Diagnoses/biopsy results
Comments
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You are NOT a "broken record", you are someone we all recognize in our own past experiences. I just think that most of us on the threads that have our active tx behind us, try to offer what help and encouragement we can to women such as you, who are just beginning.
As you can see in my "info".....my dx and tx was many years ago, and the experience for me was much different from yours. Less choices offered to me in tx, less knowledge and support to help me through the side effects of chemo, and NO support from other women, or resources like BCO....but...despite all that, I made it through, and you will too.
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Several people on here asked me to post the results of surgical pathology when I got them. Surgeon called late yesterday and this is what he told me. I will not see the final report until I go for post op next week. Here's what he said:
The main mass was 18mm, which was larger than the 11mm they originally said. He said he got 5mm clear margins. I wonder if the 5mm margin is counted in the total size of what he removed and that is why it is bigger than they said. I had an ultrasound an hour before surgery and they measured again and told me again it was 11mm. He removed 12 lymph nodes and only1 was positive (the same one they biopsied). He said that he believes the course of action the oncologist will want to take is chemotherapy, radiation, and hormone therapy. That is what oncologist told me as well when I saw her a couple weeks ago. Will hopefully hear from her today as well. As of now, this is all I know.
I find this interesting because it was this same surgeon who said it had spread "far beyond' what the initial reports indicated. I plan on seeing what he has to say about that now.
Thanks everyone for your caring, encouragement and support.
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Oh I will! They said last time I mentioned it that they wouldn't consider it if there were several positive nodes. Well guess what? Regardless of what they "assumed", there is only one!!! They will be hearing from me and I can be very persistent until I get my way! And cancer crap for sure! I am finding I am getting to the anger stage of this process. I just plain don't have time to deal with this and it is making me really mad that it's going to drag on for months and months! I seriously have better ways to spend my time!
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oncotype Dx is appropriate for 1-3 positive nodes. I will be anxious to see your full pathology. I still can't believe how pushy your surgeon is. How are you feeling?
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Hi seq24:
Very glad to hear there is no further node involvement. The question of "systemic" drug therapies, such as chemotherapy or endocrine therapy is within the area of expertise of the medical oncologist, and is not within the area of expertise of the surgeon (although they sometimes comment on it).
Please confirm it with your team and against your written reports, but in general, the total tissue removed is the "specimen" and there will be a gross description of this in the pathology report. The "mass" typically refers to the tumor. The "margins" typically refer to the cancer-free area between the tumor mass and the edge of the specimen. Here is a brief description with illustrations from the main site of "surgical margins":
http://www.breastcancer.org/symptoms/diagnosis/margins
Imaging may underestimate the size of a mass. However, a 1.1 cm (11 mm) and 1.8 cm (18 mm) tumor would both be considered "T1" in terms of size only (T1 = Tumor ≤ 20 mm in greatest dimension), so this particular size change would not alter your staging.
Histology (e.g., ductal, lobular, etcetera), actual tumor size ("T"), lymph node status ("N"), ER status, PR status, and HER2 status, as well as other factors, such as tumor grade, the presence of lymphovascular invasion in the breast, and if applicable, multiparameter test results (such as Oncotype Recurrence Score), as well as personal medical and family history (including age, menopausal status, co-morbidities), inform the recommendations of medical oncologists about chemotherapy, HER2-targeted therapy (for HER2-positive disease) and/or endocrine therapy. Because of this, you will want to know what these are from a personal inspection of your pathology reports. For your review and records, please ensure you receive copies of the complete pathology reports from all biopsies (including the pre-surgery lymph node biopsy), and the surgical pathology (including sentinel node biopsy results).
Best,
BarredOwl
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BarredOwl, thanks. I tried to get the surgeon to tell me more information on the phone but he seemed in a huge hurry and told me he would explain everything on the report when I go in next week and he would be giving me copies of everything. I won't leave the office until I have a full understanding of every word on the report. I did that with the biopsy report (different dr. at that time) and I kind of irritated him because I insisted on knowing everything. I have since then memorized that report and will do the same with the surgical reports as well. I am the type of person that has to know every single detail before I can make a decision including all of the what, when, where, and how. I am definitely not leaving it up to him as to what further treatment. Seeing the oncologist in a week and will seek her recommendations.
