Need help with what I know.

LoverofJesus

Hello everyone. So yesterday I went to see my MO. I have been diagnosed with ILC.
I have some questions for you all that might help me ask him the right questions.

1. He staged me stage lllb. He said because of the size and even though the CT did NOT show it attached to my chest wall he thinks it maybe a little. And even though a CT didn’t show anything in my lymph nodes (nor did a previous ultrasound) he thinks it could be. And I have a small place on my skin. So would that still constitute a stage 3?

2. He wants to do chemo first before surgery which I understand. With it being AC +T. My question is what it the usual protocol for how many and how long with these for most of you?

I do trust him snd I believe he has sought other medical opinions as he came up with my treatment plan. I just really don’t know what questions to even ask. And I know most of you do.

Please any advice would be wonderful and my team seems to be moving forward really quickly.

Thank you in advance for the help.

LivinLife

My situation was not as serious as yours - so I cannot offer answers for your questions. I just want to send support. I hope others will be along soon to respond with information....

Aram

I am sorry you are here. Do you know you hormone receptors and Her2 status? Usually chemo first is for ER/PR negative.

ElaineTherese

Hi!

I wasn't diagnosed with ILC, but I did do AC+T. I had dose dense AC (four infusions, every two weeks) and twelve Taxol infusions (weekly).

I wouldn't worry that much about stage; back in 2014, I was diagnosed at Stage IIIA (lump was 5 cm+ on an MRI, plus I had one compromised lymph node). However, I was never formally staged because chemo wiped out all of my active cancer before surgery. So, we'll never know for sure if my lump was really 5 cm or whether other lymph nodes were affected. Plus, since 2014, there's a new staging scheme, so I would probably be diagnosed at a different stage today.

I think the real issue for you is being diagnosed with ILC. There's some controversy about the effectiveness of chemo for ILC vs. the effectiveness of hormonal therapy. ILC is less common than IDC and it's sneakier. Does your oncologist have a lot of experience with ILC? That would be a question I would ask.

moth

Hi, I'm sorry you are dealing with this diagnosis. It really sucks and everything seems overhwelming and scary at first.

You need to find out what the hormone profile of your cancer is. That's the estrogen ER, progesterone PR and HER2 that you see in our signature lines with the + or -. Treatment varies partly based on hormone markers. You also want to know the Grade as that is generally a proxy for how fast the cancer is growing.

On the main page of BCO there are tons of articles to explore about your cancer which will help you understand what is happening & what is being planned https://www.breastcancer.org/symptoms/diagnosis

There is a staging page as well. Skin on the breast is 3C. https://www.breastcancer.org/symptoms/diagnosis/st...

AC + T can be given over differing schedules. The standard is 4 doses of AC given every 3 weeks and then 12 weekly Ts. Dose Dense speeds that up roughly by half - but not everyone can tolerate dose dense. Just depends how well your body responds to the treatment.

I hope you check out the ILC forums for lots more info specific to your subtype of cancer https://community.breastcancer.org/forum/71

This NCCN brochure is also an excellent starting point https://www.nccn.org/patients/guidelines/content/P...

You might want to start a binder for documents and lab results. Also find out how to access your medical records - you will want your own copies for second opinions etc.

I hope that gets you started. Once you have your treatment dates, join up with the monthly chemo threads - you can compare notes with people going through chemo at the same time as you and share tips for dealing with anything that comes up.

best wishes

ShetlandPony

For what it's worth, LOJ, I understand your onc's plan to hit this hard with chemo first, because of the stage. This may be your best way to not go stage iv. I would hate to see you undertreated. What was your Oncotype score? It seems your onc has some intuition that there may be a bit more than the imaging is showin, since ILC may not show itself well on imaging. And before anyone comes along to quote the old "ILC does not respond to chemo" I will say that yes it does. I think this is especially true the more advanced it is, because cancer mutates over time. Are you pre- or postmenopausal? If you are premenopausal the chemo should cause chemopause, which has the effect of hormonal therapy and may be part of the benefit of chemo in cases like yours. I would not focus on the exact number assigned to stage. The important thing is there is no evidence of mets in bones, internal organs, etc. and you can treat with curative intent.

As for questions, I would ask whether given the stage they can do any genomic testing on the biopsy tissue before chemo, in case that will be useful later. Also you may want to confirm that after chemo you will have hormonal therapy, and hopefully an aromatase inhibitor rather than tamoxifen because sometimes tamoxifen is less effective for ILC. (See BIG98 and other studies.) Think about icing your hands and feet during taxol to prevent neuropathy.

Aram, ILC is usually ER+ PR+ Her2-. Is this the case with you, LOJ? And which of these have you had: nuclear bone scan, PET-CT, CT w Contrast, MRI? Ask if your onc wants to order "extra" modalities to make sure you have the whole picture, again because of ILC sometimes (not always!) being difficult to image. Dr. Ulaner discusses imaging ILC at Lobular Breast Cancer Alliance lobularbreastcancer.org

LoverofJesus

Ok guys so I thought I put all of this in my profile but maybe I didn’t. I am stage 3 because I have a small spot on my skin and the size. I do not have lymph nodes involved or anything else outside of the breast. The goal is to shrink down to nothing before surgery and they have found this yields best results of cure and staying cured.

I am 100%ER/PR positive. And Her 2 -

I have had bone scans and a CT all clean even lymph nodes and I have had a strategic US on my lymph nodes and nothing was found. Which the dr just as precaution is going to do again.

Like I said the stage three is about size and the dot on my skin which is NOT inflammatory the MO said. It’s just lobular on the skin. The way I understand it this is protocol for getting cancer free in order to do surgery snd not have any cancer. And that always makes better response.

I know there are probably some that have had it this way. Any advice is great

moth

After you've updated your profile you have to go to another section called 'settings' and choose which parts of your profile to make public. Then it will show up on the signature line.

Any invasive cancer on the skin of the breast is Stage 3C according to the current staging guidelines. Techincally, final staging actually doesn't occur until after surgery but having chemo in advance makes staging a bit odder. But lots of people have chemo first. It's called neoadjuvant chemo & is not unusual at all so yes, you'll find people on the site who did it in that order.

Do you have a start date for your chemo?