I was diagnosed with cancer in September of last year. I decided to record the timeline of my treatment progression, mostly so I can remember it. But I thought others might like to know what the treatment looks like in the US for someone who has good insurance and access to excellent health care providers within a reasonable distance. I feel lucky for those things. I also feel lucky that my prognosis is excellent.
July 21, 2020 — I visited my primary care physician (Lisa Baker) for my annual physical. Like so many things, this was delayed by a few months because of the pandemic.
August 26, 2020 — I had my annual mammogram at my local hospital.
September 2, 2020 — I received a call from my local hospital telling me that the radiologist saw something potentially concerning and would like me to do a follow-up mammogram.
September 8, 2020 — I had a follow-up mammogram on my left breast. Because the tumor was very close to my chest wall, it was challenging to get an image of it. I was able to look at the image and a spiky mass was clearly visible. The radiologist looked at the images while I was still in the room. He and the technicians performed an ultrasound while I was there. The radiologist recommended that I have a biopsy of the mass as soon as possible. His report after the ultrasound says that there is a greater than 95% chance of malignancy but I didn’t know that until about a week later.
September 10, 2020 — While I was out for a walk, my primary care physician called me to see how I was doing. I didn’t yet know the likelihood of this mass being cancer but I could tell from her tone that she thought it was likely to be. I didn’t think to ask her what the likelihood was because I was so surprised that she called.
September 17, 2020 — I met with a local surgeon (Dr. Casey) for an exam before the biopsy. He could not feel the mass.
September 23, 2020 — I had the biopsy procedure at my local hospital. I was under the impression that once the lidocaine was injected, I wouldn’t feel pain but it hurt quite a bit. After taking 3 samples, the doctor (Dr. Fontaine) placed a metal clip in the mass for future use in identifying its location. I had a chest x-ray to ensure that the clip was placed correctly since I had continued pain. The pain resolved a few hours later. I was able to drive myself to and from this procedure.
September 25, 2020 — Dr. Casey called to tell me that the biopsy was positive, that I had breast cancer.
September 28, 2020 — I met with Dr. Chastenet (a colleague of Dr. Casey) to talk about my treatment options. He told me that my tumor was ER and PR positive (good news for both) but that they didn’t yet know the HER2 status. He recommended that I have the tumor removed, either by modified radical mastectomy or breast conservation surgery (which is commonly known as “lumpectomy”). If I had breast conservation surgery (which is what I was leaning toward), they would recommend a course of radiation therapy. They wouldn’t know whether chemotherapy was indicated until later. The surgery could be performed locally at the hospital but they don’t have the equipment to do radiation therapy. So I would need to go to Dartmouth Hitchcock or Concord Hospital (or other places in the state–I didn’t really listen to the other options). I decided I wanted all of my treatment in the same place with the same team, so I opted for THe Breast Care Center at Concord Hospital. His office sent the referral.
October 16, 2020 — This was the hardest period of this experience. Just waiting from September 25 when I found out I had cancer until my first appointment with the surgical oncologist. I felt a bit lost knowing that I had cancer, that a tumor was actively growing inside me, but not yet having a clear plan of action. I met with my surgical oncologist (Dr. Gunsher) and she explained my options and I confirmed my decision to do the breast conservation surgery. She told me that my tumor was ER+, PR+, and HER2-. All of that was good news for a positive outcome. The first thing she wanted me to do was to go to the Imaging Center of Concord Hospital for an MRI to get a better image of the tumor and to see whether there was anything suspicious about the lymph nodes. In addition, she wanted me to talk to the radiation oncologist because if I decided not to do radiation, she would recommend that I have the mastectomy instead.
October 26, 2020 — I had the MRI at the Imaging Center. In the ten days since I had seen Dr. Gunsher, my insurance company had called to tell me about other options for getting the MRI. Concord Hospital was not the cheapest option but it also was not significantly more expensive. I chose to stay with Concord Hospital.
October 29, 2020 — The MRI showed a suspiciously enlarged lymph node so I immediately had an ultrasound during which the lymph node also looked suspicious. So I immediately had a biopsy of the node. It didn’t hurt at all.
November 3, 2020 — Because I had chosen breast conservation surgery, I had a consult with the radiation oncologist (Dr. Roberts) so that I would understand what radiation would entail. He told me that I would need to come to the hospital 5 days a week for 3-6 weeks and explained the consequences. He explained the risks of radiation and showed me the tiny dot tattoo that he has on the end of his thumb that matches the three dots that I would have tattooed on my body for the radiation treatment. I still wanted to do the breast conservation surgery.
November 3, 2020 — After talking with Dr. Roberts, I immediately met with Dr. Gunsher again to confirm the course of action. She told me that my lymph node was negative for cancer (good news!) and so she would order an oncotype test for my tumor. We scheduled surgery for November 13.
November 10, 2020 — I had my pre-operative exam.
