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Optimistic_Missouri Member Posts: 24
edited January 2022 in Just Diagnosed

I know it was coming, but I received my official diagnosis today following a biopsy last week. Invasive ductal carcinoma, grade 3 in left breast and axillary. Still waiting for the receptor information, but they want to get me in for a PET and start chemo right away, because it is an aggressive one.

I've always pictured chemo as infusions, but I've been reading more about patients taking it orally, at home. This seems much more convenient. I don't know if that's even an option for me at this point, but had anybody tried this?

Attaching my results, in case anyone else has had a similar one and it and to provide any thoughts at all.



Your Value

A. Breast, right, 12 o'clock, 3 cm from nipple, ultrasound guided core biopsy (coil-shaped marker)

- benign breast tissue with prominent stromal fibrosis

- no evidence of malignancy.

B. Breast, LEFT, 7 o'clock, 4 cm from nipple, ultrasound guided core biopsy (barrel-shaped marker)

- invasive ductal carcinoma, grade 3

- tumor is associated with a very prominent lymphoid reaction

- see Diagnostic Summary below.

C. Lymph node, LEFT axilla, ultrasound guided core biopsy (butterfly-shaped marker)

- lymph node containing metastatic poorly differentiated ductal carcinoma of breast

- metastatic tumor measures at least 6 mm in size

- no extranodal extension identified.


Specimen: Breast

Procedure: Ultrasound guided core biopsy

Specimen Laterality: LEFT

Tumor Site (invasive carcinoma): 7 o'clock, 4 cm from nipple

Tumor Size (greatest glass slide measurement, may underestimate size, not to be used for clinical staging): at least 7 mm (at least 0.7 cm)

Histologic Type of Invasive Carcinoma: Ductal

Histologic Grade (Nottingham Histologic Score): 3 (out of 3)

Glandular (Acinar)/Tubular Differentiation Score: 3

Nuclear Pleomorphism Score: 3

Mitotic Count Score: 2

Overall Score: 8

Ductal Carcinoma In Situ (DCIS): Not identified

Ancillary Studies: Pending on specimens B and C, with results to follow in addendum

Formalin Fixation Time Between 6 and 72 Hours (current specimen): Yes

Cold ischemic time less than 1 hour (current specimen): Yes


Your Value

After review of the H&E stained slide(s) immunostains were done on block B1 to further characterize the malignant process. The tumor is positive for AE1/AE3 and GATA3. CD45 stains the very abundant inflammatory cell background and is negative in the tumor. Pan-melanoma is negative. The stains confirm the diagnosis of carcinoma, and the GATA3 positivity is compatible with a breast primary


  • juju-mar
    juju-mar Member Posts: 200


    Sorry for the news...but the good news is it can be treated! I had a similar diagnosis in Aug 2020. Completed lumpectomy, chemo, mastectomy and radiation all by July 2021. I am now taking anastrazole and Verzenio. Your treatment going forward will depend on your hormone status and HER2 status. Ask for your oncotype score and genetic testing to see if you have the BRCA gene. There's lots of good info here. Find a good oncologist and breast surgeon. Get a second opinion if that would make you feel better.

    Best wishes to you.


  • Optimistic_Missouri

    Thank you for the information. It looks like you had lymph node involvement too. That's the part that I find so scary.

    Anastrazole and Verzenio are the hormone therapy, correct? It may be a bit before I'm there. From I read my only option may be tamoxifen, which I read has a lot of side effects. This is all new to me though. I just turned 40 and went in for my first baseline mammogram. No symptoms or family history, so this has come as a bit of a shock. Was your surgery before or after chemo?

  • spookiesmom
    spookiesmom Member Posts: 8,178

    My first dx was similar to yours. Stage 3, grade 3. In the nodes, but nowhere else, then. I had 4 rounds of red devil, 1 round of taxotere. Was supposed to be 4, but I’m allergic to it. Also did bmx then

    Iv chemo is usually given first. It’s not a picnic, it is doable.

    I was NED for 7 years then it showed up in the nodes on other side. Surgery. That kicked me into stage 4. I’m currently on ibrance and letrozole. Pills. What you are referring to I think? I doubt you can escape iv chemo with your dx.

    If I have progression on these, it’s back to iv for me.

    Do have a port put in, so much easier on your veins. I still have mine, 9 years later.

    Once you get a plan in place, it does get better Your MO is who will handle your meds and treatment. Keep us posted.

  • Optimistic_Missouri

    So sorry to hear that yours came back.

