Whew! That title is a mouthful isn't it? I learned so much today at my appointment and am encouraged that we are finally getting closer to a treatment plan just a mere 17 days after I was told my diagnosis. The key word here is "closer" because there are still so many steps before I can start treatment.
This was my first visit with the radiologist and I was in very good spirits this morning even though I had way too little sleep last night. My husband, Billy, dropped me off at the facility and immediately told me he didn't like the place already because they didn't clean their front doors. I just love him for saying that because he made me laugh before I ever stepped inside. My sister, Amy, went to this appointment with me while Billy had to go to class. Although I know he hated to miss, he has gone back to college and is in the last couple weeks of this semester.
Amy and I walked in and went through what we thought were the correct doors to the right. The lobby was full and there was a big pink Christmas tree covered in breast cancer pink ribbons and pinks decorative balls. We quickly found we were in the wrong office and entered the office across the hall. This lobby was mostly empty but had a little tree covered in medicine bottles, snowflakes cut out of patient masks, radiation symbols, cards received from patients. We were later told that the offices were having a contest on who could decorate the best Christmas tree themed around their particular business and patients. The tree representing me was a little sad, as was the table full of half finished puzzles. However, this was offset by the non-traditional pop-rock lobby music playing from a pitiful looking boom box on the corner table and the front desk receptionist who started bustin' a move to the rhythm. This was just the first moment of comical relief during our visit.
After a long interview with the nurse answering questions like, "Do your eyes feel dry or hurt?", "Do you feel like you have arthritis anywhere?", we met Dr Smith. The good Dr rolled his chair right up until his toes met mine and leaned forward to give me his full attention. He had me walk through my symptoms and what brought me to this place; he asked questions and listened intently. He then explained my treatment plan.
Although they were able to remove some of the cancer in surgery 3 weeks ago, they could not remove it all because of where it is located. So far, all doctors agree that this cancer cannot be operated on without really damaging other organs/parts of the body. The Dr explained that my treatment will be unique because of the rare type of cancer, but also because of the difficult location. He suggests we begin with External Beam Radiation (EBR) hitting a broad area 360 degrees around the pelvis. There is concern that there could be very small cancer cells spread in other areas that need treated although they were too small to see in the PET Scan. If we were to use a Proton therapy, Tomo therapy or even IMRT we would limit where the radiation treats the cancer and for my case this is not the desired method. I will have this External Beam Radiation (EBR) locally five days per week for up to 5-6 weeks. This treatment is quick and should only take 20 minutes of my time. They will add weekly appointments with Dr Smith and his nurse to monitor my side effects and treatment effectiveness once per week. I will have chemo with this, but will meet with Dr Shafer to discuss this next week. Once this EBR treatment ends I will immediately begin a secondary radiation treatment called Interstitial Brachytherapy, which was explained to me as follows. I will be admitted to the hospital and put to sleep under anesthesia. The radiologist will insert about 20 needles directly into the remaining cancer. Small tubes pumping radiation will be connected to these needles so they can release the radiation into the cancer and some surrounding tissue. Once this is over they'll remove the needles, I'll wake up and get to go home. They will do this procedure anywhere from 1 -3 times. This is the next best treatment to surgery based on what I've read tonight on this site an others. http://www.estro-education.org/publications/Documents/ID%20%2017%20%2030072002%20Interstitial%20Gyn%20Print_proc.pdf This treatment cannot be done locally where I live.
My exam today showed I am mostly healed from my surgery and am ready to start therapy as soon as we can get through these next appointments to ensure we are on the right track.
Upcoming appointments are:
Next week I will go to the OU Cancer Institute to meet with a Gyn Oncologist. This is to get a second opinion on treatment plan and to reaffirm that surgery is not the best option right now.
While at OU I will also meet with a Gyn Radiology Oncologist who specializes in Interstitial Brachytherapy. This is to get a second opinion on radiation treatment plans, to gain guidance on the Brachytherapy and to determine if there is a way to plant "seeds" into the cancer. These "seeds" show up in an x-ray prior to the External Beam Radiation being done each day so that the Dr Smith's team knows exactly where the cancer is each day to treat with the most precise angles. We will have a conference call with Dr Smith while there and if he or I are not comfortable with this doctor and her procedures I will be sent to MD Anderson for this Brachytherapy treatment.
Thursday 12/09 I will meet with Dr Shafer locally. Dr Shafer is a Medical Oncologist that will provide my chemotherapy treatment plan.
Friday 12/13 I have a TBD appointment to get another CAT scan necessary before I begin EBR locally.
Dr Smith showed us my PET scan and CAT scan images, which were amazing to Amy and I. How they know what they are looking at is impressive. With this I learned one extra thing about myself that left us laughing as we walked back out those dirty front doors.
I have BROWN FAT! I said, "and what does that mean?". To my surprise the doctor said it means I need to talk to my mama because I am not 100% Caucasian after all! He went to far when he asked if I wondered why I don't look like my sister. Those of you that know Amy and I know there's no wondering if we are sisters! So perhaps you know what this means, but I didn't. Apparently brown fat is what we non-medical folk call baby fat. He said all babies are born with an extra layer of brown fat to keep them warm and then they lose it as they grow older. Well, the very top of my shoulders and the back of my neck still carry some baby fat and it glows on a PET Scan bright as the North Star. Its not my fault I carry a few extra pounds...I've just never lost all my baby fat. That's my new excuse and I'm sticking to it!