True ILC staging

Leslie13

There may be better areas to ask this question, but with ILC, I ask most diagnostic and treatment questions here.

I was just re-reading my pathology report and it stated the 4/22 nodes with cancer cells were all less than 1 mm. I've been reading in other areas that lymph nodes need > 2 mm to be considered positive. Initially my sentinel node was classified negative, then a small amount of cancer was found.

My surgeon recommended an ALND, which some are saying it's unnecessary, or even barbaric. Afterwards, I was made to feel I had a high-risk -- 44% chance of reoccurance. With all the research here and on my own, I found Standard Chemo wasn't effective for Lobular, and questioned Rads when I had a straight to implant, which I was told with all my screenings, was safe to do.

It's exhausting trying to select treatments for ILC, and fighting to not be over treated. Now I'm wondering if, by definition I'm not a IIIa as told

I'll breath easier knowing the truth.

Thanks all

marijen

Found this today Leslie

Number of negative lymph nodes is associated with disease-free survival in patients with breast cancer

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4324425/

My staging IIIA determined by my MO, was downgraded to IIA by my BS after surgery. Go figure. It seems so arbitrary!

marijen

Some more here - good website http://www.breast-cancer-research.com/content/17/1/12#sec8

Conclusion

Lobular carcinoma is an important breast cancer subtype with some peculiar clinical and biological characteristics compared with the more commonly diagnosed IC-NST. Rather surprisingly, and despite the good prognostic features of the primary tumour and good response to endocrine therapy, the long-term outcome for patients diagnosed with ILC is, in some studies, worse than for IC-NST. There remain significant challenges, therefore, managing patients with this specific disease. Although considered a 'special' histological type, the disease is heterogeneous, and so identifying patients with poor prognostic subtypes will likely provide benefit in delineating more personalized and aggressive treatment or monitoring for disease progression. A detailed assessment of the genomic landscape of a large cohort of ILCs with long-term follow-up and/or in the context of treatment resistance will no doubt be essential to moving forward with precision medicine for patients diagnosed with this tumour type.

Leslie13

Why am I not surprised your MOgraded it too high. I talked at length with a Radiolgy Oncology nurse at the American Cancer Society yesterday. I've been in a tizzy honestly since being upgraded to stage IIIa and trying to make the best treatment decisions, given I have ILC. I've been receiving a ton of pressure to to chemo and rads, which is contradicted by research.

The nurse said I was a IIb, and it's a very gray area as to whether to use rads on micromets ( 2 mm or less). They haven't been able to detect them that long and now don't know what to do with info. Studies show about a 50/50 benefit. And I'm only taking about small amounts of micromets, so I don't want to imply larger tumors can go without more aggressive treatment.

And Maryjen, thanks for the reminder about long term results with ILC. That's why I've insistied on more throuogh genetic testing. We need personalized treatment, or at least different treatment. The nurse was honest in saying there's a lot of research in the works, but nothing close to FDA approval.

Maybe I need to plan a lengthy Eurpean vacation

Annette_U

You need a European vacation for sure!

You made decisions and looks like now you have completed surgeries. Continue the hormone therapy, have your uterus lining checked yearly for changes and move forward. We are all different and from what I see the oncologists and surgeons are going about treatment differently for each of us - just look around these ILC boards and you'll see it is true. I had radiation and neo chemo and the mass did shrink by approx. 30%. The radiation has left the muscle rather stiff and my mobility is not as good in that shoulder/side/arm as my right. It has been 3 years for me and so far I'm still NED and living it up. If you are concerned then maybe you can ask about oral xeloda - I think there has been a study recently on giving that after neo chemo for ER PR + when surgery detects residual cancer.

mary625

A couple of comments. Those on Femara/Letrozole, as opposed to Tamoxifen, do not get uterine cancer screening. I guess that the risk is less. Also, I inquired about oral Xeloda or Palbociclib with my onc this week, and he said that they are both still in study for Stage III--i.e., not available to the average patient. This onc is strictly by the book with treatment. I suspect some oncs may be prescribing now for women coming right out of treatment, but really don't know for sure.

Maggs09

Marijen, would you please, send me that link to the research? I can't open it...

I'm also ILC, unfortunately with many nodes, so there was no question whether I should do chemo or not;

I'm still on tamoxifen, by choice, even thought I had a full hysterectomy end of 2014...;

Magda

BarredOwl

Maggs:

You can just google a string of text from the quote to find most documents. I think this is the link for the article cited by Marijen in her 5:49 PM post:

http://www.breast-cancer-research.com/content/17/1...

The article is one of several articles about lobular carcinoma published in the journal Breast Cancer Research, and included in this Article Collection:

http://www.breast-cancer-research.com/series/LBC

BarredOwl

ng6916832

in reply to the limited definitions we get which makes it harder than ever to make a decision as to the treatment one agrees to i refer you to and amazing research, here's the link http://www.ratherproject.com/index.php

jojo68

Poor long term survival....depressing.

Sunnyone22

Hello to all the wonderful women here in Lumpectomy Lounge. I have been reading nearly all of your posts even though I've not posted myself for awhile.

I really have no updates because healing is going well since my 2/16 lx. I'm waiting on my OncotypeDX test results - hoping for a low score so I don't have to consider chemo. Assuming the best (as I always try to do!) score will be low and after Thursday's two-week post op with my surgeon Thursday, I'll make appointment with my rad. Onco to start down the radiation highway.

I hope everyone realizes that no posts doesn't mean we've lost interest. Some of us lurk and get VERY helpful info from your posts. It's just that without anything further to contribute, (AND because I'm busy with life!!), computer time is limited. Not so limited though that I don't keep lurking here in the LL!

Wishing everyone the best treatment outcomes and positive outlooks.