made. I got the reassurance I was in fact in remission and I received wonderful care. I was at a place that specialized in cancer and really has an understanding about what cancer patients go through. I enjoyed it so much I decided to continue my follow-up care there.

I am happy to report I reached my five-year cancer-free mark in December 2017.

I get a lot of questions as to why I would drive four-and-a-half hours every six months and be away from my daughter for two days for testing I can have done 40 minutes from my home. My first response is safety. I feel safe there. I know they will take care not only of my testing, but they’ll also make sure I am OK.

Just walking in the front doors makes my anxiety level go down. There are so many people who are more than happy to answer any questions and there is a lot of camaraderie between patients — which doesn’t always happen at other clinics. Talking with people who are going through something similar to you is such a relief. Just knowing that your thoughts and feelings are valid is a huge help.

My second response is my daughter. Yes, it is hard to leave her for those two days. Yes, she doesn’t fully understand why I have to go. But I know if I did have a recurrence, I am at the best place possible so I can continue to be with my daughter for the rest of my life.

Two or three days is a pretty small amount compared to a lifetime of missed memories.

My advice to anyone who is thinking of traveling for any type of treatment is to go for it. You are worth it. We all deserve the best care possible. Don’t let anyone tell you different. To them it may be “just a test” or “just a treatment,” but to you it means everything.

Being away from family and friends is rough. But coming home with the “all clear” makes it worth it.  Of course treatment is the first priority, but the second is feeling comfortable and having doctors whom you trust. If you can find a place that does it all, then travel as far as you have to.

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Getty Images photo via mastermilmar

Originally published: January 17, 2018
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