Unexpected pathology, 12 nodes with macromets

JustMeM

Hello all, I just got my pathology back from surgery and had 12 of 14 nodes come back positive. Reading the path report they were all macromets with the largest being 2.3 cm. I can see there are people here with quite a few lymph nodes, but it doesn’t seem like that level of cancer in all the nodes. The original breast tumor was 2.8 cm.

I can tell my doctor is shocked, and he has gone from absolutely positive to reserved and somewhat guarded. He originally said because I was highly er+ and pretty high pr+ with an extremely low oncotype chemo wouldn’t help me and he wouldn’t consider it; now he’s saying we need to discuss it. His language and demeanor have completely changed.

I have an appointment tomorrow to discuss treatment, but feeling pretty worried about what this means. Original pathology from the biopsy showed no lympho vascular involvement, but path now says suspicious for that. CT, MRI, bone scan came back “normal” about a month ago.

I know I will have to wait until tomorrow to get more info. I’m going to try to read up on different treatment options to be better informed for my appointment.

I guess I’m just doing some venting and hoping someone has gone through something similar and/or might have some words of encouragement.Or maybe just understands.

So glad this board is here!

muska

Hi JustmeM, welcome to the club nobody wanted to join.

Your situation is not rare, happens quite often. In my case, nothing was seen in lymph nodes on scans before surgery, but several were found to have macromets during surgery. I don’t recall exactly but I think there was lympho-vascular invasion too.

Speaking of oncotype test, isn’t it only for cases with less than three impacted nodes?

Check my profile below. If you have any questions I will be happy to answer. Hang in there, it will be easier when the treatment plan is finalized.

Best

BevJen

JustMeM,

I don't really have any answers for you but didn't want to leave this unanswered.

I was originally diagnosed in 2003. My CT and bone scans pre-surgery were pretty clean. My surgeon couldn't feel any nodes, and announced that she didn't think it had spread to the nodes. Bam -- surgical path report came back 13/18 nodes positive, some with extra capsular extension.

I had both chemo (TAC) and a full course of radiation to my L side. The oncotype scoring wasn't yet being done, so this was standard of care.

Good luck to you as you work through your treatment options with your doctor. Ask him to go through the NCCN treatment options with you so you understand where he's coming from. Thinking of you!

Moderators

Hi JustMeM,

We're sorry you have joined this club too, but glad you found our site, and community.

Muska is correct that Oncotype only if there is no cancer in your lymph nodes (lymph-node-negative breast cancer). Read here:

https://www.breastcancer.org/symptoms/testing/type...

You may want to read up here as well: Treatment and Side Effects.

We are all here for you! Please keep us posted.

The Mods

Beesy_The_Other_One

JustMeM,

I'm sorry you find yourself here--we all wish we'd never needed to be here, but if you have to be in this boat, you've found a great place.

There's a gal named Lottanodes (she has the 2nd best name on this board, after MinusTwo) who had 22/23 positive nodes. I think she's something like fifteen years past her original diagnosis with no recurrence. Right now, you need to cling to stories like that and try not to get ahead of yourself.

I had a somewhat similar experience to you: the first time I met with my MO and surgeon, they used words like "cure" far too flagrantly (I am not sure that's a word an oncologist should use, honestly). Then I had an MRI and my MO's face color turned ashen and suddenly no treatment was off the table. I'm 2+ years past diagnosis and didn't think I'd be doing as well and living life as normally. You are in the most difficult time, when there's so much uncertainty. When you know more, it does get better because you're actively working to fix the problem.

We all definitely understand, and you've come to the right place. One of the best things I've read here is "You don't have to be brave. You just need to show up." You can do it! Wishing you the very best.

TectonicShift

Hi there. My story is almost exactly the same as yours. Almost exact same numbers and the news kept going from bad to worse. (Originally the doctors thought just this, then just that, then eventually I wound up stage 3c). I had one doctor say, "You're definitely already stage 4, you just don't know it yet; all stage IIIc patients are really stage 4." I had another doctor say, "As worried as you are, we're more worried for you." Um... no... I doubt that. I'm pretty sure I'm more worried about me than you are. But I had other practitioners say more positive things. So it was a mix from the medical community.