    I've basically done nothing but watch YouTube videos about breast cancer for the last month and I saw some about oral chemotherapy. I don't know which drugs are even available that way, but you take them at home and don't have to worry about going in for transfusions. I don't leave my house other than going to the medical appointments (trying to stay away from germs as much as possible), so the idea of doing it at home seemed ideal. Probably not a common thing though.

    I figured I will get a port pretty soon. Not that I look forward to having it put in, but it beats them constantly trying to find a vein. Did I mention I hate needles? Lol

    I had actually met with the surgeon yesterday, as the pathology results were supposed to be in already. Bilateral mastectomy is in my future, but of course they want the chemo to slow down the progression first, which I understand. There are a lot of strong women on this site, so hopefully I can hang in there and get through this like they have.

  • juju-mar
    juju-mar Member Posts: 200

    yes, it was in the sentinel node and then one other had micro invasion. I had lumpectomy first, which showed the tumor to be larger than thought and she didn't get clear margins. IV chemo was started 3 weeks after lumpectomy. I switched teams and did 4 rounds of AC chemo, then 12 Taxol. It took 20 weeks. Second surgeon recommended mastectomy and lymphovenous bypass, which I did. Surgery showed cancer still present at the site, but none in any of the 12 lymph nodes removed. So she told me I had a partial response to chemo, which can happen with Estrogen + cancers. My oncotype was 20, so I was on the bubble for chemo benefit, but we wanted to throw everything at this. Radiation was 30 treatments. It's not easy, but it is doable. Once you have more info and a plan in place, you will feel more confident. The good news is more than 3 million people are living with or have finished cancer treatment and are ok. Treatments have come along way. I take anastrazole since I was post menopausal when diagnosed. Verzenio is advised if you meet some criteria : Large tumor, 1-4 + nodes, hormone +, and a Ki67 greater than 20%. I didn't start Verzenio until 3 months after finishing radiation, when the FDA approved it for early to advanced staged BC.

    Good luck going will get through this!


    I did write a blog if you want to read my experience.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    Sorry you've found yourself here! I'm just popping in to say that there isn't a lot of choice when it comes to chemo. There are specific standards of care and treatment for different types and stages of cancer. Once they have done all the testing to determine what yours is, they will tell you what the standard treatment is for it. You'll get a feel for the different treatment paths after awhile if you keep an eye on people's signatures. They all tend to fall into patterns.

    From what I've seen, oral chemos seem to be used primarily for Stage 4 cancer and some are also being used now as secondary chemos after you finish the initial treatment process, to try to kill off any remaining cancer cells. A particular chemo either comes as an infusion or as a pill and that's what we get. We can't pick one or the other. It sure would be nice to always have a pill option though!

  • msphil
    msphil Member Posts: 185

    hello sweetie I got diagnosed after I found my lump and while we planning our 2nd marriages. Diagnosed idc stage2 0/3 nodes got 2nd opinion had my cry then said to myself and others I can do this I Will get thru this. Had 3mo chemo before and after Lmast I mentioned lumpectomy but was recommend mastectomy. Now 27 yr Survivor this yr 28.My fiance now husband and my FAMULY friends helped me thru. Then 7 wks rads and 5 yrs on Tamoxifen. Hold on sweetie. msphil

  • Optimistic_Missouri

    Thank you for the reply. I'm so glad it worked out for you. I just got my receptor info today and I'm a triple negative. From what I've read that's not great, since I won't have the option of hormone treatment.

    I meet the MO Monday, get my PET Wednesday, then my port put in Thursday. Not a fun week, but I'll be excited to get some more answers. 🙂

    Oh, and although I don't have a concrete first opinion yet, I made a call today to a cancer treatment center that I've read good things about and will get a second opinion there.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    Definitely check out the forums and discussions about triple negative. They will have lots of information and advice for you. ❤️
  • Optimistic_Missouri

    I met with my MO today and have my PET scheduled. He seemed optimistic that the PET will be normal. He sent me for blood work after my visit.

    I have those results back and they show:


    Your Value

    131 U/L

    Standard Range

    35-104 U/L


    Your Value

    30 U/L

    Standard Range

    <=33 U/L


    Your Value

    67 U/L

    Standard Range

    <=33 U/L

    After googling ALT and alkaline phosphatase, I now question if I have metastasis to the liver/bones.

    Has anyone else experienced similar levels? As a side note, I'm not a heavy drinker, so I would be surprised to have unrelated liver damage. Thanks for the support.