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Topic: A Bit of a Puzzle

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Nov 29, 2021 06:13PM - edited Nov 29, 2021 06:14PM by Blinx

Blinx wrote:

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).

Dx Jul 2007 DCIS Grade 3 (R), age 46; Lumpectomy Sep 2007. ER+/PR-; 33 rad tx Jan 2008. 3.5 yr of Tamoxifen. Dx Nov 2021 IDC Stage IIIc grade 3, 8 cm (R); IIb (L). Rt breast, left axil: ER-/PR-/HER2-; Rt axil: ER-/PR-/HER2+. AC Dec 2021. Age 60.
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Nov 29, 2021 06:32PM AB45 wrote:

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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Nov 30, 2021 12:05PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Nov 30, 2021 05:24PM Blinx wrote:

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?

Dx Jul 2007 DCIS Grade 3 (R), age 46; Lumpectomy Sep 2007. ER+/PR-; 33 rad tx Jan 2008. 3.5 yr of Tamoxifen. Dx Nov 2021 IDC Stage IIIc grade 3, 8 cm (R); IIb (L). Rt breast, left axil: ER-/PR-/HER2-; Rt axil: ER-/PR-/HER2+. AC Dec 2021. Age 60.
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Nov 30, 2021 06:32PM MinusTwo wrote:

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

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Nov 30, 2021 09:01PM NorCalS wrote:

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.

Dx 6/17/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 6/24/2019 AC + T (Taxol) Chemotherapy 4/6/2020 Xeloda (capecitabine) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 30, 2021 09:16PM moth wrote:

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.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Dec 1, 2021 04:26PM Blinx wrote:

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.

Dx Jul 2007 DCIS Grade 3 (R), age 46; Lumpectomy Sep 2007. ER+/PR-; 33 rad tx Jan 2008. 3.5 yr of Tamoxifen. Dx Nov 2021 IDC Stage IIIc grade 3, 8 cm (R); IIb (L). Rt breast, left axil: ER-/PR-/HER2-; Rt axil: ER-/PR-/HER2+. AC Dec 2021. Age 60.
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Dec 1, 2021 06:31PM Krose53 wrote:

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.

Dx 11/16/2017, ILC/IDC, Both breasts, 1cm, Stage IIA, Grade 2, 2/5 nodes, ER+/PR+, HER2- (FISH) Surgery 12/27/2017 Mastectomy: Left, Right Chemotherapy 1/22/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/1/2018
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Dec 3, 2021 07:38PM msphil wrote:

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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Dec 4, 2021 05:31PM Blinx wrote:

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.

Dx Jul 2007 DCIS Grade 3 (R), age 46; Lumpectomy Sep 2007. ER+/PR-; 33 rad tx Jan 2008. 3.5 yr of Tamoxifen. Dx Nov 2021 IDC Stage IIIc grade 3, 8 cm (R); IIb (L). Rt breast, left axil: ER-/PR-/HER2-; Rt axil: ER-/PR-/HER2+. AC Dec 2021. Age 60.
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Dec 8, 2021 05:29PM Blinx wrote:

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!

Dx Jul 2007 DCIS Grade 3 (R), age 46; Lumpectomy Sep 2007. ER+/PR-; 33 rad tx Jan 2008. 3.5 yr of Tamoxifen. Dx Nov 2021 IDC Stage IIIc grade 3, 8 cm (R); IIb (L). Rt breast, left axil: ER-/PR-/HER2-; Rt axil: ER-/PR-/HER2+. AC Dec 2021. Age 60.
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Dec 8, 2021 07:07PM MinusTwo wrote:

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

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 9, 2021 06:04PM Blinx wrote:

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.

Dx Jul 2007 DCIS Grade 3 (R), age 46; Lumpectomy Sep 2007. ER+/PR-; 33 rad tx Jan 2008. 3.5 yr of Tamoxifen. Dx Nov 2021 IDC Stage IIIc grade 3, 8 cm (R); IIb (L). Rt breast, left axil: ER-/PR-/HER2-; Rt axil: ER-/PR-/HER2+. AC Dec 2021. Age 60.
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Dec 9, 2021 08:49PM MinusTwo wrote:

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

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 11, 2021 05:46PM Blinx wrote:

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.

Dx Jul 2007 DCIS Grade 3 (R), age 46; Lumpectomy Sep 2007. ER+/PR-; 33 rad tx Jan 2008. 3.5 yr of Tamoxifen. Dx Nov 2021 IDC Stage IIIc grade 3, 8 cm (R); IIb (L). Rt breast, left axil: ER-/PR-/HER2-; Rt axil: ER-/PR-/HER2+. AC Dec 2021. Age 60.
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Dec 16, 2021 08:23PM - edited Dec 16, 2021 08:44PM by Blinx

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!

Dx Jul 2007 DCIS Grade 3 (R), age 46; Lumpectomy Sep 2007. ER+/PR-; 33 rad tx Jan 2008. 3.5 yr of Tamoxifen. Dx Nov 2021 IDC Stage IIIc grade 3, 8 cm (R); IIb (L). Rt breast, left axil: ER-/PR-/HER2-; Rt axil: ER-/PR-/HER2+. AC Dec 2021. Age 60.
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Dec 17, 2021 02:20AM Jelson wrote:

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.

Dx 4/17/2009, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+
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Dec 23, 2021 06:58PM Blinx wrote:

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!

Dx Jul 2007 DCIS Grade 3 (R), age 46; Lumpectomy Sep 2007. ER+/PR-; 33 rad tx Jan 2008. 3.5 yr of Tamoxifen. Dx Nov 2021 IDC Stage IIIc grade 3, 8 cm (R); IIb (L). Rt breast, left axil: ER-/PR-/HER2-; Rt axil: ER-/PR-/HER2+. AC Dec 2021. Age 60.
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Dec 23, 2021 07:35PM FindingOptimism wrote:

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

Dx 8/2018, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy 12/12/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast
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Dec 23, 2021 07:52PM Blinx wrote:

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?

Dx Jul 2007 DCIS Grade 3 (R), age 46; Lumpectomy Sep 2007. ER+/PR-; 33 rad tx Jan 2008. 3.5 yr of Tamoxifen. Dx Nov 2021 IDC Stage IIIc grade 3, 8 cm (R); IIb (L). Rt breast, left axil: ER-/PR-/HER2-; Rt axil: ER-/PR-/HER2+. AC Dec 2021. Age 60.
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Dec 24, 2021 11:18AM FindingOptimism wrote:

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

Dx 8/2018, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy 12/12/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast

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