Post neo-chemo lymph node positive survivors!!?

Mom_of_twins

Hi everyone! I started a different thread regarding response to neoadjuvant chemo, which has provided a lot of support for those of us who had residual disease after chemo.

But I'd love to hear from survivors that had positive nodes after neochemo, and to hear how you're doing! In the other thread, it's clear that those of us with residual positive nodes are very scared and could use all the hope we can get.

Please share!! And would all love to hear any details that might be relevant!

I'll start: clinical stage 2B, 2.2 cm, grade 2, ER 99%/PR weak, HER2- (FISH); ki67 30

Post-chemo scan and exam showed "complete clinical response."

Post-chemo: 1.4cm IDC in a 2.2cm tumor bed with DCIS (30%); 50% cellularity; two lymph nodes microscopically positive (1 mm largest focus). RCB index II (but on the high side). You can see the rest of details below. Ki67 5% post-chemo (that's good, right??)

The nodes freak me out the most, and I worry if the cancer wasn't killed in my nodes then maybe some rogue cells floating around are still alive, too!! Ugh.

dutchiris

I had 17 positive lymph nodes after chemo. It's been 3.5 years now. I'm still here. I'm not as scared as I was then but I have my moments.

Kicks

I'm IBC so different DX.

I did 4 DD A/C neoadjuvant and had 19 positive nodes at UMX. Then did 12 weekly Taxol adjuvant. That was 7 yrs ago and still NED.

My TX plan was different than most do as most will do 2 different chemos neoadjuvant while I did 1 neoadjuvant and 1 adjuvant. For me, the plan was never to get a complete response but to hopefully get 'it' to shrink and form a 'lump' with margins (IBC forms as a 'nest' or 'bands') so Surgeon had a hope of getting 'it' and then 'hitting' anything that might have been 'hiding' with adjuvant chemo (followed by 25 rads).

To me, my TX plan made a lot of sense - 'attack', get rid of it (cut 'it' out) and then attack again to 'mop up' any stray 'stragglers' with the rads being an extra bit of 'insurance'.

'Scared' about what tomorrow might (or might not) bring - Definitely NOT. There are no guarantees for 'tomorrow' (or even the next minute) so I refuse to hold myself hostage to the unknown wasting time (and energy) that I can put to better use living eacb minute to the utmost I can with no regrets.

AnotherMichelle

I am just about three weeks behind you in terms of date of Dx and treatments, but I can tell you what my surgeon told me when I still had residual disease even though my cancer had responded to neoadjuvant chemo. I, of course, wanted pCR, but she told me that with ER+/PR+ HER2- cancers, pCR is very unusual. She said only maybe 20% of women with this type have pCR. (I've read a study that showed an even lower number than that.) My surgeon said because chemo works on very fast growing cells, pCR is more common among more aggressive or quickly growing cancers (such as triple negative, for example). But this kind of cancer doesn't grow as quickly, so chemo doesn't kill it all. She would have been surprised, she said, if the cancer was completely gone after neoadjuvant chemo. This is why they take out the nodes and/or radiate (or steralize as my RO puts it) the area after chemo and surgery. What I take this to mean: a lot of women survive ER/PR+ HER2- for a long time (or die of something else without its ever coming back), so the lingering cells can't be a particularly strong indicator of who is going to recur or not.

I hope this helps. (Just so you know, it's much easier for me to calmly discuss your situation when I am constantly freaking out about recurrence. I am not adjusting to "re-entry" after treatment very well. I hope you're doing better. )

Kelli

Mom_of_twins

Kelli, thanks for your response!! I, too, can also provide information as rationally as you did, while I'm simultaneously freaking out about my own situation!! I'm doing okay. As I said above, the nodes really freak me out. I feel like if chemo cleared out the nodes, I'd be much more confident. And for what it's worth, my surgeon told me the exact same thing. I mean, the way you described it is literally what my surgeon said to me.

So I guess that's reassuring!?!

deemendoza

Hello ladies,

New to the forum I completed 4 ac and 4 of taxol. I'm having surgery soon and then radiation. After completing chemo another mri was down to check the progress of chemo. My breast surgeon and myself could no longer feel the swollen lymph node we once felt she said the chemo shrunk the tumor but there are still some abnormal lymph nodes. She will be removing all the lymph nodes in the anatomic area...

Today I'm so scared, scared that there might be maNY lymph node involvement. I'm scared of what that would mean. I had a ct scan and the cancer has not spread.

Mom_of_twins

Hi Dee, I'm so sorry. I know your fear all too well. The fact is you won't really know what you're dealing with until you get the final pathology. I had a clear scan before surgery, and I still had lymph nodes positive. I've read of other women here who had suspicious looking nodes before surgery that ended up being negative (sometimes they are full of fibrosis/scarring due to treatment effect). It's so so scary, I know. Hang in there. When is your surgery? Are you hormone positive?