Lobular Breast Cancer: Let's share and support each other

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!

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.

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

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.

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.

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