it’s just a number

Neuroendocrine tumors don’t get staged like other types of tumors: they get graded. Quite simply, the tumors get called one of three numbered grades based on how quickly the cells divide and how well-differentiated they are. Grade one is low, grade two is medium, and grade three is high.

Some people with G-1 can live for decades with no growth on no drugs at all, or just a monthly injection. G-3 is said to be almost a different disease altogether, often treated with an intense regimen of chemotherapy that makes one lose their hair. When I was diagnosed I was on the upper end of G-2–my tumors grow fairly quickly compared to other medium-grade tumors, but they are well-differentiated and they respond to the slightly less-toxic therapies.

Last week I had my first appointment with my oncologist since my surgery. After a little bit of warm up about how good I look and how much oxygen i’m now getting without 1.4 extra liters of fluid around my lung, he blurts out:

“Your tumors are now for the first time being called G-3. Did you know that?”

My heart stopped.

Blood started pumping in my ears.

I have only cried once before during a doctor’s appointment and it wasn’t when I was first diagnosed. Tears suddenly sprang to my eyes.

A thought that has never before seriously crossed my mind came surging up to the forefront: “I’m not going to live through this.” Then: “I’m scared.”

It’s OK to be scared. But I am a liver. Where is my silver lining? It took me a few days to find it.

Three is just a number. Two is just a number. And like my old oncologist used to say, tumors don’t read the textbooks. So the pathologists start calling it a G-3–so what? In my case the recommended treatment is still the same. No matter what it’s called, the tumors will respond to the treatment in the way that they biologically respond to the treatment.

I had a biopsy in November 2010 and a surgery in December 2010: these were the tumor samples used to grade my tumors for two years. No one has had the opportunity to test any new samples since then, so it could be that my tumors have been G-3s for a year, or even two years. No one knows when the tumors cells mutated and started growing faster. Still, my cancer hasn’t spread. And clearly i’m still alive. Working through a few side effects of surgery still, but basically feeling good.

I wrote something in September 2011 that I have been thinking about a lot lately: All of these scans and all of this pathology, they’re just filling us in on what has already happened. They’re week-old or year-old newspapers that we’re suddenly discovering. What is really happening is the doctors and I are running after the cancer as fast as we can but we can’t quite get there. It’s always one step ahead. It’s not maliciously one step ahead, it just is. It is growing and dividing and mutating in real time–doctors find out after the fact what it has done. I take chemotherapy and take chemotherapy until I get a scan that shows growth. I only get a scan once every two or three months–when in that time did the chemotherapy stop working and the tumors start growing? When I “got” cancer on October 25, 2010, I already had it. For all I know, it could have been growing for 10 years before I started exhibiting the more unpleasant symptoms and it finally got found. 10 years!

During the appointment, the doctor rushed to try to sooth the news: “The NET grading system is still fairly new and it’s possible they will change it so there are four grades instead of three. You would have a G-3 out of four grades, with G-4 being almost a different disease, and definitely not what you have. What you have, with the cell-division rates that you have, would be like a medium-high grade.”

I’m still scared.

What do I do with this fear? I try to remember to focus on the things that really matter to me. If my time is short, I try to prioritize doing the things I really want to do in my life. But this is hard. A lot of the things I really want to do I can’t accomplish right this second. I’m only 27. I can’t get married and settle down and get a dog and have kids and become an aunt and become successful in my career and have grandkids and grandnieces and nephews and retire all at once right now. I can start writing a book, but it’s not going to get published in a week.

If I can’t do all these things right now, at least I can just live right now.

And G-1, G- 2, G-3…they’re just a numbers.

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10 Responses to it’s just a number

  1. Mark Z says:

    Exactly!

  2. Matt says:

    Lindsey, you are not a number…or a statistic…or even a percentage.

    You are a LIVER!

    You have claimed this title!

    Doctors need to group things…catagorize things. It has alot to do with
    their science background.

    You are infinitely more than a science project.

    Here’s something slightly off topic.

    I was watching a little documentary in which a woman with a brain
    tumor stopped trying to “fight” it & began to not only accept it, but
    started to focus on what it might possibly have to teach her?

    Your road is certainly a road less traveled, but it is your road.

    What does it have to teach you???

    What do you have to teach us???

    One last thought.

    Every morning…when I awake…I imagine myself as a prisoner
    who is reprieved from death.

