Hello,
To all of you who responded to "Newly diagnosed" ... I send a huge, "Way to go and keep going!"
You are absolutely correct in being your own advocate regarding Pleomorphic Invasive Lobular Carcinoma. Keep learning and fighting for yourself as I have since 2001.
I was diagnosed with Stage 3B PILC in May of 2001 and I am possibly one of the oldest surviving patients with this disease. I have mammograms and ultrasounds of breast lesions that I was concerned about since 1986 through 1995 - but physicians diagnosed me with "tramatic cysts" (though there had never been trauma and I could not get them to change the notes to reflect this." The areas just kept getting larger until I bumped my (R) chest on the end of a deck rail in Feb 2001 and it became painful and inflamed. I had ultrasounds that the sound head "bumped over" as the radiologist came in and performed the test himself...but said "dense breasts". Arggg.
It took until the end of May to go out of the Fredericksburg, VA area and to another surgeon farther north to get a biopsy. He told me that I did not need it and that I was over-worried. I insisted. When I did not hear from him in 10 days I called the office and was told to get there "now". He told me the PILC news and said that I needed a lumpectomy. I begged for a mastectomy because I had a sense that this was bad. He refused saying that "We don't perform mastectomies due to a 'bad feeling'". I ended up with a quadrantectomy (9:00-12:00 excision) and was sent home. A week later I went in for the drain removal and found that 100% of the tissue was PILC and that I needed a mastectomy the next week. I asked for a concurrent Left Mastectomy but the doc refused for the same reasons he stated before.
(A ton of things happened in the interim). After the mastectomy it was found that there were no clear margins even to the chest wall....it was extensive from my collar bone to my sternum to the mid ribs to my lateral right side.... huge though I was a small chested person.
I had radiation then the strongest chemotherapy beginning October 2001. I almost died two times during two courses of the chemo (administered two months apart because I had to recover each time) then it was found that I was severely allergic to the adriamycin and cytoxin. Chemo was changed and continued through the spring of 2002 with significant side effects but not at death's door. I hung on so tightly to life...with everything I had, because I was a single mom with an 11 year old boy whom I promised I would not leave. I was going to teach him to drive!
At that time the aromatase inhibitors were just being released on a limited basis and I qualified. It turns out that I was also severely allergic to those (Arimidex, Femara) as well as Tamoxifen. Once again I found myself hanging on for dear life (no exageration) until docs realized that I was so ill from the meds vs cancer.
I am telling this long story because there are so many challenges but YOU CAN MAKE IT when you dig deep into yourself and hang on - no matter what.
I was discharged by my oncologist in 2008 because "there is nothing I can offer you". I was stable with no recurrence in 5 years...THEN...
In 2019 I had a chest wall recurrence. I had surgery (and was again refused a left mastectomy by the surgeon. He said "We don't remove breasts because of a bad feeling...it is just dense tissue.") I had chest wall radiation again and was not followed by an oncologist because I could not tolerate the chemotherapy they had to offer - due to severe allergies. Once again I was told that they can only offer "traditional therapies" and would not offer any other alternative therapies. (The oncologist did offer me the best and said, "Good luck".
In 2021 during a 6 month follow-up and showed the UVA surgeon a lump in the (L) breast. He palpated it and insisted on a mammogram (even though they always caused extreme swelling and inflammation afterwards - a sometimes characteristic of invasive lobular carcinoma mammo side effects). I received a mammo report of "negative" but in December, six months later there was a second lump. I obtained the disc from the June mammo and was able to review it myself. It was stunning. Within one minute I was able to observe the first lump from June. Someone had not reviewed the mammo - the cancer was there in June. A year later the surgeon stated that he missed this...and asked for forgiveness...but by then, I had already gone to someone else.
In 2022 I had a left mastectomy followed, again, by radiation. Local oncology would not follow me because I could not tolerate what they had to offer and they would not deviate from "the norms". One doc said, "There is nothing I can do for you," and he wished me luck.
It is now October of 2025 and I am approx 25 years living with PILC. I have been diagnosed with Stage 4 mets to the bones in more than 15 areas. Yesterday I completed the second round of radiation to slow the growth of some very large lesions...but do not feel bad for me because
#1. I do not look or feel ill! You would never know that I have cancer if you did not read this or know me! I keep telling them that there must be a mistake.
#2. It turns out that a new oncologist who did take me as a patient in May 2023 said that the 6 month PET scan findings in my C-spine (neck) were "Degenerative...You're just getting old." She said this in November 2023 and May 2024. In October I was told that it is metastasis. It is throughout my spine, pelvis and hips. Crazy, huh?...but I do not have any real pain - even before the radiation.
#3. I continue to do other things to promote my health because one HAS to fight for herself!
Be positive, keep exercising, keep researching, keep that diet healthy, do what you have to do to hold onto this life you love, keep positive, support each other, support the people who love you.

My Radiation Oncologist at VCU is the BEST person both professionally and as a human.

My wish: That someone, somewhere was interested in how I can still be here - with PILC - after 25 (or more) years. No medical person whom I have delt with has the time to ask the questions that might help someone else...(like you).
So, as possibly one of the longest surviving people with PILC, I say that I pray for all of you who are also diagnosed.
YOU are STRONG, YOU CAN DO THIS... And though I do not know you, I love you!