← Return to Lobular Breast Cancer: Let's share and support each other

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@kware75

Hi, I am 47, I have been getting mammograms and ultrasounds since my 30s due to dense breast tissue. I had ultrasound guided biopsies in 2019 on both breasts, all results benign. 3 hydramarkers in right, 1 in left. Was on 6 month plan for mri and mammogram for a year. Then moved me back to one a year mammos. Fast forward to July 2022, noticed a different feeling than my normal cysts in left breast and noticed slight dimpling near nipple only when my arm was raised above my head. Was referred for ultra and mammo because my year wasn't up yet. Thankfully they got me in quickly and referring doctor also put in a referral for breast surgeon 🙏. Ultra snd mammo results: radiologist said they didn't see any changes. I kept appt with breast surgeon who said he also didnt see anything of concern but ordered mri due to dimpling. Mri showed suspicious. Did Stereotactic biopsies, Diagnosed with ILC August 22, 2022. Sneaky cancer...hard to detect...curable...treatable, slow growing, best kind of breast cancer you can get, no signs that it's in the lymph nodes..all those things I held on to. They determined it was 5.9 cm before surgery. 5.9?! Cm!! That's huge! What??? I had bi lateral mastectomy with beginning reconstruction (expanders) on October 13th. My pathology report was a shock to me. Cancer was 55mm, smaller than what they determined; great news! Then I kept reading ..carcinoma present at margins, sentinel node micrometatasis. My heart sunk and fear, anger, confusion overcame me. Final diagnosis: ILC stage 1b, low grade, micrometatasis. Oncology recommends 5 months chemo, followed by, 33 radiation treatments, endocrine therapy, and removal of ovaries. I am so overwhelmed today. I don't know what to do. I want the cancer killed, and also want quality of life...surprise. If anyone can share their journey, the choices they made for treatment, what they have gained or lost because of treatments, and how they affect/affected survivorship, I would be so grateful. ❤️ also, forgot to mention, estrogen receptor positive, but not her2.

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Replies to "Hi, I am 47, I have been getting mammograms and ultrasounds since my 30s due to..."

I’m so sorry to hear of your diagnosis but please know that you’re going to be okay. It’s just such a shock for us to hear and the information and decision making can be absolutely overwhelming.

I was 60 when I was diagnosed with lobular breast cancer almost 4 years ago. Hard to believe!

Because I was triple positive, I had chemo, lumpectomy, radiation and now on an estrogen suppressing drug called Arimidex.

Needless to say, a harrowing journey but I came through it and am doing very well. You will too.

Just try to take it one week at a time and try not to look too far ahead. Break your treatment down in steps and focus just on the task at hand.

Surround yourself with positivity and always ask for help when you need it. 🙏♥️🙏

I hope you get at least one more opinion. And maybe a few more. Also ask about any genetic or genomic tests that might be applicable. If there was cancer detected at the margins, was follow-up surgery recommended or are the doctor(s) recommending the longer chemo and seemingly extensive radiation to clean that up? [If the latter, I'd want to know of I could have further surgery and avoid some of the prolonged radiation.]

I would have a lot of similar questions and you might get very different treatment options, or at least understand exactly why what is being recommended makes the best sense, with a fresh outside opinion. For example, you might be easily eligible for newer site-precise shorter radiation protocol but not if the facility you deal with doesn't yet have the technology and training. There are a lot of 'new tools' for dealing with breast that aren't readily available everywhere. [Both Cleveland and Mayo Clinics offer 5-session radiation, completed with 10 days, for eligible breast cancers, usually caught as early stage cancers. Facilities that don't have that new technology cannot offer it even when it might be the best treatment protocol.]

The good(bad) news is that a problem was found that can be dealt with in the immediate future. The goal is to learn your options and understand them so you can be empowered to make the treatment decisions that feel right to you and move forward with confidence about them.

@kware75 First and foremost.......big hugs! So sorry you're going through this. The first year for me was scary and stressful but on a positive note - they are so much better at breast cancer diagnosis and treatment now. Do as much research as you can and also get a second or even third opinion if you can. The metastasis is the greatest concern. If they can remove the cancer with lumpectomy that is an option but mastectomy might be a good choice as well...to completely remove the tissue in case there is more cancer starting. The choice about chemo and radiation is a difficult one. I was lucky that it wasn't recommended for me (no metastasis) and also I chose mastectomy to avoid those treatments BUT...my husband's cancer responded very well to just a handful of chemo treatments and radiation. It was a rough couple of years for him but he has no evidence of disease now and they don't even know the type of cancer he has and was considered terminal at diagnosis and that was 7 years ago. Get as much information and as many opinions as you need to feel you're making the right choice and know that you can quit any treatment at any time and there are statistics you can work with to determine possible outcomes. Since you are pretty young they are concerned about your estrogen levels and hence the ovary removal BUT....make them do blood tests to see how much estrogen you really have as well. When I requested that I found that I had NO estrogen (I had 95% estrogen positive breast cancer). I was able to skip the endocrine therapy as well. I was however about 6 years older than you at diagnosis and post menopause but the hormones were non existent at diagnosis...the damage was already done I guess. I do hope this helps because I know how frightened and overwhelmed you are feeling. I am sending the most positive thoughts I can to you today.

I am 46 and we are going through a similar time