too many nodes involved.. does it mean bad prognosis?!

bestrongforeveryone

hi all

I had invasive lobular cancer and had sugery in Jan. the lump was reletively small but muitlfocal. A couple of weeks ago I went to see the Dr and he explained to me, during the op he removed 20 nodes and 9/20 had cancer in them!!!!!! no extranodal spread (not know what it meant).T1N2M0. ER +++ PR+ HER-, most grade 2 . MO sugguested chemo 4 dense dose AC every two weeks + 12 T weekly, together with radiation and hermone therapy later on

I did not expect this as the tumor was not too big, and they kept telling me it is still early stage and localised. I guess size might not matter that much as the tumor was so close to the armpit, it was right at 11 oclock. I freaked out and tried to search on the internet and found this would be carified as stage IIIB. But according to the 2018 new standard it will be re-staged to stage IB?!?!?!?

I dont know what to expect, I can not convice myself it is stage I or II as there were so many nodes involved. Does it mean bad prognosis? dr told me it would still be classfied as early stage, as it was localized in one area and all removed . but I am so concerned, i feellike cancer cells are all over the body and running..

stage III is my worst nightmare ! I can not get my mind off thinking it is stage III and survival rate only blablablabla... I kept on thinking about it and cant rest. I want to survive...I dont care they cut my boob off but I do want to save my life andsee my little child grow up!

Thank you for listening to me. I totally appreciate i

santabarbarian

Have you gotten an Oncotype score? Are they recommending chemo, radiation, &/or tamoxifen?

I think it is smart and prudent of you to have concerns, due to the nodes... I had nodal involvement as well, but a very different cancer (TNBC) so did chemo, surgery, and am now doing radiation. Nodal involvement generally indicates some sort of systemic treatment is warranted.

"No extra-nodal..." means it did not spread outside the nodes.

However, the truth is that even if you have ostensibly clear lymph nodes, stray cells can still have spread, and simply did not take up residence in the nodes.

There are people on this site with tons of nodes on diagnosis who are free of disease many years out, and others with clear nodes at diagnosis who have had recurrences. Counting the # of nodes is a way of trying to gauge the status of the disease, but nothing is a perfect predictor.

bestrongforeveryone

thank you santabarbarian- yes I will have chemo, radiation and hermone therapy later on, too.

wish you all the best with your radiation to

CaliKelly

Hi bestrong,I see we have similar diagnosis, I had 8 out of 20 nodes positive for cancer AFTER TAC chemo . I had chemo first( called neoadjuvant chemo) because we knew already it was in my axillary nodes. Then Mastectomy, radiation, hormonal , reconstruction etc. So about 2 years of treatment if you include a couple of reconstruction surgeries. I've been only on hormonals now, cancer free 3 yrs. It's a challenging course of treatment, but you can still live your life during all ,except maybe a few days off during each chemo cycle. I had no unexpected complications, and now am feeling pretty much back to normal! I'm very active, lots of biking, gym workouts, kayaking , paddle boarding, I'm back to ALL my former activities. So, get your treatment plan in place, take it step by step, try to keep life as normal as possible and you'll get thru this. Try to keep good nutrition, because chemo makes food taste wrong and your appetite will suffer. But it gets back to normal after. Once your treatment plan gets going, you'll feel better, more in control. I'm feeling great, healthy, enjoying life ,and you will be too! Best wishes! 💖

Luckynumber47

Just to clarify things a bit - the Oncotype test is only used with 3 positive nodes or less so it would not be applicable in this instance

ElaineTherese

Hi!

I was diagnosed at Stage IIIA (old system), and yes, it's considered early stage. Being Stage III is not the end of the world, nor is being Stage IV for that matter. I also did four ACs and 12 Taxols; it wasn't a picnic but it was doable. ((Hugs)) You can do this, and before you know it, you'll be four years out like me.

Shellsatthebeach

My oncologist and surgeon at Dana Farber said to me, " Stage is not important. How you respond to treatment is and will be the best predictor of outcome."

