Trying to Move Beyond, but can't...
Comments
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Laura,
When I went to pick up my mammogram films to take with me to the surgeons office and saw the report - I knew something had to be missed on my previous mammogram. Yes,it had been 18 months between them due to some other surgery, however, I don't believe a 3.5cm BC was not there 18 months earlier! Also, a few years prior they had me come back for additional views because of some calcifications - well, those calcifications were still there but now it was invasive. A different radiologist read the last mammogram.
I agree with you on the breast exams we get - it is as if they are afraid to touch. I've often thought you would have to have over a 3 cm. cancer for them to feel that anything was there.
There are lots of us that have frustrations. Right now my breast MRI they said was ok but there is a cyst there and he wants to keep an eye on the cyst. When you read the post above - you understand why.
You know, we are the ones that put people and/or doctors on pedestals. They are only human too; they can have bad days - sick themselves, overworked and tired and problems at home that just like everyone else. I
can do my best to understand some errors but the part about the exams just drives me nuts!!!!
Brenda
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Hi,
I actually felt something in my breast. I told my doctor who said it was nothing. A year later I found it again and it was so much bigger.
I was upset at her for a while. I called her and told her what she had done. She apologized. Sometimes I wish I had sued her. I ended up doing chemo. Chemo is what I wish I had not done. I had actually forgotten about it until I read this thread. So, if you don't sue at least let that doctor know of the damage he did.
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This topic has given rise to so many thoughts.
I remember reading about my 3 cm tumor and thinking what the hell? That's like a golf ball, where did that come from! But is it like a golf ball? Or is it like a post-it note, or like a rubber band? Are tumors round, or can they be flat or stringy. When they give the size, surely they are giving the maximum dimension. What shape are the cursed things?
I used to work with doctors. One I was very fond of, and he told me this story. He had a patient who asked him about a mole she had. He told her not to worry about it. It turned out to be skin cancer. She went back to him and told him that she didn't blame him, thought that most doctors would have said the same, BUT she didn't want him to be her doctor anymore. He told her he understood. This happened fairly early in his career, he was one of the most patient centered doctors I have ever known.
I'm not a big fan of lawsuits, and I have worked in quality assurance and risk management in hospitals. A carefully written letter gets far more attention than most would believe. I think it might actually be more effective than a face to face meeting. Make it "more in sorrow than anger". The thing about a letter is that someone can get past the initial defensiveness and go back to the truth.
However if you do want to sue DO NOT write a letter or do anything else without your lawyer's advice.
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Hey Laura, one of my Lobular sisters
I too had been getting my yearly mammos religiously with ultrasounds(I insisted on US since I had extremely dense tissue) and was going to my annual ob-gyn exams on January and mammo/us on July, thinking that by spreading them out I was on top of it all.
Plus I did to self exams maybe not every month but certainly every 3 months.
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But as you know the lobular does not manifest itself as a lump until it is usually 5 cm,it does not appear in the mammo either. It presents more like a thickening of the tissue(which I had felt 3-4 months before my dx.. but did not think about it much, since I was looking for a lump and it was just a thickening)
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Then Mammo showed 2.1 cm, mri showed 1.8 cm.. and the surgery pathology showed 2.5 cm.. so this Lobular is really sneakier than the Ductal.
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The diagnostic tools are not effective for this kind unfortunately.. and the lobular can not be found with a self exam either until it presents itself as a lump.
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Dont know what to say girlfriend.. since I am on the same boat too.
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Right after my dx, everything I read said "sheets", "hard to detect"...but recently, after reading through all the reports, it's identified as a mass. How could a 3.9cm mass in an A-AA cup be in a "sheet"?
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Hey Laura,
I think this is how it goes(read it somewhere).. lobular grows as a sheet and at one point(who knows what controls that ) the tissue around it surrounds it making it palpable as a mass...and that is exactly how mine went. I felt like my breast density increased 3-4 months before they found it( hey !!! it got perky I was happy, little did I know) , then suddenly it was a 2.5 cm mass/lump.which was NOT there before but of course the sheets were cooking in there for at least 5+ years I was told.
( I too was an A- cup, could not even find a decent push up bra for my pancake boobs.. and the 2.5 was able to hide in it too)
Sorry girlfriend.. I know with our luck we should have played the lotto ! At least we can say that there was nothing else we could have done to avoid it ( not like we skipped exams/mammos for 10 years and found out about it.. now what would hurt me personally a lot more)
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trigeek - everyone -
Thanks again...I can't tell you how much all the communication regarding this has helped me. Between the posts and the PM's, I am closer to a decision on how to handle this. I really appreciate each and every one of your opinions and advice. More are welcome...
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Thanks trigeek for your explanation.... I was sitting on the sidelines reading this thread and wondering the same as Laura. I didn't post to my sweet sister since I was upset and didn't want to inflame an already upset Rockin' sis.
Laura, that sheet explanation doesn't sound like "sheet" to me ... kinda makes sense. I sure was wondering how it was possible ... mine was 1.3 then final said 1.7 and we felt in my D cup.
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During my CBE, my internist laid her hands right over my lump, palpated and withdrew them quickly. From that point forward, she acted differently. Why she did not tell me she felt it, I do not know. Maybe she did not want to deal with an hysterical patient. Maybe she had reasons beyond that, personal reasons, and felt she was capable of making a decision about whether to tell me or not. I requested an annual screening mammogram and that was set up. However, that was on 12/23 and holidays soon came and left and before you know it, it was end of January. Then my brother died tragically and I was beside myself. In mid March I called her office requesting another HRT due to breakthrough hot flashes. It was then that she said I must go in for mammogram, that she would only call in 1 month worth of another HRT. I thought that was kind of weird, I had to practically insist on a mammogram and now she was the one saying I had to have one.
I got a mammogram 3 months later and the poor radiologist had to break the news to me. Then, she tells me "that malignancy has been there for years" on comparison with earlier studies.
Yeah, everyone makes mistakes. I hear ya. But there is more to it. And this is coming from a woman who has worked in the medical field for 30 years.
Doctors live very well off their salary. When they treat us, they are not doing us a favor, they are compensated handsomely for it.
One day, I will sit down and write her a letter. For the time being, I went into a web site that "rates doctors" and told my story about my experience with her, how she left a message after I was told I had BC by the rad, to "come in to her office tomorrow if I need to talk about it." This was left by a receptionist.
There are plenty of doctors. And word of mouth is the most powerful tool we have to spreading both good and bad news.
I only hope doctor's negligence are not the cause of my early demise and not my own actions.
There is an element of responsibility on everyone's part and I do believe that we have a right to 100% quality care by physicians and their support staff.
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Thanks Wendy and Rock -
It's so disheartening...I know mistakes happen, no one's perfect, so on one hand I understand this and life goes on. But on the other hand...I've paid for my mistakes...shouldn't they?
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