Lumpectomy Lounge....let's talk!
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ChiSandy, consider this part 1B of my weather related boob pain question.
This Kansas girl is in Vail CO. I swear it feels like my hematoma is back, pain and location -wise.
High altitude related? A year after surgery, rad.
I feel like a tight balloon about to burst.
I await your reassuring wisdom, my friend!
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Robin, sure sounds like altitude is the culprit. The barometric pressure is much lower the higher up you go (the reason airplanes have pressurized cabins)--the expression "thinner air" is a misnomer, but that's what it feels like. Lower barometric pressure externally, higher pressure internally. When a storm is imminent, barometric pressure drops--and your sinuses (and any seromas or tendency toward lymphedema) swell. That's why compression sleeves are prescribed for lymphedema patients to wear when flying or at high altitude (even taking a nonstop elevator to the top of a high-rise). One dramatic illustration of that is what happens if you fly with a fountain pen that isn't completely filled or completely empty: there's air in the ink sac, cartridge or chamber. As the external air pressure drops (a pressurized cabin can do only so much), the air inside the pen expands and forces the ink into the feed and out the nib--which can be really, embarrassingly messy. (It's happened to me, which is why I use a pencil or ballpoint while flying).
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Thanks!
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Hi, Lumpy Ladies!
Today was my 4-month-post-chemo check up with my MO. I was anxious for her to take a look at what I thought was a seroma and tell me if I needed to see my surgeon or not. She was a little alarmed, and called it 'massive" (it's about the size and hardness of an unripe mango). She sent me down to get an ultrasound right away.
From what I understand it's not a straight up seroma, but mixed in with the fluid are pieces of necrotic fat that are a result of my radiation. That means there is no draining it, nor can it be removed surgically because my radiated skin is so fragile.
Does anyone have any experience with this type of thing? Did your body reabsorb it? If so, how long did that take? Was it tender ?
THANKS!!
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Well, I had my mammogram today at 12:45. I was very nervous and I felt like the tech was upset at the images she saw. I just had a gut feeling that she saw something. I had previously scheduled an appointment with my oncologist for 4:50 the same day. I thought, maybe she will have the results by then. I was waiting for my appointment when my husband texted me saying that they wanted to take more images. My heart dropped. I was so glad that I postponed my mammogram until after my daughter's high school graduation. I went into the office and my oncologist says, whats with all this ordering of mammograms and ultrasounds? Well, she brought up the x-rays and I asked her for her professional opinion. She says, "I am not a radiologist but I have over twenty years of experience looking at mammograms and she thought that it looked like a malignancy. It's at the chest wall on my left side and she said it was small, probably in-situ. I am sitting there in disbelief. My worst fear is happening. She said it could be benign though. Then when she sees my tears she says to try to think positively like it's possible it's not. Well, that's hard to do after someone gives you there professional opinion that you have cancer. My one year anniversary for my lumpectomy is June 22, 2017. I've been taking my Tamoxifen regularly like I'm suppose to.
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Shocked - It was a great move to have that happy graduation day with your daughter before starting this fraught ritual of screening and waiting for results. Are you being scheduled for a biopsy or still at the additional image stage? I know it's not easy, but do try to hold out some hope it is benign. Whatever your next move we'll be here for you.
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I am so sorry to hear this. I will be thinking of you, wishin, hoping, prayin
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Shocked, I can only imagine how scared you must be & I am so sorry you are going through this. Can the radiologist schedule a biopsy to be done the day they take the additional images? Or could your MO order an MRI? You shouldn't have to deal with this uncertainty any longer than necessary. Please hold onto hope that whatever they are seeing is benign. Your MO may have 20 years of experience but she is not a radiologist. I'll keep you in my thoughts & prayers & hope that you'll have a definitive answer soon.
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Shocked, I'm so sorry you're going through this! Techs are not supposed to tell you any diagnosis, however experienced they may be. It should be the radiologist (or your BS, MO or gyne) delivering the verdict and ordering more images if warranted. If you're not taking any meds that could cause bleeding (aspirin therapy, NSAIDs, blood thinners, ginkgo biloba or fish oil) and need to be discontinued 5-7 days in advance, you shouldn't have to delay a biopsy. Fingers crossed!
