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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.

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.

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

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Comment Preferences

  •  Hmm, I wish I were better at designing polls. (4+ / 0-)
    Recommended by:
    Sara R, cfk, ZenTrainer, karmsy

    This format won't allow for multiple selections, but perhaps I could have asked about something like--the most important or useful test, or the most disagreeable one. So please consider those as topics to which you could respond as well.

    I am a little scattered tonight, I will admit up front, even more than usual. Last Tuesday, I brought a kitten home! Long, complicated but ultimately satisfying story. Except that our darling kitten has a bad cold and a fever. Fortunately, I was able to get her into the vet today, where she was tested for all kinds of serious things (all negative), and where she also received a couple of different kinds of antibiotics. It has set me back tonight on multiple fronts, and soon I expect to be typing one-handed again when the kitten returns from her temporary exile/haven with my daughter.

    But of course I will still be very interested in comments and will respond as soon as I am able.

    Stay warm and dry, everyone. We have our first snow here tonight, and it's supposed to get into the low 20s.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Nov 11, 2013 at 04:52:50 PM PST

  •  Take Two! (7+ / 0-)

    A week later, I think we're really good to go this time.

    My thanks again to PhoenixRising for her report last week on the positive changes produced by the ACA for her family, one with two adults who are cancer survivors.

    The kitten is almost all well, fortunately, and full of piss and vinegar. Maybe it was a good thing she was under the weather for a while since then we humans had a chance to adjust.

    Today we took the two older cats to the vet. It's always an expedition because the bigger one (only 14 pounds but it's all cat) HATES to be in the car. A 15-minute drive, and she soiled herself thoroughly. So it was bath time for her just now.

    For whatever reason--perhaps because they each need a claim to some neurosis?--the other older cat is completely wigged out by the vet and acts as though she's never seen the other cat in her whole life, even though they've lived together without separation for over six years. Cats!

    But enough feline foolery for now. Back to the more serious matters at hand. I'm looking forward to dialogue about the myriad of tests you may or may not have had, and how well they have done by you.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Nov 18, 2013 at 03:45:35 PM PST

  •  Hello, I missed you (6+ / 0-)

    PK, I hope all is well. Everything is great here.
    As I always point out, I was never "diagnosed" with cancer. I knew I had a tumor, I finally went to the doctor and was able to get a CAT scan (Why, look at that, right where I knew it was!).
    However, my blood work fooled them and the news I got was: Well at least you don't have cancer!
    Surgery was all it took to take care of me, with seven months of chemo to make sure.
    It's almost 10 years...I'm happy to be that statistic.
    Love to all, you are always in my thoughts. Trust your instincts!
    Insurance used to try to deny my yearly screenings. Now they don't care because I have to pay anyway under my newer and crummier insurance deal.
    I'll make it to Medicare age and piss them off.

  •  I wrote a really great comment on this LAST week. (4+ / 0-)

    Wish, I'd saved it in word!

    I go for my blood work this Friday and to chat up my oncologist. I'm trying to decide on insurance plans under the ACA.

    It looks like it will be unaffordable because TN did not accept the Medicaid part. I am a little against insurance in the US anyway as it doesn't cover the kind of medical care I prefer to receive. Or the herbs and homeopathic meds I take.

    So I wanted to ask my oncologist if my cancer comes back will it be breast cancer? If so I'll be covered by TN Care our state health insurance. If not? Well, maybe I better get insurance.

    Monday I get my 4 month check up from my surgeon. I will have my 4 month discussion on how no, I don't want a mammogram. My cancer didn't show up on it the first time and it could be harmful. I'll take an ultrasound instead please.

    My oncologist is not big on any kind of tests. He says so much stuff shows up that freaks people out when there is really nothing to worry about.

    For me a Cat Scan and MRI seem unnecessarily risky. But that's just for me.

    Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

    by ZenTrainer on Mon Nov 18, 2013 at 06:20:27 PM PST

    •  That has happened to me too (3+ / 0-)
      Recommended by:
      joemac53, ZenTrainer, outragedinSF

      even when the diarist didn't mess with the diary! ;)

      I will be thinking good thoughts for you on Friday.

