At the end of May ’09, I had a yearly checkup and tests as a part of getting ready for grad school. The mammogram hurt, but was over quickly, and then two days later, I got a call back that the radiologist had seen something and wanted me to come in for more films. Even though my Mom has had breast cancer twice, I refused to get stressed and just fit the additional testing in around the rest of my schedule – which was crazy. I went early on the morning I was scheduled to leave town on a faculty field trip to scope sites for a grant project. I had additional films done, was seen by the radiologist, who also did a sonogram and then informed me that there was a definite abnormality, and that I needed to speak to my doctor about setting up a biopsy. I played phone tag for most of the field trip, finally setting up a consultation with the surgeon for the next Tuesday, with a biopsy to be scheduled after he had examined me.
I then spent the next two full days in orientation for my doctoral program, and then in class. The assignments were challenging, but I was excited to be in that atmosphere again. Meanwhile – I tried not to worry. I went on Tuesday for the consultation, and the surgeon decided to go ahead and do the biopsy right then. He numbed me up and was vacuuming the lumpy material out of my breast, and said “I can’t say for sure until the pathology report comes back, but this is perfectly normal…wait – that doesn’t look right.” I had intended to just go back to work, but I was bandaged up, couldn’t wear a bra and felt a little emotionally assaulted. I just went home alone. When I called on Thursday to find out the results of the biopsy, the scheduler told me that I had a benign tumor, but that I needed to have it removed as soon as possible – did I want to do it on Friday. I told her I would call her back and hung up, feeling confused and a little numb.
One of the women that I worked with had helped her mom through breast cancer twice, and she asked me a lot of questions that I couldn’t answer, so she insisted that I call back and get more information. I had a phyllodes tumor, so the science librarian pulled and forwarded a bunch of articles. Phyllodes tumors are very rare – <1% of all breast cancers, usually benign rather than cancerous, but very fast growing. Because they are so fast growing, they are not usually discovered until 5-6 cm or larger, and then they can quickly grow much larger in just a few weeks, with a few reaching 30 cm (30 cm – visualize that…how would you not realize you had a 30 cm tumor in your breast?). Mine was 1.5 cm – so it had been caught early. All of the literature agreed that neither chemo nor radiation worked on this type of tumor – the only treatment was wide surgical excision as quickly as possible. Only twenty to thirty percent of these tumors are malignant, and surgical removal takes care of it in most cases. Recurrence rates were 20-30% – again treated with surgery. Metastasis was even more rare but was always fatal.
I was just barely into my doctoral classes and would have liked to wait until after my courses were over but was advised not to wait – if the tumor grew, then more of my breast would need to be removed during the lumpectomy. J’s schedule also complicated the scheduling of surgery. He had a week long field trip with fed and state officials during the first week of June, a short break and then several weeks at his dad’s because his step mom was going to Europe, and he had promised to take care of his dad while she was gone. His brother was flying down, and they were going to do a little remodeling of the house, adding handicap features that would make it easier for his dad to get around and his step mom to help him. Meanwhile, I was on my second week of school, turning in my second round of assignments, while also organizing the final details of my first big workshop for teachers – scheduled for the third week in June.
After looking at my schedule of workshops, which had been planned for six months, and my schedule of due dates, I scheduled the surgery for June 19th, which was in the middle of J’s commitment to his dad. The surgery itself was not supposed to be much more complicated than the biopsy, and the scheduler had assured me that the tumor was benign. It was day surgery, and I wasn’t worried. Plus, J’s reactions to stress had become more and more unpredictable, and it actually seemed easier to just have E drop me off, and then pick me up when it was over than to have J frantic and stressed about schedule conflicts. I worried about him worrying about me, so I tried to downplay any concerns, but didn’t realize until right before the surgery how much responsibility I was forcing my 19 year old daughter to assume. J left for his dad’s on June 13th. I handled my workshops, and worked through Thursday evening. J arrived at his dad’s fully expecting his stepmom to have backed out of her trip since her husband’s health was so unpredictable, and he was planning to turn around and come straight back home to be with me. I think I had believed the same thing, because we did not have a Plan B. When he arrived, she was already on a plane for Rome.
She left him a list of errands to do that had nothing to do with his dad, but had neglected to leave him any basic care information – no RX list, no list of contacts, no schedule, and most importantly, no clear way to contact her while she was gone. Needless to say, he was a very unhappy man. He also was traumatized at the idea of me having surgery without him there. After his brother arrived, he decided he would just fly into the nearest airport Thursday night (2 1/2 hours away), drive in for the surgery, drive back to the airport after the surgery was over, and fly back to his dad’s, since his brother’s flight was Saturday morning. I squashed that idea as hard as I could – the idea of him flying and driving all over the state while I was trying to stay calm about what was happening to me was almost more than I could bear. I didn’t realize what his perception that I didn’t need him was going to do to our relationship. I went off to have surgery on Friday – and was in for a shock.
The surgical attendant came in to talk to me about the recovery period for my cancer surgery. My bewilderment must have been plainly apparent, and I actually said “But she said it was benign” because he suddenly stopped talking and ran (literally) away. Suddenly, my surgeon was in my room, firmly announcing “I think you may be a little confused – you do have cancer…small…blah blah….malignant…blah blah.” Thank God for the women I worked with, they had forced me to ask questions, and provided me with medical information, and forced me to talk about what was happening. Since I had already done all of the reading, I knew what my treatment options were and what my recovery odds were, and knew that surgery was the only treatment. I came through surgery without a problem, bruised incredibly badly and had to go in for an emergency visit, but was well enough to go back to work a week later. J came home shortly after that, saying little about my surgery or the discovery that it was indeed cancer.
We never really talked about my having breast cancer before the disaster. Unlike many people diagnosed with breast cancer, I found out that I had it, was treated, and then was declared clear all within a couple of weeks, so at some level it never seemed that real – I had no time to worry and no real decisions to make since the only treatment was surgical removal. My gall bladder removal actually seemed more serious because the physical recovery was so much worse. That began to change, however, when I got the EOB from the insurance company and it said that they had paid for my partial mastectomy. That really made me think about the way my life has changed – not physically even with the 3″ scar, but administratively since on all of the future forms in my life I will have to fill out that I have had cancer. I will have trouble getting life, health and disability insurance. On the other hand, the phyllodes tumor has not affected my overall health. What’s next? Who knows.