Why does everything take so long??

Katty1895
Katty1895 Member Posts: 3
edited November 2017 in Caring for Someone with Breast cancer

My mom was diagnosed with Invasive Pleomorphic Lobular Carcinoma last Friday. She was told later in the day and it was then too late to get in touch with the surgeon. I spent my weekend researching and being scared. This type (for those that don't know) is more aggressive. I have been on her to follow up today on getting in with the surgeon. Finally she called after lunch as she had not heard from them. They didn't even have her paperwork yet and said to call her other doctor and have it faxed. They said they would then call her by Thursday of this week to set up her appointment with them. So, who knows when she will actually get in! Is this normal?? I know that typically a couple of weeks or so is not a big delay, but with this specific type I can't help but worry.

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  • Icietla
    Icietla Member Posts: 1,265
    edited November 2017

    Welcome to BCO. We are so sorry about your mom's diagnosis, but we are glad you found us, and glad for her that she has you helping her along.

    The waits seem always to take so long, and they are always anxious times. When your mom has a treatment plan, both of you will feel less anxious, and things will probably move along readily. Remember, for now, you are doing all you can (practically) do to get her treatment started.

    In the ILC forum section, you will find many discussion threads from which you can learn a great deal about ILC, including characteristics that she may want to take into account in her deciding on surgery. ILC has more tendency than IDC to bilateral occurrence. In addition, it has been known to be capable of evading detection by mammography, sometimes by ultrasound too, sometimes even by MRI too. Take the time to read through at least some of the longer discussion threads, such as these __

    https://community.breastcancer.org/forum/71/topics/747515?page=1

    https://community.breastcancer.org/forum/71/topics/835060?page=1

    https://community.breastcancer.org/forum/71/topics/800630?page=1

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    Sep 1, 2017 10:20AM - edited Sep 1, 2017 10:31AM by Icietla

    Another ILC-er here. By my calculations, the little-to-no-statistical-difference-in-outcomes so often used to argue against our mastectomy and CPM choices is roughly 93% weighted by IDC and DCIS cases. Somebody tell me if I am wrong about that, huh?

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    "Bilateral involvement is reported to be 20–29% in lobular carcinoma [10, 12, 16, 41, 42]. In our dataset the incidence of contralateral breast cancer in women with ILC was nearly double that in women with IDC."

    Source: https://breast-cancer-research.biomedcentral.com/articles/10.1186/bcr767

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    More to consider__

    https://community.breastcancer.org/forum/113/topics/820712?page=1

    https://community.breastcancer.org/forum/113/topics/805330?page=1

    https://community.breastcancer.org/forum/113/topics/844617?page=1

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  • Katty1895
    Katty1895 Member Posts: 3
    edited November 2017

    Thank you! I will check these out.

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  • JennyDaughterofaFighter
    JennyDaughterofaFighter Member Posts: 3
    edited November 2017

    I am having the same feelings as you. I have no idea why everything takes so long but time seems to be standing still. My mother got diagnosed with Invasive Lobular Carcinmona last week and it is going to take atleast another week to know the stage, if its spread, any treatment options. I am feeling every emotion from hopelessness to anger to depression to everything in the world. I wish I could help you. I wish we could get our answers today. Sending prayers and love to you and your family. Prayers that this holding pattern we are in ends soon and we can put a plan in place and start fighting. We are going to beat this.

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  • Katty1895
    Katty1895 Member Posts: 3
    edited November 2017

    Hi Jenny,

    I'm so sorry to hear about your mom. I understand your feelings completely and felt (am feeling) all of those things. The day after I posted my original message the doctor's office called and set my mom's initial appointment for the following day. That scared me too- as I was wondering why it went from "we will call by Thursday to set an appointment" to "come in tomorrow!" I wondered what they had seen in her pathology report to have her come in so quickly (after saying it would not happen so fast). I live a couple of hours away from my mom but I drove in that next morning and met her and my dad at their house- they didn't know I was going as I knew they would tell me not to drive in. But I could tell my mom was happy for me to be there. We got a lot of information at that appointment and I'm glad I was able to go. I hope your mom gets a lot of information too and that you are able to attend with her. I read your other posts and it sounded like she is going in tomorrow.

    Anyhow my mom ended up getting scheduled for a lumpectomy that very next Tuesday- so right at 1.5 weeks after her diagnosis. She will start radiation soon and also be on a pill for 5 years. While that first 1 to 2 weeks seemed to drag on FOREVER, looking back on it now- it happened SO FAST. I can't believe it has just been a little over 3 weeks since she was diagnosed, and she's already had her surgery. It all feels like a dream.

    That weekend after she was diagnosed when we didn't know anything, I spent a whole 24 hours basically on the couch and didn't want to move- other than to read about her type of cancer. I was so depressed. I have 3 small children and my husband was helpful in that he took on caring for them while I could not do much of anything - but I felt like no one was really caring for me. (My mom has always been that person...) I was so worried and I ended up getting shingles from the stress. I guess I don't handle emotional stress very well, because usually that happens when people are over 50, and I'm only 38.

    I went back to be there with my mom during her lumpectomy and spent the night with her. She slept a lot but was feeling good after the procedure. She is right at 1.5 weeks out from it and she is still feeling sore, but I guess that is to be expected. Now I've got to get over researching chances of recurrence...

    This is probably more information than you wanted- but I wanted you to know that I understand what you are going through, and here I am just a couple of weeks out after you- and things are looking so much better. It was really just in the last 3-4 days that some of my depression started getting a bit better. Please let me know how things go in the weeks to come. I have added you and your mom to my prayer list.

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