      Damn those reactionary states refusing the expansion. If there is a clearer example of the "cutting off one's nose to spite one's face" saying, I can't think of it.

      And yes, it is not unusual to have the mammogram show nothing untoward. Not good to have a false sense of security, either.

      Tests are a mixed bag, to be sure. I wonder how healthy I would have turned out to be on all these tests (the general CT scans in particular) without the cancer. The radiologists used to come up with something, every time.

      I think I may be approaching my personal limit on CTs. Not sure yet.

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon Nov 18, 2013 at 07:01:25 PM PST

      [ Parent ]

  •  Ah, it's not a cancer-o-meter... (5+ / 0-)

    ...there should be a "Cure-o-meter".

    I've been in remission almost a year now.  I feel OK, but I still have lingering neuropathy and I still tire easily.

    I had my 6-month checkup and a colonoscopy over the summer, both with a clean bill of health, but it's hard to tell how I'm doing, how I'm supposed to be feeling, whether or not any of this is good, bad, or indifferent.  

    It's still the not knowing...did they get it all?  Will it come back?  Will there be something else?

    And now any unexplained pain, stomach upset, twitch, twinge, or anything else is cancer again, isn't it?

    I prefer to remain an enigma.

    by TriSec on Mon Nov 18, 2013 at 06:49:29 PM PST

    •  I like that reframing to "cure-o-meter"! (2+ / 0-)
      Recommended by:
      ZenTrainer, outragedinSF

      Thanks for suggesting it.

      The neuropathy and fatigue suck big time. Fatigue for me is still a major interference with my life.

      I know what you mean about those twinges. Almost doesn't matter where it is in my body--my right middle finger, really?--and I'll worry for a while. Pointless but hard to overcome the habit.

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon Nov 18, 2013 at 06:57:28 PM PST

      [ Parent ]

    •  Yes, so far I have gone to the oncologist with (4+ / 0-)

      what I suspected was cancer of the butt - I pulled a muscle.
      And cancer of the teeth. Don't know why, my teeth just hurt and I think everything is cancer. Doc thinks I'm funny.

      Oh and at the end of the day that spot on my back where my bra fastens hurts. (I hate bras.) I think this is cancer of the back.

      Hey, maybe I'm getting better. I have chapped lips and I don't think it's  cancer of the lips.

      I think I spent 6 hours out in the sun and wind and as a result my lips are chapped.

      Progress.

      Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

      by ZenTrainer on Mon Nov 18, 2013 at 07:01:32 PM PST

      [ Parent ]

  •  Do I have to study for this test TOO? (3+ / 0-)

    I HATE studying for tests.  Besides at my age I forget half the answers anyway.

    Oh wait, wrong kind of studying or is it wrong kind of testing? does it matter? cracks up

    I have had more tests than I care to remember (we all have) but I do remember those first few like they happened yesterday.  that very first CT Scan in February 2012, my First PET Scan, the 2 bronchoscopies that were performed.  the blood draws done after every chemo cycle, the 2nd PET Scan AFTER chemo was done then there is  the blood work done just before all the 3 times surgery was scheduled (3rd time we finally got it done).
    I have had 2 CT Scans since too.

    AND now I get to "train" a whole new batch of doctors beginning this Wednesday when I meet the man who is going to be my PCP (at least for now) no doubt MORE lab work will be happening.  

    I don't think I have ever refused a test (So far) although I have no doubt there very likely will come a time when I do refuse.  

    Although just now thinking about it, I was offered having a fine Needle Aspiration (FNA) procedure being done instead of a Bronchoscopy as a choice between them and I of course decided on the Bronchoscopy since there is a reduced risk of a lung collapsing with a bronchoscopy compared the risk with FNA,  to me that was a no brainer.   LOL

    Now about that kitten PK, enjoy it wifey got one just before she flew out in October. Ours has been a barrel of fun, even the dogs have a raucous time with her she chases ghosts has focus issues when she first looks at you, wobbling her head all around for a sec then looking at you. One crazy kitten.

