Hi, my name is Lisa. I'm 38, and I've been battling cancer for over two years. I need a little bit of help raising some money for travel expenses to get a 2nd and 3rd opinion on the treatment of my disease. My case is a bit complicated...
My story started in September of 2015 when my mother was diagnosed with Stage 3B rectal cancer. I was 35 years old. It was literally weeks after that when I started feeling something different happening in my body and I chalked it up to being scared because Mom was just diagnosed. My symptoms were just fatigue and bloating at first. October 2015 I went to the family doctor and she told me to just take some Gas-X. A few weeks later I noticed lower right abdominal pain and saw another doctor in that practice. He ended up sending me for an ultrasound, which revealed “something” on or near my right ovary, which could not be seen. It measured 17 cm. I was referred to the gynecologist who sent me for an MRI and set up a tentative surgery date. Once he got the results he decided to send me to a gynecological oncologist instead, “I’m not saying that it’s cancer. It probably isn’t at your age, but I want you to be in the right hands in case it is.”
So I went to Hershey for a consultation (this was December) and we scheduled a “probably laparoscopic” surgery for January. I would go home the same day or next! Ultimately, I had a laparotomy in which my right ovary, uterus, cervix, and both fallopian tubes were removed. Sounds like Ovarian Cancer, right? Here’s the catch: pathology stated the cancer was metastatic and came from the GI tract.
As I healed from that surgery, I was sent for various tests to try and find my primary tumor. I had an endoscopy, a colonoscopy, a small bowel x-ray, and a PET scan. None of them found ANY tumors. So the doctor at Hershey said we’ll just treat it as ovarian then. WHAT?! I had been a member for Colontown and Blue Hope Nation online and had also been doing a lot of research of my own for a couple of months at that time, and I knew this didn’t seem right.
At this point it was March 2016 and I was healed and ready to start chemo. I got a second opinion from a gyne onc at UPMC McGee, and he said it was absolutely a GI cancer, and that I should have my other ovary and appendix out as these were likely next targets of the cancer. I don’t know why I didn’t see a GI oncologist at this point. I should have. Hindsight is always 20/20… So we were assuming I had an unknown primary that was likely in the colon but was taken care of by my immune system AFTER it metastasized to my ovary. Mom had CRC so it made the most sense. I did 12 FOLFox treatments and had a clean CT scan in August. Hooray! Remission! My bloodwork in November looked fine, so I went ahead and got the other ovary and appendix removed at UPMC in December 2016. Again, this was to be laparoscopic but once he saw it, I ended up with a laparotomy again. The remaining ovary and appendix both had tumors, as well as the omentum.
As soon as I healed I started on another chemo, FOLFiri. It was at this point that I decided to see a GI oncologist after many questions asked and answered in my online support groups. Dr. Bartlett’s tumor board at UPMC reviewed my case and concluded that my primary was actually (most likely) my appendix. WHAT?! Why didn’t that show up on any of my tests? Well, the appendix was lit up on the PET scan but they assumed it was because it was still full of barium from my small bowel x-ray. I don’t know what else could have been done at that time if anyone bothered to look into it, but maybe I’d have been a year ahead! So Dr. Bartlett recommended that I finish 6 Folfiri treatments, have several weeks off, and then come in for a surgery called HIPEC (look it up if you're curious, very interesting stuff). He also mentioned an immunotherapy trial, which I graciously signed up for. GO SCIENCE!
May 1, 2017 was my first of 23 days at UPMC Shadyside. I had many complications from the surgery which took over 12 hours, and even after being discharged I was admitted four more times with small bowel obstructions. I'm still healing, and working towards eating more and building my diet and weight back up while receiving TPN (nutrition by vein) which I get for 12 hours a day through my PICC line. I ended up losing over 60 lbs in all, but luckily I have an awesome group of friends who were able to collectively donate a whole wardrobe in my new size!
At this point I have finished up my chemo treatments as well as the three week-long immunotherapy treatments. I had a CT scan at the end of October that was clear - yay, remission!... But my latest scans show that the cancer has metastasized to my spine, pelvis, hip, and a rib. The oncologist in Pittsburgh explained that my treatment options are very limited due to the way my disease presents and the fact that I'm on TPN. I felt like giving up after speaking with him, like my end may be closer than I thought...
After talking with those nearest and dearest to me, I've decided to seek a second and third opinion. I have been missing a lot of work lately because I haven't been feeling well - the pain makes it unbearable to sit up for hours at a time. Now I just don't have the "extra" money to pay for travel expenses. Some of the places I'm looking into are in New York, Texas, Massachusetts, and Chicago, among others. I will need to pay for transportation for myself and whoever goes with me, meals, cab or Uber rides, hotel, etc.
If you are able to help out at all, please do. No amount is too small, and I will be grateful to each and every one of you equally. I see this as my only shot a long-term survival, and I'm fighting the best I can, doing everything I can. I am not ready to give up yet! Thank you in advance for your help!