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.

kstar077 | @kstar077 | Feb 8 10:38am
In reply to @semurrey "It is pretty discouraging that insurance dictates our surveillance. I pay $1000 a month for insurance..." + (show)
@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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1 reply
dlst | @dlst | Mar 10 7:24pm
In reply to @sedonadreaming "Sadly, I joined the ILC statistics on 12/27/23. Since meeting with the oncology surgeon and with..." + (show)
@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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2 replies
sedonadreaming | @sedonadreaming | Mar 10 9:43pm

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 | @sedonadreaming | Mar 10 10:12pm
In reply to @dlst "Thanks for your perspective and thought process. I was diagnosed with ILC almost the same day..." + (show)
@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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estebanf | @estebanf | May 8 9:17pm

New here concerned my daughter 41, was just diagnosed with invasive lobular carcinoma.. from biopsy taken couple days ago.. size 3 cm..preliminary say lymph nodes ok, told her calling it invasive because it’s broken into tissue.. seems like stage 2 now more testing begins. Has family three children, lives in Washington.. scared dad. She is too,
Anyone else have similar diagnosis and can share , treatment and or outcomes.
TIA

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2 replies
timely | @timely | May 8 11:16pm

Lumpectomy and radiation and Letrozole as past menopause.

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timely | @timely | May 8 11:26pm

@estebanf

Check out the Lobular Breast Cancer Alliance site for tons of information….

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kstar077 | @kstar077 | May 9 8:26am
In reply to @kstar077 "I believe insurance companies are a big business and they are not into conserving our lives...." + (show)
@kstar077

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.

Jump to this post

I had ILC left breast 12mm 12:30 6cm from nipple. It was undetectable with mammo that I had religiously every year along with ultrasound. I felt a lump a few months after my yearly mammo and ultrasound. Had a mammo and it did not show. Had ultra sound and did not show til I put my finger right on lump. It showed on mri but dye is bad for you. Insurance is letting me have ultrasounds every three months and mri once a year. I am not having mammos anymore because they did not show cancer. I believe if you insist with your doctor to have mri more often insurance will let you. I worry about the dye. I flush my body with saline and drink plenty of water and Gatorade to flush dy after. You have to insist on your care
Insurance will pay if you do.

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kstar077 | @kstar077 | May 9 8:34am
In reply to @dlst "Thanks for your perspective and thought process. I was diagnosed with ILC almost the same day..." + (show)
@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!

Jump to this post

You are going to have to do it all. Have all the testing. Pet scan. Mri. Genetic. Ultra sound. Lymph node. Radiation. Possibly masectomy depending on if it has spread into margins and lymph nodes. Get 2nd and third opinion after all your testing. Jump on this and do all you can to save yourself. Get going.

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engelwags | @engelwags | May 9 9:49am

Just had a left mastectomy after diagnosis with invasive lobular breast cancer. Pathology indicates carcinoma in one node. My oncologist says this scenario used to be considered Stage 2, but with the effectiveness of letrozole she doesn't think chemo or radiation is necessary. She did set up a consult with a radiation oncologist, just to be sure. I'm seeing him on Monday. Fingers are crossed!

Its scary and frustrating to have to make so many decisions when this is all so new.......we expect doctors to TELL us what to do rather than ask, us what we prefer, and that can be hard. Still, I've found that if I ask lots of questions, my doctors come up with some very good answers. I opted for reconstructive surgery, so we're going down that road (which is trickier than I was prepared for!) The key is - ask questions, stay calm, think positive, and be kind to yourself. It's important.
Good luck.......sending prayers to everyone in this frightening battle.

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