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Topic: Diagnosed today with IDC

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Aug 12, 2019 11:46AM

Deenster wrote:

Well, after getting a BiRad 5 and having a core biopsy done last week, I got the call today that I have IDC stage 2 that is ER/PR + and HER2 +. She also said there’s evidence more is in its early stages. Feeling so overwhelmed right now.

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Aug 12, 2019 12:04PM DorothyB wrote:

I'm sorry - it really is a shock getting the call. I remember the overwhelmed feeling. When is your appt to find out options? Remember that this is a long journey, not a sprint. Be sure to take lots of notes on everything - maybe dedicate a notebook that you write everything in.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Aug 12, 2019 12:33PM Elephant wrote:

I am so sorry that you have joined the club that no one wants to join. You are at the worse part of your journey: getting the bad news, but not yet having a plan of action - it is totally overwhelming. Like DorothyB said, make sure that you take notes on everything and write down your questions. The first appointment that I had was with the BS and I had about 3 pages of questions to ask him. Although you are in shock now, the journey gets easier as you get more information and begin to feel that you are in control of things. This is a great forum to be on, the ladies here have all been through what you are going through and are only too willing to help, so feel free to ask any questions that come to mind on this forum.

Dx 11/5/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 12/15/2018 Lumpectomy: Left Radiation Therapy 2/19/2019 Whole-breast: Breast Hormonal Therapy 4/14/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 12, 2019 03:33PM PurpleCat wrote:

I"m so sorry to hear this news. As others have said, you are in the worst part, knowing it's cancer but not having a treatment plan yet. The next several months won't be easy, but you will get through it to the other side. You'll find great information and supportive understanding people who know exactly what it's like here. Hang in there, and if you need to, ask your doctor for a short term prescription for anxiety or insomnia to get through the waiting period.

Dx 10/2018, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy Surgery 10/18/2018 Lymph node removal: Sentinel Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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Aug 12, 2019 03:52PM Beesie wrote:

I'm sorry you are joining us here.

Taking notes and getting the right information is important, because there are different protocols for different types of breast cancer.

Are you certain that she said Stage 2 and not Grade 2? Usually staging isn't done until after surgery.

As for the possibility that there is more "in its early stages", that sounds like there might be calcifications that indicate the presence of DCIS. About 80% of cases of IDC also include some DCIS. This is because most IDC develops from DCIS, so they often are found together. DCIS is a non-invasive cancer, and while any DCIS will need to be surgically removed, because it's the lesser condition, it won't affect your staging, treatment plan or prognosis. So it's scary to hear that there is more, but if it's DCIS, it's not something to worry about.

Do you have an appointment scheduled with a surgeon? When you next see a doctor, make sure you get a hard copy of your biopsy pathology report, unless you already have access to it through a patient portal.

Let us know how you are doing. There are lots of us here who've been in your shoes.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 12, 2019 04:17PM Deenster wrote:

Thank you all for your support. Beesie, you are right. The early cancer she is referring to is DCIS. She did say that, but my head is spinning. I really thought she said stage, but grade makes more sense as she said it falls between 1 and 3. To be honest, I may have missed some of what she said as my world suddenly stopped when she said “I’m sorry. “ I see the surgeon on Thursday

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Aug 12, 2019 06:05PM ARL624 wrote:

Hello. Today, I too got that call. IDC, grade 2. Left breast has two areas plus one lymph node that we know of right now. Estrogen and progesterone responder positive. This may be the extent of the information I know along with this website.

Like you, my head is spinning and my thinking is not clear. I am scared. I'm a mom of two small children, married, bread winner and in the dark about what comes next. Tomorrow I speak with the doctor to set up an appointment to go over options.

For those of you who are well beyond my point of entry can you tell me the process? For instance, diagnosis to staging to treatment? Did you get a second opinion on treatment? Diagnosis? What in the world did you do to calm your nerves through this harrowing process? When did you talk to your children?

Right now I’m waiting for more information before I do anything. And I’m sobbing, this feels like horrible news.

