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.

@dlst

Thanks for your perspective and thought process. I was diagnosed with ILC almost the same day as you: 12/26/23. I had a lumpectomy, but margins were not clear and I have pleomorphic LCIS, so they must be clear. I was in shock when I found out that I need another surgery - either a second lumpectomy plus radiation or a mastectomy (both requiring hormone therapy.) I still have not made up my mind. I am waiting for genetic testing results and PET scan, plus getting a second opinion. I'm just not sure what to do. I am TOTALLY not prepared to make a decision on a topic I know next to nothing about (compared to all my docs) that includes so many uncertainties, yet will affect me for the rest of my life. Previously when I was sick doctors told me what to do and I did it. That's why they study so many years, so they can advise you. I feel that it's not fair that I have to make this decision. I literally don't know what to do, and I've been stuck here for nearly a month, still can't make up my mind. Any and all help is appreciated. Thanks!

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My thoughts are with you while you mull over your myriad of choices. We make the best decisions we can, given the information available.

In order to make my decision, I have done the following:

*I deliberately cruised past posts that talk about chemo/radiation/stage IV/Mets because they were not helpful to me making my informed decision, they simply do not match my current known experience. I hope that doesn't sound callus. It is not meant to be. Posts that don't pertain to my scenario still held the possibility of swaying my decision based on emotion, rather than rationale. But, that's just the way I approached it.

*I have watched many YouTube talks with oncology/surgeons who do this work for a living, based on the most current ILC information available. There is a wealth of educational information regarding ILC and our surgical options on the Lobular Breast Cancer FB page.

* I knew that I didn't want radiation (if at all possible, knowing it's not officially off the table) possibly affecting my body in a negative way when it came to reconstruction options and while I realize immediate effects of radiation aren't probably all that bad, it's the long-term ones you can't see up front that I want to avoid. I wanted to eliminate the lumpectomy/re-excision likelihood with ILC.

*I knew I didn't want to go flat.

Those were my primary drivers.

I think I changed my decision about half a dozen times while busy gathering my supportive reasoning and think that's pretty usual, especially given that we are under time constraints to provide an answer in the initial stage of this thing.

Best of luck to you while you come to your decision.

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My ultimate decision was to do an SMX with immediate DIEP flap reconstruction, going in on 3/28. I am not thrilled with keeping the "unaffected" one, but also cannot argue with the fact that we all could have cancer anywhere in our body and not know it, but can't remove all of our organs as a precaution. I do not carry any known genetic mutations, so single, it is. That means a couple touch-ups to lift/fill a bit on the native breast, but I'm all in. I just feel better ridding the right breast of as much tissue as possible (tissue sparing, but not nipple) even if only for a couple % improved risk. Hope this all makes sense and is where I have found my peace.

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@sedonadreaming

Sadly, I joined the ILC statistics on 12/27/23. Since meeting with the oncology surgeon and with the results of MRI, node ultrasound, genetic breast marker panel, I am finding myself less and less confident that I would ever find peace with a lumpectomy and combine that with my aversion to radiation, I am left exploring double mastectomy (because I am not doing one and then finding out later that I need to do the other).

Why is this so darn hard? I had convinced myself to just suck it up and do the lumpectomy because it's easier recovery and "radiation should be pretty easy"...easy to say for someone who is not having to contemplate it. The surgeon said lumpectomy would absolutely be an option and that if I decided anything "crazy" he would tell me, but supports my decision. What is "crazy"?

Today I've spun 180 degrees. My gut just keeps telling me that the correct move is just to free myself of the most breast tissue I can, even though it's not a guarantee because to do less would never buy me peace of mind.

Drivers for this radical change in thinking stem from not wanting to ever go through this again, if at all possible, fear that ILC will affect my left breast, if it hasn't already (because why would I believe anything the imaging that missed it in the right for so many years states), fear of doing lumpectomy/radiation and suffering long-term effects from the treatment, another missed tumor that metastasizes to far off organs like the GI tract or peritoneum, distrust that despite post-lumpectomy treatment, that there was missed cancer left lurking, considering what my state of health may be in 5-10 years when I might face mastectomy if there's a recurrence (no way to know, but it did enter my mind). Pros for lumpectomy, in my mind, just amount to less recovery time and less life disruption at this moment in time. The cons seem to outweigh the pros for me, when I think it through, despite the relatively non-statistical difference in life expectancy/recurrence from one surgery to the other (based on the small groups that have been studied as compared to other types of breast cancer).

As I was busy convincing myself of my newfound decision to lock onto bilateral mastectomy with immediate reconstruction (if even a possibility for me), I was flooded with a heavy dose of guilt...guilt for considering removal of the both breasts, guilt for considering symmetry in the equation since I don't want to go flat...how vain of me...guilt at the though of the inconvenience it would cause my husband (though he wouldn't agree) and his work routines, guilt for the thought of creating financial stress for my decision (cost of life in my mind vs money cost), etc, etc. Am I special in my level of guilt I feel for any decision I make or is this a completely normal phenomenon? Pros to mastectomy for me include a bigger peace-of-mind that I did everything I could up front to get rid of the source or potential source, possibility of maintaining some sense of symmetry, get it done and move on. Cons could be a plethora of repeated surgery and possible complications/infection, downtime from work, longer recovery.

So, with the cons more than the pros for my decision of mastectomy, why does it still feel like the right choice? I just don't see either choice as having a pro list that would outweigh the cons in the end.

Talk to me! I know some of you have been here.

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Thanks for your perspective and thought process. I was diagnosed with ILC almost the same day as you: 12/26/23. I had a lumpectomy, but margins were not clear and I have pleomorphic LCIS, so they must be clear. I was in shock when I found out that I need another surgery - either a second lumpectomy plus radiation or a mastectomy (both requiring hormone therapy.) I still have not made up my mind. I am waiting for genetic testing results and PET scan, plus getting a second opinion. I'm just not sure what to do. I am TOTALLY not prepared to make a decision on a topic I know next to nothing about (compared to all my docs) that includes so many uncertainties, yet will affect me for the rest of my life. Previously when I was sick doctors told me what to do and I did it. That's why they study so many years, so they can advise you. I feel that it's not fair that I have to make this decision. I literally don't know what to do, and I've been stuck here for nearly a month, still can't make up my mind. Any and all help is appreciated. Thanks!

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@semurrey

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

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I believe insurance companies are a big business and they are not into conserving our lives. They do not cover certain things because they do not want to keep us alive indefinitely because it cost them. Mri is more expensive for them to pay so they only let me have it once a year. Even though mri detected my cancer and mammo did not. Sad but it is the way insurance companies run. It is about money not patient well being.

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@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

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@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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@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

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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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@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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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

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@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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