Anyway, I haven't had any tests for about a year so who knows what's going on inside me at the moment, but last year -- at eight years out from diagnosis -- I had clean scans. Stage 3c is no joke and you'll need chemo. But chemo is not nearly as bad as you think it will be. It's nothing like it used to be and definitely not like in the movies. The drugs they have now to counter the side effects are very good. I hope you can find some peace these days as you adjust to this news. Be good to yourself. You have a hard job ahead of you but you can do it. And you will emerge so much wiser.

beeline

Hi JustMeM, I also have almost the same story. Highly ER/PR+, small tumour, lymph nodes looked fine prior to surgery. I was told I'd have surgery and then *maybe* hormone treatment. Two weeks after surgery I found out 10 nodes came back positive, massive extracapsular contract, just cancer everywhere. At least you have the relief of having already had bone, MRI and CT scans come back clear. I really thought I was going to die and thought so for a long time. I also didn't understand how it could happen and I still can't believe that no one said as much as "we won't know for sure until after surgery." I had no idea you could come away with a totally different diagnosis.

That said, I got through it and am still here 2+ years later (and planning to be for a long time!). As everyone says, chemo is "doable." There are also lots of new treatments coming out all the time. If you're in the US, you will probably have the option of verzenio by the time you finish chemo and rads. Verzenio is one of the new class of cdk4/6 inhibitors that has changed HR+ MBC treatment, and has now been shown to significantly reduce recurrence in early stage (anything before 4) breast cancer.

There is lot of support to be found on this board. I definitely recommend joining the "Chemo starting (your month)" list. Sending hugs. You can do this.

JMouse

JustMeM, I'm sorry you had to join us at the "that's a lot of nodes" table. Those of us here have a lot of variance in our cancer characteristics, so try to not see yourself in every case and every outcome. It's hard, I know. Before I lead you into the weeds, I want to point you at a thread where longterm survivors who'd had many cancerous nodes chimed in to cheer us all on: https://community.breastcancer.org/forum/67/topics...

Beesy_The_Other_One is right: just keep showing up. That's it. Anything else you can do is gravy. You'll run the gamut of emotions and hit lows you may have never faced before. I know it helped me a lot to find the longtimers on this site and chat with my treatment contemporaries.

My oncologist was dour, too, but I got a second opinion from another oncologist that changed my view for the better and really helped me feel more productive. If you have the ability, I recommend hearing other takes.

I don't know where in the world you are, but near me I know patients are restricted right now from bringing family or friends to appointments. If you are comfortable asking your doctors, perhaps you could record your appointments so you can jog your memory later of things discussed...? Or at least take what notes you can. If you're like I was, right now you're in shock and low on sleep. These first weeks were especially tough.

Hang in there. For many, I think, the emotional side of this is as bad or worse than the physical. This is a great site for support. We'll be rooting for you.

JustMeM

Good morning, I hope you will forgive me for not having the time yet to respond to each individual and thoughtful post, but I just wanted to thank everyone for the encouragement, suggestions, and links. I took something positive from each and every one. I feel more prepared for my appointment today and even the journey in general. Not the way I would have chosen to meet everyone, lol, but otherwise glad to be in your company!

sbelizabeth

Me too, JustMeM. I went into the lumpectomy with a tiny little lump and everyone thinking it would be like popping out a tic-tac with a melon baller. I woke up to a nightmare. The sentinel node was so chock-full of cancer it wouldn't take up any dye or tracer, so my surgeon groped around in my armpit until she found a hard lump, and sent that for frozen section. Cancer. So she did a full axillary dissection, which was common at the time. When she removed the drains later that week she broke the news about the pathology report. A whole bunch of nodes were removed, and a whole bunch of them were malignant. I still don't know how I managed to walk to the car and drive home with the hazy buzzing of shock in my head.

I've learned from many others on these boards that surprises such as these are pretty common. At the time it felt like I'd been snakebit and the snake wouldn't stop biting. Just terrible news heaped on top of terrible news. But here I am, almost 10 years later, healthy and thriving. Four grandkids and another next June.

My best advice is one day at a time. You can do it--chemo, surgery, radiation, reconstruction if that's what you want, all of it. Just one day at a time. Pretty soon it'll be in your rear-view mirror. Blessings--SB

lkc

I am another stage IIICER with 12 out of 14 positive nodes. I am blessedly well. now in my 16year! I have always been thankful of the aggressive treatment that us stage III ladies receive. It 's not an easy road, but it is doable. Come here often for support and good info. will make things a bit easier!

weesa

I'm joining this chorus. My ultrasound showed something the size of a dime. It turned out to be the size of a chicken egg. Nodes were larger than many main breast cancers reported here, and there were some dangerous details of my pathology. My oncologist told my husband privately he hoped to give me three good years.

I'm still an irascible irreverent bad ass enjoying my life. If you check out my signature details, you will see I am one of the oldest rats in the stage 3 barn.

Best wishes and keep panicking, cuz you gotta at this early stage,--we all do-- Weesa

cookie54

Congrats to all you Stage III warriors! I love to hear these stories, gives me hope. Thanks!