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 8 8:59am
In reply to @kstar077 "My surgeon wanted me to have manmo follow up. I said no because mammo did not..." + (show)
@kstar077

My surgeon wanted me to have manmo follow up. I said no because mammo did not show my ILC. Again I found it. It showed up on mri. I have had ultra sounds of entire breasts since. I will have an mri in July which will be 1 year since my last mri. It is because of expense and Medicare will not pay. Sad but true. I will never have another mammo. Why would I if it did not show my cancer. My surgeon's response was but it shows other cancers. All I can say is keep on top of your breasts your self. I was lucky I felt 12mm rock myself. I am a mammo tech and am shocked that mammo did not show my ILC. The ultra sound did but I had to show to tech. The exact spot where I felt it. My surgeon said ILC is like cobwebs and does not show up on mammo. Surgeon said that mammo shows other breast cancers. I am continuing to have ultrasounds and making sure tech goes over every inch of both breasts. Also, prior to feeling lump in breast I had a mammo my yearly five months before and it did not show the ILC in left breast. Nor did the ultra sound. My surgeon said the ultra sound probably skimmed over the cancer. She said the tech sweeps the breast and now I have them go over it slowly and with detail. My surgeon said my cancer was probably there two to five years before it was discovered. Again, I just had ultrasound of both breasts and in may having ultrasound of left breast and bilateral mri in july of both breasts. If I have cancer again I will have lumpectomy again. I did not have radiation and I am not doing the hormone blocker. I have had hysterectomy and I am thin and have osteopenia and do not want osteoporosis. I also am having a customer of my bladder tomorrow because I get bladder infections too often now. I also had colonoscopy one year ago and it was neg.

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It is pretty discouraging that insurance dictates our surveillance. I pay $1000 a month for insurance via the MA Health Care Connector (self employed) and my deductible is so high that after surgery and radiation I pay $300 monthly toward my large outstanding balance. You can pay monthly and stretch out and it will not impact your credit if your insurance will not cover. I don't understand as I still think early detection is all we have and isn't it ultimately cheaper for insurance companies if we catch it early? xo

REPLY
1 reply
kstar077 | @kstar077 | Feb 8 7:35am
In reply to @kstar077 "My surgeon wanted me to have manmo follow up. I said no because mammo did not..." + (show)
@kstar077

My surgeon wanted me to have manmo follow up. I said no because mammo did not show my ILC. Again I found it. It showed up on mri. I have had ultra sounds of entire breasts since. I will have an mri in July which will be 1 year since my last mri. It is because of expense and Medicare will not pay. Sad but true. I will never have another mammo. Why would I if it did not show my cancer. My surgeon's response was but it shows other cancers. All I can say is keep on top of your breasts your self. I was lucky I felt 12mm rock myself. I am a mammo tech and am shocked that mammo did not show my ILC. The ultra sound did but I had to show to tech. The exact spot where I felt it. My surgeon said ILC is like cobwebs and does not show up on mammo. Surgeon said that mammo shows other breast cancers. I am continuing to have ultrasounds and making sure tech goes over every inch of both breasts. Also, prior to feeling lump in breast I had a mammo my yearly five months before and it did not show the ILC in left breast. Nor did the ultra sound. My surgeon said the ultra sound probably skimmed over the cancer. She said the tech sweeps the breast and now I have them go over it slowly and with detail. My surgeon said my cancer was probably there two to five years before it was discovered. Again, I just had ultrasound of both breasts and in may having ultrasound of left breast and bilateral mri in july of both breasts. If I have cancer again I will have lumpectomy again. I did not have radiation and I am not doing the hormone blocker. I have had hysterectomy and I am thin and have osteopenia and do not want osteoporosis. I also am having a customer of my bladder tomorrow because I get bladder infections too often now. I also had colonoscopy one year ago and it was neg.

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I meant cysto of bladder I am having tomorrow because I keep getting bladder infections and have bacteria and blood in urine.

