Let me start by saying that breast cancer, or any cancer, isn’t really a laughing matter. I understand that cancer is serious, and this is a lighthearted blog. However I want to share my story and sharing on this blog doesn’t seem too inappropriate.
Second disclaimer: I may not use the precise job title of different medical personnel that I encountered through this journey.
Third disclaimer: this is a long entry. It’s long, but I hope it isn’t boring.
Why share now? Well first, this is October, breast cancer awareness month. Everywhere I look I see pink ribbons and breast cancer awareness merchandise, and, second, it has been 5 years since my diagnosis.
In 2009, I went for my annual mammogram toward the end of summer. A couple of days later, I got a message on my answering machine asking me to schedule a follow-up procedure. I had gotten similar messages after other mammograms, and the problem was just calcifications or something similar. Because of my past experience, I wasn’t particularly worried. I also wasn’t particularly motivated to schedule more x-rays, so I ignored the message on the answering machine, and the next one, and the next one. I also looked at the letter they sent me and set it aside to deal with it later. I was too busy to bother because I was certain a repeat mammogram would be essentially a waste of time. Finally I got a signature-required registered letter. Arranging to get the registered letter was so much hassle that I called the number in the letter soon thereafter. The scheduler tried to preserve the sense of urgency without frightening me, but I could tell she was taking the whole thing more seriously than I was.
I went for the next appointment at the Breast Center knowing that there would be a more detailed scan of the suspicious area followed immediately by a biopsy if the radiologist thought it necessary. Sure enough, the radiologist felt that a biopsy was warranted. As I lay down, the technician used ultrasound to locate the mass. Then came the biopsy. The biopsy tool was about the length of a screwdriver or an ice pick and had a large hollow tube (smaller than a straw, bigger than a coffee stirrer). Using the ultrasound to guide her, she plunged the biopsy tool into my chest, scooped out some tissue, and left a tiny titanium marker. The marker is designed to eliminate multiple tests of the same spot. I think there was pain-relieving medicine involved, but I remember believing that the biopsy tool could be used as a torture device. There were several people in the room during the procedure, and the atmosphere was relaxed. Almost everyone assured me that it was probably nothing, just a cyst or something else that wasn’t a big deal. But just in case, I had to have another mammogram for the radiologist to compare with the original problematic one. Ok. This whole thing was getting old, now I had more waiting for the comparison.
Wouldn’t you know it? The marker chip was not at the site of the radiologist’s original concern. So now what? I needed a second biopsy. However there was another woman who had been scheduled for a biopsy that morning, and my procedure had run so long that she had already been waiting for over an hour past her appointment. The staff offered me the choice of getting the second biopsy over with and making the other patient wait or going to lunch while they did her biopsy and returning for my second. I decided to go get lunch and return for my second biopsy so that this other person wouldn’t have to wait yet another hour for her procedure. I wouldn’t want to make someone else spend any more time dreading it.
I didn’t actually want to return for the second biopsy because the first one was painful and now seemed like a total waste of time. I did find out later that the first biopsy was not cancer. However, my dear husband was with me, and he didn’t let me skip out on the second biopsy.
I don’t really remember anything about lunch other than I ate it with Scott. We returned for the dreaded second biopsy. This time I knew what to expect. I tried not to look at the tool as she plunged it a second time into my chest. I think I knew at that point what the results would be because the atmosphere in the procedure room was totally different than it had been during the first biopsy and one of the technicians looked at me as I was leaving and told me that she would pray for me.
All patients who go through the biopsy get the results in person. I scheduled my results appointment for the following Friday. Some time before my appointment, I called and scheduled it for a later time the same Friday.
During the originally scheduled time for getting my results, I got a phone call to confirm my appointment Monday with Dr. So-and-So. The caller was obviously expecting to get an answering machine, not a live person. She was flustered when I said I didn’t remember seeing that doctor before. She stammered out that she was just reminding me of my appointment on Monday afternoon. Finally, I asked her what Dr. So-and-So’s specialty was. Her answer, oncology, confirmed what I had suspected. I had prayed for accurate lab results. While I would have loved to have received negative results, I know that God had answered the accuracy request.
I headed off to my result reveal appointment knowing what I was going to hear. I was shown into a private room designed for comfort with spa like furnishings and soft lighting. Oh, and lots of boxes of tissues. I think the person breaking the news to me was surprised by the fact that I came to the appointment alone. She seemed a little worried by my calm demeanor. I know I had evaded the follow-up testing, but I was taking the diagnosis seriously. I explained that I wasn’t shocked by her news because I had already figured it out. She was distressed when I told her about the appointment confirmation call and promised that she would see nothing similar would happen again.
