Young, Confused, and Newly Diagnosed

WifeMomTeacher
WifeMomTeacher Member Posts: 42
edited April 2016 in ILC (Invasive Lobular Carcinoma)

I'm 29 years old, and on 4/22 my preliminary pathology came back to show Invasive Lobular Carcinoma. I was Beyond shocked to put it lightly; I still am. I am desperately awaiting the full pathology so that I can have it in time for my first appointment with WVU Cancer Center this Friday.

All I know right now is the pathology doesn't seem to match what Ive read about ILC. My tumor is huge and came out of nowhere. I have very small breasts and there was literally no mass there and then when there was, it was huge. I can easily feel it. There is nothing sneaky about it. It was more of an explosion. The ultrasound showed it to be 5.5 cm, but it has grown even more in just 4 weeks. I also keep reading that ILC is generally diagnosed in older women. I am 29!! Mine also hurts TERRIBLY. None of this matches.

I don't understand how this has happened so fast and while I'm so young. I have a 5 year-old daughter to be here for. She has a lifetime of what should be happy memories ahead, not ones of a sick Mom. I just don't understand.

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  • Gracejoy
    Gracejoy Member Posts: 48
    edited April 2016

    Dear WifeMomTeacher,

    I am very sorry about you getting ILC diagnosis at an early age. You say it hurts terribly. Just to let you know that mine (ILC) was also hurting badly on and off initially. I went to my doctor complaining about this pain that's how I was diagnosed. And then it was hurting constantly for two weeks just before the operation. This was because I was shocked with my cancer diagnosis and nervous about it. This just made it worse. I recommend you to keep you mind busy with other things you like or take something to calm your nerves while waiting for the operation. Cancer and stress don't go well together. I hope everything goes well with you.

    Best.

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  • WifeMomTeacher
    WifeMomTeacher Member Posts: 42
    edited April 2016

    I got 2 of the 3 receptors back today. It is Estrogen positive (strong) and Progesterone positive (strong). We're still waiting for the HER receptors (I am not sure if I am getting this all right, but I think it makes some sense. ) So for the moment I will try and appreciate the good news.

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  • WifeMomTeacher
    WifeMomTeacher Member Posts: 42
    edited April 2016

    Thank you. And I am so sorry to hear that. It is just aweful knowing there are so many of us. But it's certainly helpful to have somone to talk to. I appreciate it.

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  • MFalabella
    MFalabella Member Posts: 176
    edited April 2016

    I am 44 and my cancer presented itself the same way. Last month it wasn't there, then in the middle of March BAM! I was just diagnosed on the april 3rd, and am about where you are now....just waiting. I will be thinking about you.


    xoxo Michelle

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  • Dawn41
    Dawn41 Member Posts: 54
    edited April 2016

    I too am young 41 with three kids 22, 12 and 9 along with a 4 month old grandson and was just recently diagnosed with ILC. I had a lumpectomy last week and while surgery itself was successful some other areas have come up that has started this all over again. I am scheduled to see a plastic surgeon on Monday as I have decided to go with the double mastectomy .

    I wish you the best and while cancer is a scary we are scarier and can beat this. Keep us posted.


    Xoxo

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  • WifeMomTeacher
    WifeMomTeacher Member Posts: 42
    edited April 2016

    I received the full pathology from the original biopsy. It was ER+ PR+ and HER2-. So, for today I will try my very best to focus on the positive and Thank God the pathology was as good as it could be. Tomorrow I will meet with my Oncologist and Surgeon at WVUCancer Center and hopefully start beating this thing.

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  • Dawn41
    Dawn41 Member Posts: 54
    edited April 2016

    I have said over and over again since March 15th that I will take any good news I can get, we are stronger than the cancer. Keep us posted.... Xoxoxo

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited April 2016

    WifeMomTeacher

    Your pathology of Hormone Receptor positive (HR+) and HER2- is fairly consistent with ILC.
    I just noticed your age and I'd expect the Oncologist to recommend genetic testing. Is there any family history of BC?
    Insurance may or may not cover the test. If insurance gives you a hard time, simply do the 'Color Genomics' test which looks for BRCA gene mutations, but also ~18 other genes that are known to be associated with BC, including the CDH1 gene. CDH1 gene mutations are associated with ILC (as well as Gastric [Stomach] cancers, but that is a different topic).
    Anyway, I wrote a thread about the Color Genomics gene test called: "Color Genomics | Genetic Test | 19 genes | $249". Two years ago, my wife spent a couple thousand dollars (out of pocket) because insurance didn't cover the entire cost. At that time, Color Genomics didn't exist yet, but if they did, it would've saved tons of money.

    Finally, if you decide on a second opinion, I can't emphasize enough the importance of connecting with the University of Pittsburgh in PA.
    If anyone else reading this was just diagnosed (and hasn't had surgery yet), they have a clinical trial designed specifically for you!

    Details of this Clinical Trial and why it's important for Lobular patients can be found here:
    "ILC Clinical Trials"

    Best of luck to everyone!

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  • srpj68
    srpj68 Member Posts: 7
    edited April 2016

    Hi there

    I'm so sorry you've been diagnosed with this. Please don't panic about the size of the tumour and the sudden growth. This also happened to me, the 2cm tumour that was biopsied via ultrasound suddenly grew within 2 weeks and was measured after that at 4.7cm. I was assured that this was due to bruising from the biopsy - it makes the tumour bleed and appear and feel much larger than it is (and it was really painful). Lobular tumours can bleed and also have cysts mixed in with them, making them appear to grow suddenly. My ILC was triple positive, which is unusual. I finished chemo and surgery 18 months ago and finished Herceptin 6 months ago. Happy to say I'm very well now and I think it will stay that way. You will get through it and you too will be fit and well. Best wishes

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