Simbobby

I was diagnosed Stage IIIB and 24 positive lymph nodes of 26. Breast surgeon said this is not a death sentence. The thing that worked for me was to take it one phase at a time because looking at the full journey was too overwhelming.

Chemotherapy - check

Double mastectomy - check

Radiation - check.

I am now scheduled for reconstruction mid March.

After that, my oncologist said “we will meet every six months and grow old together”

You can do this.

bestrongforeveryone

thank you Calikelly, wish you all the best

bestrongforeveryone

Simbobby thank you, all the best

IAmElaine

Hi bestrong. Our diagnosis are so very similar. My ILC was at 11 o'clock in my right breast. My tumor was large and I had 11+ nodes out of 21. This was after chemo! I chose a bilateral mastectomy.

I will hit my 15 year mark at the end of this week, March 1st. There are many stage 3 ladies who are hitting their 13, 14, 15 year marks now.

Do everything you can to kick this beast to the curb. Live your life fully every day. You can do this.

bestrongforeveryone

thank you Elaine, it does sound very similar except mine was sugery done first. glad to hear that you are doing so well, that encourges me! thank you

santabarbarian

Simbobby what a good MO you have!

Salamandra

Hey bestrongforeverybody,

It looks to me that based on the new staging guidelines, you would indeed be stage 1B. Here is the link to the document I got the screenshot from: page 48 of AJCC 8th Edition Breast Cancer

They made the new guidelines because the old ones were consistently ending up with situations were certain previously stage 1 configurations were consistently having statistically worse outcomes than certain previously stage 2 or stage 3 configurations, and so on. The new guidelines should more accurate in terms of prognosis and they are based on decades more of more clinical data.

But like others have said, staging isn't everything and it is all statistics. Nothing can tell you for sure what your path will be. The only thing we can all do is get the best health care we have access to, take care of ourselves, and live the best life we can - whatever that means to us.

bestrongforeveryone

thank you salamandra

you are absolutely correct! also provided very useful resource, thanks!

bestrongforeveryone

simbody, what a great MO you have

beeline

bestrong, we have very similar diagnoses, small tumour with lots of nodes. It was such a surprise for me, everyone assured me they’d be clear and I’d have surgery and maybe hormone therapy and be done. As it turned put, I needed chemo and the whole 9 yards — same treatment plan as yours. As others have said, we are not statistics and much o what you read is based on outdated studies and treatment protocols. Good luck with chemo. It is tough but you will get through it!

karen1956

I had 8/12 positive nodes and stage 3A ILC - I'm here 13 years later!!

santabarbarian

Dang, by Salmandra's re staging posting, my 2B went to 3C (Just because it is TNBC)! Good thing I am reading this after a successful pCR!

Nas

Somebody knows what N1** is??? In the bottom of the page says N1mi ( micromet) does not include. So what is N1**???

AgentMo

I tend to think that N1** means if your are N1 simply due to a micromet, you count as N0. So basically, these stages only apply if you had "real lymph node mets". Hence with only micromets you would have a better prognosis.

sbelizabeth

Bestrong, your story has similarities to my story. After I found a 3-inch area of peau d'orange, a mammogram and US found a 8 mm lump beneath it. Everyone ignored the skin signs and focused on the teeny little lump. A tic-tac. At the lumpectomy and SNB, my sentinel node was so chock-full of cancer it wouldn't take up any of the dye or tracer. My brilliant surgeon groped around until she found a firm lump, which was positive for cancer, and she then removed 28 nodes. Six were positive. Yowza. And then...well, look at that...a biopsy showed that umbrella of skin was also chock-full of cancer.

Big-gun chemo, mastectomy, rads, reconstruction...none of it was a picnic, but it was all do-able, ONE DAY AT A TIME. Seriously. Just get up in the morning, put one foot in front of the other, and you'll get through it.

