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Sunday, June 5, 2011

The fear of recurrence and other side effects

About 3 months ago, I had an appointment with my Ob-Gyn. Now this may be TMI (isn't this whole blog TMI???) but the reason I went in was that my period had come back WITH A VENGANCE. I suppose after not having a period for nearly 9 months it's not unexpected to have the floodgates open, so to speak. But it freaked me out--especially because 9 months prior to my cancer diagnosis I had had surgery to remove some fibroids that had caused serious bleeding issues to the point where they had to infuse me with 3 bags of blood prior to my surgery to get my hematacrit & hemoglobin levels to the point where they could do surgery (yep, I was that bad off--if I was alive a century ago I'd be dead by now -- and not from the cancer but from the fibroids).

Anyway, during the ultrasound of my uterus a spot was found on my ovaries. It could have been simply a residual spot from having recently had my period. Or it could be a benign cyst. Or a malignant tumor.

When I met with my gynecologist, he wanted to see me in another month and repeat the ultrasound because given my recent cancer history, he thought it was better to be on the safe side. And the good news is that when they repeated the exam, the spot had disappeared.

Was I worried? Not terribly. I suppose I figured the law of averages would kick in--like, I couldn't possibly be diagnosed with ovarian cancer less than a year after being diagnosed with breast cancer, right? And I tend not to worry until I need to worry--at least not consciously worry.

But the truth is, I am afraid of recurrence. How could I not be? The tamoxifen treatment that I'm on has certain side effects and risks associated with it--namely the risk of developing a fatal type of uterine cancer. The percentage of women who develop this type of uterine cancer while on the tamoxifen treatment is very small--certainly statistically smaller than the advantages to being on tamoxifen for 5 years. So I take this daily pill and hope for the best.

Yet it freaks me out to think that my body, in reaction to this hormone therapy that is supposed to prevent the original breast cancer tumor cells from spreading to other parts of my body may, in fact, be creating new types of cancer cells in my uterus. And when I say it freaks me out, it's not like I want to get a hysterectomy or that I worry about it every day.

But when I read this report in The New York Times last night, I was first of all very glad to hear that tamoxifen and other treatments that they give to women after a breast cancer diagnosis are now being used to prevent breast cancer from every occurring--that these drugs are being used as a preventative, prophylactic measure.

However, it was a jolt to read that among the serious side effects of tamoxifen are blood clots--and of course the National Cancer Institute has a Question & Answer page that lists, clearly, what the negative side effects are--and right there are blood clots, strokes, uterine cancer, and cataracts.

How can I police my body for these issues? Should I wonder every time I feel a tingling in my arm? A cramp in my abdomen? A blurring in my eyes? I don't want to turn into a hypocondriac. And quite frankly, uterine cancer can be very hard to detect early since we don't have access to our uterus--I can't really see or feel it, except once a month, and then that's in the form of cramping--it's not like I can check around for a tumor by reaching inside my body and feeling around. I did get a baseline reading on my eyes from the wonderful folks at Carrboro Family Vision and the amazing Dr. Jason Chow. So far my eyes look like the eyes of a healthy 41 year old woman (meaning, I probably need bi-focals in 4 years, but that's part and parcel with aging).

I guess I'm musing about these things because I think, in part, I have to live my life the way I lived my life prior to getting my cancer diagnosis--meaning, I can't worry about every little ache and pain. I can't worry about whether the cancer is going to come back on a daily basis. It might--and my follow-up appointments with my surgeon and oncologist and my regular physical with my primary care physician and appointments with my gynecologist, should be maintained to make sure that I'm doing OK. But I think I have to try to live with the fear of recurrence without letting that fear take over my life.


  1. I wonder how I will deal with this part of surviving cancer. I have one friend who panics at exposing herself to smells, fears getting head colds, I don't want to go there. Part of life is living with the fact that you will come down with stuff and one day die. I want to actively participate in my health without over doing it in the fear department.

  2. Hi Melly,
    I know exactly what you mean. I try to be cautious (maybe overly cautious) about certain things--like door knobs and airplane trays (those things are chock full o'germs). But in general, I want to live my life without fearing that I'm going to catch a cold (if I get a cold, I'll suffer through the consequences) and I certainly want to live my life without second guessing every ache and imagining that it's bone cancer (sigh).

    I just don't want to live my life in fear and anxiety, ya know? But how to calm that voice in the back of my head...ahhh, if you discover a way to do that, I'm all ears!

  3. I think life calls for trust. For as must as I think it is easy to sit within the space where worry is evident, I also think it is an adventure to embrace the ambiguity in life. Worry is a much more well trodden path, so we know how and where is progresses and leads, it is easy to go there, almost like keeping a daily calendar and checking it to make sure you are ticking off the next thing. Ambiguity is more like actual life, if you know what I mean, it twists and turns and presents new and interesting paths, weather of not we participate in it. So why not participate? Why not let go of the worry, when worry seems to be a projection and not quite a reality.

  4. The fear factor follow you for sure and you don't have a way out wither.It is just counseling that helps understand sometimes when the thoughts and worries go our of is a natural reflex I feel.

  5. Melly & breast reduction surgery,
    Thanks for your comments--I didn't realize I had comments that needed moderating or posting until today--OY! Anyway, I really appreciate your thoughts about the ambiguity of life and trying to let go of worry--a natural reflex as you noted, but one that we can try to combat.