lack of responsilbilty triple negative breast cancer

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elleamelia
elleamelia Member Posts: 1
edited June 2014 in Stage III Breast Cancer

I was diagnosed with tnbc last feb, thought oh well negative must be good, was told I would only need radiation, So when sent to Oncol was shocked to find out it is the most aggressive type and that I would need both chemo and radiation, so got on with it. then had all the tests bone scan ultra sound. treatment started july Fac. then started getting chest pain so it was stopped also had ultra sound abdo report was devastating was told and read the report that I had masstassis of the liver and given 6-12months to live also they changed my treatment which started again end august or begining sept. then had a ct scan and was told not you do not have liver masstassis. but I had had to tell all my family what was going on so you can imagine how everyone was feeling. then fac started again. then had 3 treatments of taxatare(which is awful) which gave me CNS. finished treatment not trusting anyone now I mean it is in your head are they right or are they wrong with the diagnosis. then in Jan this year had another ultra sound by a different doctor guess what yep I had again more liver masstassis. well our world fell apart(I was in canada at this point living there, so had to stay to finish radiation. came back to Uk 2 days after radiation. Have a really good Oncol now and she arranged to do her own tests. and really understands that I actually dont rust anyone anymore. she even arranged for me to have a special test on my live, by a brilliat man really nice patient and expalined everything to me and said that the liver masstassis was actually a shadow being thrown from calcification from another area and that I did not have liver masstassis. even though I could see what he was saying i still feel a bit lost and not totally confident. also I have to ask myself well were is this calcification shadow coming from. yes there is always a fear that the cancer will return that is what happens with cancer anyway this is to try and let people know be your own advocate i feel you have to with this love all x

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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2011

    elleamelia, your story illustrates that there's a wide discrepancy in physician competence and expertise, as well as the benefit of getting multiple opinions.  Unfortunately, we're conditioned to believe that doctors always know what they're doing, which, sadly, is not the case.  You are so right about being our own advocates, which means taking the time to educate yourself about your dx.  Beyond that, I would say always listen to your gut feelings about what you're being told.  If it makes you the least bit uncomfortable, take the time to get a second opinion and even a third opinion, because not all doctors have equal knowledge and experience.  

    I'm glad to hear that you finally have a really good onc, and I'm glad you've found BCO.   Deanna    

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited April 2011

    Wow, I'm so sorry you've had such a long, hard road.  I'm glad you finally got a dr you can feel reassurance in, even though I know there is still some doubt.  We all go through that I think, I'm in the same boat right now.  Rad dr told me scan was fine, onc dr said they see spot on my liver and want to do more test.  Rad dr thinks she's going overboard and it's nothing to worry about.  And yesterday I picked up some paperwork for a referral and I was reading it and it had me at stage IV with all this other info that wasn't my dx, my heart sunk and I went back to ask dr what is going on, come to find out she gave me another patients paperwork.  Who do you trust...I was even told mammo was fine and as we see now it wasn't.  I had to be my adovacate and push for a biopsy b/c I knew it was something.  They were my breast for 34 yrs and I know them better than anyone else so I agree with you completely.

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