Invasive lobular cancer and treatment choices

Good luck! ILC and IDC. I got the second one wrong. Here is another truth from my experience; I had remarkably little pain. And I hope all goes well for you . Peace and joy to you!

Following in your footsteps. Ductal & ILC going on Wednesday for DMX.

After my diagnosis, both my grown daughters called their primary doctor and were put into a high risk breast cancer clinic (one lives near me and the other is in Seattle). Both those clinics have a protocol of alternating mammograms and MRI’s every 6 months.

I would not want to deal with another tumor, should you get one, but would gladly do their protocol as an early detector.

Thinking of you and so agree with you regarding imaging. My ILC with MRI was shown to be much larger and helped with surgery. I still opted for lumpectomy (58yrs old). After surgery margins weren't great so I did boost radiation followed by Letrozole which has now pushed me into osteoporosis so I'm going to start Fosamax. My oncologist at Dana Farber fought me on MRI surveillance (I asked for after annual mammo - 6 months alternating) - I told her I'd rather deal with reoccurrence when tumor burden is low. They simply cite academic articles reporting mortality not much different with early detection. What? How'bout what is better for the patient. All we have is early detection!

Yes, it blocked the estrogen that feeds on ILC shrinking the tumors enough to get the needed margins. The MRI showed my breast was completely full of tumors. I did a double mastectomy then 4 months of chemo followed by 6 weeks of radiation. They removed 19 lymph nodes 15 of which were cancerous so I am taking Exemestane and Verzenio trying to stave off further metastasis for the next 4 years. Will take the Verzenio for 2 years and the Exemestane for the rest of my life.

Boy I was never offered that. To late now I lost my breast. That’s frustrating. Did it work?

Hang in there. I took Exemestane for 6 months in order to get clear enough margins. It’s a tough decision either way.

Hello. It’s all so worrisome, isn’t it? I had one ILC and one ITC in my left breast. I chose a double mastectomy straight out even though my right breast was cancer free. I’m flat. And glad of it. In fact, it makes me feel sort of safe. I wear bras especially fitted by a surgical supply store when I want to feel like I look better. The choices are hard and you have to do what feels right to you. I have no regrets about the double mastectomy I chose. Good luck!

Thank you for your kind words. I couldn’t agree more! We must find a way to get the word out to women regarding their breast density so proper imaging can be used. I was a C density so those mini tumors hid in the density making it very hard to find. I know of 2 women whose ILC was seen on a routine mammogram but most radiologists don’t recommend a MRI because it’s hard to get the insurance paid for that. My radiologist couldn’t see anything on the mammogram or the ultrasound but because my left breast had gotten larger and firmer, he called for it. For most women, though, they just get blindsided, like me, and it’s already stage 3 or 4 and has metastasized.

Several states, mine included, have laws on the books that the radiologists must tell us in the mammogram report we receive what category of density the woman has. They have a disclaimer of sorts stating something like “you have dense breasts which is completely normal but you can reach out to your doctor to discuss the possibility of further imaging if you so choose”. That puts the onus on the patient (likely a layperson) to call the doc to discuss it. I have always had doctors who read my mammograms and it used to be that the doc would call me if that was needed. No longer. They are just too busy. That’s one of the reasons why this cancer was overlooked. I should have been in the high risk breast cancer clinic but my doc didn’t read my mammograms. She didn’t know that ILC exists. Most doctors don’t know anything about it. I pray the system gets fixed and no woman has to go through what I did. 🙏🏻🙏🏻🙏🏻

Thanks for the reply. Yes, I thought about that, too (having to have a mastectomy anyway if the margins were not clear on the second lumpectomy). I will try the hormone blocker (Anastrozole). Many people do not have side effects. Some do. (There are a lot of posts about Anastrozole side effects on Mayo Clinic Connect.) Since it is a pill, I can stop taking it any time I want. Also, I read that there are three different hormone blockers, and that if one causes bad side effects, often one of the other two will work out better. (That is also info from reading some of the posts by people on Anastrozole.) I have three friends right now on chemo who are all really suffering, so I am grateful that I won't have to have that. If the side effects of hormone blockers prove to be too difficult to cope with, I will just stop taking them (and tell my oncologist, in case there is another alternative). Here are some things I have learned from reading all the posts on Anastrozole: it may help to start the treatment gradually, such as every other day for a couple of weeks; taking them at night may help with sleepiness caused by this drug; if insomnia is a problem edibles may help. Exercise (like walking 30 - 60 minutes a day, or yoga) helps a lot. This wasn't on the Mayo Connect, but I recently watched a webinar from breastcancer.org in which a woman gynecologist specializing in sexual health recommended using coconut oil to ease vaginal dryness (try it daily for two months, then if it doesn't help, ask your doctor for an estrogen cream, to be used once or twice a week. She also said to wash only with warm water - absolutely no soap or other products). Hope this information is useful to all those out there with this problem! - Deb