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.

Sue Ellen Murrey | @semurrey | Feb 1, 2023
In reply to @lhwoz "Hi there New here. I was diagnosed in dec with ILC 2.1 cm. Had lumpectomy and..." + (show)
@lhwoz

Hi there
New here. I was diagnosed in dec with ILC 2.1 cm. Had lumpectomy and sentinal node removal last week and found out 1 node had "rare isolated tomor cells". My margins weren't clear so I have to go in for re-excision. I am feeling very anxious about lumpectomy decision bc possibly mastectomy could be done. But Ive been advised that outcomes were same for both options and conserving breats more ideal for me? I am small chested and feel like if it doesnt help outcome why go thru all surgeries/spacers and implants? The plan is radiation starting about 4 weeks after final re excision and unsure about chemo, then the hormone blocking meds for post menopausal. You seem to be in similar situation and to everyone reading does this seem on par with your plans if similar? Were you recommended same plan? Any input so welcome. This all is just brutal. Oh and FYI I had been on HRT for 5 years bc menopause was so rough (i am 55) and MD said I was a good candidate bc no history of breast cancer.

Jump to this post

Hi - Hang in there and so understand where your "are" - I finished my 19 radiation treatments last week and my onco likes to wait two weeks post radiation to start anti hormone meds. I'm 57 and will start on letrozole which I've very anxious about but taking one day at a time. I think your plan for re-excision sounds very similar to what my plan would have been had my margins not been clear. Once you get your oncotype results you will have a better roadmap in terms regarding if chemo would be part of the plan. I also was anxious about lumpectomy vs mastectomy but I am now very comfortable with lumpectomy decision as the science really does say in our cases the mastectomy doesn't impact the rate of re-occurrence. Don't look back on HRT treatment as who knows whether that had any impact. Keep us posted and hang in there!!

REPLY
1 reply
laf70 | @laf70 | Jan 31, 2023

Hi..I am getting results of my biopsy tomorrow.
Diagnostic mammogram classified mass as highly suspicious. I am 72 and with no family history, this has devastated me.
I have had a knot 🪢 n my stomach since the biopsy last Thursday.
I writing this because I know all of you have been where I am tonight.
I am so scared.
Thanks for listening.

REPLY
1 reply
lhwoz | @lhwoz | Jan 31, 2023
In reply to @semurrey "Hi everyone- I guess I can say I have my "treatment" plan and am moving forward...." + (show)
@semurrey

Hi everyone- I guess I can say I have my "treatment" plan and am moving forward. I met with a few different radiation onco and I wanted to share first my finds on the proton beam for breast. While my lumpectomy was on the right side, even for those on the left- proton beam is not necessarily better or safer. The specialist from the proton beam center at MGH explained the results as some have mentioned do carry risks like rib cage fractures but also given the expense many centers will offer for breast cancer if they have the availability (cost benefit, insurance etc involved). I also learned that there was a recent UK study done which did show similar outcomes for those treated by regular external beam radiation for a week and for those treated 4-6 weeks. However, at Dana Farber the radiation team is very conservative and this study only studied outcomes for 5 -10 years and they like to see 20yrs. I'm 57 ILC, 1.8c, ER+, HER- and my oncotype was 14. I was relieved that I could skip chemo and decided to go with the recommended 19-20 treatments of full breast radiation (I have small breasts so I guess that makes sense to me). Two weeks after radiation, I will start with Letrozole for 5 years which really scares me but my oncologist said there was no way out of that. My radiation mapping was yesterday and the plan is for me to start radiation on 12/27 (roughly a month since surgery). Hope this info helps - I will stay in touch. xoxo

Jump to this post

Hi there
New here. I was diagnosed in dec with ILC 2.1 cm. Had lumpectomy and sentinal node removal last week and found out 1 node had "rare isolated tomor cells". My margins weren't clear so I have to go in for re-excision. I am feeling very anxious about lumpectomy decision bc possibly mastectomy could be done. But Ive been advised that outcomes were same for both options and conserving breats more ideal for me? I am small chested and feel like if it doesnt help outcome why go thru all surgeries/spacers and implants? The plan is radiation starting about 4 weeks after final re excision and unsure about chemo, then the hormone blocking meds for post menopausal. You seem to be in similar situation and to everyone reading does this seem on par with your plans if similar? Were you recommended same plan? Any input so welcome. This all is just brutal. Oh and FYI I had been on HRT for 5 years bc menopause was so rough (i am 55) and MD said I was a good candidate bc no history of breast cancer.

REPLY
3 replies
npigford | @npigford | Jan 31, 2023

Newly diagnosed with invasive lobular cancer as well as DCIS. I am very interested in all information I can get. Thanks for starting this thread.

REPLY
mglinkhart | @mglinkhart | Jan 31, 2023

I agree, push for a PET scan. It will show everything you have. When you go to your appointments be armed with all your questions and write down the answers or record the session on your phone or have someone with you to be the designated recorder. When you schedule your tests scans or otherwise if they aren’t soon enough ask them to call you if they have a cancellation. Or call
Every day if you have to. Everyone of us are unique so advocate for you, ask questions and get answers. This is not a one size fits all disease. All of us here have been through or are going through what you are going thru. You will get great support here and anything you need to know pretty much someone has an answer. I pray you have the support at home to see you through this difficult journey.