    I literally imagine that this sunrise is a gift.

    And I try to live each day as if it were my last.

    If it is not..then I fall to my knees & give thanks.

    I don’t worry about what “might” happen 5 or 10 years from now.

    It’s a waste of effort to say the least.

    I bid you greetings on this fine day.

  3. Holly says:

    Lindsey, you write sol beautifully and clearly what is like to be a “liver.” I, too, am a liver, diagnosed in 2006 with ovarian cancer with three recurrences so far. In all that time I have never read anything that so clearly describes the condition and peculiar position we are in. I think your blogs would make an excellent book! You have a strong spirit and I pray you will be able to live with your cancer for many, many, many years! Or you’ll get rid of it. They are making progress in curing cancer. Love. Live. Laugh!

  4. clevegilbert says:

    Its just a number. Don’t let yourself be definded by a number. Heck. Go pick your own number, say something like 42.

  5. Cathy says:

    Hi Lindsey…Fear can stop one and immobilize them from living in the moment. It is truly the fear of the unknown. As children it may be the monster under the bed at night …as adults it is greater things that we can’t control or understand. If only it was as simple to shine the flashlight or have a hand or hug from soneone to help us uncover our courage to give voice to that fear, face it, and not allow us to be stopped from living in the moment. Lindsey you gave voice to your fears, hopes and wishes..bringing you back to the clarity and strength of being a LIVER…Each morning the sun rises breaking through the darkness giving us the HOPE of a new 24 hours. May the moon and sun be your flashlight through any darkness and may you awake feeling the HOPE of a new dawn.

  6. Lynn says:

    Lindsey, my husband has just found out after surgery that his has changed from a G1 to a G3. We are a few years older than you but I couldn’t have summed up how we feel more eloquently than you have done. You are so right they are just numbers and I will share the hope I have for us to include you too. You deserve to be a LIVER…..

  7. Stephen Haney says:

    Sending a cosmic hug your way you lovely, brave girl. You are a liver indeed.

  8. Maria says:

    Hi Lindsey. I’ve been following/reading your blog for a while now and wanted to say, don’t give up. My heart dropped as I read your last entry. It’s o.k. to be scared but don’t let it rule your thoughts – there is hope and a number is just a number..that’s all. Your experiences have been inspiring to so many people (including myself)…you are special and loved by many. You are a liver. :)

  9. Susan says:

    Lindsey,

    You are a liver!!! And so much more. Thanks for this wonderful post.

    I have brain cancer. Brain tumor classification also uses grades rather than stages. What I want to share with you is that pathology is really much more of an art form than an EXACT science.

    When my biospy was first read by the local pathologist (in Minneapolis, MN at a reputable medical center), he graded the brain tumor sample as an anaplastic astrocytoma grade III (with a grade IV being GBM and the worst). The average life expectancy for this diagnosis is 3-5 years. So my neuro-oncologist and I developed an aggressive plan of radiation and chemo (because my tumors are located in delicate areas of the brain making surgical removal too dangerous). However, my neuro-oncologist decided to send part of my tumor sample to a “world-reknowned” pathologist at the Mayo Clinic first. That pathologist decided I have oglioastrocytoma grade II. The average life expectancy for this disagnosis is 10-15 years (much better). Two pathologists, two different diagnoses. So we scaled back the treatment plan to chemo only (radiation would have caused severe brain damage due to my tumor locations and we can save that for later).

    People with brain cancer can have mixed tumor types and I suspect that is the case for me which could help explain the different grades from the different pathologists. My neuro-oncologist tells me to say I have astrocytoma grade II/III. I visit him every 3 months for my MRI scan to make sure the 3 tumors (Larry, Moe and Curly) have not grown. What my confusing diagnosis means for survival is anyone’s guess. What is means for me is to do my best to live a full life. Enjoy the little things. Let go of the petty things. Remember that everyone is dealing with something and that this is just my thing.

    Thanks again for the post. And remember, pathology is not an exact science. I mean how can it be if all of a sudden they think they can add an extra G and come up with G-4? Live to be an outlier — don’t follow the curve :)

    Many blessings to you and thanks for being such an incredible inspiration!
    Susan

    • lindsey says:

      Thanks for your comment, Susan. I like your philosophy. You’re right. I actually had the exact same thing happen at the beginning of my “adventure” with cancer with sending the samples to different pathologists and yielding different results. Just a number.

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