I have stage 4 cancer…carcinoid cancer to be exact. I am reading and researching day and night trying to find information about my cancer and to beat this thing even though the doctors say that it cannot be done. I’m reading and searching and finding out how little my doctors have communicated with me so far. As I type this I am on the second page of “Neuroendocrine Tumors” by James C. Yao, Paulo M. Hoff and Ana O loff. I stumbled on it using google books. You can only read the abstract because they want you to buy it. Here’s the link. So, what did I find on page 2 after reading for just a few minutes? Tumors have a grade. Here read it for yourself.
…survival duration varied by histological grade. In multivariate analysis of patients with well-differentiated to moderately differentiated NETs, disease stage, primary tumor site, histological grade, sex, race, age and year of diagnosis were predictors of outcome…..
Why is it that I have never been told any of this? Where do I fit in statistically? All I have been told is that I am stage 4. Now I know that the stage is only a part of my diagnosis.
What is the problem? Do they think that they are too smart for me? Is it that they are too busy making money to take a moment to explain it? Are they afraid of an emotional outburst when they give me bad news? I don’t get it. If I was a doctor dealing with people fighting for their lives then I would enable those patients to learn and fight for their lives by educating them as much as possible. I don’t understand why all of my communication with doctors is verbal. Why is it that I have never been given a pamphlet, a single sheet of paper with a written explanation of what my disease is about.
When you hear the doctor talk about your carcinoid cancer being “cancer in slow motion” they are often referring to the speed of growth and sometimes the grade. They are referring to the fact that the tumor is slow growing and well differentiated. First, you must know that this is not always true. It is NOT true for me. So, here’s my non-doctor effort to help everyone out there.
Here is information about tumor grades from the National Cancer Institute. You can read about it here. Here’s a snippet from the post.
Tumor grade is the description of a tumor based on how abnormal the tumor cells and the tumor tissue look under a microscope. It is an indicator of how quickly a tumor is likely to grow and spread. If the cells of the tumor and the organization of the tumor’s tissue are close to those of normal cells and tissue, the tumor is called “well-differentiated.” These tumors tend to grow and spread at a slower rate than tumors that are “undifferentiated” or “poorly differentiated,” which have abnormal-looking cells and may lack normal tissue structures. Based on these and other differences in microscopic appearance, doctors assign a numerical “grade” to most cancers.
Here’s a bit more:
Grading systems differ depending on the type of cancer. In general, tumors are graded as 1, 2, 3, or 4, depending on the amount of abnormality. In Grade 1 tumors, the tumor cells and the organization of the tumor tissue appear close to normal. These tumors tend to grow and spread slowly. In contrast, the cells and tissue of Grade 3 and Grade 4 tumors do not look like normal cells and tissue. Grade 3 and Grade 4 tumors tend to grow rapidly and spread faster than tumors with a lower grade.
If a grading system for a tumor type is not specified, the following system is generally used (1):
- GX: Grade cannot be assessed (undetermined grade)
- G1: Well differentiated (low grade)
- G2: Moderately differentiated (intermediate grade)
- G3: Poorly differentiated (high grade)
- G4: Undifferentiated (high grade)
I know my tumors are no longer considered “well differentiated” but, I do not know the grade BUT I can tell you the grade I give my doctors so far….(D-). It’s so disappointing to realize how much I have not been told.
I’m about to start going to a new doctor. Please say a quick prayer for me that they are aggressive in fighting my cancer and communicate with me.
It’s time to rise up and demand better care, agree?
Wishing you the best,
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