Trying to get up to speed - Need Info
DonnaOK
Member Posts: 1
Hi folks,
I've been looking all over the last few days and this seems to be the best breast board (BBB) around.
A little history. I was diagnosed with kidney cancer ('03) and thyroid cancer ('04). Been NED in both cases since then.
The first part of March, my husband and I were both sick with some sort of flu-like deal. As I was lying in bed, my right hand rest on the very top left of my left breast and I felt, plain as a day, a line of "lumps". My husband felt it as well. I seems to have a propensity for developing lipomas, so I thought that might be what it was, but I called my IM doctor and got in right away. (As an aside, my right breast has gotten decidedly bigger over the last few years - you can even tell from behind and it hurts sometimes, but I assume it's because of the heaviness. No nipply discharges or anything.)
She felt it and immediately sent me, orders in hand, to the local radiology folks, for a diagnostic mammo. On the orders, she wrote, "palpable, elongated mass", so surely that should get their attention. I had the mammo done, just the normal two views each breast and then an ultrasound. I left the radiology place (what do you call it??) with a sheet of paper that said basically, "no cancer". A week or so later, I got a letter from the radiology place that said, "no cancer". The palpable mass was not seen on either scan. I got a copy of my films and could see differences in my breasts. (I'm such a dork - I have my own lightbox.) This was mid-March.
Last Thursday, I'm sitting at work in a meeting and the phone rings. I recognized my IM's number and assumed she was calling to confirm my appointment for tomorrow to check my BP since it was sky-high when I was there with the mass.
WELL! It wasn't. She got the radiology report and said they recommended further evaluation? What the hell????? Didn't I get *TWO* documents saying all was good?? On Friday, I got ANOTHER letter from the hospital saying that I needed more followup.
I told her I would get it all scheduled and would see her for my appointment on Monday. She said she had already sent the order over to the radiology place.
After I collected my thoughts, I called and had the rad folks send me a copy of the radiologist's report. It says:
"There is a cluster of calcifications identified in the left breast upper outer quadrant central third for which magnification mammography is recommended for further evaluation. In the right breast, there is a large cluster of calcifications upper outer quadrant and a smaller cluster of calcifications slightly more anteriorly. Magnification views of the right breast is also recommended for further characterization of these calcifications."
So, my questions/comments/concerns are disconnected and I'm not even sure they're reasonable yet. All I know is that I want to go in there tomorrow in control with at least the outlines of a plan.
1. The word "clustered" seems to indicate possible trouble. Is that right?
2. There's a difference between calcifications and microcalcifications, with micro being the "scarier" of the two.
3. Having said that, is it correct that 85% of the time even the microcalcifications are benign?
4. Regardless of what they say tomorrow, if they should say it's benign, should I insist of biopsies anyway? If so, what type of biopsy?
Is there anything else I should be considering?
I've already decided that if it turns out to be a bad deal, both Lila and Lola are GONE! I would prefer to avoid chemo and radiation if possible. Hubster agrees with this as well.
I know it may seem like I'm jumping the gun, and I surely am, but I've got to go in with a plan.
After getting 2 "clear" letters and then a "need for more evaluation" letter, I'm a bit pissed and plan to go to the Radiology administration and complain. I may even write a letter to the state medical board.
Thanks for any help folks. I know you are a great bunch of folks, but I *really* don't want to join this club.
Best,
Donna
I've been looking all over the last few days and this seems to be the best breast board (BBB) around.
A little history. I was diagnosed with kidney cancer ('03) and thyroid cancer ('04). Been NED in both cases since then.
The first part of March, my husband and I were both sick with some sort of flu-like deal. As I was lying in bed, my right hand rest on the very top left of my left breast and I felt, plain as a day, a line of "lumps". My husband felt it as well. I seems to have a propensity for developing lipomas, so I thought that might be what it was, but I called my IM doctor and got in right away. (As an aside, my right breast has gotten decidedly bigger over the last few years - you can even tell from behind and it hurts sometimes, but I assume it's because of the heaviness. No nipply discharges or anything.)
