Anyone Else Diagnosed with Invasive Lobular Carcinoma?

I was just diagnosed with this. Mine was caught very early as well. I’m scheduled for a lumpectomy on 5/16. They feel my results will be the same - with no spreading. Can you tell me how the radiation was, and how about the Anastrozole. Will it be for 5 years? Have the hot flashes gotten better?

Hey Janet! The radiation was painless but I will admit, I was a little overwhelmed at my first visit because I wasn't expecting the machine to be SO big and move all around me. I just wasn't expecting that. I think since I was told the radiation was going to be focusing on just my one breast, I was thinking it would be like the machine at the dentist when they take x-rays. So there's that. You meet the same patients each time you go and hear their stories. Made me feel even MORE blessed because I only had 5 treatments every other day. Most were there every day and for more than 5 treatments. The Anastrozole hasn't been a big deal for me. The hot flashes have been nothing major at all and are not every day! No dripping sweat, just a warm internal feeling.

And I may not have to take it for the full 5 years.... my dr said we'll see how my body reacts and go from there.

Thank you! I hope you have a bright future!

And, if they haven't told you this- the breast incision never hurt (in my case)but the underarm where the lymph nodes were removed hurt for about 2 weeks. Nothing major but a feeling of a sore/bruised muscle. AND, my nurse navigator told me later on to NOT have blood drawn or blood pressure cuffs on this arm where the lymph nodes were removed. It's to reduce the chance of getting lymphedema. She suggested I get a medical alert bracelet so I did that! I did so mainly to remind MYSELF of this because I was afraid I'd forget. You can get them from Amazon and customize it however you wish and not costly at all vs some other official medical alert websites with dainty jewelry type bracelets. I got a waterproof silicon one with a metal plate that had the official medical alert red symbol on it, with my medical info engraved.

I’m so glad to know that! I’m on it. Thank you so much!

Diagnosed with ILC 2/25. I'm unable to have lumpectomy because they would have to remove over 60% of my breast. I'm scheduled for double mastectomy in 4 days. It's been an emotional rollercoaster for sure.

Karen C wishing you well.

I was diagnosed with ILC in April. Had a lumpectomy with sentinel node removal on April 22nd. Then the margins were not clear enough and I have a micro metastasis in one of the three lymph nodes. So then I had a double mastectomy on May 22nd. Recovering quite well. Just some nerve pain on my left side where they took out a bit of the muscle as well as the tissue. Now back to waiting for pathology to see if the next steps include chemo or radiation or just hormone therapy. The waiting for each step seems to be the hardest part of this journey. And really I had never heard of ILC before this. Nothing showed up in my mammogram or ultrasound but MRI showed quite a large tumor . Actually they estimated 2.9cm but then after lumpectomy it was over 4! So imaging is really tough for ILC. I am just lucky my drs took it seriously when I said that I had pains and felt like something was not right.

Just curious, do you know how many centimeters your tumor was?

My ILC I caught myself. 1st stage, 1/11/111 because of the location suggest a masectomy. Instead I am using Letrozole shrink it. Has anyone else done the shrinking treatment? Did it work? Also how did you gals get yours caught so early on. My ILC does not show up on mammograms. I felt it on my own. Trying to find a clinic that will provide an ultrasound to compare the size prior to determining if it is shrinking. Upset here because it is protocol to have a mammogram first even though that is benign in my case since my cancer doesn’t show on a mammogram. Had 5 annual mammograms & the ILC never showed up. I believe the mammograms contributed to my cancer.

I also found my ILC on my own. I did a mammogram and it didn't show either. The ultra sound "something unusual" which led to the biopsy which showed the cancer. I then had a MRI with dye and that showed it clearly.

Terri, just wanted to let you know that my double mastectomy and it went well. I did have to stay in recovery an extra hour because my blood pressure dropped to low and I didn't awaken for a long time. I haven't had to use the pain meds she prescribed. Let me know when you get the drains out.

Yes I do and had a double mastectomy on 5/30.

Karen, so glad to see this! How are you doing now? I just had the drains and steri strips removed today. Such a relief to get those drains out. I’m a little worried that there is a little bit of swelling now but I was told that could be from removing the steri strips rather than having the drains removed and that makes sense. I probably should have said no when the PA asked if I wanted her to remove the strips. It might be better to just let them fall off on their own or have them removed a bit later in recovery process. Oh well I will keep on icing!

Wow, I'm so sorry for your situations. But good for those who were able to find the ILC on your own. I felt so lucky that mine was even seen on my regular annual mammogram. They're would've been no way for me to have felt mine considering it's size and location.

Terri, I'm doing pretty well. Took my first shower yesterday and seeing my completely flat chest didn't traumatize me as much as I thought it would. Still not having much pain at all. I go for my post up tomorrow and hopefully they will remove the drains. I also hope to be able to get results from the oncocyte lab. I keep telling myself it's okay to have two feelings at the same time. I look at my new body and I'm sad that my breasts are missing, and I 'm happy that the cancer is gone. Have you got your pathology results yet, and is it been determined if you need chemo or radiation?

I felt the same way looking at myself for the first time. I was just really happy to have those things gone that were trying to kill me. Are your drains that low already? That would be great it you could get them out so soon. I did get my pathology report back and it was very good. There was no residual cancer in the left breast where the lumpectomy had been. They did find a small tumor (lobular, but in situ and not invasive) on the right side. Definitely made me very confident that we made the right decision to remove both! I don’t have a definite answer on my next step yet as the oncologist that I want to see has no appointments available. My surgical oncologist is contacting him to get me on his calendar sooner . Very hopeful that I won’t need chemo.

Terri, my totals are under 10ml in 24 hours. I don't know what the parameters are so I guess I will find out.

So happy to hear yall with the double mastectomy are doing so well! God bless you! I'm not sure if you, Karen, were asking me or someone else about the size of their tumor, but mine was not quite 5mm

Oh you will definitely be fine having them removed with that little draining. I had one under 10 but the other was still like 30-35 and they removed it. I think some drs wouldn’t have but mine wants them out before 2 weeks no matter what so they still removed it. They didn’t seem worried about it being too high.

Yes. Same treatment. Went on Letrozole and could not handle side effects. I have an appt. With my oncologist on Tuesday to discuss. I'm thinking of not taking any hormone blocker. I do not have any genetic markers.

Many people in this community have experience with ILC, and it's wonderful to hear about your positive outcomes with clear lymph nodes and a treatment plan that's working well for you. Connecting with others who understand this specific diagnosis can be incredibly valuable, so hopefully fellow community members will share their experiences and insights with you here.