Problem with doctor - VivianT

Oh No Associated with Invasive (Infiltrating) Ductal Carcinoma . Posted on September 8, 2012 View this journey (1 Experience)

When I was first diagnosed it was a shock. I had gone in every year for a mammogram and an annual checkup and was given the "every thing is fine " letter from the radiologist. Initally, I was told that the spots were small and in only one breast after a biopsy. I was assured that I was at a early stage. The surgeon and I discussed doing a Lumpectomy with reconstrutive surgery. The Surgeon then ordered a MRI. When I met with him after the results came back, he told me the spots were much larger (over 10 times larger) than he he first thought and in both breasts. When I asked why the results were so much different, he brushed my questions aside and never would answer me. A second biopsy was ordered for the other breast and another spot on the first breast. The results were that I had invasive breast cancer in the breast that the radiologist had said was cancer-free. I felt that I was living in a nightmare!
I was very confused as to why I seemed to get so many different answers. When I tried to get someone to explain why the size of the cancer and location seemed to change, no one would answer my questions. I was being pushed to set a surgery date and when I said that I would not set a date until I fully understood why the results had changed and what results could I trust - I was labeled as 'difficult'. I finally was able to talk to the surgeon and express my concerns and got answers, but it took awhile. I was told that I was harming my health because I was delaying the surgery, but I could not make a decision on what type of surgery with answers from the doctors! I ultimately decided to have Bilateral total Mastectomy - I realized that I could not trust the test results from the mammograms and never wanted to see another "every thing is fine" letter when I had cancer that they had missed.
What I have realized is that there are a number of doctors involved in the diagnosis but they don't actually talk to each other- they just sent reports. The patient gets the short end of the stick.

1 Comment
  • Lindy's Avatar

    Vivian, how stressing and foolish of the doctors. You were very smart to insist on a satisfactory dialogue before making your difficult decision. I applaud your "difficult" nature. You go girl!

    over 9 years ago

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