Why wasn’t I more distressed? First of all, I know that God is in control. My diagnosis wasn’t a surprise to God. Second, I had enough clues to know what to expect and I had already processed many of the expected emotions. Third, while the diagnosis was cancer, the cancer type was non-aggressive and the prognosis was good.
The following Monday I had my master cancer appointment. I went to one place and met the surgeon, the radiologist, and the oncologist assigned to my case. They explained that the type of cancer, DCIS (ductal carcinoma in situ), was fairly slow growing and that I had some time to think about my the options. As a group, they recommended lumpectomy, followed by radiation, then chemotherapy if needed. I asked about doing nothing. Neither the doctors nor Scott seemed to think that doing nothing was a good idea. Scott is action oriented. “Let’s just get rid of it.” I was not 100% sure that I was making the right decision, but I agreed to the surgery and radiation.
When the surgery scheduler called me, she was apologetic that they couldn’t schedule the surgery for several weeks. I honestly didn’t care. I was in no hurry. If the cancer were slow growing, a few more days wouldn’t make that much difference. The first date she offered me was my daughter’s birthday. I refused and selected a date in the following week. The scheduler seemed surprised; apparently many patients want surgery as soon as possible.
If I had it to do over, would I make different choices? Possibly. After reading reports that autopsies often reveal undiagnosed tumors such as mine that were not the cause of death, I think I might have just had careful mammograms to track the tumor instead of having the lumpectomy. And now I’ve read articles that discuss the careful monitoring that I had considered and suggesting that the typical lumpectomy and radiation is over-treatment. I suppose there are trends in treatment just as there is in anything else.
I had the lumpectomy in November 2008. Every patient’s experience is different, but I would not wish my experience on anyone. I am grateful to the medical personnel that treated me. My bad experience is not because anyone did anything wrong.
The surgeon told me that she originally removed a certain amount of tissue. The lab results came back that there were clean margins, but she removed additional tissue anyway. Really? Why? If there were clean margins, what was the advantage to removing more tissue? The tumor was about the size of a pencil eraser. Most of it had actually been removed during the biopsy. The surgeon removed tissue larger than the size of a golf ball. Seems excessive to me.
Healing took longer than I had been told to expect. Because of the holidays and travel, I didn’t start radiation till January 2009. Radiation was horrible for me. It was very painful, and the pain was exhausting. When I asked my radiologist why he didn’t warn me about the intense pain, he apologized. According to the radiologist, pain is a very rare side effect, so rare that they don’t bother mentioning it to patients. Had I known how painful radiation would turn out to be, I can almost be certain I wouldn’t have chosen the recommended treatment.
Once the torture of radiation was finally over, I got to move to the next step, taking Tamoxifen. Even though my cancer was not estrogen related, taking Tamoxifen is supposed to reduce the chances of recurrence. I dislike being hot. Every time I would visit the oncologist, I would plan to tell him that I was going to quit. Every visit, he convinced me to stay on course. So I took the medicine and turned down the temperature. My daughters complain about having to wear jackets in the house during the summer time. My heating bill is ridiculously low. My hybrid Siamese-tabby cat got increasingly darker. Turns out that Siamese cats have temperature sensitive coloring, and Arwen’s coat darkened to the darkest it could go. My five years of medication are almost over. When I stop taking the medicine, my air conditioning bill will be more reasonable and my heating bill will be more like my neighbors. My daughters won’t have to dress so warmly in the house. New research that says ten years of Tamoxifen is even better than five years has no effect on me. I will stop in a couple of months. I will not go past five years. I will celebrate finishing that prescription.
Do I worry about recurrence? Actually no. I’m not bragging. The fact that I don’t worry doesn’t mean that I’m super spiritual. Perhaps I don’t worry because God doesn’t allow me to encounter that temptation (1 Corinthians 10:13).
That’s my story. Thanks for reading it.
Do I have any advice for other women? Maybe. I wish that since my cancer was not aggressive that someone would have suggested that I take a few weeks to research my options and make a more informed decision. No one was pressuring me to make a decision during the master appointment, but I guess I was pressuring myself. I think I would feel better about the whole thing if I had done more research before committing to surgery.