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Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: Nov 12 5:54am | Replies (395)Comment receiving replies
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.
Replies to "Sadly, I joined the ILC statistics on 12/27/23. Since meeting with the oncology surgeon and with..."
Regarding your aversion to radiation, my question is whether you have investigated the possibility of proton radiation. I have ILC, I had a lumpectomy , and spoke to my radiation oncologist. The photon oncologist recommended 4 to 5 weeks of daily radiation. I then scheduled an appointment with a proton radiation oncologist who suggested that two weeks of radiation was all that was needed. I elected to do that. I also used Mepitel film to cut down on any potential radiation dermatitis. Radiation was the easiest part of this journey. I also elected to do the radiation because I Wasn’t sure if I would be able to handle the aromatase inhibitors for a number of different personal reasons. I ultimately decided not to use the AI and having the radiation cut down my risk of recurrence by the same 50% that aromatase inhibitors would do. I hope this helps.
My cancer was invasive lobular, HER2 positive, hormone negative. My oncologist told me that women are happy -with their decision once they make it. I'm not so sure. I opted for a single mastectomy and reconstruction. I re-thought this decision occasionally but once everything was done, I wondered If I really needed the reconstruction. I did not have the option of a lumpectomy though. I was 75 when I had to make my decision. That was 2 years ago. We all have decisions to make everyday. Think about where you are in your live. Once you make your decision, embrace it as the best one you could make.
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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First post for me tho dx’d a year ago earlier this month with ER + ILC stage 1 in left breast. BC in my family including my sister had all been ductal.I opted for double mastectomy with reconstruction for all the quality of life reasons you are articulating and NO regrets, period! Did lots and lots of research and reading as part of my decision making. My surgery was end of March, coordinated with the plastic surgeon to put in the expanders. Early catch confirmed by pathology and sentinel lymph nodes clear, so thankfully no chemo. Expanders out and implants in—small as never was very busty—end of August. Might have “gone flat” but wanted to have a bit of shape and glad to have done so. No tattooing for me tho. Healed with no issues and back to normal. Just turned 73. Hubby and I celebrated 50th in September and he’s been great thru this. He was dx’d with prostate cancer the week after I got my dx and had 10 weeks of daily radiation treatment that was far more challenging than either of us anticipated, but with a great outcome thus far. Initially on Anastrozole pre and post March surgery but in the Fall decided I did not like the way it was making me feel and took myself off, for the same quality of life reasons that led me to the double: If this sneaky cancer comes back, I will deal with that reality then with no regrets about decision to live my life now! Oncologist not crazy about my decision on the AI but my surgeon supported it from get-go. Both female docs BTW. I have a f/u in person with my Onco tomorrow as part of standard f/u 3-4 times/ year protocol. Annual follow-ups with both surgeons, and every other year MRIs starting in 2025 to monitor the implants of all things. Had I been even 20 years younger, I may have chosen differently but for me in my 70’s this was and is the best for me.
Wishing you all the best as you process thru what ultimately is a unique-to-you decision.