REPLY
kwatson | @kwatson | Jan 30, 2023
In reply to @tcdarling "I had my yearly screening mammogram on 12/8/22 and it came back suspicious. On 12/15/22 I..." + (show)
@tcdarling

I had my yearly screening mammogram on 12/8/22 and it came back suspicious. On 12/15/22 I had a diagnostic mammogram followed by an ultrasound, resulted as BIRADS-4 and was told that day that I needed to have a biopsy. On 1/6/23 I had a stereotactic core needle biopsy. Pathology said negative for malignancy but I was diagnosed with ALH. The radiologist did not agree with pathology because I have pleomorphic calcifications in a linear distribution which he says are suspicious of malignancy. I now have to have a breast MRI and then an excisional biopsy. Everything is so delayed where I live, my biopsy isn’t until 3/6. I am 50 years old and my mother was diagnosed with breast cancer when she was 50. I am terrified, all the waiting is killing me. I feel stuck.

Jump to this post

I highly recommend you be your own advocate. Demand a two week turn around for your biopsy. Push your DR., one who schedules your mammogram, to get your appointment moved up. It's critic for both your physical and mental health. Or tell your DR. you are open to traveling a reasonable distance to get the biopsy. DRs sometimes forget that they signed up to help their patients get the care they deserve. They focus on the immediate need of the current day...they need to be as concerned and helpful and motivated to get you that appt and then continue to push the follow up.

REPLY
kwatson | @kwatson | Jan 30, 2023
In reply to @katiel207 "Hi, I’m new here, I really don’t know what is going on with me, I had..." + (show)
@katiel207

Hi, I’m new here, I really don’t know what is going on with me, I had 3 months ago severe pain in my left breast, so much so I had to hold it up after taken my bra off put heating pad on it, could not put any pressure on it . I have pain in my left shoulder and skin is very weird feeling when I touch it, almost like it’s numb but not the same numbing feeling if like my hand fell asleep. I have a spot on my arm pit that just seems odd to me, had it looked at a few years ago they said it’s fine. I also have a lump in my neck on left side, the pain in my breast is no longer as painful but to touch it hurts , most days it’s just a dull pain, I do have a hard spot on it, and twice now I have had a cyst on the outside under the breast that I have had drained. I have just recently been and had a mammogram and all is fine. I don’t think it is I just feel off. I would really appreciate any help. Thank you.

Jump to this post

Ask for an MRI. Do you have dense breasts? If so, that's the only way to see thru all the strata that dense breast have. Take control of your situation. I urge you to be
your own advocate.

REPLY
sandybainy1 | @sandybainy1 | Jan 30, 2023

Either an MRI or a pet scan. Mine showed up on a pet scan

REPLY
mjwhearts22 | @mjwhearts22 | Jan 30, 2023
In reply to @katiel207 "Hi, I’m new here, I really don’t know what is going on with me, I had..." + (show)
@katiel207

Hi, I’m new here, I really don’t know what is going on with me, I had 3 months ago severe pain in my left breast, so much so I had to hold it up after taken my bra off put heating pad on it, could not put any pressure on it . I have pain in my left shoulder and skin is very weird feeling when I touch it, almost like it’s numb but not the same numbing feeling if like my hand fell asleep. I have a spot on my arm pit that just seems odd to me, had it looked at a few years ago they said it’s fine. I also have a lump in my neck on left side, the pain in my breast is no longer as painful but to touch it hurts , most days it’s just a dull pain, I do have a hard spot on it, and twice now I have had a cyst on the outside under the breast that I have had drained. I have just recently been and had a mammogram and all is fine. I don’t think it is I just feel off. I would really appreciate any help. Thank you.

Jump to this post

Mammograms do not tell the whole story unless you have all fatty breasts. My strong recommendation is to push for a MRI! All my mammograms were also “fine” even after I was diagnosed with Stage 3 metastatic lobular breast cancer. If your breasts are dense, mammograms can’t see the cancer. Be a strong advocate for yourself. No one else can do that for you. You know your body better than anyone else. Please push for the MRI.

REPLY
mjwhearts22 | @mjwhearts22 | Jan 29, 2023
In reply to @mdr3 "Hi there. Dxed with Stage IIIc ILC (5 tumors, 10/16 diseased nodes -- diagnosis upon surgical..." + (show)
@mdr3

Hi there. Dxed with Stage IIIc ILC (5 tumors, 10/16 diseased nodes -- diagnosis upon surgical pathology). Even the team didn't know how advanced it was going in -- I had no symptoms of bc, so I was really surprised. I had had annual mammograms with ultrasounds included. This was Feb. 2019., at age 69. Presently NED, and feeling great! You ask about the treatments: 4 mos. dose dense chemo (AC and Taxol). 6 weeks radiation, 5 days a week. 3 years Zometa infusions, every 6 mos. 2 years Tamoxifen, which I changed to 8-10 years Anastrozole based on a second opinion. I mention all these details to outline some thoughts to share: I pushed for surgery asap (ended up being modified radical mastectomy, clear margins). I did all the treatments on schedule as quickly and compactly as possible (because this does matter). I got a second opinion at a nearby cancer hospital (as opposed to just using the opinions in our local "cottage" hospital). I interviewed 2 surgeons for the job, and got the best one. Used a porta-cath instead of IV infusions (just had that out 2 days ago). Kept working throughout (this was important to keep up energy) and tried to be as upbeat as possible. I wish for you the very best, and feel free to question me if you wish!

Jump to this post

Thank you for posting. My diagnosis was very similar. Also had annual mammograms. As we now know, lobular hides in the density of the breast. Double mastectomy and am now in the same regimen for treatment. Chas to have my 3rd chemo last week but broke out in an all body rash after my last chemo and the rash is just too nasty to even use my port. They aren’t sure what caused it and am being treated for herpes but whoever heard of it all over the body? It’s painful and itches like crazy. Am concerned about missing a regular chemo session. 14-17 nodes were cancerous and it metastasized in the interior of the breast skin. Am 71.

REPLY
View MoreView Less
Please sign in or register to post a reply.