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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.

Profile picture for kstar077
kstar077 | @kstar077 | Jan 31, 2024
In reply to @casbc "I hear you, but at this point, the Cancer is my first priority. GET RID OF..." + (show)
Profile picture for casbc @casbc

I hear you, but at this point, the Cancer is my first priority. GET RID OF IT!

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I had IDC cancer. Left breast. 11mm. Had lumpectomy. Nothing in margins or lymph nodes. No radiation and am not taking hormone blocker. 4% chance cancer comes back doing radiation and blocker. 8% chance return doing nothing. 92% chance won't come back. I also had a hysterectomy. I am going to have mri every 6months and ultra sound. My mammos do not show IDC. I found lump myself. After I had mammo that said no cancer. And I hD to point to spot 12:30 left breast. 6cm from nipple. It showed on mri. Surgeon said IDC like cobwebs not visible on mammo. Yikes!. Mris for me in future only. And ultra sound.

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casbc | @casbc | Jan 31, 2024
In reply to @nanny23 "I went to Sloan Kettering after my doctors watched a lump I has in my breast..." + (show)
Profile picture for Nanny23 @nanny23

I went to Sloan Kettering after my doctors watched a lump I has in my breast turn into cancer. If you have cancer go to Sloan.

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I live in S. Florida and will be going to the Lynn Cancer Institute here. I have no desire to go to New York. I do know that Sloan is excellent as well. Thanks & best health wishes. I've had a lumpectomy and will be doing a double mastectomy in a short while. Not taking any unknown chances.

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1 reply
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casbc | @casbc | Jan 31, 2024
In reply to @kstar077 "I want to have mris and ultrasound of my breast from now on but I do..." + (show)
Profile picture for kstar077 @kstar077

I want to have mris and ultrasound of my breast from now on but I do not want the dye with mris. I will try to have my surgeon and oncologist order it without dye. The dye is not good for you.

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I hear you, but at this point, the Cancer is my first priority. GET RID OF IT!

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1 reply
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casbc | @casbc | Jan 31, 2024
In reply to @sedonadreaming "Sue Ellen, My scenario is same as yours, but I don't want radiation. I also don't..." + (show)
Profile picture for sedonadreaming @sedonadreaming

Sue Ellen, My scenario is same as yours, but I don't want radiation. I also don't want to have to go through with this again, if I can do everything in my power up front. I am not good with "wait and see" as it relates to this topic. I know it's not a guarantee to have mastectomy, but in my mind/emotionally, getting rid of the breast tissue in its largest portion, goes a long way toward decreasing my anxiety about recurrence...lurking masses that previously never showed up on any imaging, despite having 3D mammos every year for several years. The MRI report stated the tumor in the right breast, large clump of cysts in proximity ("probably benign") and left breast with several oval masses "probably benign, recommend MRI again in 6 months". The word "probably" leaves me no consolation. I suppose many might think I am looking at this as overkill, but the reasons for me are many, including having watched a very good friend die a miserable and painful death from peritoneal cancer and know that ILC has a propensity for the peritoneum, bones, along with GI tract if it decides to show up and live elsewhere. Some people are willing to roll the dice. I am not. Now, might the plastics guy talk me into a single? Maybe. I won't close my mind to it, but my inclination/spidey-senses are telling me to do the double.

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I had a left breast Lumpectomy, & 3 Lymph nodes removed. Going to Oncologist today to see what's next. I WANT a double Mastectomy for sure-no questions since this ILC is not to be fooled around with. I don't need it to metastasis anywhere else. I do not want reconstruction at my senior age, no more possible infections or repeat surgeries. I've done a lot of research but sadly, there is so little on ILC.

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sedonadreaming | @sedonadreaming | Jan 30, 2024
In reply to @semurrey "Thinking of you and totally understand - have you been diagnosed with ILC? I'm assuming you've..." + (show)
Profile picture for segm @semurrey

Thinking of you and totally understand - have you been diagnosed with ILC? I'm assuming you've had biopsy showing ILC and then you also have clumps of cysts etc. I too have many cysts and density so I requested alternating 6months mammo and MRI. One year post lumpectomy and radiation for 1.8cm ILC right breast my 3D mammo is new baseline. I will have mammo in April - I hear ya on surveillance - very stressful but will be my norm.
Keep us posted. xoxo

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Yes. ILC with large clump of cysts nearby in R. Breast. Hoping for same surveillance routine as you with alternating MRI/ 3D mammogram or U/S. Guess I will find out down the line. Gotta get the cancer out first 🙂 Hoping for a solid plan by week’s end. I decided that SMX w/immediate R. DIEP and contralateral augmentation ( lift/fat graft) is where I am finding peace. I see the one surgeon in a.m. and have abd./pelvis CT in PM for plastics. Positive thoughts. 😉