My scanxiety is kicking in too--got the "annual mammo memo" in my inbox this a.m., saying I'm due for a bilateral (R diagnostic, L screening) per my BS' orders this month. Went to my prior messages and realized that though I saw my BS in Dec., she didn't do imaging. So it is a whole year. Still getting occasional "zaps" in both breasts, with both my cats insisting on kneading my chest every night. (Someone once told me that cats & dogs can sense heat generated by tumors, though an equal # of posts say that's bullcrap). Already have my wrist cortisone shot scheduled for 1pm Wed. at Skokie Hosp., so doing the mammos at 11:15 at Evanston Hosp. 10 min. away.
My breast seroma (20cm at its largest, by late Jan. 2016, a couple months after rads) has resorbed to <9 cm, the size of the original "scoop" removed during the lumpectomy. Can't feel it below the surface, can't see it either. And it took <6 mos. for the SNB seroma to disappear. So there's hope for you too, Agatha!
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Shocked, I feel horrible you're back to waiting for results. And glad you went with waiting until after your daughters graduation. I hope like hell you get answers fast and that it is not malignant.
Hold on to hope. HUGS!
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ChiSandy: It was my onocologist who gave me her opinion. She did preface it with that she’s not a radiologist but has over 20 years of experience looking at mammograms.
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Well, I'd still ask for an ultrasound (&/or MRI if you have dense breasts) and see what the radiologist says. (Your MO sounds a bit deficient in the tact dept.--remember that even 80% of biopsies turn out benign). We have a radiologist who lurks (helpfully) around here, DJMammo--perhaps PM him?
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Thanks for everyone's support. It means a lot to me!
I'm going to go in for additional testing as soon as possible. It's an expedited screening. Mammogram, ultrasound, and biopsy if needed. I asked the mammogram technician if my breast's were dense and she said 50/50. Nobody has offered a MRI yet. I'll ask. I think I also want to get genetic testing if I could force them to do it.
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Wishing you the best, Shocked. ❤️ Sorry you have to go through this.
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Shocked - damned this disease. I’ll be praying this won’t be malignant also. I know the uncertainty and waiting drives you crazy. I too had a radiologist tell me after my sonogram that she expected my tumor to be malignant. It just sends you home with a monotone buzz. Take a deep breath and hope they are catching this soon enough to get rid of - if it is malignant. Again, they can’t be sure until further investigation. As long as there’s a chance it’s not - try to stay positive.
With my first mammo since surgery, they too took extra images of my non cancer breast. Sent me home with an ok, but then a few days later I received this letter that they discovered a spot that they think is benign, but arent sure, so they are going to wait until my November mammo to see if it changes. Meanwhile, nothing done, but nowI have to live with a worry of - what if?
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Shocked, Argh! Whether your MO is right or wrong, I do think it would be better if she waited until the radiologist read your mammogram. But now that she's said something, hoping she is wrong and it is nothing. It is hell waiting - even for one day. In your pocket!
HUGS
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Shocked, do you have Ashkenazi Jewish ancestry or a family history of breast, gyne, colon, pancreatic cancer or melanoma? If not, genetic testing would not be offered (but genomic testing of a tumor sample after surgical path definitely would, as you're <50---and an OncotypeDX of 16 or above at your age would indicate some benefit from chemo).
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Blair2: I think the worry is the worst part.
ChiSandy: My cousin had breast cancer in her 40’s and a half cousin had colon cancer before the age of 40. My other cousin had non Hodgkin lymphoma at the age of five but the genetic counselor did not seem concerned enough to order a test.
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Schocked so sorry you have to go through this angst. If you ask for the report, you could see for yourself what it says. It gives details which then you could at least have some idea if it's leaning towards benign or not. They saw what in the chest? It just does not make sense. SO it's scheduled for Monday? There is so much info they could have given to you.
Blair2 the same info to you. Do you have the report? What does it mean they saw something? From the report you could read for yourself with the help of Google, or here there is a thread that Sandy meant which is Interpreting my report, it's very helpful. I know if i would have more details i would be less anxious.
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Shocked - I am so sorry for what your are going through. Will be praying for you.
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Shocked, here's why the genetic counselor wasn't concerned: a cousin and a half-cousin are usually not considered close enough relatives to constitute a true family history. (IIRC, siblings, parents, grandparents, full aunts & uncles are what they look at). Moreover, you didn't state your ethnicity--for instance, BRCA 1 & 2 and PALB2 mutations are much commoner in Ashkenazi (Central, Northern, or Eastern European) Jews than in the general population--which is why they test if you are Ashkenazi and have been diagnosed with breast cancer, regardless of family hiatory,
Hope it's benign, or at worst atypical.
