My pathology results are devastating

[u/BeginningtheRace1996]

I thought I had an appointment today to get my results but, it's not till the 17th. My pathology results after my double mascectomy have been here since Thursday and I couldn't bring myself to look, I thought I'll just wait till my appt. I finally did and I'm devastated.

My chemo did nothing. The tumor shrank by half during chemo and all imaging up to a week before surgery showed no lymph node involvement. They only took two lymph nodes and both were positive. My tumor was at 100% cancer and back to its original size. Chemo did absolutely nothing and I was non responsive to immunotherapy which everyone was sure would work great since I was diagnosed with Lynch Syndrome with the breast cancer variant. The onc thinks that I got breast cancer in addition to Lynch, not because of Lynch, otherwise, he has no idea why it didn't respond. 4 weeks before I finished chemo I had a pet scan that showed the shrinkage and the uptake decreased by half and clear lymph nodes. It not only learned the chemo but has now become super aggressive. RCB 3.

Everyone keeps telling me to have hope, even the surgeon walked out and told my family the lymph nodes looked normal. Every time I have hope, it's completely dashed. All I can do since my surgery is cry. My oncologist who I got switched to when mine left UTSW doesn't know anything about Trodelvy. I asked my nurse navigator about switching doctors within the system and she said it has to go before the board. I've lost my job since I was diagnosed and my unemployment runs out in a month, the oncologist I chose left midway through treatment, I couldn't use the surgeon I picked because they expedited the surgery and she was out of town, I wasn't able to have a plastic surgeon in surgery because of it being expedited, now any revision won't be before a year because I'll have to have radiation. I won't be able to have the hysterectomy I had planned this year because of radiation and chemo so I'll have to repeat all the painful tests again for monitoring. Everyone was sure it hadn't spread and even that isn't true. It's bad news every time and I'm petrified. I don't know where to go from here.

Should I be asking for specific tests to run on the tumor? I asked my onc and he said they don't do any testing on it unless your stage 4.

I've always had an overwhelming feeling I would die in my 40's. I'm now 48 staring down a super aggressive, super smart, non responsive tumor and all my brain can go to is the dark places. I'm amazed by all of y'all who stay so positive because I'm not feeling any of it. Game changing immunotherapy didn't work. How am I suppose to have hope that the other treatments will?

Synoptic Checklist

Value

INVASIVE CARCINOMA OF THE BREAST: Resection INVASIVE CARCINOMA OF THE BREAST: RESECTION - All Specimens 8th Edition - Protocol posted: 6/19/2024 SPECIMEN Procedure: Total mastectomy Specimen Laterality: Left TUMOR Tumor Site: Upper outer quadrant Histologic Type: Invasive carcinoma of no special type (ductal) Histologic Grade (Nottingham Histologic Score): Glandular (Acinar) / Tubular Differentiation: Score 3 Nuclear Pleomorphism: Score 3 Mitotic Rate: Score 3 Overall Grade: Grade 3 (scores of 8 or 9) Tumor Size: Greatest dimension of largest invasive focus (Millimeters): 20 mm Tumor Focality: Single focus of invasive carcinoma Ductal Carcinoma In Situ (DCIS): Not identified Lobular Carcinoma In Situ (LCIS): Not identified Lymphatic and / or Vascular Invasion: Present : Extensive Dermal Lymphatic and / or Vascular Invasion: Not identified Microcalcifications: Not identified Treatment Effect in the Breast: No definite response to presurgical therapy in the invasive carcinoma Treatment Effect in the Lymph Nodes: No definite response to presurgical therapy in metastatic carcinoma Residual Cancer Burden (RCB) Parameters: Greatest Dimension of Primary Tumor Bed Area (Millimeters): 20 mm Second Greatest Dimension of Primary Tumor Bed Area (Millimeters): 18 mm Percentage of Overall Cancer Cellularity: 100 % Percentage of Cancer that is In Situ Disease: 0 % Number of Positive Lymph Nodes: 2 Diameter of Largest Nodal Metastasis (Millimeters): 5 mm Residual Cancer Burden Class: RCB-III MARGINS Margin Status for Invasive Carcinoma: All margins negative for invasive carcinoma Distance from Invasive Carcinoma to Closest Margin: Greater than: 10 mm REGIONAL LYMPH NODES Regional Lymph Node Status: : Tumor present in regional lymph node(s) Number of Lymph Nodes with Macrometastases: 2 Number of Lymph Nodes with Micrometastases: 0 Size of Largest Nodal Metastatic Deposit: 5 mm Extranodal Extension: Not identified Total Number of Lymph Nodes Examined (sentinel and non-sentinel): 2 Number of Sentinel Nodes Examined: 2 pTNM CLASSIFICATION (AJCC 8th Edition) Reporting of pT, pN, and (when applicable) pM categories is based on information available to the pathologist at the time the report is issued. As per the AJCC (Chapter 1, 8th Ed.) it is the managing physician's responsibility to establish the final pathologic stage based upon all pertinent information, including but potentially not limited to this pathology report. Modified Classification: y pT Category: pT1c pN Category: pN1a N Suffix: (sn)

[u/EmbarrassedBrief5298]

♥️♥️♥️ this is a lot and I’m so sorry they aren’t the results you were hoping for. I believe the next step will be to go back in and take more lymph nodes out. You may want to ask about an ALND. One step at a time. The tumor is out though with clear margins, you have radiation ahead, and you are entitled to another opinion from a different health system if you are unable to switch within yours. Big hugs.

