Invasive lobular cancer and treatment choices

My experience with ILC is that I had a lumpectomy, but the margins were not clear , so I need a second surgery. However, the surgeon is giving me a choice between a second lumpectomy plus radiation therapy OR a mastectomy. The long-term survival rates are identical (no statistical significance between them.) The surgeon advises a mastectomy. The oncologist advises the lumpectomy plus radiation. For those who had a mastectomy, even though you might have had a lumpectomy plus radiation, how are you feeling about it now? Do you regret it or are you glad you did it? Thanks for any advice! (I will still need Anastrozole with either surgery, but no chemo with either, due to the small size of the tumor - 2 mm).

I am having followup ultra sounds and mris to my breast cancer. I will be doing ultra sound of left breast in may and mri of breasts with gadolinium dye in july. I am having a hydration infusion right after mri to clear the dye from me. Has anyone done the hydrating infusion after mri for followup to ILC? My margins were clear and lymph nodes too. My cancer did not show up on mammo nor ultra sound. I felt lump. Mri showed it but the dye is not good for me. So I am having the hydrating infusion to clear the dye from my body after the mri in july. Has anyone done the hydrating infusion after mri?

I had ILC. 12mm. Lumpectomy. Last Sept. Had hysterectomy a year before that because I had endometrial cancer. I am also thin but otherwise healthy except two years ago diagnosed with RA. I control it with methetrexate and plquenil. Because of the testing I have had there is a 92% chance I will not get my BC back so I did not have radiation and opted not to do the hormone blocker. Because I have osteopinia and the blocker would throw me into osteoporosis. I lift light weights and walk and use elyptical 5 days a week. My mammos every year with ultrasound did not show my breast cancer. I found the lump myself. It showed up with mri with dye. I am having only mris now and ultra sounds but am having a hydration iv to clear the gadioleum dye from my system. My hair thinned but taking neutrofol everyday. We will see. I just. Keep moving and checking my self. Good luck to you.

My rheumatologist put me on reclast to avoid digestion problems

I had invasive lobular cancer in my right breast, tumor was 3.1 cm with additional nodules around it. Had 1 positive lymph node and one with ITC cells. Left breast invasive ductile cancer with 4 mm tumor. Both cancers were estrogen+, progesterone+ and Her2 -, I had double mastectomy with 7 weeks radiation including boosted radiation for positive margins in right breast. I did not have chemo due to low oncotype scores and no advantage.
I took the hormone blocker arimedix for 18 mos but lost 14% bone mass in my lower spine and hips within that time, memory loss, arthritis in hands, severe insomnia, mood disturbances, depression, etc. so quit the medication. I still see my onccologist but also see an md who is a functional medicine, naturopath as well. I take dozens of natural AI's and do intermittent fast along with rigourous exercise at least for days a week. I had my estrogen levels checked a few days ago and they were 14pg/ml. I contacted my oncologist office and they as I thought the labs were positive but they told me my levels should be 1-3pg/ml. I am worried now. Has anyone else taken the path I have successfully? Anyone had there estradiol checked while on hormone blockers? Any advise would be appreciated...

I'm only one year into Letrozole for ILC and my bone density pushed into osteoporosis. I'm 58 yrs, rather thin, small build who does all the calcium, vit D and strength exercises. The endocrinologist really thinks best option is to start with weekly Fosamax. I am in remission with my Chrohn's but there is a possibility I will have to go with the annual infusion of Reclast if I don't properly absorb Fosamax. I am very anxious as side effects seem terrible and no way of knowing if I will in fact have any spine fractures which my doc is most worried about. The doc also said root canal, crowns would NOT be an issue but extractions, implants would be procedures he would recommend getting before going on the bisphosphates. Anybody have advice....xooxox

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.

@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/
https://connect.mayoclinic.org/group/breast-cancer/
You can also use the search to find discussions related to mastectomy and reconstruction. You're not alone.

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.

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.