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Against Breast Cancer

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Posted by Jackie on 2/23/2001 from 24.23.179.195:

Here's my lil' saga -- I'll try to keep it as short as possible.

In 1996 I had a screening mammogram for breast pain. Dr. said I had fibrocystic breasts and cancers are harder to detect, I should get routine mammograms earlier. This one came back fine. Dr. said have another one in 5 years. Jan 2001 - Have my routine follow up mammo. Get a call from my Dr. few days later, she tells me findings are "extremely complex" need to have another mammogram in 6 months to monitor. By the way, Hospital can't find your films from '96. During the hassle of fighting with radiology over my lost mammo films (also discover they lost a MRI of my brain from same year) I have them fax me both reports. 96 reports says "no focus of microcalcifications" 2001 reports not only says "extremely complex" but also indicates "numerous bilateral microcalcifications" ACR 3 - Probably benign. Don't know about you, but in regards to my health I don't like seeing the word "probably" in front of a word like benign. I much prefer the words ABSOLUTELY BENIGN.

Anyway, go to two surgeons who basically make me feel like a hypochondriac and pooh pooh any concerns I have as well as all the research I've done into microcalcifications and why they can sometimes be a cause for concern. The second surgeon (at a well respected local cancer center) tells me if I twist his arm and insist, he'll do a biopsy.
He also says I'm "being crazy." I twist his arm but he instead sends me to a radiologist who also makes me feel like a hypochondriac for insisting on this procedure but none the less consents and performs a Mammotome on both breasts. 16 cores are taken from my left breast (far fewer microcalcifications in that one) and 12 cores from the right breast (chock full of microcalcifications). During the procedure, all of the cores from each breast are dumped into a specimen container together. One cup for the right, one for the left. My husband witnessed this as they allowed him in the room.

Two days later I went back to the radiologist (but was seen by an intern) because my right breast was horribly bruised, swollen, painful, hot and hard. I was given antibiotics and sent home. I was told to call back if the symptoms got worse. I called later that evening because the pain intensified. The radiologist spoke to me twice that evening. The first time she said wait and hour and see if it gets worse. She called back in an hour -- the pain was worse -- she sent my husband to an all night pharmacy to pick up a second antibiotic and stressed that I take 2 of them before going to bed and see her in the morning.

By the next morning I was in agony. She did an ultrasound (which was unbelievably painful!), she and the intern pointed to a black mass on the screen (again, thankfully, my husband was present), looked at each other worriedly, left the room, huddled together in the hallway with another doctor and two nurses (again husband witnessed it) and returned to inform me that the surgeon wanted to see me at the hospital right away and how fast could I get there. Within 40 minutes of arriving at the hospital I was rushed to emergency surgery for drainage of a hematoma that was the size of an orange! The surgeon informed my husband afterwards "there was a bleeder." This was two weeks ago, I still have a hard rock the size of a walnut in my right breast and a smaller one in my left, both at the biopsy sites. My husband was told this was the first problem the surgeon had seen like this in 11 years and would probably be the last he sees in his career. Small comfort for me -- I'm unique -- I'm 1 in 500 - yippee!

Then when I received the Pathology report there was no indication as to how many slides were studied or how many sections were taken. The results were apocrine metaplasia, fibrosis, adenosis, and intraductal hyperplasia. I contacted the Pathologist to ask what degree of hyperplasia they found and she said she would have to review the slides. I never heard back from her and later requested my specimen be sent to Johns Hopkins for a second opinion. I received the second opinion report today from Johns Hopkins which indicated my hospital sent them ONE slide from each breast. One of the slides did not even contain a microcalcification (which was why the biopsy was done) and the other did not contain the hyperplasia which I wanted to determine the extent of (mild, moderate, florid?). Is there someone who can tell me what is a normal amount of sampling for a breast biopsy? I'm angry on the one hand that I've had to get this involved in the process and I'm also angry that if they took out that much tissue (12 cores from R breast, 16 cores from L breast) and then made 2 slides, 26 pieces of my breast tissue went to waste!! Not to mention the pain and suffering AND EMERGENCY SURGERY I've had to endure as a result of this "routine outpatient procedure". On the other hand, I wonder if I should take this as a good sign (since no cancer detected) and leave it alone. I just haven't been able to ignore this nagging voice in the back of my head that tells me the first pathology report is not as detailed as I've read in breast cancer resources that it should be. After all, if there's no indication as to the level of hyperplasia in my reports now, how will I know in the future if it has increased?

Any help you can provide would be greatly, greatly appreciated. Even if it's in the form of websites to visit for more
information or a pathologist you could recommend I speak with directly. I plan on contacting the original pathologist again to ask how much of my specimen was sampled and why they felt it adequate to send JH only two slides, but I don't know what other specific questions might be useful to pursue.

Thank you so much.

Hmm, not so short after all! :) Anyone know a really good malpractice attorney in Virginia???

Follow Ups:

• Re: Breast biopsy nightmare -- please help! - Terri   2/25/2001 (1)
  • Re: Breast biopsy nightmare -- please help! - jackie kopp   2/26/2001 (0)
• Re: Breast biopsy nightmare -- please help! - Terri   2/25/2001 (0)

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