Scared-Lymph nodes positive after neoadjuvant chemo

Amoconn

I am new here and very scared. I did 4 rounds of AC and 12 of taxol. Just had my mastectomy and the breast tumors did well (just puddles of cancer left) but had 14/17 lymph nodes positive. Huge shock because only 2 showed up in scans. I have ILC and IDC. Please help. My breast surgeon told me this was not good. Meeting with oncologist tomorrow. Anyone out there with a similar response? Please help. Very scared. I am only 42

Kicks

I had 19 pos. nodes of 19 removed. My DX is different - IBC, Stage IIIc, ER+/PR-, HER2-. DX was 7+ yrs ago and (as far as I can know today) still NED.

My TX plan was also different than most who do neoadjuvant chemo do. I did 4 DD A/C neoadjuvant and 12 weekly Taxol adjuvant. For me, the plan was never to get a complete response before UMX but to get the IBC to form into a 'lump' (IBC forms as a 'nest' or 'bands'), shrink and get good margins for surgery. It did and 2 weeks after last A/C had UMX. 3 weeks after UMX I started 12 weekly Taxol to 'attack' any IBC cells that might have not been gotten during surgery. A week after last Taxol, started 25 rads.

There are many different TX plans and mine is/was not the 'usual' that the vast majority of those who do neoadjuvant do but it makes sense to me and more importantly worked for me.

Added : I was 63 when DXd. Still as active as ever and living/loving every second I have!

MinusTwo

Amocon - Sorry for your situation. When you get a chance, please go to My Profile and post your diagnosis and treatment plans. That would help us respond.

Are you ER/PR+? I was ER/PR negative. I'm assuming you're not HER2+? But my HER2+ didn't show until they removed the lymph nodes. You probably don't have the HER2 reports back yet. I did 6 rounds of neo-adjuvant chemo and didn't have a pCR (complete response), so after surgery I did 4 rounds of a different chemo and then Herceptin for the rest of a year while doing rads at the same time. I am NED now and have been for 2-1/2 years. Hopefully you'll meet with the doc soon and have a plan. It really does get easier when you have a plan.

Kathleen26

I was in what sounds like the same boat as you. I had 4 DD A/C + 4 Taxol. Surgery 2 weeks after my last chemo and they found 8 nodes out of 16 positive, including extra-capsular extension still present. Seemed like the chemo was a total waste of time. I was certain I wasn't going to last long at all.

That was almost 7 years ago, and I'm still NED. A lot depends on what exactly was found out about your tumor. Since I was highly ER+, I've been on Tamoxifen for several years now, and so far so good.

Freya244117

Hi and welcome Amoconn. I had 14 positive nodes, it is not a good thing, but also not the end of the world. I was 44 at the time, and that was 8 years ago. Once you get a plan and know what is happening, things do get easier. Best wishes.

Amoconn

I think I got all of my info in. Thank you for the positive posts. I guess they want me to redo all of my scans to make sure they didn't miss anything and are looking at giving me more chemo prior to radiation. She made it sound very negative. It felt like such a set back. I have three young kids 16, 14, and 12. I have tried to be so strong but it seems like one step forward-ten steps back

stephilosphy00

I am almost done with neoadjuvant chemo. Before chemo multiple scans confirmed one node involved, but now I am kind of worried there will be more than one node positive after surgery.

SSInUK

amocon welcome and sorry for your horrible news. Many of us have had the same - there's a thread in this forum about response to Neoadjuvant chemo that may help you. Many stories of those who've done ok. You dx stats don't show on your profile, they'd help you get better specific responses. Breathe. We've been there were with you. There will be many better days

7of9

Hi Amocon,

I am 45. Here I am! Similar situation..

Diagnosed at 40 and treated with neoadjunct - supposedly no nodes although kicking myself for not doing biopsy before treatment when they suspected nodes and only let them biopsy tumors. Recurrence - regional(?) axillary nodes 3 1/2 yrs later - though was probably camped out there almost all along despite Tamoxifin 10/14 nodes (yikes). Did surgery, ooph, Rads before chemo (ACT first time, this time 4 rounds of Taxotere and cold capping) because surgeon thinks it was contained she jumped in with Onc discussion and suggested rads first. I am a year down the road and just cleared an ultrasound and CT scan though I combed through odd notes on CT scan and worry about anomalies now. I take Arimidex. Have you hit menopause yet? I'm hoping we are both ok as once the estrogen shuts down, it should shut down most if not all remaining cancer that is probably lurking somewhere but hopefully will never grow again! Check out there are threads for multiple node survivors and 5 & 10 yr stage 3 survivors which will make you feel TONS better. Private message me if you need to. I had a very encouraging note from a lady who is 5 years in front of me and told me to hang in there. She had a lot of nodes and it got stopped in it's tracks too. Every year they get better at treating this.

LHebs

Hello all,

I know this is an old thread but wanted to reach out to you all as I am in the same boat as a lot of you all were.

I was dx with IDC in Jan 2018 along with a positive lymph node on biopsy but additional node on MRI. I underwent 8 rounds of neo-adjuvant chemo of dose dense AC and dose dense Taxol.  The primary tumor was not detectable on US after chemo and the inflamed node was also unable to be seen on US so they decided I was a good candidate for SNB instead of ALND.  I am ER+99%, PR+ 91% and her2 neg, grade 2 

I had a bilateral mastectomy with direct to implant last week along with SNB. I had a complete pathological response at the primary tumor site in the right breast but the SNB showed 2/2 nodes still had evidence of cancer with extranodal extension (had prior to tx)

Trying to figure out the next step.  They presented my case to the tumor board on Friday to see what everyone recommended. Looks like it will be either 1) axillary dissection and radiation 2) just axillary dissection or 3) just radiation. The general consensus was that I see the RO but didn't think ALND was necessary and increased my risk of LE. My RO appt is not until July 13th.

 I am only 37 so I want to be as aggressive as I can to beat this. My MO also is extremely positive and said that radiation and my hormone therapy is what will ultimately take care of my cancer but I am just concerned about leaving nodes in that could still have cancer.

Anyone with similar issue?

What did your Dr's MO, SO, RO recommend?

What did you decide?

How are you doing now?

Thanks,

Laura

Lexica

I went through a similar experience; my tumor had 'palpably' disappeared - only I did not have a PCR on anything. No nodes showed up on mammo or US prior to surgery, but I still had 5 positive post surgery (all microinvasion but one). Going back in for surgery is something I thought about, but dismissed quickly. So did my tumor board. I had and ALND, so I (and they) didn't think it was worth it and am counting on the hormone therapy, radiation, and I've also enrolled in the PALLAS trial. I'm not that far out, but I am doing well; I paid for a CTC test from Biocept (test for detection of circulating tumor cells) and it was negative, so that along with a post surgery PET scan calmed my worries a bit. The worries are still not gone, but I feel much better about my decision after the blood test.

I want to be as aggressive as possible, too; if I had your situation, I would probably push for a few more nodes out. But, I am also struggling with sub-clinical lymphedema (which isn't that bad, but I do have to wear my sleeve almost all the time, and it does become slightly painful at times). I definitely do not want full blown lymphedema.

Good luck, and let us know what you decide.