After you are diagnosed with cancer, what happens next? Well, I can tell you that a whirlwind of appointments begins. You almost don’t even have time to register that you do in fact have cancer. And on top of trying to figure out what your new journey will entail, you are still busy trying to keep up with all of your normal daily activities. As much as I wanted to just hide under a rock somewhere, that wasn’t an option. You realize really quick that you have to gear up for a fight. The information below is what I typed up in May 2016 to basically update everyone with the latest details that we had at that time. It’s not very exciting to read, but if you are curious about what might happen after you find out you have cancer, please continue reading. Remember, this is just my story, I know that it’s different for everyone. If you would like to start reading at the beginning of my cancer journey, click here.
Written May 2016:
Well, we have been busy, busy! So many phone calls, tests and appointments. I have to give credit to my sweet husband. I would be lost without him. He quickly not only became my emotional support system, but my medical advocate as well. He took charge of contacting insurance for approvals and researching for 2nd opinions as well as keeping our household running. He is amazing!
Since I didn’t update here while things were happening, I’ll give a brief rundown on what happened and where we are today:
April 12th-PET/CT scan
Great news! The scans show that the cancer has not spread! This is such a relief!
April 14th-EUS (endoscopic ultrasound) at UCI Medical Center. (I was currently being treated through my network hospital which is Saddleback Memorial, but I was referred to UCI for this procedure.)
The gastroenterologist who performs the ultrasound says that the tumor is small, but it is touching the external and internal sphincters and appears to be in one local lymph node. He stages me a T3, N1, M0.
April 15th-Meet with a chemo oncologist to discuss chemotherapy. I will have a port catheter (a port, just google it for a description) put in my chest so that they can give me chemo through an IV that will be connected to a fanny pack that I will wear 24/7 for 5-1/2 weeks. Radiation will also be done at the same time. He says that side effects of the chemo should be fairly mild. He is also the first person throughout this process so far who is very positive and encouraging. I love him already! He tells me that I will beat this and have a future with my family. I so needed to hear this!
April 18th- (morning) Meet with the surgeon again and she goes over the results of the EUS and the PET/CT scan. We also discuss the surgery to put the port in. And we talk about 2nd opinions again. We had been doing some research online and found that there are doctors who specialize in sphincter saving surgeries. It looks like we will be trying to get approval for a 2nd opinion at the Mayo Clinic in Scottsdale, AZ first, or then possibly at Memorial Sloan Kettering in New York. Chad starts the fight with our medical group and insurance over this. He is relentless and never gives up. Again-I don’t know what I would do without him.
(afternoon) Meet with the radiation oncologist to discuss radiation. She’s very nice and we like her a lot. She takes a long time going over everything with us. I’m not going to lie, I leave that appointment pretty sad and depressed. I’ll spare you the gory details, but just know that the side effects and the possible long term effects of radiation sound horrific.
April 20th-Back to the radiation oncologist’s office to do the initial scans and tattoos (yes, tattoos, not a butterfly or anything fancy, just 3 tiny dots) so they can make a plan for radiation. I am tentatively set to start treatment on May 2nd.
April 21st-I go in for genetic counseling. Since I am so young (as I am repeatedly reminded of every time someone finds out I have rectal cancer) they want to do genetic testing on me. Although we don’t have a history of colorectal cancer in my family, they still want to test for it. I guess sometimes it can randomly appear. And we have to know for the sake of our children. The good news is, that if our girls get colonoscopies at a younger age, anything that may come up will be caught very early and hopefully never amount to anything major.
April 28th-(morning) I have the surgery to put the port in. This will be good because now they can give me medicines or draw my blood through the port instead of poking my arm every time. It’s an outpatient surgery, but as we have quickly discovered, I don’t handle anesthesia very well. Even when they give me anti-nausea meds before surgery. Good times! Anyway, the pain from the port isn’t horrible, I’m just a bit of a zombie, wiped out.
(afternoon) We go to UCI Medical Center to meet with Dr. Alessio Pigazzi (rectal surgeon) for a 2nd opinion. I am still pretty out of it from my port surgery that morning so I sleep in the car on the drive there, I sleep in the waiting room and I sleep on the table in the room while waiting for the doctor to come in. Now, remember I am supposed to start chemo/radiation in 4 days. We didn’t really think much would come from this meeting with Dr. Pigazzi. We were planning on attempting treatment in another state if necessary to try alternative treatments to avoid getting a permanent colostomy. But Dr. Pigazzi informs us that I would be a good candidate for a clinical trial that they are currently conducting for rectal cancer treatment. And the trial is actually sponsored by Memorial Sloan Kettering and being held at a few hospitals around the nation. Well, that snaps me out of my post-surgery fog pretty quickly! He offers us this glimmer of hope that we had been praying for! There is a lot of information to cover and we’re not sure if our insurance will approve it, but we tell him “sign us up!”
So basically how this clinical trial works is that you are given 5-1/2 weeks of chemo/radiation and also 12 weeks of chemo only. The trial randomly chooses which treatment you are given first, but you will still receive both. Then they reassess you to see how your tumor responds. If there is no trace of the tumor then they will not perform surgery. You are then closely monitored every 3 months for the next 3-5 years. They have been very successful in treating rectal cancer this way, in fact this is phase 2 of this trial. We figure it’s worth a shot and are optimistic.
I have to say, we are immediately impressed with UCI too. With the facility and the people who work there. Everyone is very nice and helpful. Everything is modern and clean. Dr. Pigazzi definitely seems more knowledgeable in current and innovative practices. He spends a long time with us, giving us a lot of information and answering all of our questions. He says if it were him, he would do this trial. We feel very comfortable being treated at UCI and grateful that we did go there for a 2nd opinion. The next day we call the rectal surgeon, the chemo oncologist and the radiation oncologist from Saddleback Memorial and tell them that we are going to put a hold on starting treatment because of the clinical trial. All of them are very understanding of our decision and tell us we are doing the right thing. Now we just need to work with our insurance…