Diagnosed last thursday, now in the waiting game for appointments
Well I got the alert last Thursday that I had a new result in my MyChart and I looked and got the news there at my job. Looks like I have grade 3 IDC, triple negitive hormone test. The NP at my OB/GYN office called and asked where I wanted my referral sent. I gave them a few places and now I wait. Not having much infromation and wishing I could just get in to see a DR. The wait for a DR local to me is two months, I have sent appointment requests off to Wake Forrest, Duke, and Vanderbilt. Just waiting to see who will get me in quickest. Thanks for letting me vent, I don't know anyone who has ever had BC so this is so new and was such a shock.
Here Is my path report
Final Diagnosis:
Breast, left at 6:00 position, ultrasound guided biopsy:
INVASIVE MAMMARY CARCINOMA.
SYNOPTIC REPORT
Procedure: Needle biopsy.
Specimen laterality: Left.
Histologic type: Invasive carcinoma of no special type (ductal).
Histologic grade (Nottingham histologic score):
Glandular (acinar)/tubular differentiation: 3
Nuclear pleomorphism: 3
Mitotic rate: 2
Overall grade: Grade 3 (total Nottingham score: 8)
Ductal carcinoma in situ: Not definitively identified.
Lymphatic and/or vascular invasion: Not identified.
Microcalcifications: Not identified.
Ancillary studies: Pending, will be reported in an addendum to follow.
Additional pathologic findings: Brisk peritumoral inflammation.
Estrogen Receptor Internal Control: Absent (only neoplastic tissue is present).
Percent Positive Cells (invasive tumor): 0%
Staining Intensity: Not applicable.
Interpretation: Negative.
Progesterone Receptor Internal Control: Absent (only neoplastic tissue is present).
Percent Positive Cells (invasive tumor): <1%
Staining Intensity: Weak.
Interpretation: Negative.
Her-2/neu (Cerb B-2)
Score: 0
Percentage of cells with uniform, intense complete membrane staining: 0%
Interpretation: Negative.
Comments
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Welcome but sorry for the reason you are here. Waiting for appointments, tests, results, etc. is frustrating but since breast cancer is not considered an emergency (really!) it’s something most of us experience. It’s stress inducing but because breast cancer is generally very slow growing, it will not affect your health adversely. For the sake of stress relief, I hope you can get an appointment sooner!
I am a retired teacher and don’t feel qualified to interpret medical reports, though after 13 years with bc, I am familiar with many of the terms, but radiologist is definitely above my pay grade*. There will be lots to learn (bc is infinitely more complex and varied than most people imagine) but you don’t have to learn it all at once. Lastly, although Google can be useful for general info, it cannot say anything about you as an individual and there is also some bad info out there. Dr. Google is a terrible diagnostician and clinician!
Things will likely unfold more slowly than you would like but that’s typical. Focus on what you know for a fact right now and try not to spend much time speculating over worse case scenarios that may never happen.*Some members are comfortable interpreting medical reports. Not putting them down, it’s just too far outside of my sphere of knowledge even with a huge amount of personal experience.
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I’m so sorry @lknickels. It being a shock is so true!!! One year later I still can’t believe it all happened some days. And I understand that feeling of no one I knew had ever had breast cancer so it was a completely foreign thing for me. (Yet my grandmother had had breast cancer when I was young, I just don’t remember her ever talking about it so I wasn’t educated at all about it. On a positive note, she survived another 30+ years!) It’s all been a lot to learn and digest and go through … but you just do it. Getting on this forum and connecting with others can be such a valuable help! Welcome!!!
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Thank you! I got a call today and have been scheduled for next Friday the 12th with a team of doctors, so just knowing I have an appointment has made me feel so much better!
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Hooray! I am so glad your wait will be short 😊.
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That’s so much better @lknickels … two months did seem a bit excessive of a wait. I’m glad you’ll get things in motion sooner.
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I was diagnosed with IDC last week and my first appointment with the surgeon is in the morning. Any suggestions for questions to ask?
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Hello @kstevenson1970. I’m not sure if you’ll see this tonight … here’s a really long list of suggestions. You may find that your surgeon will answer many of these without you even needing to ask (and you may already know some of the answers). If you can have someone with you to take notes, that is always helpful!! I know it’s a crazy whirlwind of appointments and information in the beginning and it all feels so urgent … I’m sorry you are facing this. Try to get some rest tonight and I hope you like your surgeon and get lots of helpful information tomorrow.
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Welcome, @kstevenson1970! We're so sorry you have to be here for this, but glad you found us! We hope your appointment with the surgeon goes well and that you get the answers and guidance you need. Please reach out if you have more questions or just need support. We're here for you! Let us know how it goes.
@needs.a.nap, thank you for sharing our helpful list of questions. Your response will definitely be a great resource for kstevenson and anyone preparing for their surgical appointments. 😊
The Mods
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thank you @needs.a.nap ! This is very helpful!
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Good morning @kstevenson1970. I think the biggest question I had was should I have a mastectomy or could I have a lumpectomy? What were the pros and cons of each. And how quickly did he recommend I have my surgery.
My surgeon kindly explained everything to me … I didn’t really have to ask many questions because he explained it so well. Then he referred me to a plastic surgeon to explore reconstruction options. And you can always ask lots of questions after the fact by calling and speaking to a nurse or messaging on your patient portal. They should get you set up with one if you don’t already have one.
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thank you. My appointment went ok. He doesn’t want to talk about his recommendation until we sees the MRI which is scheduled for Wednesday morning. He gave me a ton of information.
He said unfortunately I have ER-/PR-/HER2-0 -
Hi @kstevenson1970. Thanks for letting us know how it went! I’m not really knowledgeable about triple negative. It’s a heavy diagnosis no matter what type. There is a Zoom group support meeting … I found it really helpful!
I’m glad you’ll get an MRI. That was something I never had but wished was done in the beginning … for peace of mind at least! I’ll be thinking about you … I know how the early days of a diagnosis feel so surreal and it can be an emotional rollercoaster. If you want, you can start a brand new thread under the Triple Negative category and I can follow you there … share as much as you are comfortable with … everyone here is wonderful and supportive. We get it.
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I’m glad that I have found this organization!
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I hope your MRI goes well tomorrow @kstevenson1970 !! I’m thinking of you 😊
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thank you! I just hope I can get some sleep.
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I haven’t heard from the surgeon about my MRI but I can see my report in my portal. It mentions IDC and DCIS. 4-5 cm at marker site.
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