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

First post for me tho dx’d a year ago earlier this month with ER + ILC stage 1 in left breast. BC in my family including my sister had all been ductal.I opted for double mastectomy with reconstruction for all the quality of life reasons you are articulating and NO regrets, period! Did lots and lots of research and reading as part of my decision making. My surgery was end of March, coordinated with the plastic surgeon to put in the expanders. Early catch confirmed by pathology and sentinel lymph nodes clear, so thankfully no chemo. Expanders out and implants in—small as never was very busty—end of August. Might have “gone flat” but wanted to have a bit of shape and glad to have done so. No tattooing for me tho. Healed with no issues and back to normal. Just turned 73. Hubby and I celebrated 50th in September and he’s been great thru this. He was dx’d with prostate cancer the week after I got my dx and had 10 weeks of daily radiation treatment that was far more challenging than either of us anticipated, but with a great outcome thus far. Initially on Anastrozole pre and post March surgery but in the Fall decided I did not like the way it was making me feel and took myself off, for the same quality of life reasons that led me to the double: If this sneaky cancer comes back, I will deal with that reality then with no regrets about decision to live my life now! Oncologist not crazy about my decision on the AI but my surgeon supported it from get-go. Both female docs BTW. I have a f/u in person with my Onco tomorrow as part of standard f/u 3-4 times/ year protocol. Annual follow-ups with both surgeons, and every other year MRIs starting in 2025 to monitor the implants of all things. Had I been even 20 years younger, I may have chosen differently but for me in my 70’s this was and is the best for me.
Wishing you all the best as you process thru what ultimately is a unique-to-you decision.

Sadly, I joined the ILC statistics on 12/27/23. Since meeting with the oncology surgeon and with the results of MRI, node ultrasound, genetic breast marker panel, I am finding myself less and less confident that I would ever find peace with a lumpectomy and combine that with my aversion to radiation, I am left exploring double mastectomy (because I am not doing one and then finding out later that I need to do the other).

Why is this so darn hard? I had convinced myself to just suck it up and do the lumpectomy because it's easier recovery and "radiation should be pretty easy"...easy to say for someone who is not having to contemplate it. The surgeon said lumpectomy would absolutely be an option and that if I decided anything "crazy" he would tell me, but supports my decision. What is "crazy"?

Today I've spun 180 degrees. My gut just keeps telling me that the correct move is just to free myself of the most breast tissue I can, even though it's not a guarantee because to do less would never buy me peace of mind.

Drivers for this radical change in thinking stem from not wanting to ever go through this again, if at all possible, fear that ILC will affect my left breast, if it hasn't already (because why would I believe anything the imaging that missed it in the right for so many years states), fear of doing lumpectomy/radiation and suffering long-term effects from the treatment, another missed tumor that metastasizes to far off organs like the GI tract or peritoneum, distrust that despite post-lumpectomy treatment, that there was missed cancer left lurking, considering what my state of health may be in 5-10 years when I might face mastectomy if there's a recurrence (no way to know, but it did enter my mind). Pros for lumpectomy, in my mind, just amount to less recovery time and less life disruption at this moment in time. The cons seem to outweigh the pros for me, when I think it through, despite the relatively non-statistical difference in life expectancy/recurrence from one surgery to the other (based on the small groups that have been studied as compared to other types of breast cancer).

As I was busy convincing myself of my newfound decision to lock onto bilateral mastectomy with immediate reconstruction (if even a possibility for me), I was flooded with a heavy dose of guilt...guilt for considering removal of the both breasts, guilt for considering symmetry in the equation since I don't want to go flat...how vain of me...guilt at the though of the inconvenience it would cause my husband (though he wouldn't agree) and his work routines, guilt for the thought of creating financial stress for my decision (cost of life in my mind vs money cost), etc, etc. Am I special in my level of guilt I feel for any decision I make or is this a completely normal phenomenon? Pros to mastectomy for me include a bigger peace-of-mind that I did everything I could up front to get rid of the source or potential source, possibility of maintaining some sense of symmetry, get it done and move on. Cons could be a plethora of repeated surgery and possible complications/infection, downtime from work, longer recovery.

So, with the cons more than the pros for my decision of mastectomy, why does it still feel like the right choice? I just don't see either choice as having a pro list that would outweigh the cons in the end.

Talk to me! I know some of you have been here.

