curlygirl's Cancer Blog
August 24, 2008
| The Results Are In | Views: 1254 |
I finally got my Oncotype Dx results! I know the wait was not that long, but it had started to feel like a really long time. Anyway, I was looking forward to the results’ telling us whether I need chemo or not. Then the doc came in and told me that I fell into the “intermediate” group, so it was not clear whether chemo is appropriate for me or not. What!? Ok, so here’s the deal…the Oncotype Dx test is a genomic test done on the tumors of women with early-stage, node-negative, ER-positive breast cancer to determine how much of a benefit they can expect to receive from chemo. The “benefit” to which they refer is a decrease in the risk of distant recurrence (recurrence of breast cancer somewhere else in the body) within 10 years. Comprehensive studies have been done on samples from the target population and scientists have determined that patients fall into 3 groups. Those in the low-risk group are unlikely to gain a significant benefit from chemo and those in the high-risk group are very likely to gain a significant benefit from chemo. Those of us in the intermediate group, however, are in the range for which there is still not enough evidence to make a recommendation one way or the other. I thought I was going to cry. How much longer would I have to wait to get this decision made?
My doctor was great and talked me through the results. I am on the low end of the intermediate group (my score is 20, for those of you in the know) and, with tamoxifen, my risk of recurrence is fairly low (5-13%, depending on which study’s results you look at). Apparently, before my diagnosis, my risk of developing breast cancer was 12%, so I’m doing the same or better than before, if I understand all this correctly. In addition, according to the stats from the studies, chemo would only reduce my risk of distant recurrence by about 3%. This didn’t seem like enough of a benefit to put my body through chemo, but I wanted to be completely sure. My grandmother died of a distant recurrence of breast cancer, so that danger was very real to me. I didn’t want to make the wrong decision and regret it later.
So, Tim and I talked with the doctor and asked all the questions we could think of. The more we talked, the more strongly I felt that I did not need chemo. It has its own health risks and those risks didn’t seem worth taking for the 3% benefit I might gain and Tim agreed. The doctor said I could think about it for a couple of days, but I asked to get the appointments for radiation scheduled, as I was pretty sure I was not going to change my mind.
I then proceeded to obsess about this decision for the next two days. I read everything I could find about the tests and the studies on which the statistics in the test results report were based. I consulted friends with backgrounds in biology and an understanding of the statistics I was looking at. I had the same conversation over and over with anyone I could trap into listening to me. With every piece of information I gathered, I felt more and more that I had made the right decision. However, I thought about it so much, I was actually frustrated by not having a moment’s peace to just sit with the decision and wait to hear what my inner self had to say about it.
On Saturday, I took some time to quiet my mind, and I was really able to connect with a deep gut feeling that I had made the right decision. I realized that this was a very emotional decision on many levels. Of course, I was afraid of the illness and physical changes brought about by chemo, but I was prepared to face those if I needed to. The bigger issue for me was that I was trying to make the “perfect decision.” In talking with Tim, I realized that I was trying to make the decision that would bring my risk of recurrence to zero, which is not possible. I finally had to acknowledge that I will definitely get sick and die someday. I can’t prevent that through this decision, no matter what decision I make. This may seem obvious to others, but I believe that I truly thought I could plan my way out of that particular truth. That realization helped me to calm down and look clearly at the information I had.
In addition, I think I was feeling a bit of “survivor’s guilt.” I have cancer…I sort of feel like I should be sicker. I don’t want to be sicker, of course. I’m unendingly grateful that I have such a good prognosis and that I will not have to put my body through serious trauma as part of my treatment. But I feel badly that I have gotten such an easy ride. There are so many people who are really suffering from this disease. I know it’s not rational, but I guess I feel like if I suffer more, then maybe someone else won’t have to. It doesn’t make sense, but it is what it is. It took a couple of days, but I’ve come to accept that my being well or ill will not affect the outcome of others’ diagnoses and treatment.
So I’m finally feeling good about the decision. I have an appointment this week to get radiation set up, then (who knows when, right?) I’ll start radiation and 5 years of tamoxifen. I’m told tamoxifen will give me menopausal symptoms. I told this to a friend and she said that poor Tim’s gonna need a blog of his own! We are both happy with this treatment plan, though. I don’t know why I lucked out on this, but I’m grateful that I did.
12.17.08 - 
Auntie Carole 
Thanks for your support -
Kathy,
The it is great to here that you are informed and making a your choices with full knowledge. Just tell Tim that you are willing to work around the symptoms of menopaus, everyone suffers from this uninvited guest. We love you…
Cheers,
Eyecandy (Paul)
Have a nice day.
P.S. If Tim needs to talk, please have him join us., I think there is about 3 females for every male here.
Kathy and Tim,
You’ve made the right decision – 3% isn’t worth all the discomfort that comes with chemo. Remember, you are in our thoughts everyday. Please let us know if we can help.
Love,
Deb and Brian
Great news! I have to agree, for 3% I would not want to deal with Chemo.
As for “survivor guilt”, I posted something alone these lines some time back. I agree that on one hand the ride has been easy, but on the other hand, the not knowing and the what ifs and the when will it come back are just as real and scary and disturbing no matter how much or how often you have had cancer. I think the biggest hurdle may well be survivorship. In a magazine at my urologist (Coping) there was an article that suggested cancer survivors suffer ptsd with an intensity similar to combat vets and rape wictims.
I will pray for your peace of mind and freedom from guilt. Being a survivor is enough for anyone, try not to allow your mind to add to the burden.
Be well and blessed
Hugz
Mac
Kathy,
I am glad you’ve come to a decision. What a relief! k