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kstar077 | @kstar077 | Feb 8 7:31am
In reply to @semurrey "Thanks for sharing and you're so on point with advocating for the best surveillance. My oncologist..." + (show)
@semurrey

Thanks for sharing and you're so on point with advocating for the best surveillance. My oncologist reluctantly agreed to my request for 6 month MRI after the first mammo post surgery which was a full year after ILC lumpectomy and radiation. I just don't understand why she was so difficult. She is at Dana Farber and I'm now wondering if it related to compliance.. insurance etc. Are oncologists dinged if they order MRI's. I am so discouraged and dread meeting with her again post MRI as if there is nothing remarkable she will probably not authorize further MRI's??? Do I reach out to MGH as they are in Boston too but I wanted to be a Dana Farber as they are a premier breast center. any thoughts!!??xoxo

Jump to this post

My surgeon wanted me to have manmo follow up. I said no because mammo did not show my ILC. Again I found it. It showed up on mri. I have had ultra sounds of entire breasts since. I will have an mri in July which will be 1 year since my last mri. It is because of expense and Medicare will not pay. Sad but true. I will never have another mammo. Why would I if it did not show my cancer. My surgeon's response was but it shows other cancers. All I can say is keep on top of your breasts your self. I was lucky I felt 12mm rock myself. I am a mammo tech and am shocked that mammo did not show my ILC. The ultra sound did but I had to show to tech. The exact spot where I felt it. My surgeon said ILC is like cobwebs and does not show up on mammo. Surgeon said that mammo shows other breast cancers. I am continuing to have ultrasounds and making sure tech goes over every inch of both breasts. Also, prior to feeling lump in breast I had a mammo my yearly five months before and it did not show the ILC in left breast. Nor did the ultra sound. My surgeon said the ultra sound probably skimmed over the cancer. She said the tech sweeps the breast and now I have them go over it slowly and with detail. My surgeon said my cancer was probably there two to five years before it was discovered. Again, I just had ultrasound of both breasts and in may having ultrasound of left breast and bilateral mri in july of both breasts. If I have cancer again I will have lumpectomy again. I did not have radiation and I am not doing the hormone blocker. I have had hysterectomy and I am thin and have osteopenia and do not want osteoporosis. I also am having a customer of my bladder tomorrow because I get bladder infections too often now. I also had colonoscopy one year ago and it was neg.

REPLY
2 replies
timely | @timely | Feb 7 6:59pm

@deb23
@eku
@sedonadrsedonadreaming

Re: ILC

I had lumpectomy, stage 1B, 2ILC.

I have not had any MRI’s scheduled.
Am only having mammograms and ultrasound as that is what was recommended….

Re: MRI
As I understand it, one has to have a contrast IV with it.
Both of the contrast solutions have had black box warnings this week regarding the amount the stays in body and brain. There is a 3rd level
trial with results that are not supposed to be as bad as the other 2.

I am concerned that metastasis from ILC ends up in stomach, colon, urinary tract, or ovaries. As this is where Mets go with ILC. But, I can’t really worry about this…

So, I do not think that it matters if one gets a lumpectomy or mastectomy as errant cancer cells could be someplace with either.

Also, I do not know what should be the plan of attack with ILC and would appreciate input.

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Sue Ellen Murrey | @semurrey | Feb 7 12:35pm

Thanks for sharing and you're so on point with advocating for the best surveillance. My oncologist reluctantly agreed to my request for 6 month MRI after the first mammo post surgery which was a full year after ILC lumpectomy and radiation. I just don't understand why she was so difficult. She is at Dana Farber and I'm now wondering if it related to compliance.. insurance etc. Are oncologists dinged if they order MRI's. I am so discouraged and dread meeting with her again post MRI as if there is nothing remarkable she will probably not authorize further MRI's??? Do I reach out to MGH as they are in Boston too but I wanted to be a Dana Farber as they are a premier breast center. any thoughts!!??xoxo

REPLY
1 reply
rococo325 | @rococo325 | Feb 5 1:33pm
In reply to @sedonadreaming "Sue Ellen, My scenario is same as yours, but I don't want radiation. I also don't..." + (show)
@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 did not roll the dice and had double mastectomy. LobBC was early stage and multifocal in only left breast. I had believed for the most part in the onco and first surgeon, but to be brief it came
back twice in my arm pit (dodged being directly in a node) AND I had been told A LOT if "it's probably not BC. when I lived in Fl. 2013, -2019. I may have been cancer free in the earlier yrs of this had my cancer cell samples from the 1st surgery been analyzed by onco and surgeons in Fl
with a better understanding of for one Lobular BC. University oncologists and surgeons here in Duke BC Ctr. in NC said after I told them my journey, " we do not deal in "probablies". " after radiation in FL 2019 & after surgery for 2nd tumor (much smaller cuz I was on top of it, found it)this NC group at Duke Breast Cancer Ctr. surg: &Radiation 2022. KEY THING IS even after a dbl mastectomy, you still have breast tissue reaching to shoulder and arm pit area. so you have to check you arm pits deeply. Unfortunately, it did travel to metastasize already apparently what they thought in the MRI, bone scans in 2022 on my vertabrae#5 (left! side) was MLBC .but they only decided to biopsy what they thought was a benign bone island a few months ago because it was 15-20% larger. It is now 2cm. So 2nd opinions and you advocating abt. any suspicion & regular imaging--is a necessity.

