ILC in Your Thirties?

katiefar
katiefar Member Posts: 2
edited October 2020 in ILC (Invasive Lobular Carcinoma)

Well, this is my first post on any message board, ever! I was just diagnosed a few days ago, right before my thirty-seventh birthday. I'm wondering if there are other women in their thirties with ILC? I haven't found any yet, but if you are and are willing to tell your story, perhaps you'll post here?

I found a lump as long as a year ago, but figured it was fibrocystic tissue. I went in for an exam in November, and my NP said she was nearly certain it was a fibroadenoma, that she wasn't worried, but because my mother had breast cancer at 41, that I should check. I put it off for months-- the holidays, travel for work, then Covid. But it was getting larger, changing the shape of my breast, so I went in at the end of July for a diagnostic mammagram and ultrasound, then a biopsy, and they confirmed that it's cancer. I'm still in the information-gathering stage; I just got an MRI confirming most of the original pathology report, and I'm waiting for my oncotype and genetic testing.


I'm concerned about the higher long-term recurrence rate for ILC, especially since I'm something like thirty years younger than the average woman with this diagnosis. Has anyone's doctors talked about this with them? Anyone working with someone specializing in ILC in younger women? Any young woman with this diagnosis want to share anything they learned along the way that might be helpful?

Thank you so much!


· Share on FacebookShare on Twitter

Comments

  • BlueKoala
    BlueKoala Member Posts: 190
    edited August 2020

    I was diagnosed with ILC 4 ½ years ago when I was 35.

    · Share on FacebookShare on Twitter
  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2020

    Sorry, I know you asked for 30s and I was not, but I was premenopausal. Because of your age they will probably recommend ovarian suppression/removal and an aromatase inhibitor rather than tamoxifen. If tamoxifen is recommended be sure to investigate the questions surrounding its effectiveness for ILC. Also, I hope they test you for more than just BRCA. Some experts have suggested that the Lynch genes MSH6 and PMS2 may be connected to breast cancer and ILC in particular, as well as the usual Lynch cancers. (I have an MSH6 mutation and so does a relative who had ILC.)

    A resource: The Lobular Breast Cancer Alliance lobularbreastcancer.org.

    · Share on FacebookShare on Twitter
  • wallycat
    wallycat Member Posts: 3,227
    edited August 2020

    My gyn in WI was dx when she was 32 and had 2 babies to raise. Back then, I don't believe they checked on the type of cancer, just went on to treat her. She's well into her 60s (officially retired) now and travels to render free gyn service in countries of need.

    · Share on FacebookShare on Twitter
  • dizzywombat
    dizzywombat Member Posts: 16
    edited August 2020

    Sorry you find yourself here. I was diagnosed with ILC last year at age 37. I'm happy to share my experience...feel free to PM me with any questions!

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited August 2020

    I was diagnosed at age 38 in 2007. They said Stage 2 at the time, but it now appears i was Stage IV de novo with bone mets. That info didn't get sorted around until recently, when I got a new onc (my fifth one over the years) who actually has a clue about ILC.

    I was diagnosed with brain mets in 2018. Just had a new brain lesion pop up, wedged between my ocular nerve and eye muscle. I am also having some major gut issues, and met with GI today who suspect the cancer has moved into my bowels. Am going through workup on that.

    There is a lot more attention paid to ILC now than there was a decade ago, in large part thanks to the advocacy of the LBCA. I would encourage you to seek out an onc who has at least a basic understanding of how and where ILC spreads and the best ways to image it, both for local recurrence and mets.

    · Share on FacebookShare on Twitter
  • jennaru123
    jennaru123 Member Posts: 5
    edited August 2020

    I was diagnosed earlier this year with ILC at 41 years old, while 38 weeks pregnant with my second child. Not in my 30s but not far off. My deepest sympathies for being in this club. Its not where we should be at our ages.

    My surgeon told me that in the past the medical community believed that ILC had a slightly higher risk of being bilateral (occurring in the other breast) but recent studies have shown that is not the case. I haven't looked for any studies to back that up but very much trust my surgeon.

    Other than that my risk of recurrence has been discussed with me by two separate oncologists: mine and a retired founder of the regional cancer center, a pioneer in breast cancer research, who does oncology counselling in his retirement. Both have broken down my risk of recurrence as it relates to its PR/ER/HER2 markers, its stage and its grade. Neither of said anything about ILC making it more or less likely to recur. One doctor did note that LC is a 'tricky little bugger' as it grows in sheets, so there tend to be no physical symptoms in those crucial early stages. Happy to DM you if you'd like to hear about my oncology counselling discussion on long term recurrence risk of my ILC.


