A Bit of a Puzzle

Blinx
Blinx Member Posts: 280
edited December 2021 in Just Diagnosed

So, I'm back, 14 years after DCIS. Surgeon called today with results of the ultrasound guided biopsies. This time it's IDC, grade 3, triple negative, in the same breast (stage unknown at this point). The puzzle is that both left/right axillary lymph nodes are positive for BC. The unaffected breast showed nothing on the mammogram and appears completely normal. I'll be getting an MRI and PET scan in the near future, and was told to expect neoadjuvant chemo, surgery, and then radiation (at least to the lymph nodes, since I've had full breast radiation on that side).

I'm almost relieved though, since the affected breast is swollen, very thick/hard skin, with the orange peel look. When I see the surgeon, she's going to biopsy that bit just to be sure. I just want this thing out -- I've been sleeping in a bra for weeks to minimize movement, since it's been very painful. The faster they can get the ball rolling the happier I'll be (I think).

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  • AB45
    AB45 Member Posts: 152
    edited November 2021

    I'm sorry you have to be back again..Hang in there and try to take one day at a time...please let us know an update when you can

    Virtual Hugs

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2021

    Blinx - sorry you're back. I had a bilateral mastectomy for DCIS. Then found a recurrence for IDC in the lymph nodes in just 2 years. Looks like you're preparing for pretty much what I did - chemo, surgery, more chemo, radiation... It's now been 8 years. Hope your treatment moves forward w/o too much trouble.

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  • Blinx
    Blinx Member Posts: 280
    edited December 2021

    Thanks for your notes. Appointments are starting to be scheduled. MRI isn't for 2.5 weeks at an outpatient center. I'm lucky they do them there now. The next available appointment at the hospital isn't until January! Last time I went through this it was challenging to have tests and treatments throughout the holidays -- people had off, centers were closed. Oh well. Another chance to work on my patience!

    I'm beginning to feel very achy. I wonder if I picked up something or is it my mind working in overdrive?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2021

    Oh - hope you don't have a cold or the flu on top of everything else. Fingers crossed.

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  • NorCalS
    NorCalS Member Posts: 288
    edited December 2021

    Blinx,

    So sorry that you’re having to experience this again. I had a lot of node involvement when I was first diagnosed and it was painful. I hope your medical team helps you get a plan in place as soon as possible.

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  • moth
    moth Member Posts: 4,800
    edited December 2021

    Blinx, sorry you find yourself here again. Just FYI, triple neg treatments are going through a major revision right now based on clinical trials reporting out this spring & summer. I'd want to be sure that your oncologist is up on the absolute latest.

    Also, so you've had lymph noded on both sides biopsied and they both came back positive for IDC? There's someone else who joined just recently who has a positive contralateral lymph node. I'll see if I can find who it was...It's a bit unusual presentation and again, I'd want a team that is super up to date on this.

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  • Blinx
    Blinx Member Posts: 280
    edited December 2021

    Thanks. My although my hospital is a suburban one, it's affiliated with Penn Medicine (University of PA Hospital) in Philly (about an hour away). If needed, I can consult with specialists there.

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  • Krose53
    Krose53 Member Posts: 148
    edited December 2021

    I also had positive lymph nodes on both sides. Originally, found breast cancer on L side with mammogram. After having an MRI, 2 small tumors on R side as well as another one on L side were discovered.

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  • msphil
    msphil Member Posts: 1,536
    edited December 2021

    hello sweetie hold on and come back let us know. We will be here waiting for your update. Were here if you need to vent. msphil idc stage2 0/3 nodes 3 mo chemo before after Lmast got married for we were planning at diagnosis. Then 7 wks rads and 5 yrs tamoxifen

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  • Blinx
    Blinx Member Posts: 280
    edited December 2021

    Thanks msphil, I DO feel like venting. I'm just in a holding situation right now.

    I call every day to see if there were any MRI cancellations so that I can get an earlier appointment. I've been waiting for the genetic test results from Nov 12. After finally calling, they had very old insurance info (still trying to figure out that one). Results will now be in a few weeks. Good news though, no copay.

    I'm still waiting to see my biopsy report. I mentioned to the nurse navigator and the surgeon (who had called with me with results) that they weren't posted to the patient portal. The NN said that others had the same issue and gave me the number for the info mgmt dept at the hospital. Turns out pathology reports are NEVER posted to the portal (have no idea why). I had to go to the hospital website and fill out a form to release my own records to me! And... still waiting for that email. The NN said she could print them out and leave them for me at the desk -- I'll take her up on the offer on Monday. It irks me that others have full access to my info, but I do not. I'm finding out that I have to be VERY proactive (which is not me at all) to get the answers and keep things moving.

