A Powerful Precautionary Tale

I am going to draw a slightly different conclusion.  I think it's important to listen to your gut.... but only to a point.  

What I think is more important is that you ensure that your concerns are not dismissed by your doctor and that any concerns you have are thoroughly checked out.  If you are not comfortable with the findings, get a second opinion.  However, once you've been thoroughly checked with whatever diagnostic tests and/or biopsies are necessary and appropriate, if everything checks out okay, then it's time to move on. That's the point when listening to your gut becomes harmful rather than helpful.

I say this because we see so many women come to this board worried sick and convinced that they have breast cancer. Most women who come here with a scheduled call-back or biopsy don't assume that the result will be benign - they assume that it will be breast cancer.  As it turns out, most of these women do not have breast cancer. When they hear that news, most are delighted and are happy to move on.  But on a regular basis we see women here who refuse to accept what all the tests show and who continue to worry, all because of their initial instinctive reaction that something is wrong and they have breast cancer.  

So to me the message from this story is to be your own advocate and ensure that any concern about any change in your breast is thoroughly checked out.  A simple "it's okay" or "it doesn't feel like breast cancer" is not enough.  Always be sure to get a more specific answer about whatever the problem was, so that you can be comfortable that the finding is correct.  And then move on.

Very powerful message with catastrophic results for this woman!

I think this is an important discussion.  I don't have the answer but I do know that for me, it has been a fine line between acting on my gut based upon reasonable information vs. acting on my gut based on fear.  

Here is my experience with the recommendation of waiting and coming to terms with whether my gut or my doctor's recommendations should prevail.

In December 2010, I was diagnosed with DCIS and had a UMX.  I have had several  surgeries and in November had a follow up MRI.  The MRI showed a small (less than a cm) growth on my sternum, which apparently had been there at my last MRI the year before.  The Rad. Dr. ordered a follow-up CT but preliminarily stated that it looked like a benign hemangianoma.  Well, I went to the worst case scenario that it was some form of mets, researching and researching and initially believing that a biopsy would be the only solution that I would settle for.  The CT confirmed that it was the benign tumor given some very specific characteristics seen on the CT.  Because it had been stable for more than a year, both the rad. dr. and my onc recommended a follow up MRI in a year (which I would having regardless, for surveillance purposes).  At first I was like NO WAY, I want to definitively know by biopsy.  But eventually, I went with the doctors' recommendation.  

What was most important for me in making this decision was, as Beesie stated, making sure that I was informed and that options were thoroughly evaluated in the context of my diagnosis.  I did my part by researching this type of tumor and being prepared with my questions when I met with the Onc. I brought my daughter along.  I also gave myself permission to seek a second opinion or third opinion if necessary if I was was uncomfortable with the oncs recommendation.  I know for some people, going to another doctor can be hard to do.  For me, sometimes I hesitate about this because I don't want to "hurt the doctor's feelings."  A good doctor will not have a problem with this and will sometimes encourage a second opinion.

I was surprised that after all that, I was quite comfortable with the onc's recommendation given the following facts:  (1) my diagnosis was DCIS and not invasive, which, by definition, cannot metastasize; (2)  the lesion on the MRI had been stable over the last year; (3) the lesion on the MRI had the definitive characteristics of the benign tumor (which I had independently researched this) and (4) a biopsy of the sternum is not without risk and (5) there was no guarantee that with this size and type of growth, the biopsy would generate anything conclusive for purposes of diagnosis.

Now, I know that only time will tell if this was the right decision for me but I have been able to proceed knowing that I made it with the best information available at the time.  

This is not to say that a doctor who fails to follow the standard of care or respond reasonably to patient concerns and questions should not be held accountable. Nor is it in any way to imply that patients are to blame when they rely upon their doctor's recommendation and the doctor's recommendation turns out to have very serious consequences to the health of and prognosis for patient.   If a doctor makes a recommendation and a patient relies upon that recommendation to his or her detriment, the doctor should be held accountable.  

I agree with others above - I am very thorough in checking out doctors and if I have that gut feeling and think I need or want a second opinion.  I interviewed 3 oncologists before selecting one and I can honestly say I was shocked.  Two of the doctors I knew within 2 minutes of being in there I'd not see.

Just recently finished treatment on Jan 31 and put on Arimidex around Valentine's Day and will be hitting my one year mark for dx on Apr 5.  I figured, okay now onto millions of tests, scans, etc.  Not so much.  My onc said that scans aren't as definitive for breast cancer and it comes with it's own negatives just from the stuff injected into your veins and the radiation from the test, etc.  He said we will do marker tests but even they come with false negatives/positives.  I'll be followed by my oncological breast surgeon, in consonance with my GYN and oncologist all together but mostly the surgeon/GYN using mammography, ultrasound or an MRI if needed.

Basically the oncologist said we get to the point where one can live ones life doing nothing but being tested, scanned and waiting for results.  I also feel so much more comfortable with the surgeon being involved because I view oncologists more as report oriented people that pretty much are experts that interpret pathology/blood issues and from there determine and administer treatment while the surgeon and GYN tend to be more involved and hands on during testing.