Just diagnosed with invasive Lobular Cancer
Hi
i Just got diagnosed with ILC and feeling really shook. I’m a young, active 57yo in “great” health. I have two tumours in my left breast and multiple complex and funky looking cysts. Right now I’m in the waiting game to get in to see my oncologist and get surgery. I was wondering if anyone out there was in the same boat right now. I’d love to hear your story.
Thanks 💜
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@sgg44444, we're sorry you had to join us for this reason, but we're glad you found us—Welcome!
It’s completely normal to feel overwhelmed now, but you’ll find many others here who understand exactly what you’re going through. Hope you get responses from other members soon. In the meantime, you can also try our search tool to find members like you and contact them via private message. You can filter the search by diagnosis date, type of cancer, treatment, etc. Click here to learn how:
Also, check out this excellent thread for those newly diagnosed: Just Diagnosed? Start Here. You'll find helpful links there that can assist you in understanding all the new information that comes with a new diagnosis, such as interpreting your pathology report, exploring treatment options, and more.
Hope this helps! Please, come back to let us know how it goes with your oncologist and next appointments.
We're thinking of you!
The Mods
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Hi yes I'm in the same boat except i was diagnosed on 3/1/25 with stage 2 invasive lobular carcinoma. I've had all the tests except the pet scan which i'm having done 4/21/25. I'm struggling rapping my brain around the fact that I have breast cancer. I also have two tumors but in right breast and was told by surgical oncologist that i cant have a lumpectomy and that it has to be a mastectomy. I'm devasted and shook up about all of it right now. The pet scan will check to see if it has spread to other areas and they also now want to do an ultra sound on the left breast to see that now.
I'm in contant prayer over this and I live alone which makes this even harder. No family and no kids. I will pray for you in hopes you somehow come to grips with it all. just know im in the same boat. probably a worse boat because conventional treatments scare me even more then the diagnosis….
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Welcome, @mercedes65, we're so sorry for what brings you here but we are glad to have you as a part of our community! It can all be so overwhelming, particularly if you don't have a support system in person, but we are all here for you every step of the way.
The Mods
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I’m also in the same situation! I’m 52 and also healthy. Not overweight, no family history, no smoking or drinking.
I was Just diagnosed with ILBC. Mine is in both breasts. The left side seems to have a bigger tumor, a little bit under 5 cm (MRI).
Right side has smaller “changes” with cancerous cells. I also got progesterone and estrogen positive and HER2 negative. Doctors are recommending a double mastectomy annd also taking some sentinel lymph nodes for biopsy. Freaking out and trying to get a second opinion!!
Also, really worried that it might have spread to other parts of my body!!2 -
@vignjevic - We're sorry you had to join us for this, but wanted to send you a warm welcome to the BCO community.
It’s completely okay to seek a second opinion. If you’d like to explore your options, here’s an article that can help you navigate getting a second opinion: Getting a Second Opinion
Hope this helps. We're here for you!
The Mods
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Same situation here. I'm 53, healthy. Not overweight, not smoking or drinking and no family history. I always have had dense breasts with multiple benign cysts in the past. Never skipped the annual mammogram. I found a lump several months ago on my left breast and thought nothing of it because I've had many lumps before, and they all turned out to be nothing. The lump kept getting bigger and painful, so I decided to call the doctor. My diagnostic mammogram, ultrasound and biopsy were done on the same day, and the surgeon warned me that it looks like cancer right after the biopsy. A few days later, I got the confirmed diagnosis, Invasive Lobular Carcinoma. I'll never forget May 14, 2025. The day my life changed. Lymph node is positive for cancer. CT scan only shown cancer in the left breast and in a lymph node. Mine is ER+/PR+/HER-2 neg. Both doctors (oncologist and oncologist breast surgeon) have talked about chemo, surgery and radiation for my treatment. Still waiting for a breast MRI and a test called "mammaprint". Still trying to wrap my head around this life changing situation. I'm ok most of the time but it's still very scary.
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Six years ago, I was a younger mom, busy with little ones and living the healthy life when I was hit with a diagnosis that changed everything, ILC, left breast, 2 nodes positive. Now, here I am—six years later—back to being that same health-focused woman, stronger, wiser. To anyone walking on the same street, hang in there. Once the doctor suggests the plan and all is in order, you will feel better.
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@jennydo We are sorry to hear about your diagnosis. We understand that a breast cancer diagnosis is life changing and would like to welcome you to BCO, where we are here to support you. When you're ready, please consider joining our In Treatment Virtual Support Groups. This is a great place to find community and connect with others with similar experiences. Sending hugs your way.