November 13, 2020 — Surgery day (finally!). This was the only day I couldn’t drive myself to and from the appointment. The surgery was actually several procedures. First, Dr. Gunsher injected a radioactive liquid into my breast to help her later identify the sentinal lymph nodes. Next, Dr. Petricelli inserted a wire into my breast for guiding the lumpectomy. The report says: “Under direct sonographic guidance, a 20-gauge needle was advanced to the lesion and methylene blue injected. A 7 cm Kopans hook wire was fed through the needle and the needle removed leaving the wire left in place.” The radioactive liquid, plus the lidocaine for numbing, plus the methylene blue liquid were uncomfortable. Too much fluid, I think. They did a mammogram to ensure the wire was placed correctly. My breast felt better after that because I think they squished the liquid which helped to disperse it a bit. All of this was done while I was awake. After I was put under general anesthesia, Dr. Gunsher performed two surgeries: the lumpectomy and sentinel lymph node biopsy. She removed two lymph nodes. I was able to go home that same day.
November 19, 2020 — I had my post-operative appointment with Dr. Gunsher. I was very swollen and bruised but everything looked like it was healing well.
December 1, 2020 — I met with my medical oncologist (Dr. Kibirova) who would be taking over my care for the long term. By this time, I was quite uncomfortable because of the swelling in my breast. I had developed a blister because the skin was so stretched with the swelling. She suggested that I mention this to Dr. Gunsher since it looked like I had developed a seroma. In the meantime, she ordered some blood tests and a bone density scan and we talked about the options for my ongoing treatment. She also told me that my oncotype score indicated that I didn’t need to do chemotherapy. I was a little worried about that because it was a borderline score and because my tumor had been deemed to be of intermediate aggressiveness. (More about this later.)
December 1, 2020 — I was able to get an immediate appointment with Dr. Gunsher and she drained approximately 100 cc of fluid from the seroma. I made an appointment to see her again in about 2 weeks because she was fairly sure the seroma would need to be drained again.
December 7, 2020 — Dr. Kibirova’s office called to tell me that my blood tests showed that I was severely vitamin D deficient. They called in a high dose prescription of vitamin D that I was to take for 3 weeks followed by ongoing vitamin D supplements.
December 10, 2020 — I had the bone density scan which showed my bone density to be normal. It was important to get a baseline for my bone density because my ongoing treatment would include drugs that increase the risk of osteoporosis.
December 15, 2020 — I had a tele-medicine appointment with Dr. Kibirova who checked in about my seroma. She said that I could start radiation as soon as Dr. Gunsher and Dr. Roberts thought it was ok to do so. She prescribed my endocrine therapy (an aromatase inhibitor) to be started when I finished radiation. I will take that drug for 5-10 years.
December 18, 2020 — I had my seroma follow-up appointment with Dr. Gunsher. The seroma was filling up again but it wasn’t yet as bad as it had been previously. Because of the upcoming holiday, she opted to drain it again. This time, she drained approximately 50 cc of fluid. She wanted to see me again in 2 weeks.
December 30, 2020 — My seroma follow-up showed that the seroma was still in the process of resolving but there was no need to drain it. Dr. Gunsher gave the all-clear to begin radiation.
January 7, 2021 — I met with Dr. Roberts to plan my radiation treatment. He recommended 15 whole breast radiation treatments followed by 4 lumpectomy cavity boost treatments (which alleviated my concerns about my borderline oncotype score). This would be a total of 5005 cGY of radiation. I then received my 3 dot tattoos and did the breath hold planning.
January 14-February 3, 2021 — I drove to Concord each morning for the whole breast radiation treatment. I immediately had a reaction to the ointment they gave me to deal with the inevitable skin issues. So I had to switch to a thicker messier ointment and used aloe vera in addition. The technicians were great and each week they took x-rays to make sure everything continued to look all right. I met with Dr. Roberts and the oncology nurse once a week to be sure everything was ok.
February 4-February 9, 2021 — I drove to Concord four more times for the lumpectomy cavity radiation treatments. They were easier than the whole breast treatments because I didn’t have to do the breath hold. At the end, I met with Dr. Roberts who told me again about the side effects of the radiation treatment. My skin was already irritated and starting to peel. He told me that was likely to get worse. Sometime during this period, I started to feel quite fatigued which is a common side effect of the treatment. My breast also just hurt sometimes.
February 10, 2021 — I started my endocrine therapy.
February 18, 2021 — I had an appointment with Dr. Gunsher for my 3-month post-operative appointment. I talked about some night sweats as a result of my endocrine therapy as well as my continued fatigue. I still had the seroma (which was hard as a rock). I will resume mammograms in six months and will transfer all my care to the Imaging Center. I will also see Dr. Gunsher again in six months.
March 9, 2021 — I had a follow-up appointment with Dr. Kivirova. My night sweats have stopped but I’m still tired. She said that the endocrine therapy can cause fatigue but she would assume that this is the residual effects of the radiation therapy. I will see her again in three months.
I have had some weird nerve things with my breast and my arm has hurt because of the swelling but most of that seems to be gone now. I still have the hard as a rock seroma. And I’m still tired. But I feel incredibly lucky to be alive at a time when cancer treatment is very targeted to the particular tumor of the particular patient. And I feel incredibly lucky that I have the means to afford all of this care. I haven’t had to worry about whether I could afford the recommended treatment. I can’t imagine the added stress that those worries would add to a challenging time.
Image credit–this is a blurry image of my actual tumor. Taken September 8, 2020.
I am currently Professor of Digital Media at Plymouth State University in Plymouth, NH. I am also the current Coordinator of General Education at the University. I am interested in game studies, digital literacies, open pedagogies, and generally how technology impacts our culture.