1. < Breast Cancer

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

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

ssmab | @ssmab | Nov 8 11:15am
In reply to @vickee "I am new LBC patient. I have not started hormone therapy. I would like ask if..." + (show)
@vickee

I am new LBC patient. I have not started hormone therapy. I would like ask if every one who takes tamoxifin will has side effects, does anyone not have any side effects?

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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❤️

REPLY
1 reply
vickee | @vickee | Nov 8 3:17pm
In reply to @ssmab "Hi Vickee, I was 70 at my diagnosis in 2022 of stage 1 ILC in one..." + (show)
@ssmab

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❤️

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

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 9 5:13pm
In reply to @lucylocket "I was diagnosed with invasive lobular carcinoma in August. I had single mastectomy 3 weeks ago...." + (show)
@lucylocket

I was diagnosed with invasive lobular carcinoma in August. I had single mastectomy 3 weeks ago. Can anyone tell me when will this pain, soreness and swelling go away ? Is there any cream, etc to help with that?

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@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?

REPLY
1 reply
lucylocket | @lucylocket | Nov 11 9:34pm
In reply to @colleenyoung "@lucylocket, 3 weeks post mastectomy is not a long time. Recovery takes time. Another week has..." + (show)
@colleenyoung

@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?

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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.

REPLY
1 reply
windyshores | @windyshores | Nov 12 5:54am
In reply to @lucylocket "Thanks Colleen...... No, the soreness and swelling is still there. Coming up on 5 weeks since..." + (show)
@lucylocket

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.

Jump to this post

@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!

REPLY
alibee | @alibee | 22 hours ago

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

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