The oncologist said that my cancer tested positive for estrogen and progesterone, and that if I was older (I was only 35), she would recommend Tamoxifen, which is an estrogen blocker, and keeps estrogen produced by your ovaries from binding with any breast cancer cells in your body, so the cancer cells won’t become tumors. But because I was so young, and my cancer was not invasive, putting me on Tamoxifen would unnecessarily put me at risk for other health problems that are associated with premature menopause. Also, at the time, you could only take Tamoxifen for five years, and then you could not take it again.
She advised us to reserve Tamoxifen for use later in life, should I ever get breast cancer again. Which, of course, we all hoped would not happen. But if we used Tamoxifen then, and I did get breast cancer again, I would not be able to use Tamoxifen in the future, so better to save it as a back-up plan. This made sense to me. She said that because the cancer was non-invasive, I would not need anything like chemotherapy, which was a great relief to me. She talked to us about what radiation therapy might be like, and her office set up an appointment with the radiation oncologist.
I liked the radiation oncologist when we met her. She was also respectful of MG and of our relationship, as was her physician’s assistant, Steve. She was very detailed in her description of what radiation therapy would be like, and answered all of our questions and concerns. Basically, I would be getting radiation treatments once a day, five days a week, Monday through Friday, for six and a half weeks . The first five and a half weeks I would be getting radiation over my entire left breast, and the last five days, the radiation would be focused only on the tumor site. She dispelled my fears about developing any secondary cancers from the treatment – she said the risk was 1 in 3 million. We talked about how the technology involved and the location of the tumor made it possible to irradiate the breast without involving the chest wall, which would minimize any side effects like anemia or anorexia. There was a possibility of some fatigue, but every woman is different, so we wouldn’t know how the treatment affected me until I was going through it.
We scheduled my first appointment, at which the technicians would identify the target zone for radiation and mark me up with a sharpie (they keep the sharpie marks fresh throughout radiation therapy – a necessary but unfortunate daily reminder of what you are going through). MG went with me to that first appointment, which took place the day after my 36th birthday. Happy birthday to me, right?
After that first appointment, I went to my radiation sessions alone. For the first few weeks, my sessions took place at 8am, before work. Each session took only about 5 minutes from walking into the radiation room, getting settled on the table, being irradiated, and walking back out. It took longer to get undressed and redressed than it did to be treated. The first session was pretty emotionally traumatic. Just the reality of being on the table, and the awareness of why I was on that table, were pretty overwhelming. My drive to work from treatment took me right past our neighborhood, and I knew MG was still at home, so I stopped at the house and cried on her shoulder before heading in to work.
As time when on, treatment sessions were less emotionally painful, or at least I got used to them. I got used to seeing the other patients in the waiting room, but never for very long, because they did an excellent job of moving patients in and out of the waiting room quickly. However, the treatments themselves were increasingly physically painful as the radiation started to work. Even before my skin started showing signs of radiation burns, I felt a deadening feeling in my breast, which eventually became pretty painful. As soon as I started to feel that pain, I asked for samples of Biofine Emulsion Cream, which is supposed to help prevent permanent discoloration from radiation burns. The physician’s assistant resisted giving me the samples, saying that I “shouldn’t be having pain already,” and that I didn’t need the cream, but I was persistent until I got what I wanted. The cream did not seem to help with the sensations I was having inside my breast, but ultimately it did protect me from permanent skin discoloration in that breast. So, whether I really “needed” it so soon or not, I’m glad I started using it when I did.
He may have been right, as it turns out that months after radiation was over my breast surgeon identified an infected lymph node at the tumor site through my first post-treatment mammogram. This infection may have been what was causing me to have pain so early, or the infection could have been caused by the radiation itself. Either way, if not for this infection, I probably would not have been having pain so soon into treatment.
If you are going through a health crisis, cancer or anything else, it is important that you be your own best advocate. Nobody else knows what is happening inside your body like you do. If you have pain, and the health care professionals around you say, “you shouldn’t” have that pain, you need to be persistent about finding out why you are having that pain. At the time, I didn’t now enough to realize that I should have been more persistent about getting help with the pain in my breast, but as I continued on my cancer journey, after learning my lesson from this thankfully mild infection, I paid closer attention to what was happening in my body and became more vocal about it. I got better at being my own best advocate.
When I was going through radiation therapy in 2002, the treatment protocol for DCIS was five and half weeks of irradiating the entire breast, followed by 5 sessions of radiation targeting only the tumor site. By the time we got to those last five days, my tumor site was already so painful that I couldn’t wear a bra. The targeted radiation ended up creating a raw, seeping blister, which just happened to form on that fold between my breast and my armpit. So then, in addition to the pain I was feeling on the inside of my breast, I was having all of this pain on the skin of my breast. The only shirts I could tolerate wearing were men’s cotton t-shirts and even those could not prevent the blistered skin from folding in on itself. Which was very painful.
In the days following the conclusion of my radiation therapy, I often found myself crying for no apparent reason. Or for little, inconsequential reasons. Really, I think I was crying for a lot of deeper reasons: frustration with the pain, anger that I had to go through treatment at all, relief that treatment was over, and fear that the treatment had not worked. I remember going to my sister’s home for Thanksgiving that year, the same sister that came to town for the surgeries, and just being very emotional the whole time we were there.
Fortunately, the blister eventually crusted over, became less painful, and started to heal. I also became less raw emotionally, although I continued to struggle with my fear of recurrence. The radiation burn on my breast eventually faded. When sufficient time had passed, I was directed to go in for my first post-treatment mammogram. This mammogram did two things: it confirmed that there was no cancer left in my breast, and it indicated that one of my lymph nodes was inflamed. My breast surgeon did an in-office needle aspiration of that lymph node, to test it for infection, and in the meantime put me on a general antibiotic. By the time the test results on that lymph node were back, and confirmed that there was an infection in the tumor site, the antibiotic was already working and the pain I had been feeling for months was finally gone.
This in-office procedure, even though everything turned out fine, was just the first of many false alarms that MG and I went through after my first diagnosis. That is the life of someone who has been treated for breast cancer, or for any cancer really. Anything that looks remotely related to your cancer, even if it was an early-stage and successfully-treated cancer, means extra tests and holding your breath until you get the “all clear” yet again. And no matter how many times they tell you that you are fine, you still feel what we survivors call “scanxiety,” and I’m not sure you ever really get used to it. The further you get away from your diagnosis, the more practice you have focusing away from the anxiety, but it never really goes away.
