Invasive lobular cancer and treatment choices

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

mjwhearts22, I am sorry that you had to go through the trauma of having ILC that metastasized into your lymph nodes. I am grateful to the radiologist who for some reason didn't like my mammogram and insisted that I get ultrasound. which found suspicious calcifications. At that point she insisted that I get a biopsy, which revealed the ILC. It isn't usually found by mammogram. More women need to be getting screened by MRI.

I never had an infusion after the mri dye or the lymph node dye. I was never told it was bad for me. I’m more concerned about the estrogen blockers and their effects on my body. I’m not real excited to be put on them.

Also I am having mris/ ultrasounds instead of mammos from now on. The mammo did not show my ILC. Is anyone having mri and having a hydration infusion too to wash the die out of your system. I have not had it yet and am requesting it for my follow up mri in july. The gadolinium dye is not good for you but it is all they have to show the breast cancer in breast if any.

Hi Deb, I’m 68 as well. Do you have to be on a blocker? That’s my main concern. It’s like poison going into my body. The effects take away the quality of life. I’m not rushing into reconstructive surgery. Having 2 surgeries in 2 weeks my body needs to heal. Let me know what you decide to do. My decision for the mastectomy was if I went through another lumpectomy and the margins were not clear again that would mean another surgery! I just wanted to avoid that. Sending you lots of hugs. Denise

I’m sorry . It’s a horrible type of cancer that the normal mammograms and MRI can’t find. I was lucky the radiologist found one of my tumors with ultrasound sound. I had to have the mastectomy to get clear margins. Sending you positive thoughts!

I was 71 when I had a double mastectomy for ILC (it took 6 months to get clear enough margins because it didn’t show on the mammograms and ultrasounds I’d had for decades). As a large breasted woman, I was immediately relieved not to have breasts. While it’s not for everyone, I am fine being flat (stay away from princess seams) though it really rankles me that I had to make the decisions at all. Proper imaging (MRIs) would have found it years before it metastasized into my lymph nodes. Now, I will have it for the rest of my life.

Thanks, Denise, it does help. My surgeon is male, but that is basically what he answered when I asked him what his recommendation would be for his wife or daughter. Since I didn't have clear margins, the oncologist recommended a second lumpectomy plus radiation, but I'm not quite as confident of his advice, even though it is statistically the same outcome. But the oncologist also didn't know what PLCIS (pleomorphic LCIS) was and that it required a further surgery if the margins weren't clear. He had to look it up, which is OK with me, since it is a rare type of breast cancer, but my surgeon knew exactly what it was and what was required, so I trust his opinion. Yes, I have been reflecting on the emotional and physical toll of a mastectomy. It's more the emotional that concerns me, since physically it will eventually heal. I'm 68 and still working at a job I love. My husband is very supportive, no matter what I chose. I don't plan to get reconstructive surgery unless I just can't live with the results. I thought I would give it six months to a year to see how it goes. I don't really want more surgeries. But that's a different topic. I really , really appreciate your comments! I pray for good healing for you, both physically and emotionally. - DSLT (Deb)

I asked my surgeon what she would do in my situation with unclear margins. She said she would get the mastectomy. That was my next move. If my margins were clear I would have kept to the lumpectomy and radiation. Invasive lobular is very sneaky. They found my 3rd tumor by luck with ultrasound. The mammogram or MRI never caught it. It’s been a week since the mastectomy. I have one drain out and one to go. I’m healing but is a much harder surgery emotionally and physically than the lumpectomy was for me. I hope this helps.