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Please begin with an informative title:

I have often wished for a cancer-o-meter in my body to be able to tell, without tests, how well I’m doing. I’m not convinced, still, that feeling well means that I am well (though most of the time I am very happy to feel well, don’t get me wrong).

But recent events, conversations, and controversies have started me thinking about various diagnostic procedures. Tests; scans; blood work; X-rays—all with different subcategories and permutations. My questions for you tonight are these: What sorts of tests did you have to diagnose cancer? What kinds of tests do you have now to monitor your health? What do they tell you? Have they ever been wrong (either way) for you or someone you know well?

I “knew” long before my actual diagnosis that I had some sort of cancer. I was convinced of that by the volume and persistence of the bleeding I had. But, as I understand it now, that actually needn’t be a signal symptom. In theory, it is possible to have severe vaginal bleeding from benign causes (fibroid tumors being the most common in women of my age). That wasn’t the case for me, but it could have been. So it is unclear to me how much faith I should put in my cancer-o-meter accordingly.

Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
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The procedure through which cancer was diagnosed for me was pretty complicated and protracted, really. A Pap smear, which has been invaluable in diagnosing cervical cancer, can’t tell anything about endometrial cancer (unless, perhaps, the cancer is so advanced it has invaded the cervix and hence malignant cells are picked up in the sample). In fact, there is no non-invasive screening tool to pick up endometrial cancer, which is a disadvantage for those of us with the condition. Most of the time, women figure it out relatively quickly because of unusual bleeding. But it does not always work that way, or not always early enough. All my Pap smears always came back negative.

Since my bleeding was persistent, I had a transvaginal ultrasound which showed that my uterine lining was abnormally thick, but that wasn’t determinative either. Fibroids and other problems can produce that, too.  I could have had an endometrial biopsy at some point, but I declined because of timing. (Turns out that the gynecologist I saw who offered that procedure also prescribed estradiol to help control my bleeding, per my request. In my circumstances, given the estrogen-positive nature of the tumor I had, that was akin to throwing gasoline on a raging fire. But I digress.)

Eventually, I had what is colloquially called a D & C, for dilatation and curettage. Under anesthetic, the patient undergoes a dilation of the cervix, normally a painful process in its own right, to an extent large enough to allow the medical practitioner to use a curette to scrape off the lining of the uterus, enough to get a good sample to biopsy. For me, the process will always remain a little comical, despite the bad news it eventually delivered: I had propofol along with some other drugs to produce a “conscious sedation.” I didn’t realize until afterwards that it also was known to produce feelings of euphoria. So I went into the procedure convinced that everything would be absolutely hunky-dory. Not a bad attitude, I guess, notwithstanding its comparative artificiality.

Along with the D & C, I had a hysteroscopy, a procedure in which the doctor is able to use an endoscope to look around the interior of the uterus, thanks to the dilated cervix. There’s apparently some concern that the process involved—using a sort of saline solution to distend the uterus—can sometimes flush malignant cells into the peritoneal cavity, but it doesn’t appear to have been a factor in my case.

It was the tissue obtained by the D & C that produced the original pathology report of endometrial cancer, a grade 2 endometrial adenocarcinoma. As cancer types go, I was fairly lucky; the other versions of endometrial cancer tend to be more aggressive and resistant to treatment. But the day I received the bad news of the cancer diagnosis, I also had one more test: a chest X-ray. It took me a while to figure out the notation on the order, but eventually I deciphered it to read “rule out lung metastases.” Starting about then, I realized just how serious and scary this whole process was going to be.

The tests I’ve had since diagnosis have been far less intrusive than the D & C, with one exception: the hysterectomy, etc. (Technically, I underwent a bilateral oopherectomy and salpingectomy as well, along with the removal of several lymph nodes in the pelvic and para-aortic regions.) Going into the surgery, I had a clinical diagnosis of Stage I--that is, there were no detectable signs that the cancer had spread beyond my uterus. Unfortunately, the surgery revealed that the cancer had actually spread quite a bit, into the cervical tissue, almost all the way through the wall of the uterus, and to several lymph nodes, including two in the para-aortic region. That was tough and dismaying news, not otherwise obtainable.

I’ve had several—eight, if I remember them all—CT scans since the surgery. The first established a baseline (and included some spots that were “concerning” in retrospect, because they eventually grew, even after chemo) and the later ones showed the success, or lack of it, from later treatments. When I had the first clear scan, back in June of 2012, I was indeed convinced (on some level, even if I wouldn’t admit it openly) that it would show the lesions had disappeared. I have no idea on what I based that conviction. The frequency of the CT scans has now dropped to bi-annual from quarterly, and after the next one I expect they’ll drop to annual. I need to decide relatively soon whether I will want them even at that increased interval. We’ll see.

Besides the scans, I have had lots and lots of blood work done. Most of that has not been diagnostic, per se; the most crucial tests were those taking place when I was undergoing chemotherapy. After the first treatment, I developed a serious case of neutropenia and wound up hospitalized with neutropenic fever, since my neutrophils were close to 0. (Normal is somewhere around 1500, and it’s not good if they’re lower than 1000.) It was obviously a good and necessary thing to have had that monitored, but it had nothing to do with the cancer itself.

There is a protein marker, CA-125, that is used quite regularly in assessing the progress of women with ovarian cancer. It is now being seriously considered for use as a screening mechanism, with all the associated controversy regarding false positives and false negatives. Some gynecological oncologists also use it with their endometrial cancer patients, with varying results. The normal level is below 35, more or less.  I’ve heard of endo ca patients with levels in the high triple digits, which generally does indicate a serious disease state. Mine never went above 16, even at my worst. On the other hand, it has dropped since I entered NED status, and so it appears to be some sort of indicator of health for me. Again—we shall see!

So, in the overall scheme of things I have come to place a fair amount of trust in these tests I’ve undergone. Some of them have been less conclusive than others, though I don’t think I’ve had one that ever suggested I didn’t have a problem. But again, that’s not always the case in the aggregate. Stories of false positives and negatives abound in my support group and in my (other) online groups.

What do you feel comfortable sharing about the tests you’ve experienced, and the tests you’ve forgone? Do you think you have a good cancer-o-meter yourself? How have you balanced the possibility of getting information from tests against the risks that the tests might entail?

Thanks for contributing your thoughts below.

Extended (Optional)

Originally posted to Monday Night Cancer Club on Mon Nov 18, 2013 at 05:00 PM PST.

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