Just about a month ago, I marked an important day. It was my I Am Five Years Post Chemo-versary. It was a big deal on March 20th and it's still a big deal. It's just not a big ENOUGH deal.
On March 28th, there was a meeting in San Diego. It was the 243rd meeting of the American Chemical Society. I'm going to go out on a limb here. I doubt this is an annual meeting. While Columbus may have set foot on these shores in 1492, we weren't on our own until 1776. That's less than 243 years ago. Ya get my line of thinking?
Here's my REAL line of thinking. In this meeting, research was presented and it was all about a new blood test that is twice as sensitive as present tests at picking up on tumor markers. According to the presentation and without getting all technical, this new test which is not yet available to the general population, can detect changes indicative of a recurrence up to one year sooner than the current blood tests. In other words, earlier detection. Not early detection. Earlier. And earlier is definitely better. Most of the time. Unless it's not.
The American Board of Internal Medicine has just launched a new website: ChoosingWisely.org. One of the purposes of the website is to identify certain tests and procedures that may be deemed unnecessary. Thus far, nine different medical subspecialties have weighed in with recommendations specific to their areas of medicine. Of particular interest to me? The recommendations of ASCO, The American Society of Clinical Oncology.
When I was having my No More Chemo party, I remember asking my oncologist, with some (okay, TREMENDOUS) trepidation, "What's the exit plan?" As was and still is the norm, my doctor and I have a wonderful rapport and an all over the place type of communication that works for both of us. We can both be asking questions at the same time, he can be answering one question while I'm three questions ahead, we can finish each other's thoughts (sometimes). I still remember that visit. The visit that would have taken place precisely five years ago. The visit, that upon exiting his office, would thrust me into the next leg of the cancer journey....... the portion that I have come to refer to as "Flying Without A Net."
I remember saying, "I have no more breast tissue, so there are no more mammograms. How do we make sure I am okay?" And then I remember his very philosophical reply, "AnneMarie, you are too good a person. Nothing is going to happen to you." Thanks, doc, but I was really hoping for something a tad more scientific, something concrete, something to enable me to put my head on the pillow at night. In our typical method of communication, he did answer me. "IF something happens, it's not going to be a good situation." I knew what he meant. If something happened (happens), it will not be a local recurrence. I will go straight to the head of the cancer line. Stage 4. Distant mets. Terminal.
And then he explained how this would work. "We will do bloodwork to make sure the protein markers are not elevated." Last month, when I was at a seminar, those tests were discussed and new recommendations were being made. The doctors were being told these tests cause too much stress. Included in those "tests" is the blood test that is the sole method by which I am presently monitored. Pause. Repeat for full effect. The SOLE METHOD of monitoring available to me, a cancer patient. And Choosing Wisely, the ASCO portion of the program, says this test is not a wise choice.
Their reasons are valid. I think I read somewhere that even if the number is elevated, there is no scientific evidence that early detection via elevated tumor markers will change the outcome. The "outcome" happens to be My Life, just saying' AND according to the first gang of scientists, five years isn't the magic number anyway. In their abstract, it is noted that one in five breast cancer "survivors" will have a recurrence within TEN years of completion of treatment.
My scheduled oncology follow up is next week. It's on the exact date that I received The Letter from the radiologist wherein he noted "a density was seen which could simply represent a cyst." It was, in fact, invasive lobular breast cancer although it would be three full months before that cyst was identified as cancer.
I'm five years out. Only halfway to the real magic number if that other report holds any weight whatsoever. And, a few hundred thousand doctors have collaborated about this blood test.... the only follow up available to the breastless, and they say it's pretty much useless.
I'm officially in pre-doctor visit anxiety mode. Not only do I have the usual angst, now I have a million more questions. Maybe it's time to stop reading all the research. Maybe this empowered patient thing isn't all it's cracked up to be. Maybe my dad was right when he told me I was supposed to be ignorant and happy. I think the next couple of weeks are going to feel like years. I think the tequila bottle is going to be in a readily available spot in my freezer. Better off keeping it cold so I can simply throw a straw in the bottle. Rx Sip as needed until anxiety is controlled or until unconscious.
First and foremost...HUGS!!! You'll get through this appointment just as we get through ALL of them!ReplyDelete
SIGH...the numbers game. The follow-up. It's all so confusing. As an advocate and a coach I talk about standards of care and recommendations a la ASCO all the time. As a survivor, I use that same information to inform my decision making, but I make the decisions that allow me to sleep at night.
2.5 years ago my marker started going up. Now, I know I wasn't "supposed" to follow the marker, but when it was normal, I felt "safe." And after a year of watching it rise, with no other evidence of disease, I came to understand WHY these markers (the ones we have, not necessarily the ones that are coming), aren't used diagnostically. And I understood the "harm" in testing - the stress was remarkable. So much so, that after about a year I asked my doctor to stop giving me the results. He could take the test if he needed, I would do the scans requested, but better HE be up at night worrying. I had had enough! And in the end, I learned what I already new...it's all a crap shoot.
The ONLY thing we have is the right to make our decisions with state-of-the-art knowledge and a loving and supportive team. I know this week will be rough, but I also know you have an awesome team! Let me know if you need me to hold the bottle! XOX
I'm just adding a 2nd straw to the the bottle. Tequila is a team sport.
Where's my straw???????ReplyDelete
Right next to mine, mom.... right next to mine!!!Delete
Well, I know exactly where you're coming from here. Oncologist #1 said no tests without symptoms. Period. Oncologist #2 agreed, but decided to do a blood marker test at my last visit for reasons I don't need to bore you with here. This wait and see approach is scary, though I do understand it. Really emphasizes how it's all such a crap shoot doesn't it? I'll be thinking of you next week for sure.
Crap shoot, for sure. And crappy.... Thanks, Nancy. I truly do not believe the sense of community that exists in a virtual world...... more support than I could ever have dreamt!Delete