The Mods
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Hi, I’m 53 and was diagnosed 4/9/25, ILC stage 1, grade 2 right breast (ER+\PR+\HER-2 neg) biopsy of 1.4cm tumor, MRI found second tumor 1.3cm that we elected not to biopsy but study pathology after my single mastectomy and sentinel node biopsy on 5/27/25. I was shocked at my diagnosis as I am an avid runner and don’t drink or smoke, not overweight. I can tell you the hardest part is waiting. Waiting for test results, waiting for surgery. I feel like my life is on hold. I felt significant relief on the day of surgery. It was good to know the tumors were removed and no longer spreading. I’m concerned about treatment plans, and estrogen depletion when I was actually on a HRT journey to wellness when this diagnosis stopped everything. I’m hoping my oncologist who I meet on 5/23 is integrative minded as I will do standard treatment but want to spare my body collateral damage. It’s hard being health conscious and having to do these treatments. I was out walking a mile the day after my mastectomy and I’ve increased my mileage to 3 today, all with a JP drain tucked in my sweatshirt pocket. Being alone is hard, I am praying, meditating, and trying to lean into the healing and recovery. It’s nice to talk with others in the same boat. You’re not alone.
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@nicoleh - Welcome to the community, we're so glad you found us! It's truly inspiring to hear how you're staying active during such a challenging time.
You might be interested in joining some of our discussion threads under the Working on your fitness
topic. It's a great space with helpful information and articles, where members share their routines, progress, and support each other.
Hope this helps, and let us know if there's anything we can do for you. We’re here to help!
The Mods
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Hei @lillyishere, it's really great to hear stories from people like you who have gone through treatment and are feeling good—actually, feeling great in your case! ❤️
Could you share what kind of treatment you had? How long did it last, and what kind of surgery you went through?
I also had two positive lymph nodes out of six, from both sides (cancer on both breasts). The recommended treatment is the traditional route: chemo, radiation, and hormone therapy (10 years). But I do wonder about the necessity and effectiveness of chemo in this case. I've read quite a bit about how sometimes, even with lobular invasive cancers, chemo doesn't always provide a clear benefit. I'm really not sure what to make of it all—just dreading the treatment.😞
I also had a double mastectomy with no reconstruction. My doctor mentioned that if I decide not to go with chemo, there’s an alternative combined with hormone therapy that works somewhat like chemo—at least that’s how I understood it, though I’m not entirely sure.
This whole range of treatment options feels so barbaric, even though I know we've made a lot of progress. Still, it all feels really harsh on both the body and the mind.
Wishing you all lots of strength to go through this!!
Update: Stage 2B, (ER+\PR+\HER-2 neg), tumour grade 3. Multiple tumours, biggest 4cm.
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@vignjevic I just wanted to share my experience with invasive lobular carcinoma (ILC), in case it's helpful as you navigate next steps. My tumor was very small—just 3 mm—but it had already spread to the lymph nodes, which was a surprise. Because of that, I chose to have a double mastectomy and biopsy showed cancer in both breasts. Four months of Lupron followed to shut down ovarian function, and afterward, I opted to have my ovaries removed entirely. My doctor also recommended Zometa—not only to help protect my bones from osteoporosis caused by anti-estrogen therapy, but also because some smaller studies suggest it may reduce the risk of recurrence slightly. I did Zometa infusions every six months for three years.
Two months post-surgery, I began anti-hormone therapy. I started with Letrozole, which was rough for me—lots of side effects and contined for 2.5 years. After a 6-week break, I switched to Exemestane, which was much more tolerable. Once I hit five years on the medication, my doctor recommended stopping. I will see him again after five months off medication, that is this coming Monday.
As you probably already know, lobular carcinoma tends to grow slowly, is often strongly hormone receptor-positive, and doesn’t respond well to chemo. One pro is that recurrence tends to happen later, but the downside is that ILC can be harder to catch early since it rarely forms a lump.
At the end of the day, no one knows exactly what’s going on inside us—but for now, I’m focusing on not borrowing worries. If I can offer one suggestion, it would be to seek a second opinion if you haven’t already, and to ask for an Oncotype test if your doctor hasn’t ordered one. It gives more specific insight into how slow-growing your tumor is and whether chemo or radiation is recommended in your particular case.
Sending you strength, calm, and clarity as you navigate all of this.
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Thank you so much for your reply, @lillyishere ! Really great information. It's honestly incredible they found a 3mm tumour in you—so tiny!
I’m going to push for the Oncotype test. My doctor initially suggested it, but after they found cancer in the lymph nodes (only on the left side), and since one of my tumours was larger (4cm), they felt the test wasn’t necessary—chemo seemed like the safest route. I also had a PET/CT scan, and thankfully, nothing showed up.
I’m struggling to come to terms with chemo. Maybe if the Oncotype test shows it would really help, it’ll be easier to accept. I don’t know...
For now, I’m stage 2B, had a double mastectomy, and the tumour is grade 3.
