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Julie is an ovarian cancer survivor who was diagnosed in January 2013. She has worn both sets of shoes, as she was also a caregiver of her husband who passed away from prostate cancer. Julie was a teacher and principal in her career and retired in 2015. Since then, she has been active with walking, biking and water aerobics. Julie also likes to be creative with cooking, beach glassing crafts and writing poems. She has remarried and now her husband supports her with his healing love. Julie’s combined family consists of five adult children and spouses along with 10 grandchildren. She feels blessed beyond measure to be able to spend time with her family.
An ovarian cancer survivor shares her experience receiving a radiation treatment on her lymph nodes.
I am anxious today. For what, I am not sure. For me, writing things down helps with the anxiousness so I thought I would share some information about one of my recent treatments. I was diagnosed in 2013. Three surgeries and chemotherapies later, this past October, my scan showed more lymph nodes inflamed with my ovarian cancer.
I am truly blessed to have a gifted oncologist and I also have one of the best hospitals within an hour of my home, so the Cleveland Clinic was my destination as I searched for my next plan of attack. Stereotactic Body Radiation Therapy (SBRT) was the ticket. I felt such confidence with my physician and his team as we tackled the two areas of inflamed lymph nodes. The unknown is so scary. So, I thought in this article I would address in layman’s terms and my own perspective of what I went through to get this therapy. Note, the physicians who read this may correct my words. This is what I feel I went through.
The first thing that had to happen was a clear PET scan to pinpoint the exact location of the lymph nodes. They happened to be underneath my aorta and next to my esophagus, which are not good places to be. Then, I was mapped. Mapping is the gathering of information via computers to see where these SBRT beams would be directed. With SBRT, a beam is pointed directly to, in my case, the lymph node, and the radiation penetrates that lymph node only. It did not do a large area.
Once they have the area pinpointed, there must be a constant and same beam placement. So, to do this, I lay on an air bed that was blown up and fit to my body. For a better understanding, it was like I had my personal fitted bean bag bed. The bed was formed to my body so that every time I came for a treatment, my personal bed was pulled out and I lay in it the same way each treatment. Lots of Sharpie markers were used to draw marks on my body to line everything up.
The next measurement, which also had to be a constant, was how my body would stay still and lie the same during the treatment. To do this, a contraption that was like a snorkel was placed in my mouth with my nose closed with plugs. The snorkel allowed free breathing just like I was underwater. The first thing that they measured was how much air it took to fill my lungs. We assessed this several times to get the average amount of air I was breathing in to fill my chest. Then I was told to hold my breath. The air from the snorkel tube was stopped so I could do this. What this part of the mapping did was create a constant of what my lungs would hold, and my body would stay still for the eventual treatment. I practiced this several times. The procedure has you hold your breath for 20 seconds, so it is extremely important that you do not move your body during this time. Once this was calculated, I was ready to be “mapped.”
Again, the Sharpies came out and they marked the areas where the beam would be pinpointing the lymph nodes. Then came the ink! I am not a person who would choose to get a tattoo, but I have them now. The measurements were marked with an ink color to be used with the SBRT machine. They were small dots on my skin – no fun tattoos! I am sure that I have left out some parts of this procedure, but I hope you have the gist of what I went through to get mapped.
Now for the treatment: I was scheduled for three visits, a Tuesday, Thursday and Friday of one week in November. When I came for my appointment, the radiation staff called me back to the radiation room. I was told to not wear jewelry and to come in comfortable clothes. I wore a gown on my top. They pulled out my personal body form and I lay down in it as they lined me up on the sides with my tattoos. The machine was also lined up with tattoos on my chest and belly. They attached the snorkel, and we practiced a few times breathing into the apparatus. Then it was go time. I would take a deep breath and hold for 20 seconds. The staff counted down the time and that helped. I remained very still. During the 20 seconds, the SBRT machine and radiation basically zapped the specific areas. I had to do this about 10 times, and I was done. I felt nothing during the procedure. The time in the room was less than 45 minutes. I went home and that was it. I was done on that Friday.
Now for the wait. Radiation takes some time to work, so I was scheduled for a physician visit six weeks after and then another PET scan 12 weeks after. I really did not feel any side effects from this procedure. My results were excellent as the lymph nodes that received the radiation were obliterated, my word. However, in my case, a few more lymph nodes in different areas of my body decided to make an appearance. So, in March, I was back up in Cleveland again for the new nodes. They did the same procedure on one lymph node and decided to do a larger area on the other group of nodes. For the larger group, I received area radiation. I did experience radiation burns that were very extensive. Since the cancer was making a comeback, more chemotherapy was ordered to complete this treatment. I just finished round three last week of six total.
This is my own personal experience, and because ovarian cancer is different with everyone, I wanted to share my story. I remain positive as for me, typically, I finish with chemo and then my numbers are pretty great for several years. My oncologist and I are treating this as a chronic disease. We take care of the problems as they come and hopefully have a bit of a reprieve. My numbers are going down so something is working.
I apologize for any inaccuracies or omissions. I am a survivor. You will hear from me again.
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