Tentative Diagnosis
On Feb. 3 I had a CT on my lungs (at my request) because I am a smoker (no nagging, please) and a friend who was recently diagnosed with small cell lung cancer. My father and paternal grandmother also died from lung cancer. My lungs were fine but the CT showed I had one enlarged axillary lymph node under my left arm. I had a mammogram and ultrasound on Feb. 10, and they weren't able to find anything in my breast but recommended a biopsy on my lymph node. I had a core biopsy on Feb. 17. When I was notified of the result, I was told it was breast cancer. I am scheduled for a breast MRI tomorrow (Feb. 24) and have an appointment with a breast surgeon on Friday (Feb.28).
When I received the verbal diagnosis before I got the report, I asked how they knew it was breast cancer, and the nurse told me they could tell by looking at the cells. (The doctor actually called me first and told me the results, but I asked this question when the nurse called back to schedule my MRI and appointment with the breast surgeon.) When I asked specific questions, such as whether it was ductal or lobular, she couldn't answer. When I asked about the HER2, she said that analysis would take 4-5 days. When I received my path report the diagnosis was, "Lymph Node, Left Axilla, Needle Biopsy: Metastatic Adenocarcinoma, Favor Breast Primary." Needless to say, I was disappointed that the report was so generalized and non-specific. I expected a diagnosis of IDC or ILC. It did say it is ER positive (ALLRED score 3) and PR negative. The report also say there is some partial weak positivity for GCDF15 and positive staining for C7. The tumor cells are negative for TTF1, PR, mammaglobin, CK20 and CDX2. (I'm having trouble finding definition of these terms; can anyone help?) An HER2 will be performed and results will be reported in an addendum.
I have asked the doctors to whom I've spoken so far (the radiologist who performed the biopsy and my pulmonologist) how they will determine if the cancer has spread to any other organs--pet scan??? Their responses have been very vague other than to say there will more tests performed and the surgeon will decide if I need a pet scan.
Until I received the path report I was pretty confident that it was breast cancer. When the radiologist who conducted the biopsy notified me of the results, I asked what it would mean and would we do if the MRI did not show anything in my actual breasts. She said that sometimes the cancer in the breast actually burns itself out. (That seemed strange at the time which is why I asked the nurse how they could say it was breast cancer.) Now I'm not so confident, since the path lab said it said "favor breast primary," especially since my best friend asked her son, who is a radiologist, why it would say "favor breast primary." He said they are really "guessing" it is breast cancer, primarily based on location of the lymph node, but are on the hunt. That confirmed my suspicions after I read the path report.
I'm certainly not expecting anyone on this forum to diagnose anything from the information provided, but wondered if anyone had had a similar experience.
I know a breast MRI is the most effective imaging test to detect anything in my breast. I know that, at a minimum, the lymph node will be surgically removed and hope the MRI results will definitely show if anything else needs to be surgically removed at the same time. Will the MRI find everything that might be in the breast? I assume the path report on the actual tumor, rather than a core biopsy, will prove a much more thorough and informative report. Is that true?
My final question, for now, is that when my pulmonologist called me, she said that they always wanted to do what the patient wanted and asked if I wanted an oncology consult before I met with the surgeon. I said no because I wanted it out as soon as possible. When I was second guessing that decision, I rationalized that scheduling an appointment with a breast surgeon was the radiologist's initial recommendation, in consultation with her. Now that I've seen the path report, I'm wondering if there was some special significance of her asking if I wanted an oncology consult before seeing the breast surgeon. So my question is should I see an oncologist or surgeon first?
Comments
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Well, I have learned that for SOME patients, they do surgery after chemo these days. If there is a tumor, they monitor it to see if the chemo is the right "mix" and that the tumor is responding. Of course, you have no tumor present at this point. Just the lymph node. If the oncologist can fit you in (I often had to wait for appointments!) I would go and talk to him/her because they are the ones who can answer your questions about the report and what they mean. At this point it would just be a consult and their point of view could be helpful to you.
Good luck
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The usual order is you see a BS first and then the Oncologist. The BS does the surgery and the Oncologist recommends treatment. I don't see any harm in consulting an Oncologist but I suspect he/she would say lets wait and see what the results are from the MRI plus a lot us have surgeries like a lumpectomy, as I did, and the Path report comes back with findings the BS didn't anticipate. That happened to me. He swore there as no way my nodes were affected but lo and behold the Path report came back that there was a micromet in the SN. He said they had to dissect and redissect to find it but so what they still found it. It was then that my Oncologist ordered a test called the Oncotype test to test my particular tumors. Sorry trying not to get ahead of your situation because you just don't know for sure yet. Once your MRI is done they will know a lot more. Keep us posted and good luck...diane
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Usually the Surgeon is the first to see. Depending on the type (DCID/LCIS/IDCC/ILC/IBC) and how advanced it is will determine the next step. For some, the standard protocol is surgery first but for some of us, neoadjuvant chemo is impartive. For me, I had biopsies on Thurs, DX on Fri, saw Surgeon on Mon, Rads Dr on Wed, Chemo Dr on Thurs, lots of scans and tests and 17 days from DX started neoadjuvant chemo. Remember we are all different, our Drs are different and our DX is different so TX plans do vary.
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Bellaskids - I'm in the OKC area if I can help with anything. No screening is fail proof so it is possible that there could be something in the breast they could not see even with an MRI. Do you know about your breast density? Things are very hard to see in extremely dense breasts. Yes the tumor pathology will give you the most accurate results.
After my dx my onco ordered a ct scan of the abdomen and a bone scan to check for metastatic spread. He does not order PET scans because of the false positives.
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Farmerlucy - I'm sure I've asked this before, who is your onco?
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