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Aug 12, 2019 07:03PM DorothyB wrote:

ARL624, the surgeon had the biopsy done and called me w/ results. He recommended lumpectomy instead of mastectomy and we scheduled surgery. I didn't get appts w/ radiology oncologist or medical oncologist until after post-surgery visit w/ surgeon.

I opted to get second opinion visits for radiology and medical onc and am glad I did because the first radiology onc wasn't going to do breath holding for left breast radiation. Also glad I did because the cancer center I chose for second opinion re-read the slides from surgery pathology (77 of them) and found lymphovascular invasion that wasn't mentioned in first pathology report. This made me more sure to accept recommendation for radiation.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Aug 12, 2019 08:44PM Moderators wrote:

Welcome, ARL624. We're so sorry you find yourself here, but we hope you find this community to be a source of support, encouragement, and information as you begin down this road. The first days and weeks are difficult, but hopefully you start to feel a bit more in control once you've met with your oncologist and medical team and have a plan in place. We're all here for you, and you are not alone!

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Aug 13, 2019 05:57AM - edited Aug 13, 2019 06:02AM by mom2bunky

I'm sorry. That sucks. Cancer SUCKS. Believe us that this is the worst part of the ordeal. The beginning, when you're stunned, and scared, and know almost nothing. It does get better once you get information and formulate a plan with your medical team. You're not alone, heaven knows. good luck, come back often.


I can tell you my process for my diagnosis: i saw the breast surgeon first, who explained both the details of the biopsy and my options. I opted for lumpectomy, which meant radiation. So I then met with the radiation oncologist before the surgery. I had the lumpectomy and plastic to the healthy breast so they match. Lots of unknowns are answered/confirmed when they biopsy the lump. Then if you are ER/PR + with clear nodes, they may do the Oncotype test, which determines what your benefit of chemo is if any. You recover from surgery, you have radiation, and then, again, if you're hormone positive they'll want to put you on hormone therapy, so I then met with the medical oncologist about that.


The order of things varies though. But the above is how it worked for me. I didn't get second opinions because I liked both the breast surgeon and the radiation oncologist very much from the get go. Depending on how I do on hormone therapy, I may or may not eventually do another MO. But for now I'm good.

Dx at 55. KI-67: 18. Oncotype: 24 Dx 3/26/2019, DCIS/IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 5/10/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/26/2019 Whole-breast: Breast Hormonal Therapy 8/6/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 13, 2019 07:58PM Deenster wrote:

Thanks for all the support. I’m definitely going through a mix of emotions. Yesterday I was in tears most of the day after getting the call. Today I almost feel like I’m in denial and the breast surgeon will tell me something different on Thursday, though I know that isn’t going to happen.

What can I expect at the appointment? I’m assuming she’ll go over images and results with me, but will she also come up with a plan at that time, or order more tests first? Just trying to mentally prepare myself.

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Aug 13, 2019 08:15PM Goldfish4884 wrote:

My first appointment was with the breast surgeon. She spent a good hour with me, went over my pathology report and gave me my options. She discussed all the percentages with each option. I chose double mastectomy with reconstruction rather than lumpectomy and radiation. I didnt need chemo because my oncotype score was only 16. Good luck to you as you find out your options. Before any final treatment decisions I also met with a radiologist and a plastic surgeon.

Dx 9/28/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 10/22/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement
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Aug 14, 2019 04:48AM Valentine214 wrote:

Deenster:

I see that you are in NJ. So am I. Take some comfort in the fact that in this state you are most likely to get very high quality care. There are several NCIs in the state and if you are not a patient at one right now, I would recommend getting a second opinion at one of them just to put your mind at ease knowing there is a consensus regarding your treatment plan.

As for your anxiety, I completely understand. I cried for days after my dx. Ask for something to help with your nerves, absolutely no reason to have to deal with that on top of everything else. I needed to have my husband with my at appointments as I had a really hard time comprehending anything that was being said to me.

