My Little Bs Have the Big C

A Breast Cancer Blog For Young Women

Fear Of The Unknown

8 Comments

 

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We all know what it feels like.  That feeling that there’s a secret that’s lurking in our bodies.  That dread that what can’t be seen or felt or known is hiding inside of us.  It’s inescapable.  The fear of the unknown.

I went for my three month checkup with my oncologist last week.  This was the longest separation I had experienced from her since the year and half I was diagnosed.   It was a routine appointment without incident.  I had questions about some side effects of the new medication I would be starting.  But my last question was about recurrence.

“How will I know if it comes back before I’m symptomatic?”  I asked because at my cancer center, they do not do blood tests for cancer markers.

Her answer was, “Well, we won’t know until you show symptoms like a cough without a cold or a persistent headache that won’t go away.  Then we’ll do some tests.”  And that’s it.  That’s all they can do.

I understand and even agree with the reason why they don’t do blood tests for cancer markers at my hospital.  My oncologist said that it hasn’t been the recommendation since 2006 and she and the hospital fully support that recommendation.  She said that this test creates too many false positives.  False positives result in testing which contain radiation.  Why would we want to subject our bodies to more radiation than is necessary?  Then, if there’s a false positive and we don’t see anything, we have to test again to see if anything changes in the next few months.  Then, how are we spending the next few months?  We are spending it filled with anxiety and fear over what might be happening in our bodies.  And that’s no way to live.

“But what if something is growing?  Don’t we want to know about it sooner rather than later,” I asked?

“It doesn’t matter if we catch it when it is small or when it has caused symptoms.  We don’t treat any differently.  You get the same treatment.  And early detection at stage four has not shown to affect or alter the length of survival,” she informed me.

So, what that means is, I could have a small dot in my brain and if we catch it early, we could treat it and I could die in a year. Or not.  But if we catch later, I’d get the same treatment and I could still die in a year.  Or not.

I spoke to my therapist about this recently.  I described it as like having a piano hanging over my head ready to plummet at any time.  It may never drop or it might snap after the slightest breeze.  Anything can happen.  We can never predict or know for sure.

And that’s terrifying.

But this is it.  This is how I live the rest of my life.  This is the gift that cancer has presented me.  A life of uncertainty.  I fear not knowing what is happening in my body.  The fear of not knowing what the next day will bring.  Because I understand that life can change in an instant. So I live afraid.  I live fearing the unknown.

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8 thoughts on “Fear Of The Unknown

  1. My onco ‘only’ does markers for stage 4 patients. She does them for me though, because I ask her to, even after all the recommendations (probably another irrationality of mine) . They do add a level of anxiety so I might actually stop doing them. It is true that once you’re stage 4, the outcome is the same no matter what.

    The uncertainties suck but I try to remind myself that they always have existed. No one can guarantee anything for any of us. That’s also my struggle.

    I like that quote.

    • I’m not sure mine would do it even if I insisted. But I wouldn’t insist. While not doing them causes a lot of anxiety, I can see how doing them could cause more. So I let it be. But you’re right. Uncertainties suck.

  2. Hi Carrie,
    My cancer center doesn’t run tests either without symptoms. Like you, I understand the logic, but it is still sometimes unsettling. I think part of the deal here is we have had that early detection is so important messaging drummed into our heads for so long it’s hard to start thinking in reverse, if that makes any sense. Of course, we all know early detection isn’t the whole story at initial diagnosis either, but that’s another topic. All I can say is, try not to live in fear. Believe me, I know it’s not easy sometimes. Thanks for tackling this topic. Many of us relate about that piano, or at least I sure do.

    • I think you hit the nail on the head for me. It’s hard to wrap my brain around the fact that early detection doesn’t necessarily mean survival. Mentally, it doesn’t make sense even though I know that this is the way cancer works.
      Thank you for reading! I hope you are doing well.

  3. How how I relate! I imagine we all (who are living with a cancer diagnosis) do. As a matter of fact, I have a cough that won’t quit, and while most of me knows it’s the same lingering cough people all around me have right now, that voice keeps wondering whether it’s metastasis. Tomorrow is two weeks so I’ll call my onc- that’s the guidance I’ve gotten: if anything persists for two weeks, call. It’s hard not feeling more monitored (really, no ongoing tests?!) but like you write, I don’t know that the alternative would be better for me.

    • I had a cold with a lingering cough as well. I actually didn’t freak out about it because I knew what it was and my son had the same thing. If it came out of nowhere and lasted, then I’d probably freak out. But I also had a lingering sore throat (probably from a post nasal drip) and that was freaking me out. Go figure!?! There’s no rhyme or reason to my insanity anymore. But the lack of testing, while it makes sense, leaves me feeling very uneasy.

  4. I also am going through the same thing. I am up to being tested every 6 months. I had asked my Dr if these bood test would tell if cancer had come back. He said no, you are. Watch for headaches, chest pain, and joint pain. so by the time it does show up it would be a stage 4. I have been in remission 2 years with stage 3 triple negative breast cancer have one more year and chances go down some. The unknown is a very scary thing to live with. I was recently diagnosed with lymphedema and found a wonderful therapist that knows exactly what I am talking about. wow I am not crazy. Mine right now is under my arm, it feels like my arm is asleep, with a lot of elbow pain, but this wonderful lady knows how to help me.

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