Every Fourth Monday

Most people’s months start on the first. Mine run in four week cycles, starting on approximately the second Monday of each month. This is the day of my monthly appointment with Dr. G. Once I arrive at the Cancer Center, I do my bloodwork, then check the status of my prescriptions. Then I wait. I’m usually there about 2-3 hours, more if I end up needing any additional consultations, or if there is a long wait. I try to make my appointments for the morning, rather than the afternoon, but no matter when I schedule them, I’m always exhausted by the end. The appointments are emotionally weighty for me – they haven’t fully solidified into the ebb and flow of my life, my routine. It still gives me a small jolt to walk into the Cancer Center doors and remember that I’m a patient there.

I continue to struggle with the fact that I have an incurable disease. Metastatic cancer is inoperable – even removal of the primary tumors in my breast do nothing to halt the progression of the disease, because the cancer cells have already mutated, morphed into something different and taken up space in my bones. Because of this, the metric of therapeutic success is not resolution of all disease in the body, but “progression-free survival.” My doctors measure how long I can stay on any given treatment plan without my cancer gaining the upper hand. It feels like a game of leap-frog, and I find it immensely frustrating that there is not more medical advancement to find a cure for this disease. I fight a constant war in my head between hope and fear, generally resolving the battle with an uneasy detente between the two.

Last Monday, I had my second PET/CT scan, the first since beginning treatment. We felt cautiously, uneasily optimistic about the results, because I had been feeling much better while on this course of therapy. Using the metric of progression-free survival, the doctors compare the current scan images with past images, and look for any new tumor growth. The hope is that the tumors may possibly shrink, but that is neither the goal or the expectation with metastatic treatment. The PET/CT scans look at two different metrics to measure growth: size and metabolic activity. The tumor sizes can occasionally fluctuate, but the hope is that they do not grow by any measure of statistical significance. If the tumors show increased metabolic activity, that indicates that they are utilizing more glucose, and therefore increasing their food supply – they’re growing. This is the primary metric of stasis or tumor change. If the tumors have remained static, the course of treatment generally remains the same. If the scan begins to show tumor growth and increased activity, then the course of treatment will start to shift, depending on the information gleaned from the scans.

The information from the scan serves both as a snapshot and, to a lesser extent, a predictor. When I had my first scan in November of last year, we received our first data point. We found our baseline, upon which future scans can be measured. With this scan data, we are connecting two points into a line. We have a trajectory. We can start to understand how responsive my cancer is to my current line of therapy, or how aggressive it might be. It shines a light into the darkness, down a tunnel where we previously could not see. We begin to see whether or not there is a flicker of hope down that tunnel. It has only been four months since I started treatment, so we were not anticipating anything grand. We had hoped for boring news, stability. No change. No progression.

What we got was news beyond our greatest expectation.

My scan showed significantly decreased activity in all tumor sites. My breast tumors had decreased in size by almost a third, my lymph nodes showed no metabolic cancer activity in them at all, and my bone lesions had significantly decreased in both number and metabolic activity. There was significant reduction in metabolic activity in all bone lesions, and even the “hottest” spots were less than half as active as they had previously been, and were fairly close to normal. In other words, the cancer had shrunk, a lot.

Now, this is tremendous news. But I have to temper my excitement a bit, because metastatic cancer can be wily, and things can change quickly. However, my doctors were very encouraged, and believe this is a good sign. This treatment is working. How things will progress in the future is still unknown, but for now, we will breathe a sigh of relief.

11 thoughts on “Every Fourth Monday

  1. I am in tears! Continued prayers! It was weird, I saw your story with “new blog up, includes scan results.” The next story was someone else but her post said, “Three words, God is Great.” He sure is!

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  2. Yeah — happy to hear good news!
    I’m the “every fourth Thursday” girl and next month will be our first look since starting the met meds. I remain cautiously optimistic, like you (most days)
    Enjoy the spring air with your gentle sighs of relief!

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  3. Emily, you don’t know me but I have been following your blog since you mentioned it on the INM Facebook group. I have been rooting and praying for you and your family, and am so, so happy for your good news.

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      1. I too follow from INM post. (SC ’08). In awe of you, your writing, and so glad for a bit a very good news.

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  4. I was diagnosed in January 2016 with stage 4 cancer, mine had also bone metastasis. I think god my oncologist ordered that pet scan otherwise they probably would have treated me as a stage 2, putting me through all sorts of things that wouldn’t have really done much good. I had my ovaries out right away because my cancer is estrogen driven. I have been letrozole and ibrance since then with great success.
    My breast tumor no longer shows up and my bone Mets also are no visible.
    No one in my family besides my husband knows about my stage 4 diagnosis. I just wanted to live as “normally” as possible while I can. My oncologist feels this treatment may work for me for quite awhile.
    I now see my oncologist once every three months and have a pet scan once a year.

    Just wanted to stop by and say I hope you continue to do so fabulously. Take care!!!

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  5. I am a “first Thursday of the month person.” And have been for a very long time. Last week was my 12 year anniversary of my diagnosis of MBC with the first metasteses found in my bones, which seems pretty common in this blog. I always tell everyone who wants to talk, that I feel very fortunate. My doctor is my hero, my nurses are angels sent from heaven and my sisters give so much. I am indeed fortunate though I wish I had a little toddler with lots of toys to trip over. Please keep thinking of us as we do of you!

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