Forget staging. It's nothing more than a way to help determine treatment modalities and track statistics. It's pretty much meaningless to you, as an individual. Your cancer doesn't read any staging criteria and it doesn't care if it's labeled Stage 3 or Stage 1. It WILL run, hide, and die, when it gets defeated by all your treatment.

I know these are dark, scary days. I promise...I PROMISE...there are brighter days ahead. Blessings--SB

AliceBastable

I saw a great comment somewhere on these boards last year: "You don't have to be brave. You just have to show up." It really helped me during tedious or overwhelming times.

bestrongforeveryone

thank you SB

your words made me cry even.. it encourages me, yes, there are brighter days ahead, thank you

lkc

Hi Be Strong.

Sorry you have joined us,..however solid information and good support helps tremendously to ease worries in the early days. Extranodal spread means cancer was found outside of the affected lymph nodes.

I was dxed with stage IIIC , 12 positive nodes, out of 14. My sentinel and axillary nodes were not only totally replaced by tumor, but Extraencapsulated ( nodes broken open). I had lymph and vascular spread. My ducts, lobes nipple and chest wall were all affected. I never got clear surgical margins after my last surgery. Blah , Blah blah, pretty bad prognosis.....

That will be 14 years this May and I am well.

It is by no means an easy time, but you will get through it and be ok. The reality is our survival has exponentially increased. ( I had surgery first then DD AC and T.) Come here often for support and comfort.

Wishing you a gentle ride on his road.

muska

Bestrongforeveryone, it takes time to wrap your head around this diagnosis and what comes with it, but it is important to understand two things from the start:

First, no matter the number of impacted nodes if no mets are found in distant organs it is still considered early stage cancer. Sometimes 'locally advanced' is used to describe extension to lymph nodes but it is still early stage as long as it is not found in distant organs.

Second, staging is just a way of grouping patients with different characteristics into buckets. Whether someone is stage II or stage III for example, has no importance for the treatment one would receive. Recurrence risks might be slightly different but those recurrence risks are just statistical averages.

Like you I had multi-focal (two tiny tumors) with several nodes with macro mets (quite unexpectedly.) Doing well so far and absolutely don't care what stage label I was assigned almost six years ago.

Good luck to you!

Lillo57

When using the new staging, keep in mind that there is a difference between clinical & pathological staging, and also whether or not one had neoadjuvant chemo

bestrongforeveryone

thank you Ikc, your story is really ispring

santabarbarian

If your chemo kills you cancer, it kills it... This is the important truth of the Dana Farber MD quoted above. Further, if you have no affected nodes you can still progress or recur. Some cells bypass the nodes and keep going. For both these reasons the response to the chemo is the key, because invisible cancer dies too, alongside visible cancer.

I had one majorly affected node (per imaging) and three others that were swollen and probably either affected or on their way to being affected. But the chemo was very effective and I got a complete response.

My surgeon was poised to take all my level one and two nodes, simply based on the protocol of my original diagnosis being more than 3 affected nodes. I said, yes, but there appears to be a pCR... how am I in a worse situation than a woman who had three nodes at diagnosis and STILL has three nodes? She agreed that I was in a better situation and that trends were moving towards taking fewer nodes but that the protocol was what it was... Ultimately we agreed she'd take 5 nodes as a sample (more accurate than just one) and if there was any live cancer, we'd do a 2nd surgery to take the rest of the nodes.

Magnolia-mom

Lillo57- do you know if the new staging is relevant to neoadjuvant therapy? My clinical diagnosis was based on size and nodes from a mammogram; tumor chemistry was not a part of the staging. I want to be 1b too!

Salamandra

It looks to me (based on p26-27 of the deck I shared) that they are still working on the new pathological staging for neoadjuvant therapy situations. The current new pathologic staging does not apply to cases where neoadjuvant therapy was used, according to my reading.

The new clinical staging guidelines apply though. From what I can tell (p41), T2N1M0 grade 2 ER+/PR+, HER2- would be a clinical Stage IIA.