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The letter just said they see a mass that could have been caused from the surgery, like scar tissue, and therefore looks benign, but will reexamine in November’s mammo. I don’t like the fact they keep you uninformed and use vague comments, but I could ask for the radiologist’s report. However, that probably just states a note to look at this area again - so they don’t know. Makes you wonder if they know what they are doing when they aren’t sure about these things, but I’m not an expert in the field, so who knows
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Blair by no means i don't want to cause any extra anxiety, you don't need that. My info is about getting info. I try telling e/o i meet - get the reports! Even if it's a mass. They usually would tell you about the appearance of the mass, it should ytype of a mass they are looking at, then you could investigate that. And then after doing your homework, you could decide if you are comfortable with waiting blah blah. Also you could confer with PCP or OBGYN - ONCO - RO anyone of those to see what they say. That's just me, there are plenty of ppl that are content in following just what they are told by these places.
Even in my case, i had a few things discovered on excision biopsy, among them was proliferative ALH was amongst them, so first BS was happy to inform me that it's all b9, but i had the report in front of me on the next visit, so when i mentioned it, and i told him about the findings about what this means.... then he said yeah it would be a good idea even more in my case, with my DD being dx at a young age, to keep a closer eye and I should be having a discussion with a preventive MO.
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Blair, I wonder if it is calcifications they are seeing?
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Momallthetime:
I don't have an appointment yet. I called about five minutes before 5 pm and left a message. I will have to go in for a diagnostic mammogram, ultrasound and probably a biopsy to confirm if it's cancerous. I was at an appointment with my oncologist to discuss an unrelated matter and she saw the orders come in for more testing. I asked her to look at the report and she brought it up. The radiologist wants further testing. My oncologist reviewed the mammogram and believes it's malignant, probably DCIS near the chest wall. I looked at the image myself and saw it. She said they would want to biopsy this. I hope she is wrong. I am going to call again on Monday to set up an appointment.
ChiSandy: My family is originally from Germany, Ireland and England. I am not sure about the Ashkenazi lines if there is any or not.
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I hate that letter that the imaging center sends saying everything is "Normal." To me (and I suspect most of us here) that is like a pat on the head and the doctor saying, "Don't you worry your pretty little head about anything." BS. So I finally got a copy of the actual report while waiting to see my oncologist for my regular 6 month check-up. I looked at it and looked at it and the errors were glaring. The worst was it said no personal or family history of breast cancer. Then it said my breasts were symmetrical. Really??? And finally it said the BiRADS were Category 1. I've been Cat 2 for quite a few years.
I discussed this with my MO and he was upset too. His office called the radiologist and they got the history changed using an addendum. Another form letter saying all was normal and I got another copy of the report. But they hadn't changed the other 2 things. Eventually since things were not happening and getting corrected I called the radiologist. That was sort of satisfactory. He did change, through another addendum, that my breasts are not symmetrical. But he said the new thinking on BiRADS is that Categories 1 and 2 should be combined and that there really isn't a difference between them. So they are now using BiRADS category 1 and not 2. I couldn't get that changed.
I resent getting that bland, useless form letter when I should be sent the actual report without having to nag and nag to get it sent to me. I'm not an idiot. I can read. And by golly I know a helluva lot more about breast cancer than most people and am not about to mis-interpret the report.
End rant.
HUGS!
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I think it's just wrong when imaging practices or even physicians send minimal information to patients. I made it a practice decades ago to always request a copy of all reports - pathology, screenings, lab tests. And I keep them in files, so that I can be my own best advocate. Sometimes it seems like I'm micromanaging but it's my body, right?
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Patsy, I have always requested my reports too. And as you point out, it is especially necessary in breast cancer. I suppose if you have never had breast cancer or known someone who has, the mammogram form letter is okay. We know we want and need the details!
HUGS!
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ChiSandy: My aunt had Ancestry.com genetic testing done and she said Eastern European Jewish showed up. How would I know if that's along the lines of Ashkenazi?
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Shocked, that is definitely Ashkenazi ("Southern European Jewish" would have been either Sephardic or Roman). Ask her the percentage. If it's low and only on one side of your family, you're out of the woods. (I had 23andMe done--I'm, 99.8% Ashkenazi, and the health portion showed BRCA-negative).
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