Bonnie Gintis: Self Advocacy in Assessing Options
July 20, 2018
In the fall of 2009 I began feeling some pain, which I thought was due to a strained rib, after I had been rolling around bent backwards over a large physioball. The pain was resistant to all treatments and over-the-counter pain medications and anti-inflammatories, and I realized I was dealing with something serious.
I went to my family doctor, who seemed to not take my complaints seriously. I had to take over and guide my own work-up. My first test was a full body CT scan, which showed bone metastases in many locations throughout my body. It was immediately clear that I had some kind of metastatic cancer, but it took a while to find the primary. Here's why: I had had a perfectly normal mammogram about two months before all of this began, so we immediately assumed that it wasn't breast cancer. My largest area of pain which now turned into a swelling over my sternum, which I referred to half jokingly and somewhat lovingly as my "third boob." I went for a biopsy of my sternum, assuming that all the spots on the CAT scan were related to what was going on in my sternum.
The pathology report actually said that at first glance under a microscope it looked like I had normal breast tissue growing in my sternum. Obviously it wasn't normal because it was in my sternum and not my breasts. This was how I found my primary cancer. The pathologist postulated that it looked fairly normal because it must have grown incredibly slowly and my body had somehow managed it for a long time. On further testing he discovered that it was a somewhat non-aggressive version of estrogen-sensitive breast cancer.
I then had an MRI of my breasts, which showed nine tumors scattered throughout both breasts. At this point, seven different doctors had done breast exams and not a single one of them was able to feel any of the breast tumors, even with the MRI in front of them.
They predicted that I wouldn't live more than a year or two, and they truthfully admitted to me that in my advanced case, they didn't have much faith in surgery, chemotherapy, or radiation.
My first oncologist offered me every treatment possible. He suggested I have a double mastectomy, chemotherapy, and radiation. I decided to go for a second opinion to Stanford. At Stanford, they looked at me, and said, "you look like a less-is-more kind of person to us." They suggested that we move slowly and in stages. They predicted that I wouldn't live more than a year or two, and they truthfully admitted to me that in my advanced case, they didn't have much faith in surgery, chemotherapy, or radiation. Why torture me with unnecessary treatment if my life was about to end anyway?!
Since my breast cancer was highly estrogen-sensitive, they suggested I remove my ovaries and take an oral medication once daily to inhibit any estrogen that my fat cells or adrenal glands might produce. They suggested I do this for a while before deciding on any other treatment. It has been 8½ years and I have yet to need any other treatment.
My breast tumors disappeared within months. Since tumor that has invaded bone changes much more slowly than soft tissue, it has taken years and years for my body to shrink the bone metastases and remodel the bones involved. No one ever expected I would do this well and be alive and thriving this many years post diagnosis.
The radiation oncologist looked at my initial CAT scan, which was taken three weeks earlier and said, "Your sternal tumor has reduced about 60% in size. Well, this just doesn't happen."
One of the more interesting parts of my story is about what happened in the first three weeks after my diagnosis, before I decided on the anti-estrogen approach. At one point I was considering doing a little radiation just for pain relief and I had a second CAT scan in preparation for the radiation therapy. The radiation oncologist looked at my initial CAT scan, which was taken three weeks earlier and said, "Your sternal tumor has reduced about 60% in size. Well, this just doesn't happen."
I told her that I had become a vegan, and was beginning a regimen of nutritional supplements, and doing extended periods of gentle, fluid movement and meditation. She was not only not interested—she laughed at me, and repeated her initial statement, "well this just doesn't happen." She just could not wrap her head around the reality that didn't fit her paradigm. I walked out of her office and never had any radiation treatment.
I strongly believe that the conventional approach of eliminating estrogen from my body has been very helpful, but I have proof of those first three weeks that the alternative treatments I initially did were very effective in getting me started on my road to healing.
I don't consider my healing as ridding myself of cancer. I still harbor some cancer cells in my breast and bones. I have always considered my metastatic cancer to be my most difficult and challenging relationship. But navigating it has led me to Grace and an unexpected life of not only surviving, but thriving.