Invasive lobular cancer and treatment choices

I was 71 when I had a double mastectomy for ILC (it took 6 months to get clear enough margins because it didn’t show on the mammograms and ultrasounds I’d had for decades). As a large breasted woman, I was immediately relieved not to have breasts. While it’s not for everyone, I am fine being flat (stay away from princess seams) though it really rankles me that I had to make the decisions at all. Proper imaging (MRIs) would have found it years before it metastasized into my lymph nodes. Now, I will have it for the rest of my life.

I had ILC. 12mm. Lumpectomy. Last Sept. Had hysterectomy a year before that because I had endometrial cancer. I am also thin but otherwise healthy except two years ago diagnosed with RA. I control it with methetrexate and plquenil. Because of the testing I have had there is a 92% chance I will not get my BC back so I did not have radiation and opted not to do the hormone blocker. Because I have osteopinia and the blocker would throw me into osteoporosis. I lift light weights and walk and use elyptical 5 days a week. My mammos every year with ultrasound did not show my breast cancer. I found the lump myself. It showed up with mri with dye. I am having only mris now and ultra sounds but am having a hydration iv to clear the gadioleum dye from my system. My hair thinned but taking neutrofol everyday. We will see. I just. Keep moving and checking my self. Good luck to you.

Thanks, Denise, it does help. My surgeon is male, but that is basically what he answered when I asked him what his recommendation would be for his wife or daughter. Since I didn't have clear margins, the oncologist recommended a second lumpectomy plus radiation, but I'm not quite as confident of his advice, even though it is statistically the same outcome. But the oncologist also didn't know what PLCIS (pleomorphic LCIS) was and that it required a further surgery if the margins weren't clear. He had to look it up, which is OK with me, since it is a rare type of breast cancer, but my surgeon knew exactly what it was and what was required, so I trust his opinion. Yes, I have been reflecting on the emotional and physical toll of a mastectomy. It's more the emotional that concerns me, since physically it will eventually heal. I'm 68 and still working at a job I love. My husband is very supportive, no matter what I chose. I don't plan to get reconstructive surgery unless I just can't live with the results. I thought I would give it six months to a year to see how it goes. I don't really want more surgeries. But that's a different topic. I really , really appreciate your comments! I pray for good healing for you, both physically and emotionally. - DSLT (Deb)

I was 71 when I had a double mastectomy for ILC (it took 6 months to get clear enough margins because it didn’t show on the mammograms and ultrasounds I’d had for decades). As a large breasted woman, I was immediately relieved not to have breasts. While it’s not for everyone, I am fine being flat (stay away from princess seams) though it really rankles me that I had to make the decisions at all. Proper imaging (MRIs) would have found it years before it metastasized into my lymph nodes. Now, I will have it for the rest of my life.

My experience with ILC is that I had a lumpectomy, but the margins were not clear , so I need a second surgery. However, the surgeon is giving me a choice between a second lumpectomy plus radiation therapy OR a mastectomy. The long-term survival rates are identical (no statistical significance between them.) The surgeon advises a mastectomy. The oncologist advises the lumpectomy plus radiation. For those who had a mastectomy, even though you might have had a lumpectomy plus radiation, how are you feeling about it now? Do you regret it or are you glad you did it? Thanks for any advice! (I will still need Anastrozole with either surgery, but no chemo with either, due to the small size of the tumor - 2 mm).

I asked my surgeon what she would do in my situation with unclear margins. She said she would get the mastectomy. That was my next move. If my margins were clear I would have kept to the lumpectomy and radiation. Invasive lobular is very sneaky. They found my 3rd tumor by luck with ultrasound. The mammogram or MRI never caught it. It’s been a week since the mastectomy. I have one drain out and one to go. I’m healing but is a much harder surgery emotionally and physically than the lumpectomy was for me. I hope this helps.

Denisesjourney,
Thank you for replying so quickly. You are the first person I have met that seems to have the same situation I have had. Mine is also invasive lobular estrogen positive. What made you choose the mastectomy over the lumpectomy the second time? I know it's still early, but how do you feel about your choice? I will also not need chemo, nor radiation if I get a mastectomy (which is one reason I am leaning that way, also just to know that the cancer is gone. This kind is sneaky, and I'm not convinced they will detect it by mammogram or MRI at an early stage if it re-occurs - I think I just got lucky this time). I will have to take a hormone blocker - we'll see how it goes. Hope your recovery goes well!

Your situation sounds like mine. I have invasive lobular estrogen positive with 3small tumors that they found. 1-31-24 I had a lumpectomy with 3 lying nodes removed. My nodes were great but my margins were not. My surgeon suggested a left breast mastectomy. On 2-23-24 I had the mastectomy. My surgeon said my cancer is gone so is my breast. I meet with an oncologist Monday. Never have met before. I’m told I will need a horrible blocker. I ‘m not a fan! My surgeon said I will not need radiation or chemo. Hallelujah! Now onto the next step. I’m hoping to get reconstructive surgery and a lift on the other breast in the near future. Keep in touch. If you have any questions let me know.

My experience with ILC is that I had a lumpectomy, but the margins were not clear , so I need a second surgery. However, the surgeon is giving me a choice between a second lumpectomy plus radiation therapy OR a mastectomy. The long-term survival rates are identical (no statistical significance between them.) The surgeon advises a mastectomy. The oncologist advises the lumpectomy plus radiation. For those who had a mastectomy, even though you might have had a lumpectomy plus radiation, how are you feeling about it now? Do you regret it or are you glad you did it? Thanks for any advice! (I will still need Anastrozole with either surgery, but no chemo with either, due to the small size of the tumor - 2 mm).