Hello everyone,
I wanted to share my story in hopes that I might help someone else who may have to go through the same thing.
I was diagnosed stage IV in April 2018 with very rare Bile Duct Cancer at 47 years old . This was based on information from an ultrasound, biopsy (tissue and liquid), MRI and CT scan. This was my first experience with cancer and I was terrified, confused and lost as to how to proceed. I picked an oncologist off the internet based on his location relative to my work / home and went from there. He wanted to start me on chemo ASAP and I was on board to get something going that was going to fight the cancer. I had a power port installed and started Cisplatin + Gemzar within a couple of weeks.
Around that same time, I made an appointment to see a doctor at MD Anderson in The Woodlands, Texas. During that appointment, she agreed with the initial diagnosis but also suggested I go ahead and get a mammogram and colonoscopy to rule those out as primary sites.
When I went back to my local oncologist I told him about the visit to MD Anderson and their recommendations. He rolled his eyes a bit and said that I should have gone to the main MD Anderson in Houston as it was likely that the doctor I saw in their satellite office was just two years out of school. When I told him about her recommendation to get a colonoscopy he stated that he was confident in his diagnosis of Bile Duct Cancer and it would be overkill but he did give me a referral to a GI doctor.
I had an initial consultation with the GI doc but it was going to be several weeks (due to his schedule and my chemo schedule) before he could get me in to do the colonoscopy.
In the meantime, I was struggling with the Cisplatin + Gemzar chemo as it was making me extremely fatigued, nauseous and I was running daily fevers (highest was 103.5). The doctor wrote the fevers off as "tumor fevers" after an ER visit and blood tests that didn't show any infections. After the 3rd cycle I had a CT scan done that didn't show any growth or shrinkage of the tumors but possible necrosis in center of tumors. Doctor ordered a PET scan saying that it would "clear the waters" as to the progress of the treatments.
I had the PET scan and when I went to the doctor for the results he said "the treatment isn't working" (liver was lit up like a Christmas tree) and there was a hot spot in my colon. He changed my chemo to FOLFOX + Erbitux and said he felt confident that the treatment would work better but never bothered to mention that it was his misdiagnosis that had me on the wrong treatment for three months and that was why it wasn't working. This despite my disclosure of a family history of colon cancer in my initial new patient forms and the original biopsy indicating that the liver tumors were likely from either colon or lung cancer. He then recommended that I go ahead and set up an appointment with a home health service that he suggested before my brain "became foggy from pain meds" even though I had not reported any pain to him. He said this was the step before hospice.
At that point I had enough of him and his mismanagement of my treatment. I set up an appointment in a new oncologist and went to see him. He looked over my case file and decided to keep me on FOLFOX but switch out Vectibix for the Erbitux (I was glad for that as I had a reaction to the first dose of Erbitux and I wasn't looking forward to more of that). I accepted him as my new oncologist and he called the GI doctor that was going to do my colonoscopy and asked to move up the procedure. Around this time I also got a call from MD Anderson stating that they had done their own biopsy and felt that the cancer definitely started somewhere in the GI tract.
I finally got the colonoscopy and it did verify that I did have a tumor in my colon and my diagnosis was changed to stage IV CRC with mets to the liver.
The tumor in my colon never showed up in the two CT scans that I had previously done. That might be a bit of an excuse that my first doctor could use for his misdiagnosis but a quick google search will show you that colon tumors are notorious for not showing up in CT scans. Past that, it was his dismissive attitude towards the opinion of the MD Anderson doctor and her recommendation for a colonoscopy as well as his push for me to start home care (felt like he was giving up on me) that made me decide that he was not the doctor for me.
I like my new oncologist and the treatments are working well for me. My CEA has dropped from 2215 to 84 in just five chemo treatments. The last CT scan showed "significant" decrease in liver tumors with the largest three showing almost 50% shrinkage. I am still not eligible for any other treatments other than chemo (tumors still too large) but my new doctor knows I want him to consider any and all treatments that might become available later.
Please be an advocate for your own health and listen to your gut if it's telling you that something isn't right. Look into all feasible avenues for your diagnosis and treatment. To doctors you are just another patient but this is your life and you have to be the your strongest supporter.