interim pathology in . Will I need ALND, rads/chemo?

Tpralph

I said interim but is is a final.

I don't see my BS for two weeks to go over the pathology but was able to read it online through a patient portal.

I have a 2.2 and a 0,8 IDC with 1/2 sentinel nodes positive 4.5 mm with focal extracapsular extension no LVI.

intermammary node negative

what happens now? do they take more nodes, or give chemo/rads? ER/PR positive HER neg

Thanks for any information

gb2115

That really depends on so much...some oncologists automatically give chemo for positive nodes, some don't. Mine didn't--I had a positive node but had the genomic testing (Mammaprint) which determined no chemo for me. There are other tests as well, including the Oncotype which is popularly used by doctors. I think sometimes they go back in and remove all the nodes, but sometimes they radiate them. I had all of my nodes radiated because of that one positive node--no one even mentioned the possibility of taking them out. But I've read they can do that.

I think it depends on what your doctors tend to do in those situations and their approach---could go multiple ways. Sorry....

Have you seen an oncologist yet? I didn't get my oncology appointments until after my follow-up with the surgeon where they went over the pathology reports.

Tpralph

gb, I have my appt. with BS in two weeks then he will tell me what is next step.

did they do other scans on you because of the one SN positive? they only took two axillary nodes and an intermammory one. only one SN in the axilla was positive at 4.5mm

lrwells50

I didn't have positive nodes, but after the surgery labs were in, and were ILC instead of IDC, the MO got an OncotypeDx, which was 24, so I'm having TC chemo

Kicks

As you have positive node, have you seen your Chemo Dr part of your Team yet? Neoadjuvant Chemo is becoming more common for better surgery outcome.

Tpralph

Kicks, no haven't seen anyone yet. just got my online results from my patient portal website.

also seems that the true sentinel node was plugged with cancer and the other node was negative that became the new sentinel node. Does this mean the full chain from the sentinel node is cancerous too? wonder what my chances are of having more nodes positive???? this just keeps getting better and better.  thank you all for your help btw!

Trishyla

Tpralph,

I'm so sorry you have to go through this. I had a sentinel node that was cleared as non cancerous during surgery, but that came back in the final pathology as having micromets. And this was after 5 months of neoadjuvant chemo. Talk about a kick in the gut!

Apparently the section of the node my BS biopsied during surgery was cancer free, but the rest of the node was not.

I'm not having radiation, and I've already had chemo, so they're taking a watch and wait approach. My nodes will be checked every 3 months, and if anything seems off, I'll be sent for further testing. I'm not sure how I feel about this approach. My PCP seemed surprised by it. She said she might try to get a PET scan approved to see if, as she put it, "anything lights up".

Hope you're healing well from your surgery. Let us know what they recommend.

Trish

Tpralph

how soon after they find a positive node do they do something about it? it will be three weeks after SNB which showed 1/2 positive at 4.5mm. I am not seeing an oncologist yet and do not know if they are planning on removing more. Is three weeks a long time to wait to do something? I see some bc patients get the alnd done while they are still in hospital recoving from surgery.

I am afraid that if there is lymph node involvement there may be more and they are letting it fester and spread while I wait.

Emily2008

I would not wait weeks to see the BS, especially not with a positive node.

I'd get on the phone today, right now, and make an appointment ASAP. Tell them you read your path report and you must be seen immediately.

Nobody knows how long it takes for cancer to spread to more lymph nodes, but there's no way in the world I'd be waiting. The only issue is if you've made a decision on what kind of surgery you're having.

Big, big hugs! Now call that doctor!!!

Tpralph

thanks EMily, just called the BS and left a message for his nurse to call me back. I called them yesterday to ask for oncologist referral and his nurse told me ok he would do it. just got the path on Friday. Feel like I m a nuisance to these people but feel that they should be doing something asap.

I will ask her what the next steps are and how soon they should be done to prevent mets beyond lynph as well as who should be doing this.

t

Goincrzy8

From experience you need to be your own advocate. The Dr office is not in your shoes waiting to find out the next step. You know the Dr has the results, so I would push for an appointment or confirmation over the phone. What is the next step? Call the MO and get an appointment.

Tpralph

Goin. I cant call the MO as I don't have one yet. just pushed the BS yesterday to refer me. hopefully he has done that yesterday or will this week.

he mentioned it a month ago that I didn't have a mo yet, but just mumbled it. didn't say anything else about it. it was when they still thought I was node negative. had been clinically node neg up until final path. ugh

thanks for the encouragement!

Emily2008

You are not a nuisance! This is your health and life you're dealing with, and the squeaky wheel gets the grease. You can be pleasant, but firm.

You would need to see a MO anyway, even with negative nodes. Someone needs to follow you for years to come. You may require additional treatment, you may require scans and bloodwork. An MO is the one who will coordinate and order that. So if you don't get a referral from the BS soon, I'd look at who's in your insurance plan, check out ratings online, and schedule an appointment on your own. You can always cancel it if/when your BS gives you the name of someone else.

I never see my BS anymore, unless I'm having issues with the surgical site, or if something weird comes up at the incisions. My MO is someone I see regularly for years and years. Your situation will likely be the same.

You're doing great. Don't stop now. Call again this afternoon if you don't hear back in a couple of hours.

Tpralph

emily and going. Got a call back from bs office and said that she is sending the referral today to mo office and if they don't call hey this Friday I am to call her back. May or may not Ave appt by NXT week. Also told very common to wait this long (Canada) . She said my bs waits to hear from mo first as to whether or not to do further surgery and often he waits to refer at the appt. But made an exception for me and referred earlier. Maybe because I called and bugged them about it. I asked her " so there is no chance of spread while I'm waiting?" She said no . HA! Like anyone can say that.

Anyhow thanks for pushing me. I probably wouldn't have called her today if it wasn't for u.😘

Emily2008

Good work. You've set the ball in motion, now things will unfold in a timely manner.

Keep us posted and stay strong!

Tpralph

ok so verdict is all!  chemo first, then alnd then rads for 5 weeks. I have a bit of focal EE on the node positive. Not sure how this will work. if they do the alnd after chemo, cancer that was there may be gone then they wont know how many were affected? why bother at that point?

start chemo june 28

ChiSandy

Doing the chemo first can determine how well the cells in your lymph nodes respond to it (and making it possible to be able to remove fewer of them in the ALND and also perhaps lower the dose of rads), and therefore how well any stray cells in your body will respond too. The less they need to mess around with your armpit, the lower the chance of lymphedema.

Tpralph

chi. Didn't think of that thank you. However maybe there aren't any more positive nodes anyhow then they won't know how well it responds but in the other hand like you say maybe they can alter the rads dose

Hopeful82014

Regarding the ALND - I don't think the response to chemo affects the number of nodes removed; it is a fairly standard procedure. That, at least, is how it was presented to me.