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Just diagnosed with IDC ER+ PR+ HER2+

I just was diagnosed with Invasive Ductal Carcinoma ER+ PR+ HER2+ on Dec 23rd, 2023 but still do not have an oncologist. I do not know what is normal for being diagnosed with cancer as I have never had cancer in my life before. I do not know the Stage or Grade of the tumour yet. I am in Canada. When looking up anything about Invasive Ductal Carcinoma where I can talk to people this was the first place I found. I am aware that this is American-based even though PA is the same timezone as I am in.

In my situation being diagnosed right before Christmas is that I have the delay of the doctor offices being closed. The doctor who diagnosed me, his office does not open again until January 8th. And then that doctor has to write up the requisite for me to get the CT Scan and the blood labs and the results to come back before I can even go to the Cancer Health Center here. So that is why I have to wait until Jan 24th for my appointment which makes it a full month since my diagnosis when they already had said it has started spreading and has spread to 2 lymph nodes.

I find this frustrating not knowing if it is okay to take this long. I don't know how to be my own advocate when I don't know what is normal. Does not help that the local hospitals fell victim to a ransomware hack and that has affected the ability for fast communication through the computer systems in the medical establishments here. 😥

Comments

  • maggie15
    maggie15 Member Posts: 766

    Hi @cdnangel , I'm sorry that you have to join us here but this is a good site for information and support. No cancer is good but triple positive has more treatments than any other type. Exactly what happens depends on the further testing. It's hard to wait but unfortunately that often happens. I live in the US but have resided in both Ontario and Quebec where you have to go with the prevailing medical timetable. Breast cancer grows slowly and is not a medical emergency so many of us have waited and worried; in my case it was six weeks.

    You will most likely receive chemotherapy and Herceptin. Other possibilities are surgery, radiation and hormone therapy. Before your appointment you might want to read about these treatments. Once you know exactly what you are dealing with and have a treatment plan in place things get better. Hang in there!

    https://www.breastcancer.org/treatment/targeted-therapy/herceptin

  • maggiehopley
    maggiehopley Member Posts: 97

    I, too, am triple positive. Because Her2 can be aggressive, chemotherapy with targeted treatment (monoclonal antibody therapy) is usually given prior to surgery. My MO explained that based on the size of the tumors (I had two) and whether or not there was lymph node involvement, I would either have TCHP: Taxotere, Carboplatin, Herceptin, and Perjeta or THP: Taxol (paclitaxel), Herceptin, and Perjeta. I ended up doing THP, which is considered to be the easier of the two, because mine was Grade 1, Stage 1B/2A. If you are at a higher stage you might also do AC: Adriamycin and Cytoxan prior to THP. Then surgery and radiation if necessary, followed by continuing the Herceptin for a year (very few side effects with this) or moving to T-DM1 (Kadcyla) which is Herceptin and Emtansine for 10 months. I did T-DM1 and it is much easier than regular chemo. Now I take an aromatase inhibitor daily for the ER+ part, as I am post-menopausal.

    I started treatment 6 weeks after diagnosis; many people wait longer for treatment and are completely fine. I am in the US so it might be a little different in Canada. The treatment for triple positive is very well researched and is usually very successful. I am doing great!

  • doodler
    doodler Member Posts: 34

    Hi @cdnangel - my situation is very similar to yours. I'm in eastern Ontario. Just had a biopsy Dec. 15. Results show IDC, which was in the lymph node that was also biopsied. The breast mass is grade 3, the lymph node grade 2, but I don't know the hormone receptor information or anything else beyond that. I meet with a surgeon Jan. 2.

    I don't really have any advice to give you, just some empathy for what we have in common. It's a confusing time. You're not alone, though. Sometimes I'm scared, sometimes I'm worried, sometimes I can't think about it at all.

    I'm not sure what comes next, aside from more tests, but at least that means more answers, and a treatment plan.

  • cdnangel
    cdnangel Member Posts: 3

    I thought I would have to wait until Jan 8th but it seems lack of communication accuracy is common here and I got my labs for blood work yesterday and am going today. Then once they are back I can have the CT Scan. I already had the Ultrasound (first) and Mammogram (2nd same day) and then followed up with the biopsy which the results I had asked for the pathology report. It is the only reason I know about the hormone receptor information as the doctor only told me that I had breast cancer and that it was in early stages but that the oncologist (once I have one) will tell me more. I have learned to always ask for a copy of the report. That way you can look over it and be on top of your care. I will pray for you (not everyone believes in prayer but I have seen it work back in 2009 in a situation that prevented my fiance from getting into an accident so I believe now) so I will pray for you "the woman in Eastern Ontario with breast cancer" as God will know you. I also offer you an outstretched virtual hug.

    Oh that ended up larger than I wanted. Oops!

  • cdnangel
    cdnangel Member Posts: 3
    edited January 2

    @maggiehopley, From what I have researched you are correct. But I only knew I would most likely need surgery to remove the tumours and then Chemo but I had no idea what kind. I know it has moved to at least 2 Lymph Nodes and that I have a little fat necrosis. I am getting my blood labs done today and then a CT Scan will be scheduled once those results are back. I just started menopause perhaps 6 months or a year ago now. Hard to tell exactly as I have an IUD so could not go by periods but instead by what my Gyn said. I was put on the IUD not to prevent pregnancy but to regulate hormones as my hormones were out of wack. In a way it does not surprise me that I am triple reactive considering that my hormones were already all over the place.

    Thank you for the info you have given as that helps me understand what to expect even more. Thank you so much! 🤗

  • doodler
    doodler Member Posts: 34

    Thank you for the prayers. This was a day when the positivity is well needed. We need it to make the world go round.

    It's interesting that you have had the IUD for hormone-imbalance reasons. I had a very heavy flow that was controlled for a while with progesterone contraceptive pills. Too much estrogen in my cycle, I think. Makes me curious about possible connections, but I'm no researcher. I'm also post-menopause now.