She felt it and immediately sent me, orders in hand, to the local radiology folks, for a diagnostic mammo. On the orders, she wrote, "palpable, elongated mass", so surely that should get their attention. I had the mammo done, just the normal two views each breast and then an ultrasound. I left the radiology place (what do you call it??) with a sheet of paper that said basically, "no cancer". A week or so later, I got a letter from the radiology place that said, "no cancer". The palpable mass was not seen on either scan. I got a copy of my films and could see differences in my breasts. (I'm such a dork - I have my own lightbox.) This was mid-March.
Last Thursday, I'm sitting at work in a meeting and the phone rings. I recognized my IM's number and assumed she was calling to confirm my appointment for tomorrow to check my BP since it was sky-high when I was there with the mass.
WELL! It wasn't. She got the radiology report and said they recommended further evaluation? What the hell????? Didn't I get *TWO* documents saying all was good?? On Friday, I got ANOTHER letter from the hospital saying that I needed more followup.
I told her I would get it all scheduled and would see her for my appointment on Monday. She said she had already sent the order over to the radiology place.
After I collected my thoughts, I called and had the rad folks send me a copy of the radiologist's report. It says:
"There is a cluster of calcifications identified in the left breast upper outer quadrant central third for which magnification mammography is recommended for further evaluation. In the right breast, there is a large cluster of calcifications upper outer quadrant and a smaller cluster of calcifications slightly more anteriorly. Magnification views of the right breast is also recommended for further characterization of these calcifications."
So, my questions/comments/concerns are disconnected and I'm not even sure they're reasonable yet. All I know is that I want to go in there tomorrow in control with at least the outlines of a plan.
1. The word "clustered" seems to indicate possible trouble. Is that right?
2. There's a difference between calcifications and microcalcifications, with micro being the "scarier" of the two.
3. Having said that, is it correct that 85% of the time even the microcalcifications are benign?
4. Regardless of what they say tomorrow, if they should say it's benign, should I insist of biopsies anyway? If so, what type of biopsy?
Is there anything else I should be considering?
I've already decided that if it turns out to be a bad deal, both Lila and Lola are GONE! I would prefer to avoid chemo and radiation if possible. Hubster agrees with this as well.
I know it may seem like I'm jumping the gun, and I surely am, but I've got to go in with a plan.
After getting 2 "clear" letters and then a "need for more evaluation" letter, I'm a bit pissed and plan to go to the Radiology administration and complain. I may even write a letter to the state medical board.
Thanks for any help folks. I know you are a great bunch of folks, but I *really* don't want to join this club.
Best,
Donna
0
Comments
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hmmm I dont know the
hmmm I dont know the difference between microcalcifications and calcifications. I know that califications in certain patterns are more suspicious for cancer, but you cant tell until there is a biopsy. I would ask for an MRI as some cancers are not always seen on mammo, even with more magnification. However This may all be cleared up with the magnified views, I wish they had done them so you could avoid all this stress. You have been through so much! Hugs and prayers for a "negative yet positive" Outcome!0 -
I would at least...carkris said:hmmm I dont know the
hmmm I dont know the difference between microcalcifications and calcifications. I know that califications in certain patterns are more suspicious for cancer, but you cant tell until there is a biopsy. I would ask for an MRI as some cancers are not always seen on mammo, even with more magnification. However This may all be cleared up with the magnified views, I wish they had done them so you could avoid all this stress. You have been through so much! Hugs and prayers for a "negative yet positive" Outcome!
Ask about having a BSGI test and or breast MRI...both involve injecting a radioactive dye...the dye goes only to a "hot spot", ie cancer...I had both of these done..The BSGI test before the biopsy, it was positive..breast MRI done after the lumpectomy....to be sure it was all removed...neither test was painful, for me......I understand your fear...we all do...and hopefully you won't have to join the "club"....and we all wanted to avoid chemo and rads, but alas, that's usually unavoidable, in most cases...some do have rads with no chemo...I had both and they aren't as horrible as imagined...no day at the beach but both doable..
I wish you the best, keep us posted.0 -
What a roller coaster, and I
What a roller coaster, and I can't say we enjoy the ride. How upsetting to get such mixed messages. The magnification mammograms will help to track any future changes. It sounds like your caregivers want to be thorough, and that is a GOOD thing. I am hoping that your tests all come back negative. If you have any "gut" feelings regarding the pain you've experienced, I'd ask for an MRI, or something conclusive. For sure, let your doctor know about it. No matter what, it will be OK. xoxoxoxo Lynn0
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