Invasive lobular cancer and treatment choices

Hi--sorry to hear you are going through this and I want to respond to the estrogen blockers question. Yes, many women have side effects, but I have not. I've been on letrozole for 15 months without problems. So, when considering the estrogen blocker, find out how much positive effect it will actually have. Then I think you can try it and always go off it if you can't tolerate it. There are also several different kinds, and you can switch if needed. I think mastectomy is your decision, based on what doctors suggest, and your personal preferences. The estrogen block is basically a more temporary decision. Wishing you well with decisions, and I'm sure you'll get helpful feedback here.

There is a balancing act with every person.

I had ILC, clear sentinel nodes and close enough clear margins after lumpectomy.

It is hard with ILC to get clear margins as tumors may be a bit bigger than can be known before.

Q’s and research for you. If you go with lumpectomy, radiation is a given.
Research first about implants as if implants are tried after radiation, some have had difficulty and implant failure.

You need to make the decision of mastectomy vs lumpectomy yourself and research, ask questions and even get a 2nd opinion.

As far as AI’s, that depends on you, what you want, your age and other health conditions and what % protection and probability it adds. Again, research and think this through.

The only ones that I myself have come across not even trying it were those who were very elderly, had severe heart issues, or open heart surgery and other conditions and doctors have advised against.

Then there are some who have tried and not gone the full amount of years.
Still up to you.

Hi! I’d rather not do any of the preventive stuff for my ILC, but after tons of reading and talking, I am now set on the course of taking estrogen blockers, namely for me Letrozole for many years, which is best prevention performer right now. It also has caused aching in many joints which were never a problem before. Hmmm. I’m also doing a course of radiation and I will undergo it all because of the large lymph node involvement found during the mastectomy. I was prescribed Verzenio as well, but have stopped because it causes me severe stomach pain. I’m Having infusions every 6 months to prevent the bone loss which accompanies estrogen blockers. It’s a long and rocky road and I must consider every day whether it’s one I want to travel. So much is gambling and so much is overkill probably. Make decisions based not only on long term health but also on your health each day. How many days do we give up now as we hope for more days somewhere down the road? Not an insignificant question. Best wishes as you make the daily decisions. Trust yourself.

Hi,I'd strongly recommend a mastectomy.The fact that there is not one solid tumor,but several ones here and there doesn't exclude that there might be others,that are small enough to be easily overlooked,even by a skilled surgeon.I would always be wondering about any possible stray cells lingering around somewhere,and there's nothing worse going through treatments and still have that nagging feeling on your mind.
Yes,a mastectomy is drastic,I had one myself,but,in the end I had some peace of mind and my health will always come first before any aesthetic consideration.You mentioned reconstruction and I think that's a great option.
I wish you the best of luck,and,make sure you take good care of your mental health,too!

Had ILC 12mm in left breast. Lumpectomy. Not in margins or lymph nodes. Had breast implants. Saline. At surgery Had new ones put in. Will have mri in july. Ultra sounds every 4 months. No more mammos for me. ILC did not show up on mammo and missed on ultra sound. I felt cancer myself and had diagnostic mammo. Did not show. Had ultrasound but had to point to rock feeling cancer. Had mri and it showed cancer. Did not have radiation. No hormone blocker. Had hysterectomy year prior. I am 74 years old with a 92% chance the cancer will not come back. Living my life.

Boy you are so lucky. I have lobular. I had a lumpectomy with positive margins. I have to have a mastectomy on my left breast and maybe chemo and definitely a blocker for the next 5 years.

I am lucky. I also a year prior to my ILC had a hysterectomy. I had a pelvic ultrasound that I made my gyne order after I had an mri of my back. The radiologist suggested the ultra sound of my pelvis because my endometrium was 7mm thick when it is suppose to be 4mm. I sent my report to my gyne. He said it was sine and wait for my annual with him which was 6months later. I had a bladder infection and went to my urologist. He took one look at my ultra sound report and said you need a biopsy. Did it and had a small cancer on my endometrium. Yikes! Had hysterectomy. No cancer in lymph nodes nor ovaries nor margins. But again I was my own advocate. The only place my cancer can come back is in my vagina and my surgeon is checking me in April. I just had a customer checking my bladder because I keep having bladder infections and it was clear. Good luck I hope no more cancer. For both of us.

I absolutely would, and did, have mastectomy. ILC is difficult to image. It doesn't all grow in one place, or lump, to be easily removed. I had 6.5cm ILC on L, smaller but multi-foci on R, margins clear, all nodes clear. Had double mast, no reconstruction, no regrets. I never considered reconstruction, to me putting an object in my body went against what I was trying to accomplish. I then did chemo, radiation, and now AI. AI started out a little rough, a lot of joint pain and stiffness that I had never experienced in my life. I walk a lot, do stretches, and found that any type of movement helped SO much to reduce aches. I still felt joint pain, especially after sitting for a bit, but it was tolerable to me for the long-term benefit of the drug. Now, 7 mos in, I suddenly realized my aches have reduced a LOT, it was so gradual I kinda forgot about it. I walk several days a week, and do online yoga and pilates a few days a week with survivingbreastcancer.org (only offered a couple times a month, but I repeat workouts on my own or find others on youtube). I know everyone's experience and body's reaction to all these treatments are different, but I set my mind to push through it, and I am now finding some relief. It was worth it to me.

@denisesjourney123, you may also be interested in other discussions about ILC. Using the group search, I found these:
https://connect.mayoclinic.org/group/breast-cancer/?search=Invasive+lobular+cancer&index=discussions
https://connect.mayoclinic.org/group/breast-cancer/?search=ILC&index=discussions
You can also use the search to find discussions related to mastectomy and reconstruction. You're not alone.

Diagnosed 2020 with ILC. I decided on a mastectomy because of a second spot that could not be biopsied due to its location. Ended up being nothing. But, as margins weren’t clear, In the end, the mastectomy was the best choice for me.
I had radiation but no chemo, thanks to my surgeon ordering an oncotype test, which indicated chemotherapy would have no affect.
I was on an aromitase inhibitor until this month. Off 1 1/2 years earlier than traditional 5 year plan because my oncologist ordered a breast cancer index test, which indicated that there is no additional benefit of continuing the drug.
I didn’t have side effects as some women have. So, don’t be concerned that you'll experience all or most of them. But, that said, the ai’s can increase glucose levels, cholesterol too. That’s where I’m at. Everyone is different. What others have done might not benefit you. Work it out with your oncologist to weigh the pros and cons. Medication can be changed based on your tolerance/side effects.
Long and short, we have a similar diagnosis, but all of us had different circumstances surrounding our decisions. Let your circumstances be your guide on how to decide.
I wish you well.