I had the same dx as you, ER/PR and HER2+. I know it is scary, but the prognosis for our specific type has improved markedly in the past decade. The HER2 makes the treatment plan longer with having to have Herceptin/Prejeta for a year, but they are miracle drugs for us. I did not have any side effects from them and so far after a year and a half on Exemestane (hormone blocker), I am just a little stiff in the mornings (I take Glucosamine and Chondroitin which helps greatly). Chemo was not a walk in the park, but with the anti nausea and anti vomiting drugs they give you, I was not sick one day. Yes, you start to feel tired and weak towards the end, but if you are in relatively good shape, you will be able to handle it. Radiation for me was just the inconvenience of having to go everyday for 6 weeks.

Everyone will tell you that this is worst time, just being diagnosed with no treatment plan in place. Once you start treatment, you really do feel like you are doing what needs to be done to eradicate this from your body no matter what side effects you may (or may not) have. It is a sense of taking back control of your life and your body.

Please feel free to private message me if you like. I am here to help if I can.


Stacy Dx 9/19/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Chemotherapy 10/17/2017 AC + T (Taxol) Surgery 3/22/2018 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 4/23/2018 3DCRT: Breast Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Aromasin (exemestane)
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Aug 14, 2019 06:00AM JenInMass wrote:

ARL624 - you asked about when to tell children. I think a lot of that varies not just with the age of your children but, if they are somewhat older, their personalities and what knowledge they already have about cancer or other medical conditions. There are some resources on this site (it's not letting me post the links but if you type "children" into the search bar it should bring up one article on talking to young children and one to older children) that might be helpful.


I can tell you for my own daughter, who is 7, it was somewhat a gradual process. There were a couple of times in the pre-diagnosis stage that I'd had to change my work schedule around to get to extra mammograms or biopsy, and she wanted to know why I was at home in the morning instead of at work, so I explained that they needed to get more/better pictures of my breast, sort of like an x-ray but different machines, because that's a way they can check for cancer, and then that there were some strange-looking things on the picture so they needed to get that funny part out so that an expert doctor could look at it under a microscope.

She already knew a little about cancer, mostly from a combination of a TV show she liked about a girl starting high school after having cancer treatment (Alexa and Katie on Netflix, if anyone's wondering) and a couple of episodes of a podcast for kids called But Why? So I told her about the diagnosis later the same day I got the call, when I picked her up from camp, and focused on how my breast cancer treatment was likely going to be very different from what Alexa on the TV show had. (No lengthy inpatient care, and from what my BS had told me at that point, a good chance of not needing "the kinds of medicine that make your hair fall out.")
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Aug 14, 2019 06:01AM Deenster wrote:

Thank you for the support Valentine 214! It’s definitely comforting to know someone has been in your shoes and made it through. I’m going to Thomas Jefferson in Philadelphia, which is an NCI center. I think I would have handled the diagnosis better if I didn’t hear HER2+. All my mind can think about is an extra year of treatment and is aggressive and more likely to reoccur. I’m 44, so hopefully I’ll be able to handle what’s about to come my way pretty well.

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Aug 15, 2019 06:50PM ARL624 wrote:

That’s helpful. Thank you. We love But Why? In fact we went to see them in person so I will look up those episodes and listen to them.

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Aug 18, 2019 06:20PM OnTarget wrote:

ARL624- for me, I met with my BS first who decided what further tests to do: breast MRI, genetic testing. After that, we decided on BMX. I next met with the PS.

Once I'd met with both doctors and my tests were all done, they scheduled the surgery. That was actually one of the best days because all of the waiting was done and we were finally doing something proactive.

Deenster- we've all been there with the anxiety! It is awful at first, but after the surgery things get better. My surgery is in the rear view mirror, and my TE's don't look too bad. I think I'll like my fake boobs when they're finally done. I've just started chemo and it is not bad so far. I feel great and I'm active. I don't have any anxiety over the cancer and once the chemo is done and I do my exchange I'll just look back on this year as a tough one. I'm feeling normal now, and upbeat, and I can't wait to get this behind me!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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