Newly diagnosed with invasive pleomorphic lobular cancer

Hello Maggiejinx:
I am pleomorphic invasive lobular carcinoma, triple negative. Dx in May 2022 as grade 3B. My oncologist noted in the report at the time of diagnosis that she believed I had more cancer than could be determined clinically or via imaging because it was ILC. Had neoadjuvant chemo which did very, very little to shrink the tumor. Single right-side mastectomy in Nov. 2022. Clear margins and 5 of 5 lymph nodes were positive. 33 sessions of radiation with booster after mastectomy. Capecitabine after surgery until April 2024.
In April 2024, pleomorphic invasive lobular carcinoma found in left breast. Also in a small node on my collarbone. Several tumors found in my lungs. Cancer in my retroperitoneum. The cancer was on the outside of the ureters, squeezing them closed. That caused 3B chronic kidney disease. I now have metal stents in both ureters as a result.
I tried Enhertu (for HER2-low metastatic cancer) for 3 months but the cancer grew. Now I am on Trodelvy (sacituzumab govitecan or "SG") for metastatic triple negative cancer. The SG is the only chemo that has reduced/paused the cancer.
If I knew then what I know now, I would have begged for SG at the time of diagnosis.
The challenge with ILC is how it spreads. Due to the web-like or thread-like nature of it, it is difficult to image (PET, CT, etc.) until the threads meet up and form a tumor. Then it's too late. This is info I have found by reading medical journal articles. There isn't any imaging (MRI, PET, CT, etc.) that does a good job to discern ILC.
ILC triple negative (what I have, I don't know your ER, PR or HER-2 status) is a rare combo, less that 1% of all breast cancers. ILC with hormone/HER2 expression is only a bit more common.
Based on my experience, I urge you to consider all potential treatments. Become very educated. Have a frank discussion with your oncologist. For more info, you can google info about ILC and your hormone and HER2 status. It was helpful to me to read medical journal articles, all free online via your search engine.
Finally, there are a few clinical trials for FAPi. FAPi is Fibroblast Activation Protein inhibitor. It is a type of tracer being studied for hard-to-image cancers, like ILC. The tracer now used for PET-CT imaging is FDG, which is glucose based. But the glucose tracer does not 'stick' to ILC cells so the cancer doesn't show up on imaging. Instead, the FAPi tracer sticks to the fibroblasts on the ILC and other hard-to-image cancer cells giving a good picture of the cancer's location.
To my knowledge there are FAPi clinical trials at UCLA, UCSF and Mayo. There may be more locations, those are merely the clinical trials I know of. Not all accept breast cancer patients at present. Search online for more info. If you get into a FAPi trial, at least you'll have a better idea of where the cancer is located, leading to more effective treatment.
Also you may wish to check into ASCENT05.com, a trial for patients at high risk of cancer spreading after neo- adjuvant chemo and recent mastectomy.
If I can clarify anything or answer questions, please let me know. Here's wishing you the very best!

Wow. That is a lot to take in. Thank you so much for the information!! Did you have a mastectomy on the left side when they found it? I am er/pr positive and HER2 negative. I will definitely start doing my research!! I am so sorry you have already gone through so much. I hope we can keep in touch and I wish you all the best as you keep fighting.

Hello Maggiejinx:
Yes, it is a lot to take in. The good news is that with positive hormone receptors, you have more possibilities for treatment. That is super!
No mastectomy on the left as by that time I was metastatic and insurance would not cover the surgery as the damage had already been done.
Likewise stay in touch and I super hope that all goes well for you!
Olivia7850

Thank you so much for getting back to me and your hopeful response. I pray you continue to get well!!

I am sorry to hear that your cancer got worse. It blows my mind that a patient has to become more knowledgeable than the oncologist ! I find your comments very informative. It wasn’t until I had a recurrence on my chest wall 2 weeks after my single mastectomy that I realized how much I had to take the situation into my own hands. If I hadn’t educated myself better than the oncologist I would be planning my funeral. It is very interesting to me that ILC is thread like and difficult to see in imaging as my tumor ( which was changed with 6 months of chemo) could no longer be seen on MRI or ultrasound. As a result, the resection was done with bad margins superior, inferior, and posterior. I had to lobby two tumor boards for more surgery. There was 1.2 cm more residue. I can’t believe I had to beg for this. I am in Canada. The doctors in Alberta Canada told me to skip surgery and just get radiation. I had to leave my home province. The motto of the story is educate yourself. I lobbied for a mastectomy on the other side which reduces BC chances to 5% which should have been done in the first place. Thanks for info on the tracer. I will see if this is possible for upcoming MRI to make sure tings are clear under my new breast implants. Olivia are you taking a CDK. I took verzenio which reduces the chance of my cancer returning by an absolute value of 7% or a 33% reduction in recurrence. It might help. Apparently it is the biggest breakthrough in BC in 20 years. Also listen to the podcast Oncology Today with Dr Love. And Dr. Thomas Seyfreid and Maggie and Brad Jones who advocate a keto diet to control cancer (ultimate health podcast with Jesse Chappus). Thank you good luck with everything Olivia.