    My brand new chest oncologist who I will get to meet in January wants me to get the full scanning battery before we meet.  So in the coming 6 weeks I will be getting the big 3 , PET, CAT and MRI! wooo hooo

    They promise me that they would not leave me glowing so brightly that the Christmas tree would be jealous but I am a realist, so ya never know about that radioactive fluoridated glucose, ya know? L

    I have decided not to worry about the side effects of all this scanning and what it could do to my body. After all what can it do to me? give me cancer? I already got that covered on my bucket list, ya know?  winks

    as you can tell I am in a "MOOD" obviously. laughs

    Life is not a problem to be solved but an adventure to be experienced.

    by DarkHawk98 on Mon Nov 18, 2013 at 08:34:53 PM PST

    •  Yeah, I hear you about passing. (2+ / 0-)
      Recommended by:
      ZenTrainer, outragedinSF

      Talk about high-stakes!

      You have had a helluva lot of them yourself. Isn't that something? And now you get a whole new round....

      I hope that the new set of docs does as well by you as the first set seems to have done.

      Our new kitten is adorable but mischievous as all get out. We don't have things kitten-proofed well enough, and the two older cats are kind of cross, so she's in our first-floor office when we're with her. When we're not, then she's in a large dog cage in that same room. Now that she's feeling better, she is rarin' to get out and see the world! or at least the world outside this door.

      I still think it's totally, totally unfair for people to get two primary cancers. But it happens.

      Nice to see you in a mood. Hope you have a good holiday next week!

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon Nov 18, 2013 at 08:50:33 PM PST

      [ Parent ]

      •  thank you PK (3+ / 0-)

        It sure sounds like you are well on the way to having a well trained kitty, as for the other 2? they will figure out a way to tolerate the young punk, older animals always do.

        My Harley has even started to play with our kitten and he is an old goat of a dog at age 12.  LOL

        I too hope that this new set of docs does me as well as the last set.  We will just have to wait and see how they are.  fun times. training a whole new set of docs to my way of life.  LMAO

        I hope that Thanksgiving is as good for you as it will be for us, we will be with the in laws fortunately they only live about 10 miles away so it is a quick jaunt to their place.  

        To everyone else I hope that this year's Thanksgiving brings them happiness and joy.

        DH98

        Life is not a problem to be solved but an adventure to be experienced.

        by DarkHawk98 on Mon Nov 18, 2013 at 10:29:11 PM PST

        [ Parent ]

    •  You know how people put bleach in the water (3+ / 0-)

      to preserve their Xmas trees? Maybe you could use radioactive fluoridated glucose. Just a thought here...

      Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

      by ZenTrainer on Mon Nov 18, 2013 at 10:19:25 PM PST

      [ Parent ]

  •  Thanks for such an honest share, PK. (3+ / 0-)

    Lots of information on all the tests, which I'm sure will be very helpful to those in need of it.

    I shared my tests/biopsies a couple of weeks ago, as you know.  But your diary reminded me of a conversation I had with my urologist after I was diagnosed.  We were discussing the protocol of quarterly testing and periodic biopsies and he mentioned the importance of "keeping up" with the testing regimen.  "Of course" I thought, and my doc seemed to pick up on my casual commitment to the schedule.  He then said something that kind of startled me - "Some men just go forward with the surgery because they get 'PSA fatigue', they tire of having to keep getting tested."

    At the time, I thought "well, that's not me."  Going in for blood tests and the periodic biopsy didn't seem that taxing to me.  Still doesn't.  But it's not the testing that causes the fatigue, it's the worry.  Will this time be when my scores spike?  Will this biopsy change my Gleason score?  That worry is a burden, as you mentioned.

    I'm due for my quarterly PSA again this month.  Since my last score was so good, I find my inner voice saying "can I just keep my last score forever?"  Heh.  Doesn't work that way, does it?

    "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

    by outragedinSF on Mon Nov 18, 2013 at 10:40:58 PM PST

  •  Just had a CT scan (0+ / 0-)

    yesterday as a follow-up to my nephrectomies. They used contrast as since I'm on dialysis, it should not hurt what little kidney function that I have left.

    Wow, that hot flash. And the vomiting... At least it helped me keep my fluid weight gain down?

    Though there are risks to using contrast with ESRD, the knowledge that all the cancer is gone for now is well worth the risk for me.

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