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hi , I’m new here. Had partial mastectomy with reconstruction 4 weeks ago. Dx with stage 1a invasive lobular cancer. I’m 78 but in good health. I’ve been giving an option of not having radiation with a recurrence rate of 10% in 10 years or having radiation with a recurrence rate of 1% in 10 years. Despite my age, I’m concerned cosmetically what will happen with radiation. I chose to have reconstruction at the time of the removal I did not want to have surgery twice.Im wondering now if i should have waited.I’m feeling overwhelmed with the decisions I have to make. Seeing a med oncologist next week. Oncotype luckily was only 18.
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Hi,
I am new here. I am waiting for surgery to be scheduled in the next 3 weeks for right side mastectomy with implant reconstruction started same day for ILC. I had a second opinion at City of Hope which concurred with Kaiser.
I found a lump in late July, my Biopsy was late Aug 2025. 5cm total mass. Ultrasound showed lymphs clear.
There is a benign lump left side and I'm conflicted about my early choice of bilateral for symmetry. Must be nipple removal Right side. Should I choose no sensation either side or one side natural? I'm lucky to be strong and relatively fearless but its hard to swallow all this. I've diverted myself successfully with some nice travels.
I feel like the %^^% will be hitting the fan pretty soon. I'm convinced I must follow all Dr protocol. I'm lucky to have a supportive husband and wonderful niece here near Los Angeles. I am 66.
Thanks , in advance, for welcoming me into this group. Julia
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I also have just been diagnosed with invasive lobular carcinoma in my left breast. I have had my consultation with my surgeon and he suggests I get a lumpectomy and then radiation. I have a second opinion visit set up but after speaking with my children they were set on me getting a double mastectomy. I emailed him and he met with me again and we talked more and my son facetimed during visit. He made me feel more comfortable with this plan. Has anyone had this done and what was your outcome.
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Thank you all for joining this community and sharing your stories. It takes courage to reach out when you're facing these decisions, and you've come to the right place—many members here have navigated similar choices and can offer support and perspectives.
@firefighter306 (and so sorry for our delayed reply). First, congratulations on your early-stage diagnosis and good Oncotype score of 18—that's genuinely good news. The cosmetic concerns you're having about radiation after reconstruction are completely valid and worth discussing thoroughly with your radiation oncologist and plastic surgeon. Many women have had successful outcomes with radiation after reconstruction, and there are techniques and timing strategies that can help minimize cosmetic impact. How did your appointment with the medical oncologist end up going?
@gypsy11995544 Welcome! It sounds like you're getting excellent care with two major institutions confirming your treatment plan. The bilateral mastectomy question is one many women struggle with—there's no perfect answer, only what's right for you. Some things to consider as you think through the symmetry question:
- Recovery from bilateral surgery vs unilateral
- Your comfort with ongoing surveillance of the left side
- Whether having one natural breast might actually make achieving symmetry easier down the road
- How important sensation is to you personally
These are deeply personal decisions, and it's okay to take the time you need to think them through. Your surgical team can help you understand the sensation outcomes for different approaches. I'm glad you have your husband and niece for support, and that you've been able to enjoy some travels before surgery. That grounding and joy matters !!!
@scissorhnz It sounds like you're doing exactly the right things—getting a second opinion, involving your family, and having open conversations with your surgeon. The fact that your surgeon met with you again and included your son shows good collaborative care.
What matters most is finding the treatment path that gives you confidence and peace of mind. Your surgeon's information about recurrence rates is important data, but so is what will help you feel most secure going forward.
In general……
You're all facing significant decisions, and the feeling of being overwhelmed is completely normal. A few things that might help:
- Write down your questions before appointments
- Bring a trusted person or record conversations (with permission) since it's hard to absorb everything
- Remember that in many cases, there isn't one "right" answer—just different paths with different trade-offs
- Be patient with yourselves as you process this
This community is here for you. Many members have walked these paths and can share their experiences with different treatment choices, reconstruction options, and managing the emotional weight of these decisions.
Please continue to keep us updated on how you're doing and don't hesitate to ask questions. You're not alone in this.
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Now I am leaning more towards bilateral mastectomy with both implants. I guess because how it looks is more important than keeping some sensitivity on the non-infected side. Which would have a risk of about 12-18% new cancer appearing there. Slightly higher than national average.
I talked with my surgeon and my general dr yesterday. My general praised both my breast surgeon and my plastic surgeon by name and said she has had patients with these surgeries and seen their work<><> I felt heartened.
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My surgery date is 11/7/25. Bilateral is a go. I'm feeling quite up and down and trying to fill my days as if they were my last….
Do you think its best to stay overnight in hospital after bilateral mastectomy or just outpatient will be ok. All my home Nurse options are fizzling out. But my husband and 23 yo niece will be on hand. Scared of the sjjjj hitting the fan….
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@gypsy11995544 Thinking of you today! Please let us know how your surgery goes and how you're healing.
Sending gentle hugs!
—The Mods
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