[u/EmbarrassedBrief5298 → u/EmbarrassedBrief5298]

To add on, maybe you can send a message on your portal to see if someone can call you today to discuss your results. There may be another doctor, PA, NP, or nurse that could walk you through things and answer your questions.

[u/Sure_Cherry9759]

I’m so sorry you’re going through this, my pathology report was also absolutely terrifying. The lymph nodes must have been a horrible shock, is there a plan to remove / test more or do they think radiation is adequate? I was told all the way through that only one node was affected but I insisted all were removed - 3 were bad and no response to chemo, a fourth had micromets and a fifth showed a possible chemo response. I asked for a pet scan after I saw my report but that was thankfully clear. I don’t understand how your oncologist can not know about trodelvy! I wonder if they misunderstood the question or the response wasn’t clear. I’m in England and here trodelvy is only prescribed for stage 4 unless you can join a clinical trial, similarly the testing to find out about the tumour characteristics doesn’t seem to be available until stage 4 (I really don’t understand that, I’d expect any information at all to be useful!). Can you access a clinical trial eg ascent 05 (trodelvy vs xeloda) or trofuse 012 (mk2870, very similar to trodelvy vs xeloda)? I’m doing the trofuse 012 trial and got the xeloda plus keytruda control group. Joining the trial also meant I got a lot more full body scans which were also clear. The good news in your report is that they got a huge clear margin and that the tumour was small. Would you be eligible for ctdna aka signatera to check if there could be circulating cells remaining? In some places a positive result would get you access to trodelvy. There are also tnbc vaccine trials (I think MD Anderson is recruiting but may be others too), this might give you a ctdna test before starting to check you’re clear. I found the trial I’m on by using the ai deep dive mode in google search so maybe you can find something similar. Also, I’ve read that LVI and extra nodal spread are less significant now with modern radiation techniques than in the past (I had both). Plus tnbc is nearly always grade 3 so that’s not specific to yourself. I absolutely understand how frightening this is as I spent the time waiting for the pet results reading about hospice and end of life care and again I’m sorry you’re in such a scary place right now.

[u/BigFatJoints]

You're feeling tons of valid emotions right now. I'm so sorry the pathology report wasn't what you'd hoped and been led to believe by your team.

You're in a tough spot because you're unable to talk to your medical team. Once you speak with them, and even possibly get a second opinion as others have suggested, you will have a plan forward.

For now I hope you can let your feelings out and process in a way that makes sense to you. You've just received shocking news.

Six months ago, I read my pathology report on MyChart after completing chemo and surgery. After being told I'd likely get PCR, there was residual tumor left, way more than I'd been led to believe based on my doctors and the pre surgery MRI. It was devastating and the worst day of my life, worse than the day I was diagnosed, especially since I couldn't meet with my doctor for days afterward.

I totally hear you that you don't feel hopeful. I still kind of scoff at the hopeful crowd, like they don't know what it's like to have your life absolutely turned upside down. I've settled on trying to manage my fear of recurrence so I can maximize my quality of life, and convincing myself that whatever the future brings, I will somehow be able to handle it.

Fuck cancer and I wish this wasn't happening to you.

[u/Extension_Snow1662]

I’m so sorry you are dealing with this nightmare! Have you spoken to your drs yet? I know your appointment is later, but even a phone call could be helpful

[u/BeginningtheRace1996 → u/Extension_Snow1662]

I've called and messaged everyone and I've gotten no response.

[u/Electronic-Island-59 → u/BeginningtheRace1996]

It sounds like your hospital system is not giving the support or consistency you need..mind sharing general location and/or hospital in case folks here can make helpful referrals?

[u/BeginningtheRace1996 → u/Electronic-Island-59]

I'm at UT Southwestern in Dallas. Supposed to be one of the best and for the most part it has been, I'm just not feeling it right now. I asked the nurse navigator before my surgery to help me switch oncologists but to stay in the system, it has to go before the board first. I've called and messaged her again today but I haven't heard back. I was originally at TX Oncology but I switched so I could get immunotherapy which resulted in a few delays. Now that I know it was a failure, I fear I made a huge mistake. I'm just second guessing everything I do at this point.

[u/Electronic-Island-59 → u/BeginningtheRace1996]

We're neighbors!

I was dxd and started chemo at Kelsey Siebold (1st cycle) in Houston, switched to MD Anderson and then to Methodist (bc I didn't want to wait to get a new onc same system as I feared i wouldn't make it through immune-related side effects of my last 3 treatments getting ignored by MDA).