    · Share on FacebookShare on Twitter
  • Debbiemarler
    Debbiemarler Member Posts: 10
    edited August 2020

    Going for my 3rd MRI this month. This one will be orbital. New mass on my cranial nerve 6, not anything new on the lytic frontal lobe lesion. Saw. a opthamologist yesterday. He had 2 names he gave me if the mass on the crainial nerve is cancer. He said get that one out soon due to vision risks. The lab results she ordered for multiple myyeloma was negative for 'm' but high for circulating myeloma. I am so xonfused. I cant work now cause last week on the drive home I thought Butterflies were talking to me, not scary, but i was arguing with them that i couldnt watch them and the road. I mentioned to my husba d over dinnee. I did go to work Wedneaday. I called indue to up with diarrhea all night. !y husband saidn, no , remembebr you had another bad headlache. I dont remember. Thursday back at work ,Im an RN, I had long patches missing of my day,kept feeling like I was in a 70s tv. show and went to leave and my car was moved. I said who mocved my car, coworkers all said I did. I told them I didnt take a lunch...it got worse....i f eel sane at the moment may husbamd took me for the 2nd MRI Friday. I got my test result but my MO was on vacation.Now I need to find a neuro surgeon who specializes in oncology.

    · Share on FacebookShare on Twitter
  • Krista21
    Krista21 Member Posts: 16
    edited September 2020

    I was diagnosed when I was 31 ILC had lumpectomy and radiation no chemo, feel free to pm me if you want🙂

    · Share on FacebookShare on Twitter
  • esjay20
    esjay20 Member Posts: 1
    edited September 2020

    I was just diagnosed with ILC on Thursday this week. Going through the motions of understanding what it all means and the reality of what is ahead of me. Now that I know it's there I just want to cut both my boobs off with a knife :) Anxious wait until I can see my doctor tomorrow, I feel very anxious about understanding more what stage they caught it in. I have a feeling it's all through me and we caught it late. I feel sick with worry. Anyone with advice?

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited September 2020

    Oh esjay20, we so understand where you are coming from! Waiting and not knowing is the most difficult part. Advice would be to try to keep yourself busy in the interim with things that you enjoy doing and provide distraction. Once you know what you're dealing with, and can make decisions, it will get easier.

    We're all here for you!


    · Share on FacebookShare on Twitter
  • OnTarget
    OnTarget Member Posts: 447
    edited September 2020

    esjay20- we all go through that same terrible anxiety. It is impossible to concentrate and you worry constantly. No one moves fast enough and they don't seem to care that we want it GONE NOW! Luckily the surgery date finally arrives (1-2 months later), and you can breathe a sigh of relief!

    Many if us feel like it is everywhere. My worry was that it wasn't everywhere yet, but that ever day if delay could be the day when the cancer cells venture out! Statistically it is not likely, but that doesn't make it less of a worry.

    I hope you get great news and don't feel shy to ask for some meds for anxiety.

    Katiefar- I was diagnosed with ILC at 42 (both boobs) last year. I'm doing great after BMX and chrmo. My friend was diagnosed Dec 2019 with metastatic ILC at age 40. After treatment, she is amazingly NED!

    I wish I had brilliant insights to share. I had an oncotype of 16, and I chose chemo because my Ki67 was 40 and my tumor was larger and because of my age. While chemo is "less effective" on lobular it isn't ineffective and mine was a bit faster growing which helps chemo work better. My largest tumor was a palatable mass which is not typical for lobular, so I figure you never know, and I'd rather be more aggressive.

    I am also doing an AI and Letrazole. Some of the SEs suck, but it makes me happy to know I'm doing my best.

    I wish you the best in your journey. The first months are the hardest, the rest was much easier for me. I'm a year and a half out and I feel great! I feel like I'm putting cancer behind me more every day.



    · Share on FacebookShare on Twitter
  • MikaMika
    MikaMika Member Posts: 342
    edited October 2020

    I was diagnosed in August 2019. I was 38 at that time. Had BMX, rads, now on Lupron+AI.

    My MO is a general oncologist, not with ILC specialization. I don't think there are many oncologists who has this specialization. I heard about Dr. Otto Metzger. He is a medical oncologist and ILC resercher. You can try to ask his second opinion about the suggested treatment.


    · Share on FacebookShare on Twitter

Categories