Hello everyone. I’m glad I found this site. I’ve been floating around the “cancer support” world feeling like no one really understands what I’m going through, so I’m glad to have found others who do understand. I write a blog to keep my friends and family up to date on what is going on, since the constant emails and texts got to be overwhelming, so please forgive me as I copy and paste my first entry from my blog here to give you my story:
Let me start at the beginning. Or what I think is the beginning. It’s hard to tell. A few years ago, about a year after my daughter was born, I started getting migraines. I’d had migraines before, back in the early 2000s, just before I was diagnosed with hypothyroidism, so I thought these were because my thyroid meds were still off after pregnancy. The doctor gave me Imitrex to help as I got them, and things were fine. I rarely got them. Maybe once every 2-3 months. Then about a year later, they started increasing in frequency, and pretty soon, by early 2011, I was getting 2-3 a week. Unacceptable. Clearly. I went back to my doc and she suggested an MRI, just to make sure. I got the MRI and went on my merry way, not thinking anything, but then I got a call from my doc. There was a lesion on my brain, very small, but I needed to follow up. I scheduled an appointment with a neurologist who started the various (expensive) tests to try to figure out the cause. The lesion presented like MS, but I had no symptoms of MS, so it didn’t add up. So blood test after blood test, scan after scan I went, and nothing. She put me on Topomax to curb the migraines, and although I lost 20 lbs. (side effect from the drug) and my family kept telling me to eat because I looked sick, I was finally feeling better. Around this time I also started with a new endocrinologist (who I credit for straightening me out more than anyone), and she started asking questions trying to discover why my meds would still be off, which they were. She finally asked if I had digestion issues. I said no. She said, “Well, I’m going to throw in a test for Celiac disease anyway. It might be preventing proper absorption of your meds.” So she did. And what do you know? Positive for Celiac disease. I called the best gastroenterologist in the area specializing in the disease, yada yada yada, positive biopsy for celiac and it’s confirmed. I’m officially gluten free. That was October of 2011. My next MRI showed the lesion was gone. Hurrah! By February the migraines had gone away and I was off the Topomax (and almost instantly gained back most of the lost weight). I finally felt healthy.
In March of 2012, I noticed enlarged lymph nodes in my right groin. Knowing this could be nothing – a minor infection, irritation, whatever, – I took note but figured I’d ask my gyn when I went for my annual in May if they were still there. In May they were, so I asked, and she said yup, go get them checked out. She ordered an endometrial biopsy and ultrasound on her side, both of which came back normal except for a rupturing cyst in my right ovary, which was thought to be nothing of importance. I went to my primary care and she suggested a general surgeon to do a biopsy. I had that done in June.
On Thursday, June 21, 2012, I got the phone call that would change my life. My biopsy came back positive for cancer. Now here’s the thing. I knew it would at that point. Lymph nodes don’t stay enlarged for 3 months for no reason. But what he told me would rock me to the core. Metastatic carcinoma. Metastatic. What? I thought he would say lymphoma. I still didn’t process this was not possibly lymphoma even days later. Metastatic carcinoma, but they can’t tell the origin. Possibly gyn or bladder. What? But I’ve had a year of nothing but doctors and tests. Do I need a recommendation for an oncologist? What? Oh, no. There is only one place to go. Fox Chase. I called and made my first appointment with Fox Chase Cancer Center for the next week, and thus began the ride.
Here’s the summary. I’ve been officially diagnosed with cancer of an unknown primary. At Fox Chase, I’ve seen a gastroenterology general oncologist (now my main doc), GI surgical oncologist, urological oncologist, gynecological oncologist, and more nurses, techs, and administrative staff than I can count (they are FABULOUS by the way. Highly recommend them!). I’ve been poked, prodded, had an ovary removed, a D&C, a flex sigmoidoscopy, cystoscopy, upper endoscopy, CT scan, PET scan, and had lots and lots and lots of blood taken. Oh, and a port insertion. Since the end of June. It’s now August 11th. Just sayin. I hurt. All of those tests produced nothing. No source. The cancer is in my lymphatic system, clearly, and the blood stream, but there is no tumor present anywhere in my body. This does not mean hop up and down, jump for joy. This means oh crap, how do we treat this? So my doctor, Dr. Dotan, presented my case to various medical boards and this is what she said. The cancer seems to have broken up from wherever the original location was and is now floating around my body. So there is no surgery and there is no radiation. Because the cancer cells aren’t taking a specific shape of any one type of cancer it’s hard to tell what kind of cancer it is. The pathology says it’s most likely upper GI – pancreas, stomach, esophogus. Aside from the pancreas, which feels fine but of course has not been biopsied, everything else looks normal and has no cancer in it. My blood work is all normal. No cancer markers. Nothing. But the pathology reports still say GI. So we’re going with an aggressive chemotherapy plan. Three different drugs, every three weeks, for 12 weeks. To start, it was Cisplatin, Docetaxel, and 5-FU (fluorouricil), but the side effects of Cisplatin had me out for 2 weeks out of three for the first three treatments, so that’s been changed to Carboplatin. I go in on Monday for various antinausea drugs and the docetaxel and carboplatin infusions. Then they hook me up to a pump of the (appropriately named) 5-FU and that comes home with me and slowly drips over the next 5 days. That’s fun. I go back on Friday and they take out the pump. On Saturday I go back in for a shot of Neulasta, which increases my white blood cell count. I am then home for 2 weeks before I go back and do it all again.
My first CT scan since starting chemo was in October and news came back better than I expected! I will put the clinical findings here, since they sound so AWESOME.
“Previously prominent retroperitoneal lymph nodes have diminished in size and now appear normal. Previously enlarged mesenteric lymph nodes have also diminished in size…. Haziness of the mesenteric root has also improved and pelvic ascites has almost completely resolved. Right inguinal lymph nodes have decreased in size. The uterus and left ovary have diminished in size, likely physiologic.”
Woo-freaking-hoooooooooo!!!!!! I was hoping things were stable, but to be told they had reduced in size and some have gone back to normal – beyond my imagination!!! There are a couple of notes on the scan – specifically what they call a ground glass opacity in the lower lobe of my right lung – which need to be noted, but that was even stable since the last time and the report says it could be inflammatory, so it just needs to be noted and watched. Overall, fantastic news that even my doc was excited about! She even double checked with the radiologist because she wanted to be sure she was actually seeing what she thought she was seeing. hahahahahaha! Totally worth the hour and a half wait for that news, let me tell you!
The results of the molecular profiling (genetic testing) came back inconclusive. What the report did show were treatments that my type of cancer would most likely respond to, and the top drugs are drugs I’m currently on, so that just reiterated the treatment is the right one. You know, aside from the fact that it’s working and all. The report also gave some other drugs that are likely to have benefit once this treatment plan has run its course, which they all do. So down the line, as my doc said, we have more options she wouldn’t have necessarily thought of.
I just read about CancerTYPE ID through this site and I’ve printed out the form to give to my doc to get that testing done. I’m hoping for more conclusive results.
The statistics for CUP are just something I’m not ready to fully accept. My cancer is not in my organs. It is in my lymphatic system and, at this point, appears only to be in the inguinal nodes. And they are shrinking. How this is an upper GI cancer I don’t know. I can only imagine the Celiac disease has something to do with it. Nothing really makes sense.
So that’s my story. I hope to get more information through this group, this site, and raise awareness around so that we can get more attention brought to our cause, and beating cancer for good.