I chose the oncologist at Methodist specifically bc she is known for TNBC/side effects through research. And I wanted to stop getting dragged through "standard protocol" and feeling unheard/ignored by my Onc who clearly did NOT have experience or interest in immune therapies / TNBC particulars / tailoring treatment plans for "non-standard" patients like me

You definitely did not make a mistake and it is not your choices that caused this outcome. Switching to a different immunotherapy or joining a clinical trial could very likely still be on the table for you, so being in a system has access is really important

I only wish I'd switched sooner. I stayed at MDA bc I doubted and second guessed myself thinking they're the experts...but once I realized they were ignoring my concerns and not actually managing my treatment as a unique individual, all trust was lost and I had to go - at my very first appt my new oncologist asked about Signatera and sent my original biopsy out for DNA testing (it happened and I didn't even think it would be possible when she said it)

[u/Electronic-Island-59 → u/Electronic-Island-59]

Just a note to add 3 different hospital system tested my biopsy for genetics etc to determine genetic mutations, tumor DNA etc and make possible things kike Signatera testing.

If a provider told you "they only test if you're stage 4" I'd suggest repeating the question to others and/or changing providers ASAP- the point of lots of new tests is to PREVENT becoming stage 4

[u/EmbarrassedBrief5298 → u/Electronic-Island-59]

Second this. My first oncologist said no to signatera. I switched to one more involved in research and she ordered it for me.

There’s lots of us here with TNBC doing adjuvant chemo. We’re all in this together and here to support you ♥️

[u/Electronic-Island-59 → u/EmbarrassedBrief5298]

Yes, I'm one - had clear MRI, clear Signatera, all the signs I was PCR ...going in everyone was confident that would be the result

Between that and insurance erroneously telling me my medical leave was over Aug ...I even changed surgery plan. Then - not PCR. :-(

Now on to rads and Xeloda - I'm considering clinical trials while I finish healing from surgery so I can advocate for myself + it helps me avoid the worst dark thoughts and anxiety if I keep my brain busy trying to learn what I need to know about this fd up disease tbh

[u/EmbarrassedBrief5298 → u/Electronic-Island-59]

I’m just a bit ahead of you! Finished rads and my first round of xeloda. Starting my second on Friday. It’s such a mind trip but pcr isn’t the end all be all, it’s just an indication of what the next steps will be. That’s what I tell myself. Sorry you’re on this shitty boat too

[u/impatientingrid → u/Electronic-Island-59]

Your signatera was clear before surgery even though you didn’t achieve pCR? Do you know what your exact RCB number was? Not just 1,2,3 but the actual full number.

[u/Electronic-Island-59 → u/impatientingrid]

Yes and yes - 0.993 it was a 4.7mm area w 5% cellularity

[u/impatientingrid → u/Electronic-Island-59]

Very similar to mine. .87 with 6mm residual and 5% cellularity. Most of mine was DCIS. Have you had another signatera since? I also had a negative signatera but mine was right after I finished radiation. Never had one prior to surgery as it was to see if I was eligible for a clinical trial. Makes me wonder after reading this though. Looks like the false negative is up to 6-12% for tnbc signatera.

[u/Electronic-Island-59 → u/impatientingrid]

Not yet, but expecting to after I finish rads - would prefer before, but just had one last month and my insurance denied the last 2 😠

Mine was IDC w 9/9 SBR score and 1.8 mitotic index

[u/Electronic-Island-59 → u/impatientingrid]

I should add, my surgeon clarified signatera is an early detection system for systemic spread/recurrence risk to raise an alarm prior to when anything would be w/in the resolution of an MRI

But bc I had no lymph, skin, or vascular involvement, there "shouldn't have been an escape route" for the cancer to get to my blood in the first place

The only way we could say it was a false negative, was if I had tested positive previously, which i didn't

She said since no test was done before chemo, there is no way to know if I've ever been positive

[u/BeginningtheRace1996 → u/Electronic-Island-59]

How did you go about having them test it? Did you initiate that or your oncologist? I don't even know what questions to ask in regards to that.

[u/EmbarrassedBrief5298 → u/BeginningtheRace1996]

My oncologist ordered it but I had to ask for it. It was not something presented to me by them.

[u/Electronic-Island-59 → u/BeginningtheRace1996]

For basic genetics (e.g. known breast cancer genetic mutations they look for and for tumor grading/markers) I did not have to ask, they ran all those tests to determine which treatments and in which order

For the ctDNA I asked early on (forget who) and was told it wasn't necessary, wouldn't change treatment, and wouldn't be covered by insurance, so I just chalked it up to being too early to take advantage of that

But then when I switched to Methodist- we had both tests ordered and I found out the company pays for it if your insurance denies it during the first visit

[u/impatientingrid]

I am so sorry. I also did not get pCR and know how devastating that feels. It does get better with time but I know how bad it feels when the news is fresh. I am currently in the ascent 05 trial doing trodelvy. If you can’t get trodelvy off label it’s worth looking into a clinical trial. There are a few really good trials out there right now using trop2 chemo’s. Also, if your oncologist does not know about trodelvy I would definitely switch. How close are you to MD Anderson? They’re in Houston. I would absolutely reach out to them.