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Just diagnosed and started treatment for ILC (pleomorphic)

Hi.

I have recently joined this forum as I was dx with grade 2, Stage IlB ILC (including LCIS and DCIS) in my left breast.

I'm aged 49 years and apart from being a femaie, I don't bear the obvious risk factors for BC. So this has come as a shock to me!

My surgery was a week ago. The histopathology showed that the margins and lymph nodes were clear and the mass measured 23mm (not sure why I have been staged 2b as I readings suggest 2a)?

I opted for a wide excision, some lymph node removal, breast conserving surgery to my left breast and a reduction on the right breast.

In Australia, there is limited information about Invasive pleomorphic lobular carcinoma. As I have this type of BC, my treatment is suggested to be a course of radiation and hormone therapy - Tamoxifen for 10 years.

Chemotherapy was not recommended by the oncologist team so I won't be having it as part of my treatment.

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648

    I am sorry that you have been diagnosed. While I have no experience with your type of bc please know that the vast majority of us have no risk factors for developing bc. Those who have genetic mutations are a minority of those who are diagnosed, somewhere in the 15-20% range. Unfortunately bc is not a disease that can be held at bay with lifestyle choices either or obvious risk factors (what are those anyway?), though it’s certainly a good idea to develop good nutrition and exercise habits in general. What I’m trying to say is that for most of us, the diagnosis has been random and it’s likely that not much could have been done to change it. This initial post dx period is often the most difficult as you wait for treatment plans and any further assessments to fall into place. Take care

  • moderators
    moderators Posts: 7,685

    Welcome, Tammy9. We're so sorry you find yourself here, but we're glad you've joined this community and hope it can be a source of support for you! We hope your recovery from surgery has been smooth and uneventful, and we wish you the same on your upcoming treatments. We're here with you, every step of the way.

    The Mods

  • faithhopelove44
    faithhopelove44 Member Posts: 1

    Hi Tammy9,

    This is my first post to this site. I just joined and felt like you were writing my story. I’m 49 diagnosed with PILC as well. I had a lumpectomy a month ago snd was ready to start radiation, but found out this week the margins weren’t clear. I have to go for surgery #2. I feel like I was just diagnosed all over again. Some flood of emotions. I will receive radiation and hormone therapy. My medical oncologist is recommending using Lupron to stop my ovaries from producing estrogen and an aromatase inhibitor. She said this decreases recurrence rate by 30%. I go to Dana Farber in Boston. My biggest fear are all the side effects I’m reading about. I would love to hear from some women that say it’s tolerable.


    Best of luck to you!

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Hi Faith Hope! AI's are tolerable for many of us if not most. I've been on them nine months and notice very little but some stiffness which is probably related to menopause and not my medication.

  • moderators
    moderators Posts: 7,685

    Hi @faithhopelove44, and welcome to Breastcancer.org. We're so sorry to hear of your diagnosis, but we're so glad you've found us. As you can already see, our Community is full of helpful members always willing to offer information, advice, encouragement, and support — we're all here for you!

    You may find it helpful to read this thread in the hormonal therapy forum, where members share positive stories about their hormonal treatment experience.

    it's important to remember that not everyone experiences the same thing when taking hormonal therapy — some have lots of side effects, some have minimal side effects, some are able to alleviate their side effects using complementary therapy, switching to another type of hormonal medicine, or reducing dosage.

    We hope this helps. If there's anything else we can do to help, don't hesitate to reach out! Welcome again.

    —The Mods