Hello Worried:
Excellent work on the lobbying for the necessary surgery. Impressive and amazing.
No, I am not taking a CDK as I am triple negative--no hormone receptors to make me eligible for CDK. Thank you for the suggestion as it's a good one, just doesn't work for my cancer.
In the US, FAPi is only available via a clinical trial, but the rules on these matters may be different in Canada. There are quite a few medical journal research articles published in the last few years re: FAPi, all supportive of FAPi use as the clinical trial results are uniformly excellent. There have been times that I have printed a copy of the medical journal article abstract (the summary at the beginning of the article) and given it to my oncologist.
Thank you also for the info on the podcasts. Much appreciated.
You are right about educating yourself. That's the way to go. You said it best!
Worried, here's wishing you the best and all good luck.
Olivia7850
PS--Love Canadians! My grandmother was from the tiny town of Churchbridge, Saskatchewan.

Hello maggiejinx, I was diagnosed with stage 1 grade 3 ER+Her2- invasive pleomorphic lobular 2 years ago. I had a unilateral mastectomy, chemo, and have been taking Tamoxifen. I will be switching to Letrozole now that I am believed to be menopausal, and I am happy about that because it is better at preventing recurrence. I also had clear margins and a small amount of disease in 1 of 7 nodes that were removed. This is a scary type of breast cancer, but I try not to obsess about that. I took a Signatera test at the 1-year mark, and there was no sign of disease. That has given me a lot of peace of mind. I try to see the glass as half full, so the good that has come from this experience is that I started strength training, practicing daily meditation, eating a plant-based diet, made a career change, and have learned not to take all the good in my life for granted. I don't sweat the small stuff anymore. All of these things have made my life better, and now that my hair has grown back, I feel pretty normal again.

Thank you so very much for sharing your story with me!! It really gives me hope and is so helpful to have some knowledge of what my treatment might be like. It sounds like your cancer is (was) practically identical to mine. I am not in menopause yet but I haven’t had a period since April so I’m making progress toward that. Did they ever suggest you have a mastectomy on the other side? I am hoping to avoid that only because the one side was so painful. How any rounds of chemo did you have? Was it through an IV? I am so happy for you that the cancer is gone and I love the lifestyle changes you have adopted. I definitely have goals of things that I would like to change and I feel like in the end I’ll be healthier than before. I feel like this is a wake up call to make a fresh start in a lot of ways. Please keep in touch and thank you so much again for taking the time to reply to me!! I wish you all the best!!

Yes, the cancer that I had sounds very similar to yours, which is why your post caught my eye. I haven't met anyone else with the pleomorphic type. I wasn't in menopause either, but the treatment has changed that. My grade 3 tumor, combined with a higher onco score, is why I benefited from chemo (which was 4 rounds). I had a port installed because my veins are small. It made the whole ordeal so much easier. The first surgeon I went to recommended a double mastectomy, and the second one (who ended up performing the surgery) did not because my genetic testing came back clean. She reasoned that the other side was healthy, and it is best not to have a major surgery on a healthy organ. It doubles the chances of complications, and it wouldn't change my survival odds. Plus, I feel like I am being closely monitored because I get an MRI on both sides every year, with a mammogram in between. That wouldn't be happening if I had a double done. I wish you all the best, and I would be interested to hear if your oncologist recommends the same treatment that I have had.

I will definitely let you know what my treatment plan is! My oncotype was low, it was 11 but my sister’s friend who is a nurse and breast cancer navigator believes that they will still recommend chemo as a preventative because of the type of cancer it is. I don’t want chemo but at the same time I’m afraid of it spreading or recurring. It is definitely is hard to find information or support groups for the pleomorphic type. Everything seems to be geared to invasive lobular only. Not that I would wish this on anyone but it’s nice to talk with someone else who had this too.