Just got IDC diagnosis - Triple Positive and SNB up next

alleycat5

Hi all! I've been reading through these boards since my biopsy on 2/25 and an original DCIS diagnosis on 3/3. I just wanted to say I've been so thankful to have found this community! I've been able to get so many questions answered even when I couldn't post due to some of the tech glitches.

I found out today pathology on my lumpectomy shows it's beyond DCIS and is also IDC. It's 6mm, stage T1B and grade 1 with 5 of 9 on Nottingham. I'm ER+, PR+ and HER2+. My HER2 was 95% and 3+ of 3+ staining. Margins were not clean. Surgeon called me this afternoon to tell me he's going back in for SNB and to try and get clean margins this time around. He also mentioned radiation is now pretty much mandatory for me (which is fine, because I was going to choose to have it anyway), but that now chemo is on the table too, and the MO would have to make that determination. The chemo scares me so much. I think I'm still trying to process all of this. I think I've overloaded my brain with trying to research everything at once.

The waiting between tests and results has been the absolute worst part of this. I know we have to take it one step at a time, but I truly wish I could start all of it tomorrow. I worry how I'm going to tell my kids. I wonder what to tell other people. Unfortunately a bunch of people knew the pathology results were coming in today or tomorrow, so I know they'll ask. We've (my husband and I) decided for now to hold off telling anyone about the IDC, and just say the margins weren't clean so surgeon is going back in for that. Once we get results of node biopsy, we will figure out what to say.

Anyway, sorry to ramble, but I feel like I'm just all over the place right now and needed to get some of this out. I hate to be a part of this group, but so very, very thankful it's here!

SarahMaude

So, you’ve got good news among the disappointing news. Dang, it’s iDC. Good, it’s tiny! Dang, it’s HER2 positive. Good, they’ve got really good treatment for that. Dang, they have to go back for more. Good news that the pathology let you know now before too much time has passed.

The waiting. That has also been the hardest for me. I’m one of those people who knock things out as quick as I can. Patience isn’t my best trait. We can work on that together. This community has been a real sanity saver. I do not always care for the general public, but for some reason i continue to be so impressed with the wit, wisdom, and authenticity of the women I’ve met here. That’s why I’ve suffered the tech glitches, and it’s why I’m glad to meet you on our shared journey.

And what to tell people. That’s tough too. I’ve got a tiny circle I keep fully informed. The rest, I stay upbeat and let them know about next steps without much detail. And, I’ve held any big group announcements because I really don’t want to spend my energy comforting near strangers or hearing about their wife’s aunt.My kids are grown, and I tell them the truth: most of us with early stage breast cancer do really well with treatment. It’s not 1900, 1980, or even 2011. Treatments keep getting better, and so does quality of life during treatment. You are going to do well. And we are here with you.

alleycat5

SarahMaude,

Thank you so much for your response (here and on the other post). YES to all of this! It is the good news and the bad news stepping forward and back. And we can definitely work on the patience together. It's in pretty short supply for me.

My kids are grown, one in college and one out, and as anyone would, I don't want to worry them any more than I have to. I have some first hand experience with this part. My 85 year old mom is a 33 year breast cancer survivor with no recurrences!! Diagnosed when I was in college. I keep going back to that and reminding myself of it. It's tough for me to be upbeat all the time when talking about this, but I have two people in my life I can "let loose" and just tell them where my head is at and how much this quite-frankly sucks. So happy to have the opportunity to do that part on here too and find the support I know I'll need through this journey.

Wishing the best for you on your journey too! We've got this - together!

Moderators

Hi alleycat5, and welcome to Breastcancer.org.

We are so very sorry to hear of your diagnosis, but we're really glad you've found us. As you can already see, our community is full of amazing members always willing to offer advice, information, encouragement, and support -- we're all here for you!

You mentioned your mom's diagnosis -- have your doctors talked to you about genetic testing? Here's some more information on how it could benefit you and help inform your treatment plan: Genetic Testing

Also, we thought you'd find this page helpful, tool: Talking to Your Family and Friends About Your Breast Cancer Diagnosis

In addition, the Triple Positive Group forum is a great place to get answers and advice from others with a similar diagnosis.

We hope this helps!

--The Mods

alleycat5

Mods - Thanks for those links and for all you do!! I asked years ago about genetic testing, but at the time was told if my mom was over 50 at the time of her cancer, I wasn't eligible for it. She was 51. This was when it was relatively new, and crazy expensive and hard to get at the time. I do plan to ask again, especially for my own daughter. I will definitely read up on all those links. Thanks again for giving us a place to find some sanity in this crazy world we find ourselves thrust into. It's truly appreciated!

Moderators

You are so welcome! We are happy to be here for you.

Please let us know what your doctor says and if you need any other resources!

--The Mods