(Left: Dr. Erin Ellis, my oncologist)
I finally had my first appointment with the oncologist on August 27th (three weeks following my lumpectomy). Three weeks without a doctor's appointment almost made me feel like I was a "normal" person again. :~)
Waiting around to find out what the recommended treatment will be has been difficult.
In the meantime, I went back to work in preparation for the first week of school and I have kept MORE than busy. One of my biggest projects of the year (the district photo calendar) was printed and distributed to all of our schools this week. I have to say that I'm pretty pleased with my first effort, especially considering that I received my cancer diagnosis right in the middle of working on it!
Staff and teachers are all returning to the school this week and many are asking, "How was your summer?" What else could I say? I told quite a few people about my cancer diagnosis, but many had already heard about it through the grapevine.
People have been very supportive and sympathetic and of course, "helpful" in that several people wanted to tell me about a miracle cure in Mexico or with juicing or . . . by consuming baking soda.
Yes, I've had two people tell me that cancer is caused by the acidic environment in my body and that I can create a more alkaline environment by using baking soda. Hmmm . . . if ONLY I had known this before the diagnosis . . . reminds me of the dad in "My Big, Fat, Greek Wedding" and his Windex cure.
A week or so after my surgery, I called my nurse practitioner to ask if she could get the pathology report on my tumor (I had asked the surgeon for it at my follow-up appointment, but he said he didn't have the info). She emailed me as soon as she got it (thank you!) and said, "Got it! It's estrogren and progesterone receptor positive. HER2/NEU negative (which is good). And cell proliferation is low."
Thanks to God, that is the news for which I was hoping. From what I'd read, tumors that are hormone receptor positive respond well to hormone therapy. The HER2/NEU negative tumors are generally slower growing. I had also read that only about 10% of women with these type of tumors are helped by chemotherapy.
Since I had three weeks to prepare for my visit with the oncologist, I'd done a lot of reading and had my ducks in a row as far as questions to ask.
The main things I wanted to know were:
- Can I avoid chemo?
- Will my insurance cover the Oncotype DX test?
- Am I a candidate for the Mammosite procedure?
My husband and I were at the cancer center for a little over two hours. We had to wait over half an hour to get in, then we met with two people (an assistant and a social worker) before meeting the oncologist, "Dr. J." I'd already heard good things about Dr. J., so I was looking forward to meeting him.
I liked him. However, I was surprised that he made us wait so that he could run off the results of my pathology. Apparently, he hadn't had a chance to look it over yet. I had been told that he would go over it the day before my visit. Maybe cases like mine are "no brainers" for a guy like him, I don't know.
When he began to tell me the particulars of my tumor pathology, I brought out my printed email from the nurse practitioner and showed it to him. He seemed a little surprised and said, "Well, I guess you had the information a millisecond before I did."
Dr. J. said that I most likely will not need chemo. When I expressed relief about that, he quickly added, "hopefully." With the information he has to date, he said that he felt my chances of recurrence are low. He said that he'd like to order the Oncotype DX test and I said, "Oh, I was going to ask you about that." I brought out the form I'd printed from the Internet about it. I told him that I'd already called the Oncotype office two days before to ascertain whether my insurance would cover the test. I was told that the oncologist would have to initiate the process.
Basically, the Oncotype DX test costs about $5,000. It is the most sophisticated test to date for tumors and is relatively new. It tests 21 genes and is able to predict with a fair amount of accuracy the probability (low, medium, or high) of recurrence in the next 10 years. Doctors use the results to help determine what kind of treatment to recommend.
(I found out two days after my visit with Dr. J. that my insurance DOES cover the test, so the process has begun and I will have to wait a couple of weeks for the results).
On the off-chance that I scored in the "high" category, chemo would probably be advised.
When I asked Dr. J. if it were true that only about 10% of women with my type of tumor benefit from chemo, he said that is basically true. He admitted that they often over treat women since they don't know exactly who is going to benefit from the chemo.
He seemed a little surprised at some of my questions and said, "Save some questions for "Dr. K." (the radiology doctor). Fortunately, he was smiling when he said it.
Recently, I ran across an alternative radiation procedure that sounds promising and for which I may be a candidate. It's called "Mammosite" technology and involves injecting a catheter into the breast and inflating a small balloon at the site of the tumor cavity. Radioactive "seeds" are then injected into the balloon two times a day for 30 minutes each.
The treatment takes only 5 days, as opposed to 6 or 7 weeks in conventional radiation treatments. The upside is that it doesn't have the side effect of prolonged fatigue and higher doses of radiation can be used without damaging as much normal tissue or internal organs.
The procedure has been successfully used for years in treating prostate cancer, but only for about 5 years with breast cancer, so there isn't as much long-term data on it, but the short-term data appears to show it to be as successful as conventional radiation. It sounds to me as if it might be the wave of the future for radiation treatment for breast cancer, but who knows?
So I asked Dr. J. about it and he didn't offer much information. He told me to wait until next week and talk to the radiology doctor about it. It's probably because it's not his area of specialty and they don't offer it here locally.
From what I've read, however, the procedure needs to be done within six weeks of surgery and I'm already over three weeks out. So I felt that he was subtly blowing me off a little, knowing that if I wait to talk to the radiology doctor, the chances of my getting the procedure done are very slim with the time constraints.
On the way home from my appointment, I decided to take the bull by the horns and contacted Swedish Hospital in Seattle to see if I might be a candidate for Mammosite. I made an appointment next Thursday to meet with a doctor (a woman) to find out if it might work for me. So . . . more waiting! I have decided to pursue this avenue until (or if) I hit a roadblock.
Dr. J. also mentioned hormonal therapy after the radiation. I was expecting that as well. When I expressed reticence about going through instant, chemically-induced menopause, he remarked, "Well, you've going to go through menopause anyway in a couple of years, you might as well go through it now." (spoken like a true man!)
However, I asked if the menopause symptoms were more severe with the medication and he answered, "Yes." Yippee!
For some reason, the hormonal treatment bothers me more than the surgery and radiation, maybe because it isn't as "temporary." It carries a slight risk of uterine cancer and some other nasty side effects, but I'm told the risks are very low (and you are continually monitored while on it). You can only be on it for 5 years and then they take you off of it, but studies have shown that the effects last even after use is discontinued.
Dr. J. said that the hormonal treatment has been shown to be more effective than chemo at reducing the risk of cancer recurrence. So, if it's called for in my case, I'll do it. Someone at church told me, "Do it for your loved ones." Well, I may have to remind my husband and daughter when I'm experiencing hot flashes and severe mood swings, that I'm doing it for them!
(My ever-helpful husband jokingly said that he would build a skete behind our house for me to live in when the mood swings hit.)
I am not scheduled to see Dr. J. again for another two weeks so that we can see what the Oncotype DX score is before we meet again. So, I was not as relieved after this visit as I had hoped to be.
Still no treatment plan nailed down and more waiting!