New Here and Just Diagnosed

Hey Justme,

Congrats on getting done with surgery!

I think palpable means that they are feeling something in the nodes that might be cancer. They will send everything for pathology and then you will have the full report. Even after that, the doctor might send for an oncotype or mamma print test which would take more time to get the results. The waiting time sucks so much. Nothing to be done really, plow through however works for you.

If they do find cancer in the nodes, it still doesn't necessarily mean chemo. And if they don't find cancer, it doesn't necessarily mean no chemo. My medical oncologist sends for oncotype even if someone is node negative and small tumor, and will do chemo if it comes back high. So you really still don't know.

Hang on and take care of yourself!

I'm so glad you're getting a second opinion! FWIW, I'm being treated at MSK and I've been very impressed.

Based on my reading, it seems like the trend is away from surgical removal (they call it axillary dissection) for positive nodes and towards radiation only. The evidence shows that it's equally effective with much fewer side effects. So it does make me nervous that your doctor is assuming that surgery would be the next step. I'm sure there are cases where it's warranted, but I think a second opinion on ALL of it is a really good idea, and keep asking questions and making them explain until you are really confident you understand and they make sense.

I got a little frustrated with my breast surgeon too. She gave me the impression that I would only need the oncotype if I had positive nodes, and if not, I would get no chemo without the oncotype. Later the oncologist said no, either she spoke badly or I misunderstood, and if I had had positive nodes my oncologist might have skipped the oncotype and gone straight to chemo (I'm young for breast cancer) but with negative nodes she always sends for oncotype. Well you know what - I did not misunderstand. The surgeon was clear. Me, my friend in the room, and my friend on the phone taking notes (who is an MD) all heard and understood the same thing. I think that it's a division of labor thing. The surgeon is the expert at surgery and screening, not at decision making about genetic testing and chemo.

For whatever reason, the protocol seems to be that the surgeon is the gateway into cancer treatment, the first doctor many of us see, who gives us the first explanations and introductions. My surgeon gave her best understanding and guess about what would happen after she was done with her initial role, but she didn't *know* and it's not her job to know. She sounded super confident and sure because... well, I think because that's how surgeons are....

Yep, everything *can* change after the surgery pathology comes back. Usually it doesn't, and if it does change, it doesn't change very much. But it *can.* My surgeon definitely didn't really prepare me for that. And in my case, it wouldn't have mattered because for me it actually didn't change. But because I'd been doing my own reading and education, I learned from other sources that it could have, and that undermined my trust in her. But I get it, they can't tell us everything they learned from years of school and practice and experience in a two hour initial consult, they have to pick and choose and focus on what they think is most important at the time.

Don't feel like you're doing anything wrong. I feel like the doctors aren't really trained in the art of educating patients and the psychology of it. If you're not understanding, it's likely more on your doctor than on you. And I don't say that to blame them. They get thrust into that role, but probably ideally there would be educator specialists with a deep cancer knowledge who would be part of the initial process and first appointments. It's OKAY for surgeons not to be great at that part of the job as long as they're great at the medical/surgical part. But we still have to make sense of things. I've found these boards super helpful for that.

(From my understanding, what medicine thinks about positive nodes is changing too. Now it understands that nodes is only one way the cancer *can* spread, finding it in nodes doesn't necessarily mean it *has* spread beyond the nodes, and not finding it nodes doesn't mean it *hasn't* already spread to be waiting dormant in other parts of the body. They treat the nodes (whether dissection or radiation) to keep it from spreading *from* the nodes, but it doesn't mean they were wrong about your tumor being low risk. You can have multiple positive nodes and a very low oncotype/mammaprint).

Anyway, like I said, I'm really glad about the second opinion, and keep pushing as much as you need to, to understand. Don't let yourself feel rushed or pressured. Keep asking questions here and try to do what you need to do to get through this objectively head-spinning time - whether that's distracting yourself or immersing yourself deeper in cancer scholarship. Do you mind if I ask, are you located in the NYC area? There are a lot of really good hospitals around here.

I am glad you have decided to go with second opinion. At first I wasn’t but because of where I was there are no PS, so if I wanted reconstruction I had to go to another hospital. I am so glad I did. It all felt wonderful for me.

As for the drains, I hear you! I had to have revision surgery due to necrotic skin and PS did say drains would be possible but unlikely. Yet, low and behold I woke up with drains anyway. At least I was prepared there might be a possibility.

I do not have ER positive BC so I cannot speak to that well, but can say that chemo has been on the table the whole time because of the ER/PR status but was told if lymph nodes were involved then I would have to have radiation. So try not to stress too much about lymph nodes.

Keep posting, researching, and being your best advocate. We’re here for you! The waiting is horrible!!!

I know it’s frustrating! Unfortunately this is not a quick evolution. I was 2.5 months post diagnosis when I finally had my surgery, after many tests, a scare and an additional biopsy. I will be exactly 5 months post dx when I finally start chemo. Then there is the time for the treatment. Someone once said that a cancer dx will take a year of your life. If you count worry, I’m sure it’s much longer than that!

Hope your appointment went well! I hope that your team gets a treatment plan quickly for you.

Justme1964,

There are so many treatments now that no matter the diagnosis there are many options. Getting a second opinion is important, I think, if your gut tells you you want one. A side note, I had a similar diagnosis and 5 positive lymph nodes would not be Stage 1B so I would check with your doctor if it's important for you to know the staging. To be honest, it actually doesn't matter in some ways. If you are considered early stage BC at this point, the stages don't matter except for treatment plan---whether to have chemo or not, essentially. The most important thing is for you to be comfortable with your team and start treatment quickly. If you are worried about spread beyond the nodes I would recommend you ask your doctor for a Pet scan.

In your corner,

nowhytoit

I was Stage 1b with just a micromet in the SN. I qualified for the Oncotype test and my score was 11. No chemo. Lumpectomy and 33 radiation treatments. 5 years on Tamoxifen. 7 years out last August.

I don’t think you can be a Stage 1b either with 5 positive lymph nodes. I would get a second opinion.

Diane

Can anyone explain to me why someone doesn't qualify for oncoDx test? Is it because of Stage and grade?

Deb, your info answered my question. Thank. Jo