Molly, I'm actually feeling pretty good. Not much pain at all. In fact I only took one pain pill since surgery and that was that night. Today I don' t feel as good as I have this week, but the migraine I have at the moment isn't helping. I went back to work part time yesterday from home. I may sound like I have been complaining about this surgeon all along, but I have found that the recommendations of him from others have been correct. He is a very good surgeon. Most of the bandages are off and you know, I have some bruising, but don't even see any evidence of the incisions. I was shocked. I was also told there would be indentations where things were removed and there is none of that either. Except for some numbness under my arm and down the back of my arm, I have full use of it. I was told I wouldn't be able to lift it above my head for a few weeks after surgery. I could raise and stretch it before I even left the hospital. So all of that sounds good. It's just I am pretty nervous as to what they are going to recommend as far as further treatment. Thanks for checking on me!
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Since you had axillary lymph node dissection you do need to be aware of the risk of developing lymphedema . No needle sticks or blood pressure cuffs on that arm.
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I am confused, usually the major university hospitals do chemo first and that shrinks everything down for easy surgery and clean margins. I have the same diagnosis as you with only one node found on core biopsy and with mastectomy and radiation , my reoccurrence is at 15%. With hormonone reducing meds after. Maybe a second opinion
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Seq, sorry I didn't read recent posts and now realize you had surgery. Good news about one node, but fro what they told me you do want to have chemo with any node involvement because it can metastasize from there and chemo gets all those Stray cells. chemo is not the horror story it's made out to be. Just be prepared. Ice your hands and feet with taxol and no neuropathy. Suck on ice while any chemo going in and no mouth sores. I am doing penguin cold caps so I can't speak to hair loss.
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Jiffrig, where are you located? With your stats, that sure doesn’t sound like standard treatment for a tiny Grade 2 Stage IA! I am assuming you had an intermediate-to-high (at least18+) OncotypeDX score or were “high risk” according to Mammaprint, since you are claiming a 15% recurrence rate with hormonals. If you didn’t have such a high OncotypeDX score (or were Mammaprint “low risk”--Mammaprint has no in-between), where did you get that 15%? Or where did your MO get it?
And what you describe--chemo first, then surgery--is called “neoadjuvant chemo” and is never done for tumors smaller than 2cm. The sole reason is to shrink the tumor to make it easier to remove. Is the “<1cm” in your signature profile the final tumor size after chemo and before surgery? And why do neoadjuvant chemo if you’re going to have mastectomy anyway?
From the stats in your signature line, you are definitely an “outlier,” unless there’s something else you’re not telling us. (Foreign country? Small-town oncologist, or one in private practice with a profit motive a university-only onc would not have? Lymphovascular invasion? Mixed-tumor, e.g., ILC or IBC?). It’s just not adding up!
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seq24, get that Oncotype AND a second opinion! (You don’t have to go to the second-opinion hospital, e.g. M.D. Anderson or City of Hope, to get the treatment the second-opinion MO recommends. You are the patient. It’s your money. YOU are driving the bus!). If your Oncotype is, say 18-25, do what Lisey and Dara did and follow it up with a Mammaprint. (Both had nearly identical OncotypeDX scores, but Lisey’s Mammaprint results were “low-risk,” enabling her to skip chemo; Dara’s came back “high risk” so she’s doing chemo).
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I've missed a bunch of posts on here today as I haven't been online much. It's strange that 5 days after surgery I am not feeling that great today. I will definitely getting Oncotype testing done whether they say its recommended or not then I will go from there. I already have a call into the MO to get back with me on Monday. I have lots of questions for her BEFORE I go in for my appointment in a week. I should have a hard copy of the surgical pathology report in my hand tomorrow and I will dissect it word by word to make sure I understand everything in there and will and add to my list of questions accordingly. I may be seeing the surgeon on Monday to remove the drain and then have my post op on Wednesday. Everyone is telling me that I have "such good news" on the report but at this point I am not convinced it is so good because there are still a lot of unanswered questions and apparently a very long road ahead. Thank you everyone for all of your caring, support and advice! What would I do without all of you? Hugs!
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ChiSandy, I am in St. Louis. I could not put on my diagnosis that I have one affected lymph node also. You can only list lymph node if you already had the surgery. It was diagnosed through a core biopsy so that determined the chemo. My onco explained they do chemo just to be sure nothing snuck out of the node and floating around. The tumor is kind of inconsequential. Shrinking the lymph node before surgery is the goal. I am then doing nipple sparing bmx.
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