Looking for Advice

Boobietrap

Hi Everyone,

I'm new to this forum and am just looking for some advice. I'm recently diagnosed Stage 2 breast cancer with lymph node involvement. It's been quite the roller coaster and to be honest I feel like I've gotten a bit of a run around so just hoping to learn from others experiences. I was diagnosed with Stage 2 IDC earlier this year with lymph node involvement. Tumor size estimated around 1.6 cm, I'm ER/PR positive, HER2 negative, 37 year old, maternal grandmother had IDC w/mastectomy in late 70's, genetic testing came back clear.

I underwent a lumpectomy with SLN biopsy. Once the results finally came back my surgeon recommended that we do a full mastectomy because none of my margins came back clear and they found have extensive DCIS. My pathology report came back 1/6 nodes, I have ENE, vascular lymph system listed as "present", my margins were not clear and there is IDC listed as minute foci on the margins. We are still waiting on the Oncotype score as it wasn't ordered at the time of surgery so that's pushed us back at least another two weeks.

My doctors refuse to give me any type of indication on if I will have to pursue chemo, nor do I know if my stage has changed at all given these new findings. My surgeon is very concerned about how much DCIS there is, my age and likelihood of recurrence hence the mastectomy. As I've said many times I would prefer an aggressive treatment, I'm a young mom and want to be around for many years.

I have to admit I feel like this has been down played by my doctors...literally my pathology results hadn't returned and I was being told see you in 6 months....once the results came in I think they were all surprised. They are also terrible at communicating with each other...I've been to multiple appointments now where I have had to update them on various conversations regarding my case.

Any advice on how to handle? Anyone been through something similar or have had similar diagnosis...I'm all ears to learn about others treatment plans. I know that breast cancer treatment is unique to the individual...just trying to mitigate worry and expectations for myself. We are looking at getting a second opinion once the Oncotype results come back. (Which follow up...I read that you shouldn't use Oncotype if you are node positive, anyone else run into this as well?

Thanks for your help and feedback.

Boobietrap!

Moderators

Hi Boobietrap, and welcome to Breastcancer.org!

We're so very sorry to hear of your diagnosis, but we're really glad you've found us. You're sure to find this community a wonderful place for advice, information, and support -- we're all here for you!

According to our main Breastcancer.org site, you're correct -- the Oncotype DX test isn't for node-positive cancer. See Oncotype DX Test. You may want to ask your doctor about the EndoPredict test, which is used to predict the risk of distant recurrence of early-stage, hormone-receptor-positive, HER2-negative breast cancer that is either node-negative or has up to three positive lymph nodes.

We hope this helps and we look forward to hearing more from you and supporting you all the way through your treatment and beyond!

--The Mods

leftduetostupidmods

It is very scary *hugs*. I was 48 at diagnosis and went in knowing I had extensive DCIS. I had already chosen to have BMX, but then surprise, surprise, look at my signature. BMX was the best decision I had made, even not knowing what was to follow.

Wait until the pathology from the mastectomy comes back. A lot can change between the before and the after, and having the whole thing taken out, even with the heartache of what our breasts mean for our femininity, will bring you a lot of emotional relief.

Is there any way you can change your team? Any cancer center in your area?

Garnersuz77

Hey Boobietrap!

Hopefully you already have your Oncotype score back but if not I wanted to let you know that there is now an official Oncotype test for node positive I just had it done in late January. It’s called Oncotype DX Breast Recurrence Score Micromets & Node Positive (1-3).