Lobular Breast Cancer: Let's share and support each other

Hi Vickee,
I was 70 at my diagnosis in 2022 of stage 1 ILC in one breast and IDC in the other. I had a DMX. I also have osteoporosis and had 2 spinal compression fractures at the same time. So even tho I was way past menopause they put me on Tamoxifen because it can help your bones (if taken after menopause). The usual Aromatase Inhibitors that are given to bc patients after menopause can cause more bone loss. So those are not for me.
I had some mild hot flashes every night after starting tamoxifen, for maybe a year. I used a fan (either a little battery powered one, or an old fashioned fan) and that helped. I don't have the hot flashes anymore. I would say my mind wanders a little more than it did before tamoxifen but I can handle that. Again I would say that's mild. I had my surgery and aftercare at Mayo Rochester and they told me it was important to make sure and get up and move your legs, so walk around every 2 hours if you have been sitting or riding in the car or flying in a plane. That's important because there is a very slight risk of blood clots while on tamoxifen. So I make sure that I do that. Some women have no side effects at all. I hope that is the case for you! I take the 20mg pill right before bed as I read on different bc sites that women who take it at night before bed seem to have less side effects. So I figured ok why not take it at bedtime. As I take the pill I say to myself, "this tamoxifen is helping me, it's not harming me". Then when I say my prayers I ask for "help not harm" from tamoxifen. I am a believer in a positive attitude and a lot of prayer. Sending love and healing wishes to you and to all on this site❤️

Hi, thank you very much. You are so helpful.

@lucylocket, 3 weeks post mastectomy is not a long time. Recovery takes time. Another week has passed since you posted. Has the soreness and swelling decreased in the meantime? How are you doing?

Thanks Colleen...... No, the soreness and swelling is still there. Coming up on 5 weeks since surgery. I'm doing therapy at home and I walk every day . It helps some but by about 8 pm every night, it's pretty rough. Tightness in area of scar and still swelling under arm.
I have an indention right above my scar that's about 2 inches in diameter. Anyone else have that happen ? Do you know what causes that. Any answers appreciated. Nurse navigator at surgeon's office advised trying massaging it, but hasn't helped yet.

@lucylocket did you meet in person with the nurse at your surgeon's office. Both my daughter and I have had double mastectomies and found that they would fit us in when we had problems like the ones you are describing. Also the visiting nurse can be extended. Sorry you are going through this and hope you can be seen if you haven't been!

Hi, the Lobular Breast Cancer Alliance is giving those with ILC a chance to participate in a survey on ILC, specifically your experience with it and follow up surveillance. The survey deadline is December 26th. If you’re interested in participating, you can find it in this link,: https://us17.campaign-archive.com/?u=707f19704c8072ecc1620a5c9&id=d854477c09&e=927d752f21/?u=707f19704c8072ecc1620a5c9&id=d854477c09&awesome=no&e=927d752f21#anchor2

I had the lumpectomy for multifoci lbs on left breast.
Stage 1 grade low recurrence score.
I was told I could skip radiation by ancoligist if I went on hormone blockers. With all the other issue I have pmr osteoporosis, they recommended tamafoxin, which isn’t the best for LBC but less bone damage with it. I really didn’t want to take hormone blockers since I have been on prednisone for over 2 yrs.
I decided to talk to radiation doctor, and he told me since a lot of women can’t tolerate the hormone blockers and since I have multifoci in 1 quadrant, I should get radiation.
I did 16 treatments, with hold the breath sessions and got extremely sore after last treatment. It only protects the breast that was affected,
Im 75, and they tell older women a lot they don’t need radiation, with stage one, I think they say that because they think something else will get you before the cancer.
Not sure if I made the right choice. It’s a hard decision to make when they leave it up to you.
🙏🙏

I have Lobular Carcina in situ undifferentiated Pleomorphic breast cancer. The word Pleomorphic is the kicker there due to being less than 1% of cancers. It's month 6 after 2 lumpectomies, radiation and daily anastrozole, nothing like a menopause rerun. Anyone else have pleomorphic cancer cells? I'm willing to be part of a study, the prognosis isn't great.

Glad you did the radiation, do any and all that will help or stop the cancer from recurring or metastasizing.

So sorry to hear about your uncommon diagnosis, and hope your treatments work out better than expected for you. The Lobular Breast Cancer Alliance has links to research studies and would be a good place to start.