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segm | @semurrey | Jan 30, 2024
In reply to @sedonadreaming "Sue Ellen, My scenario is same as yours, but I don't want radiation. I also don't..." + (show)
Profile picture for sedonadreaming @sedonadreaming

Sue Ellen, My scenario is same as yours, but I don't want radiation. I also don't want to have to go through with this again, if I can do everything in my power up front. I am not good with "wait and see" as it relates to this topic. I know it's not a guarantee to have mastectomy, but in my mind/emotionally, getting rid of the breast tissue in its largest portion, goes a long way toward decreasing my anxiety about recurrence...lurking masses that previously never showed up on any imaging, despite having 3D mammos every year for several years. The MRI report stated the tumor in the right breast, large clump of cysts in proximity ("probably benign") and left breast with several oval masses "probably benign, recommend MRI again in 6 months". The word "probably" leaves me no consolation. I suppose many might think I am looking at this as overkill, but the reasons for me are many, including having watched a very good friend die a miserable and painful death from peritoneal cancer and know that ILC has a propensity for the peritoneum, bones, along with GI tract if it decides to show up and live elsewhere. Some people are willing to roll the dice. I am not. Now, might the plastics guy talk me into a single? Maybe. I won't close my mind to it, but my inclination/spidey-senses are telling me to do the double.

Jump to this post

Thinking of you and totally understand - have you been diagnosed with ILC? I'm assuming you've had biopsy showing ILC and then you also have clumps of cysts etc. I too have many cysts and density so I requested alternating 6months mammo and MRI. One year post lumpectomy and radiation for 1.8cm ILC right breast my 3D mammo is new baseline. I will have mammo in April - I hear ya on surveillance - very stressful but will be my norm.
Keep us posted. xoxo

REPLY
2 replies
Profile picture for kstar077
kstar077 | @kstar077 | Jan 29, 2024

I want to have mris and ultrasound of my breast from now on but I do not want the dye with mris. I will try to have my surgeon and oncologist order it without dye. The dye is not good for you.

REPLY
2 replies
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kayhaun | @kayhaun | Jan 29, 2024
In reply to @kstar077 "I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92%..." + (show)
Profile picture for kstar077 @kstar077

I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92% chance will not come back had lumpectomy. Margins clear. Lymph nodes clear. Did not show up on mammo. Ì felt lump and had ultrsound and showed up on mri. Did not show up on ultrasound til I pointed out felt lump. Opted not to have radiation nor hormone blocker. Will only have mris from now on and ultrasound. Mammo did not show cancer.

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I had same experience. Very large lump not detected by mammography. I saw it. Lymph nodes involved. Left breast. Had mastectomy. Am taking AI and having 5 wks of radiation. No metastasis shows on scans after surgery. I too will have only MRIs from here on.

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Profile picture for Nanny23
Nanny23 | @nanny23 | Jan 29, 2024
In reply to @kstar077 "I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92%..." + (show)
Profile picture for kstar077 @kstar077

I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92% chance will not come back had lumpectomy. Margins clear. Lymph nodes clear. Did not show up on mammo. Ì felt lump and had ultrsound and showed up on mri. Did not show up on ultrasound til I pointed out felt lump. Opted not to have radiation nor hormone blocker. Will only have mris from now on and ultrasound. Mammo did not show cancer.

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I had the double mastectomy so I would not have radiation. Radiation on 2 breasts after chemotherapy would have been too much to handle. The doctors I went to earlier did not take the lump out. They watched it become cancer. After it was found in both breasts I went to Sloan Kettering in N. Y. city. They specialize in Cancer only.

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Profile picture for Nanny23
Nanny23 | @nanny23 | Jan 29, 2024
In reply to @kstar077 "I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92%..." + (show)
Profile picture for kstar077 @kstar077

I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92% chance will not come back had lumpectomy. Margins clear. Lymph nodes clear. Did not show up on mammo. Ì felt lump and had ultrsound and showed up on mri. Did not show up on ultrasound til I pointed out felt lump. Opted not to have radiation nor hormone blocker. Will only have mris from now on and ultrasound. Mammo did not show cancer.

Jump to this post

My cancer did not showon mammogram either. Lobular Cancer doesn’t showon a mammogram I had to have a double mastectomy cause I had a different type of cancer in my other breast. I didn’t want it coming back. Went to Sloan Kettering in Manhattan. I am cancer free 21 years. Thank God!

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