I had a follow up with my oncologist, Dr. P, today. It was the first time I'd seen him since the day before my last round of chemotherapy. Since then, I've been through lymphedema and radiation.
Going in, my question was basically....how am I going to KNOW that I'm okay? Many people have asked me if I'm "in remission," or if I've been "given a clean bill of health." I didn't know what to tell them. I feel good, but then again, I felt good a year ago and had a 3.5 centimeter tumor in my breast! I have survivor friends who go in periodically for blood tests. Some even have had a post-treatment PET scan. Should I be doing these things? In a way, there would be a level of peace of mind to get a scan and be told that it was "clean."
I dressed for the gym, since I was going there after my appointment. I wore my new shirt from my race yesterday. It's a really nice blue shirt. Not T-shirt material, but like my other workout shirts. Of course, it says "Carlsbad 5000" all over it. When Dr. P walked in, he saw the shirt and asked me if I ran yesterday. He seemed pretty impressed when I told him I did. We had a nice chat about the race, the elite winners (who ran the darn thing in barely over 13 minutes!) He asked if I was going to do any more races. I mentioned the 3 Day walk in November--60 miles in 3 days!
I had one question for him that I told him I should have asked last July. Exactly what stage was my cancer? He didn't volunteer it back then, and I didn't ask. I was kind of afraid to hear the answer. Besides, I was still going to get the full panel of treatment, so what did it matter? He confirmed for me what I had guessed reading my pathology report-Stage IIIa.
He did a brief physical exam and thought everything looked good. I asked him if any of my supplements could interfere with the tamoxifen. I ran down the list of supplements I'm currently taking: Vitamin D; Vitamin B; biotin; omega 3 fish oil capsules. No problems there. I asked him to order a Vitamin D test to check my levels. They were half of what they should have been last fall. Since then, I've been supplementing a lot and want to know if its helping. He asked me how much D I'm taking. I paused for a second and told him the truth...10,000 a day. He was a bit surprised by that, but didn't tell me to stop, and ordered the test for me.
Then we got into the subject of peace of mind. I mentioned the idea of a PET scan, just to be sure. At this point, he is of the opinion that there isn't any upside to it. My scan last June did not show any metastases. He believes scans show 'incidentalnomas." That's his way of saying false positives. Rather than giving peace of mind, you end up freaking out over nothing. A PET scan isn't going to show the errant cancer cell floating around my body, anyway. Having gone through all of the treatment that I have, he considers that the cancer is gone. Besides, the radiation exposure of the PET scan isn't healthy if you don't need it. The bottom line was that the costs outweigh the benefits. As for the blood tests, he thought they were a waste of time as well. I forgot exactly why-maybe I'll ask Eric later to refresh my memory.
If I feel any unusual pain in my torso that doesn't go away, I should come see him.
Can I live with that?
I asked him what I should consider myself. Am I in "remission?" He answered immediately, YES. Can I say I have "No Evidence of Disease?" (NED) He said YES. In fact, he said he considered me in remission after my surgery. The chemo, radiation, and hormone therapy is just overkill to make sure it doesn't come back. If I do have errant cancer cells floating around, my immune system and other systems should be able to tackle it. If not and the cancer comes back somewhere else, then it is what it is. Doing a scan now isn't going to change that.
Can I live with that? I could have pushed for a scan, but at some point you just have to live. There are no guarantees in life. Everyone's body is going to die at some point. I just got a preview that mine may go from cancer. Maybe it won't. It isn't worth obsessing over and exposing myself to even more radiation than I have had already. With the hormonal treatment, exercise, and new way of eating to fight disease, I'm just going to LIVE. Live with my new friend, NED.
Speaking of the whole death thing, I am so grateful that I know the Lord. Death has been overcome by Jesus and I don't have to fear it. What always made me kind of sad was to imagine my kids and family without me. I was going to be with the Lord because to be absent from the body is to be present with Him. (2 Corinthians 5:8). But it would be sad to have my kids grow up without their mom. But you know, in the end, it is all in God's hands, not mine. I need to trust Him and not lean on my own understanding.
For now, I'm going to focus on living a healthy lifestyle with NED. For you survivors out there, I'm curious about what kind of post-treatment screening or follow up your oncologist does with you. Scans? Bloodwork? Nothing?
My oncologist does blood work. Looks at "tumor makers"??? I probably should be more informed, not sure what the lab is that he does. I too have wondered..so how do they know if it comes back...just wait for symptoms to appear?
ReplyDeleteNED is beautiful!! It's always tricky - how to think about it & describe it to others. People who have not had experience with cancer usually want something very cut & dried - you're cured. Most are pretty uncomfortable with the reality of breast cancer. I tend to think of it (still, even after 10 years) as no apparent signs of cancer. It may not be as comforting as "cured", but I think it's more truthful. And I'm grateful for every year that I can still say that!
ReplyDeleteI had some scans for a couple of years with the idea that finding something early might mean it was more treatable.