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kayhaun | @kayhaun | Feb 5 7:52am
In reply to @kstar077 "Had 11mm 12:30 6cm from nipple ILC left breast cancer. Did not show up on mammo..." + (show)
@kstar077

Had 11mm 12:30 6cm from nipple ILC left breast cancer. Did not show up on mammo missed on ultra sound. I felt myself in left breast. Immediately did manmo .did not show up again. Had ultrasound with me pointing to rock feeling lump. Had core biopsy. Had mri which showed it perfectly. Had lumpectomy. Margins clear. Lymph nodes clear. No radiation. No chemo. My testing and blood did not warrant. No hormone blocker meds. 4% chance cancer comes back after having hormone blocker for five years and radiation. 8% chance coming back without radiation and hormone blocker meds for 5 years. 92% chance cancer not coming back . I am thin and have osteo penia. With hormone blocker i will probably get osteoporosis. Had hystectomy. 1 year prior to breast cancer So no hormones from ovaries. Mammo did not show ILC so having ultra sounds of breast in may. And mri bilateral in July 1 year out from last mri. Apparently mammo does not show cobweb ILC. Thank God I found my cancer myself. I felt it. I am going to have ultra sound and mri from now on. You have to be your own advocate .

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Amen sister!

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kstar077 | @kstar077 | Feb 2 9:03am
In reply to @semurrey "Thinking of you and totally understand - have you been diagnosed with ILC? I'm assuming you've..." + (show)
@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

Jump to this post

Had 11mm 12:30 6cm from nipple ILC left breast cancer. Did not show up on mammo missed on ultra sound. I felt myself in left breast. Immediately did manmo .did not show up again. Had ultrasound with me pointing to rock feeling lump. Had core biopsy. Had mri which showed it perfectly. Had lumpectomy. Margins clear. Lymph nodes clear. No radiation. No chemo. My testing and blood did not warrant. No hormone blocker meds. 4% chance cancer comes back after having hormone blocker for five years and radiation. 8% chance coming back without radiation and hormone blocker meds for 5 years. 92% chance cancer not coming back . I am thin and have osteo penia. With hormone blocker i will probably get osteoporosis. Had hystectomy. 1 year prior to breast cancer So no hormones from ovaries. Mammo did not show ILC so having ultra sounds of breast in may. And mri bilateral in July 1 year out from last mri. Apparently mammo does not show cobweb ILC. Thank God I found my cancer myself. I felt it. I am going to have ultra sound and mri from now on. You have to be your own advocate .

REPLY
1 reply
kstar077 | @kstar077 | Feb 1 11:40am

In fine print of release you sign to have mri of breast with gadolinium) It has warnings. But I have no choice to have mri with the dye because my IDC did not show up on mammo. The radiologist said the dye warning is for people that have an abnormal brain from multiple sclerosis. My brain so far is normal so I can have the mri with dye. Read up on side effects of the dye for yourself.

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Sue Ellen Murrey | @semurrey | Feb 1 8:40am
In reply to @kstar077 "Radiologist said dye from mri not good for people with multiple sclerosis. Their brains are already..." + (show)
@kstar077

Radiologist said dye from mri not good for people with multiple sclerosis. Their brains are already damaged. Mri ok for me because my brain is normal so far. Again IDC does not show on mammo. And was missed on ultrasound. I am doing the best I can to stay healthy and hopefully my cancer c will not come back.

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I understand your concern over the dye used in MRI but have they reported on whether the dye found in brain after many MRI's is damaging? My onco also told me about this and of course given your MS I understand where you are coming from but at this point I am very worried about scans missing further ILC...xoxo

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