Thank you for your thoughtful and thorough reply. I appreciate it very much. It is reassuring to learn how others are being imaged and followed, whether it is similar to my experience or not. As you stated, there are different schools of thought, different approaches, and we can all learn from each other.
I hear you on the good nutrition, exercise, and sleep. I do pretty well on all, but there's always room for improvement. I thought that since I was able to get back to my 5 mile walks, I was good. Then someone invited me to play pickleball and I tripped over my own feet, I felt so sluggish. So I definitely lost some balance, speed and strength. Those are my new goals.

Thank you for sharing your experience. I know they learn more every day and I try to stay positive and hopeful that more knowledge on our disease comes soon.

Best to you as well ❤️

@deb23

These are all excellent questions! I have ILC, diagnosed de novo Stage 4 with mets to bones.
1. " is the radiologist experienced or trained on what unusual things and in what unusual locations to look for because this is ILC?"
They probably are. I always feel bad that patients do not have a way to communicate with the radiologist reading the scans. I once challenged a scan with my oncologist. She asked for a re-read, and asked around a second person to read it as well. One thing you can do is, ask your oncologist to put a note when requesting scans that you have ILC. Perhaps it will give them a heads up.

2. "PET scans.": I think there are different schools on this. My onco never ordered a PET for me. I asked about it multiple times but she said she believes "CT CAP + bone scans are the best way to follow it" in my case. Now bless your heart, I already have bone mets, so it may be a different scenario for me. There are some PET scans that show the Estrogen+ cancer in the body, you might want to ask about them (18F FES PET). Some dr's caution against the glucose your body intakes for PETs. Again, there are different schools...

3. CT: CT will, in all likelihood, show if there's something in your organs (kidney, liver, etc.)

4. " I ask and ask questions and am probably becoming a pain in my onc's neck": It's good, you will keep them on their toes 🙂 In my dr's notes it says "the patient has anxiety over her diagnosis". You bet I do!

I hope and pray it never comes back to you. Ask questions, take some actions, sure, but please do not over concern yourself with thoughts of stage 4. It looks like you are under good care. All research agrees on good effects of regular exercise, eating healthy, sleeping well. Try to adopt these and hope for the best.

Whew! You have been on a journey. I once had a friend tell me you need to be your own advocate. Congratulations on doing that. Right now in your journey I’d suggest you find and discuss all of your options with an oncologist that has all of your history and you will have a connection to. Number one you want to stop this cancer from growing AND you want a quality of life. There are a lot of good options but nothing is perfect. Just so you know…you have been a good help to me…I will be asking for a biopsy in the swollen lymph node that has been in my left armpit for years and the lump in my right breast that didn’t show up on the MRI in November.

Hi jkh,

I just discovered this website and have also been on a LCIS journey. I did not have the most
knowledgeable or comprehensive cancer treatment since my diagnosis at 50 in 2012 in Florida.
I have had recurrences and it had never spread into a lymph node. I had multifocal in left breast only but & in 2012 I opted for double mastectomy. I've self-diagnosed 2 tumors in my left armpit since in 2019(oncology practitioners dismissed what I was pointing out finally biopsied it) that surgery w/ some radiation was in 2019. I moved to NC and felt a sm lump in 2022 . I've had radiation again. There was something they saw in 2022 in the pre MRI procedure on a vertebrae, but said it was only a "bone island" , no biopsy was done. I have strained my back with lifting and bending too much and the PA in Oct wanted to do an MRI of my back just in case. The bone island they said is about 20% bigger they thought, biopsied it and it is Lobular BC on left vertebrae. They recommend I take Arimedex. Is that supposed to shrink tumors? What are the physiological outcomes of Arimidex? It states it block the Estrogen Positive cancer cells from growing, but is there any one here or studies showing it shrunk the actual tumor? As for side affects, I don't read anyone saying it causes GI issues. I was told that is the main problem and I think stiffness. Anyone have metastatic BC to Bone?
What Bone Density pills do people recommend? Is is recommended --correct? Thanks!

I would like to see this too. Great suggestion.

Hi Deb,
1. Lobular breast cancer(ILC) invasive lobular carcinoma (science & support).
2. ILC Sisters: lobular breast cancer support & evidence-based information.

Hope this helps.

What are the names of these groups so I can find them?
Thank you

Does someone have the websites for ILC Facebook groups? Considering a second opinion for myself at MD Anderson.