ILC just found out...now what???

Jknee54
Jknee54 Member Posts: 10
edited February 2015 in ILC (Invasive Lobular Carcinoma)

Hi, everyone! I'm newly diagnosed & feeling very overwhelmed. Here's my timeline:

December 10th introductory mammogram within 3 hours of my appointment informing me that the doctor saw something on my mammogram

December 18th more intensive mammogram and ultrasound as well 2-3 cm irregular mass revealed

December 19th ultrasound-guided core needle biopsy

December 23rd pathology reports indicated that the mass was Atypical Lobular Hyperplasia

January 13th excisional biopsy

January 19th pathology results indicated that there was 3 mm of invasive breast cancer

February 2nd (4 long days from now) I will follow up with surgical oncologist & we will be discussing another surgery, genetic testing and whatever else needs to be done to make sure no cancer spread to my lymph nodes.

I guess I'm just wondering if there is anyone else out there like me and what your treatment has been. I'm just not sure what to expect. I've researched all the percentages & treatments possibilities, but I guess I just need to hear from real people, like me, and about your experiences. Any help, input is very much appreciated.


About me: 40 yo married mother of 2 (7 & 10 yo), daughter of a IDC BC survivor, FT 2nd grade teacher & Thirty-One Gifts Director

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  • kar123
    kar123 Member Posts: 273
    edited January 2015

    Hi Jknee54,

    Sorry we have to meet like this, but you have come to the right site. The ladies here are wonderful! I was 40 years old at my diagnosis in 2010. I had a 9 yr old daughter and a 5 yr old son. I was scared out of my mind. Never thought I would see beyond that year. Luckily, you get over the shock and into survival mode. Treatment plans are put in place and you get to the work of getting better. Not sure what your treatment will be. I had a fairly large tumor, so I had chemo, surgery (double mastectomy), and radiation. While not fun and seemingly never ending, it was all doable. I am now on anti hormonals because my cancer was hormone driven. Depending on what you find out, treatments can range from just anithormonals, lumpectomy, mastectomy, chemo, radiation and any combination of those things. It is very tailored these days. Also very treatable. So while it's easy for me to say now, try to breathe and listen to your team. Keep in touch!

    Kelli

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited January 2015

    HI Jknee54, another ILC survivor here. Diagnosed 1 year ago, you have come to the right place if you have any questions. You are probably a bit in limbo at the moment waiting for surgery and pathology which will tell you a lot more. My tumour was 3.5cm so I had a lumpectomy followed by radiotherapy. Because I had no nodal involvement I didn't need Chemo, but I live in New Zealand and we do things a bit differently over here. Pretty sure if I lived in the states I would have had Chemo. We don't do that Onco testing which will also tell you a lot more. Be prepared for a roller coaster year (and that's putting it mildly). However you will come out the other side, you will get through. There are some amazing people on this site who are only too happy to answer any questions. We all know exactly what you are going through. Best wishes, Donna.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2015

    Hi

    we know this is crazy making and all the waiting for appointments can really cause stress--here are some of my suggestions:

    Make a list of your questions for doc

    bring a digital voice recorder so you can record and have the info to review later (or have someone come who is really good at taking notes)

    Ask about the oncotype test

    Ask your pcp for ativan if you find the anxiety too overwhelming or ambient if you cannot sleep

    With an excisional biopsy, they sometimes can get the whole thing out there-- so you will want to know what other tests they are planning--more mammos, MRI, anything else? 3 mm is pretty tiny---- but you do want to know what else they will plan to do.

    The biology of the cells will be the driver -ER/Pr-- are they positive or negative? HER2 positive or negative---hopefully you can get that info-that will help you make decisions….

    Get second opinions

    Get copies of every test/report that gets run and have your own set of files at home…. you can order the copies right after you have the test-- usually have to go to medical records--I still do this, years later and they just mail me the films/CD's or reports….

    Take deep breaths--- this too shall pass



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  • vlnrph
    vlnrph Member Posts: 1,632
    edited January 2015

    There is almost too much information to absorb in such a short time. The other gals above give good advice. It will become easier to cope with everything once you understand more & have a plan.

    Having family history from your mom and at the young age that you are, referral to a genetic counselor should be on the agenda. The so-called BRCA or "breast cancer gene" is not the whole story any more. Several other mutations have been identified which means a panel test will give more data. Interpretation of results can be a challenge so hopefully there will be well informed specialists on the team to advise you. If conveniently available, consider transferring your care to a university hospital or teaching facility in order to get the best, most up to date presentation of options. Let us know how it goes.

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  • Jknee54
    Jknee54 Member Posts: 10
    edited January 2015

    Thank you ladies! I appreciate your input. I did compile a list of questions to take along with me on Monday. Time seems to be moving so slowly. I just want to put a plan in motion.

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  • Jknee54
    Jknee54 Member Posts: 10
    edited February 2015

    Well, I just got the best news given that I had cancer. The diagnosis is actually IDC and it's Stage 1: size 3mm, grade 1, ER+/PR+ The excisional biopsy removed the cancer with clear margins, so no further breast surgery needed. YAY! I do need to have a sentinel node biopsy on the 17th, but the surgeon anticipates that they will be all clear. I will also have to have 5 weeks of radiation and, just for good measure, I will be sent for genetic testing, but again she doesn't anticipate any issues with that either. So for now I feel relieved with this news and the plan. Thank you ladies for your support. Hope you all are having a good day!

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  • smo23915
    smo23915 Member Posts: 165
    edited February 2015

    Jknee just curious if you will be taking Tamoxifen. We have almost the same diagnosis mine was 2mm and ILC. I had a BLM and was told taking Tam was up to me. Just wondering if you were told to take it.

    Sharon

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  • Jknee54
    Jknee54 Member Posts: 10
    edited February 2015

    Personally I will not be taking Tamoxifen. My mom took it and had several awful side effects I am not willing to subject myself to. Honestly, since posting earlier I had a little bit of a panic attack about subjecting myself to radiation. I'm more of a alternative "medicine" person using diet, natural supplements and essential oils to help me stay well. But I am going to go ahead with the radiation. Then I am going to look into other options for long term hormone therapy. I am already using some other things that have helped me with other issues and I believe can help me in that department.

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  • smo23915
    smo23915 Member Posts: 165
    edited February 2015

    Thanks for the input Jknee. I did not want to do radiation that is why I had the Mastectomy. I have been on Tam for 2 years now, do have some side effects. But my Onc told me I could stop.

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