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  • Blinx
    Blinx Member Posts: 280
    edited December 2021

    Things are finally starting to happen! I've been so anxious to get moving on scans to find out the rest of the info on my cancer and get started on treatment. I was approved for a PET scan, which will happen in 2 days. They're trying to get a quicker date for the MRI, but if not, it's scheduled for a week from the PET scan. And I'll finally meet someone in person -- my MO just after Christmas. By then we'll have all the reports in, including the genetic testing. Phew!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2021

    Blinx - good news that the PET is scheduled scheduled. Hang in there.

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  • Blinx
    Blinx Member Posts: 280
    edited December 2021

    Things happened even faster today! Got a call just after 8 am. MRI had a cancellation, and could I be there by 9:15? Glad I was up and working at my desk. Made it to the MRI on time and it wasn't as bad as I remembered. Went quicker with less discomfort. New info: Tumor in right breast is now 8 cm and has invaded the pec muscle. Left breast has 2 small T2 bright lesions that might be lymph nodes -- they recommend ultrasound follow-up. Gave me a BIRADS-6 (known cancer, because of the biopsies).

    Glad to have that over with. Tomorrow morning: PET scan. Anxious to see if has invaded elsewhere.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2021

    Oh Blinx - so sorry about the results. Hope the PET gives more clarification.

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  • Blinx
    Blinx Member Posts: 280
    edited December 2021

    Had the PET scan yesterday morning. Pretty much the same findings as the MRI. The mass on the right extends to the right chest wall musculature. Right and left axillary lymph nodes. New bit: Left retropectoral region nodes are hypermetabolic. So the good news is, nothing found anywhere else! With my 60-yr-old aches and pains, I was wondering about bones, and of course lungs. Other bit of good news - they take a blood sugar reading, and my fasting blood sugar is 92. Since my weight is WAY up there, I'm always concerned about developing diabetes.

    My nurse navigator is, as usual, way on top of things! She's trying to schedule an ultrasound for my left breast (still not sure why the lymph nodes on that side are involved -- must be SOMEthing in that breast). She rescheduled my MO appointment for next week -- 2 weeks earlier than previously appointment. I'll see the same doc I saw 14 years ago. I'm pretty sure I'll be getting chemo first, so gotta get that port put in and get started. Not that I'm looking forward to chemo, just looking forward to getting treatment before much more time passes.

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  • Blinx
    Blinx Member Posts: 280
    edited December 2021

    Had a long first meeting with my oncologist, same one from 14 years ago. Still not quite sure what's going on with the left breast, but it doesn't really matter at this point. The right one is more serious, and chemo for that will get anything in the left. Staged at IIIc on right, IIb on left. Will be following the treatment from Keynote 522: Carboplatin + Taxol + Keytruda (I think), starting next week. I'll bet getting my plan/schedule soon. Getting my port next week too. Seeing my surgeon for the first time tomorrow. Onc mentioned bilateral mastectomy (which really, I knew it would be). Surgeon will have to tell me what's what with the lymph nodes and if I'm a candidate for reconstruction. Surgery won't be until summertime anyway. Brain MRI in 2 weeks just to rule out everything. I think things will become very real very fast once the port is in and treatments start. See you in the other topics!

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  • Jelson
    Jelson Member Posts: 1,535
    edited December 2021

    Blinx- so sorry you find yourself dealing with the beast again and that you have suffered through delays in getting your diagnosis but really glad that you have a plan, a path forward and actual appointments to get your treatments started.

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  • Blinx
    Blinx Member Posts: 280
    edited December 2021

    Finally... a complete pathology report. Three biopsies on Nov 18 (L/R axillary, R breast). Two of the results were ready on Nov 29 (TNBC), but the third one was inconclusive. Then on Dec 21 received the HER2 result on the other lymph node: positive. But what's weird, is that it's the right side, same as the breast that is HER2-. Just threw a wrench into the planned chemo session, which was delayed a week while waiting for results.

    So, if you're still waiting, sometimes they have to run the results 2 and 3 times to obtain the correct result!

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  • FindingOptimism
    FindingOptimism Member Posts: 67
    edited December 2021

    you mentioned you were in the Philly area. Given your interesting test results it might be worth the trip for a second opinion at Fox Chase or UPenn

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  • Blinx
    Blinx Member Posts: 280
    edited December 2021

    FO -- Today my MO asked me if I wanted a 2nd opinion. She was very rushed (the office was incredibly busy). I said no, I just wanted to start. Treatment was already delayed by a week. But now I'm thinking it might be the smart thing to do. They're affiliated with Penn. I could just have all the results/scans sent there. Hmmm. What to to?

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  • FindingOptimism
    FindingOptimism Member Posts: 67
    edited December 2021

    there also seem to be many treatment advances recently so you want to avail yourself of them

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