Diagnosed with IDC but no report yet on type

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CarolAnnieLumpLump
CarolAnnieLumpLump Member Posts: 89
edited June 2018 in Waiting for Test Results

Yesterday my husband, daughter and I met with the surgeon that did my needle biopsy. She is sending me to an oncologist for treatment and expects he will want to do surgery right away. The options were lumpectomy or mastectomy. Without having the "hormone receptor" status I am having a hard time thinking about what I want to do. She said the report said invasive ductal carcinoma Grade 2. That is all I know. It's my right breast at 12:00 position. I am 59. Had a complete hysterectomy 5 years ago. Did not take hormones. The events of the past few weeks have my head reeling. Holy cats.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2018

    The good news is you only have to make this one decision now. You'll know more about the tumor type before surgery, but that matters more for what <if anything> comes next.

    You'll see many women have posted that it's this in-between phase, when you're waiting for results/doing your research/making decisions that's the toughest. Once you have a dx and tx plan in place, it'll be easier.

    BCO is a great resource--you'll find loads of information and sympathetic ears for every stage you're going through. Let us know how it goes.

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  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Chikita55,

    Many factors go into that decision and you will know more from the surgeon. Some women don't want to go through the hassle of post op treatments, or have small breasts or have a tumor in a position that require reconstructive surgery anyway so they chose mastectomy. I am 54 and chose lumpectomy when all the tests came back. I finished my 6th of 16 radiation today. I am happy with my choice. Good luck with yours.

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  • moth
    moth Member Posts: 4,800
    edited June 2018

    Hi chikita. Sorry you find yourself here.

    FWIW, I think if lumpectomy is an option I'd do that. You can always go back and have another surgery later if absolutely needed. But studies show lumpectomy + radiation has same outcomes. I chose it as it was simpler, smaller surgery (day surgery) and fast recovery. A mastectomy is much more invasive and serious surgery with more possibility for complications.

    I also echo Ingerp, that once you know more about your tumor and the treatment options become clearer, you'll feel more in control and this will all seem more doable.

    best wishes

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  • CarolAnnieLumpLump
    CarolAnnieLumpLump Member Posts: 89
    edited June 2018

    Thank you for your responses, I agree this in between phase is so hard. It's exhausting thinking about all this and trying to learn as much as possible before making a huge decision. Patience is one thing cancer is going to teach me! Not one of my strong traits. haha

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  • CarolAnnieLumpLump
    CarolAnnieLumpLump Member Posts: 89
    edited June 2018

    Still waiting for the results. Today I called the surgeon's office again to see if they had come back yet. The Dr. said she would call the hospital to see what the hold up is as she expected them back by now. I did get my appointment with the oncologist for next Wednesday. Feeling pretty overwhelmed with all this. Surprised at how it makes me feel heavy and tired, sometimes weepy. On another note though, I am putting together a binder to keep all my papers, reports and calendar in. Glad I found this site. xo everyone.

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  • C_Elisabeth
    C_Elisabeth Member Posts: 4
    edited June 2018

    Oh, I'm so sorry you're in the thick of this. :( I was in your shoes seven months ago and will never forget the INTENSITY of that part of the process--and how much WAITING was involved! I was trying to absorb incredible amounts of information and sift through all the options of treatment. (I'm 42 w/IDC, Chek2+/HER2Neu+, Stage 2B)

    At one point, when it all felt most overwhelming, I decided to stop trying to figure out the entire process at once, and instead, tackle one phase of treatment at a time. I also had wonderful counsel from one doctor who reminded me that my doctors work for ME, not the other way around--and to not feel rushed into any treatment or decision before I was ready. So with each bit of new information, and with each treatment option, my husband and I have talked and prayed and pursued educated conversations with multiple doctors, confident that we are our own best advocates. I ended up on a clinical-trial neo-adjuvant chemo (January-April), then a bilateral mastectomy (just three weeks ago). Now we're trying to discern what's best as we continue maintenance chemo and approach hormone therapy. I'm praying for you, that you'll know just what to do--what's best for your particular body and diagnosis--as each phase of treatment unfolds. <3

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  • CarolAnnieLumpLump
    CarolAnnieLumpLump Member Posts: 89
    edited June 2018

    C_Elisabeth, thank you so much for your uplifting response. The surgeon said she would call me with the hormone status as soon as they came in but she never did. I called a couple times but finally gave up. Tomorrow we are meeting with the oncologist so am hoping he will have the hormone status and we can move forward. I am not happy with the surgeons lack of follow through. I wish she never would have said she would call. I feel like it just adds to the stress waiting for the call, wondering why they aren't calling, if its such bad news they want the oncologist to tell it in person. Your mind just runs all over the place. So I continue to pray as you said, give myself over to the Lord and find great comfort in that. I hope I will know just what to do. Right now I am thinking about having a mastectomy rather than a lumpectomy. I base this off of so many that have had to go back after lumpectomy to have a mastectomy. My grandma had a mastectomy in the 1940's and lived to be 99. I don't even think they did chemo back then! I know she didn't have it if they did.

    It sounds like you have made some very difficult decisions with the help of a great medical team and your husband. I am praying your treatment plan goes well and you are back to feeling like your old self soon. My friend at work had a bilateral in January. She showed me her chest at work yesterday, all I wanted to do was hug her. I was so touched that she trusted me enough to show me her surgery site. There is so much emotion that goes along with this breast cancer thing. She is doing great. It sounds like you are too.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    Absolutely, you want as much info as possible before making that decision. You may even want brca and gene testing especially if family history is present. I didn't have the oncodx results before having surgery since that takes longer and results won't effect the surgery choice anyway. I am always suprised by some of the medical decisions presented to us but get all the info that would effect your surgery choice.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    Also is your surgeon a breast cancer surgeon? That might be the difference they usually work closely with the oncologist. In my case, a tumor board met and discussed my situation and came out with a recommendation after reviewing all the data.

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  • CarolAnnieLumpLump
    CarolAnnieLumpLump Member Posts: 89
    edited June 2018

    Ugh, the surgeon that did the biopsy just called me. The hormone receptor information is still not available since the lab never did it!!!! The doctor called the lab today and they missed doing it. Consequently there is no reason to visit the oncologist today since we don't know crap. What a nightmare this is turning into! Time to find a new team. Sorry about the rant. We are just so disappointed right now.

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  • moth
    moth Member Posts: 4,800
    edited June 2018

    How annoying for you chikita!!!! Just to put your mind at ease a bit - breast cancer is urgent but it's not an emergency. A couple days delay is ok. I hope they've rebooked your MO appointment for later in the week. I think a pathology lab doing a rush should be able to get the hormone status to your doctors by the end of this week... If otoh, the lab is not experienced in doing them, maybe it's better to ask them to send it to more experienced pathologists. Staining for receptor testing is a bit of an art & there's interpretation involved.

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  • CarolAnnieLumpLump
    CarolAnnieLumpLump Member Posts: 89
    edited June 2018

    The test results are here!!! Yay!! ER/PR+ HER2- So now I can start learning about how that is treated etc. Thanks for all your encouraging words. This waiting is a bugger. Now my appt with the oncologist is next Wednesday, I can't wait to see him.

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