Recurrent Pleomorphic ILC

Claire,

yes, that is how I read it....that cancer can "mutate" to feed on/survive on whatever it is we are taking, and when we take that away from it, it can start to die off.
They've shown some of this is possible in bacterial infection/drug resistance.

I'm not sure specifically which article you are looking at since I posted so many links

Nash, maybe your lymph nodes were trying to fight the cancer, so they were swollen...like fighting an infection our nodes can get tender and enlarged.

SO good to hear the nodes are clean. Interesting on "tangled in scar tissue".....

i have to say (and I'm talking out of fear, ignorance and out of my a$$) but sometimes I wonder ...how skilled the surgeon is and did they possibly leave something behind that could have allowed a local recurrence. That it may not be that our cancer is aggressive, but that the doctor was not skilled enough to remove it all from the start.

Great Nash! Node negative. Excellent. My margins were close also on initial lumpectomy (.3mm) so they went back in and took out more. That second path was clear other than extensive LCIS. Nothing invasive. Did you get a BMX or just one side?

Great news on the negative nodes Nash!! I also think it sounds very possible yours is a case of rogue cancer cells being left in your original tumor site (or at least that's what I'd tell myself if I were you!)

p.s. I'm thrilled you didn't need an ALND. I hope everyone is able to avoid that surgery if at all possible!

Nash - I'm glad that you're doing well with the post op recovery! Your attitude on a second go around is inspirational. I hope you receive additional good news June 2nd!

hello again Nash,

I just caught up on your posts as I wanted to check up on you. Glad the surgery is behind you but I know the waiting on pathos nerve wracking.

When I read about your first diagnosis and your Mom dying it struck a chord in me. When I was diagnosed my Mom was dying from metastatic BC,and I opted out of reconstruction and went directly ito mastectomies ( only option) & into 16 mo. of treatment.i had a young one at home too.. (Waited 3 years until the smoke settled to have delayed recon bilaterally)

Wishing you all the best at kicking this beast to the curb, once and for all!

Warmly,

Marcia

Hi ladies -

I remember several of you from my extensive visits to this site back in 2008/2009 when I was in the early vortex of ILC fun...

I'm just popping in as I have a follow-up appointment next week and it's been a while since I've been in the trenches with the ILC ladies. Thought I'd see what new terrors I should ask about.

My oncologist is very much in the camp of "Yes, ILC and IDC are different, but in terms of treatment and where they might spread, they're not."

Nancy - I had been aware of your recurrence, but am sad to hear about your need to learn about a new type of cancer. I hope your recent surgery was successful and keeps it at bay for a long time.

Nash - I am HORRIFIED at your recurrence while also admiring your matter-of-fact approach to its treatment. Never thought about the possibility about a surgery/tamoxifen/radiation fail. I will say that I, too, chose a "less is more" approach back when I was diagnosed, specifically because I thought to myself: what would make me angrier? If I had the big surgery - bilateral with immediate reconstruction - and then it came back anyway, because the original tumor was high up in an area where there didn't even seem to be breast tissue? Or if I went with the smaller surgery and radiation, which allegedly has the same long-term survival rates? I decided I'd be angrier if I went big and it came back.

So far, nothing of interest has been documented since my initial diagnosis and treatment. I've been less-than-great about follow-up - I end up going about every nine months to thirteen months rather than every six months, but there's nothing in my bloodwork or in my mammograms that we're following. I had a really annoying detour into an insurance plan last year for which my oncologist was considered out of network. She's with the largest oncology practice in North Texas, so I put off my follow-up and waited to switch plans. My oncologist has always said that she believes that if anything does happen, it'll be a recurrence in about 10 or 15 years that will end up being a "condition" to be "managed."

I'm still Tamoxified, as studies have shown that it can help for up to 10 years. Still premenopausally whipping up menstrual tsunamis about every 35 - 40 days at 52. My original ER+ was very, very high - but the idea that Tamoxifen might somehow still be providing illegal doses of estrogen-like substances to globules of ILC evil we missed with surgery and radiation - !!! I didn't have great margins, but great margins weren't really possible due to the tumor being smushed between a thin layer of fat on my skin surface and the chest wall. One of the margins was close, and of course the team all felt that the radiation would "clean that up." Sounds ominous now.

I probably shouldn't be posting - today, I look like almost seven years of treatment success, but in the next month or so I'll have a mammogram, bloodwork, a colonoscopy and possibly even a small suspicious mole removed and the story could take a turn down a dark, scary road...

It's great to see some of my old ILC buddies still alive and kicking and digging up research and being angry and fighting the beast.

I'm going to read some of the reports Wallycat posted so I can annoy my oncologist with new questions.

Coleen

Hey Nash...I was initially Her 2 equivocal also and then retested and was negative. Does anyone know if this means that I'm on the brink of negative/positive?

So your nodes were clear? What is 7/9 Nottingham?

I was doing a google search for Lobular related news and this PILC news popped up from last month. I'm not sure if this has been covered under this thread, but if not, here's the news link and contact info for the researchers.

News published April 23, 2015: AACR 2015: Study Identifies a Frequent Genomic Alteration in Pleomorphic Invasive Lobular Carcinoma

Excerpt: Alterations were found in the ERBB2 gene in lobular breast cancers that recur after initial treatment. The ERBB2 gene directs the cancer cell to make the HER2 protein, which is routinely tested for using standard pathologic techniques.
Investigators wanted to define the relationship of ERBB2 alterations in the pleomorphic form of the disease.
"Figuring out specific differences that are not visible under the microscope allows us to intervene with more appropriate and potentially life-saving therapy. With genomic sequencing detecting ERBB2 alterations in this form of cancer, we have an opportunity to identify anticancer therapies that would specifically target that abnormality, and that would otherwise not be given to those patients who could benefit", said Lead author, Kim M. Hirshfield.

Researchers from the study:
1. Kim M. Hirshfield, MD, PhD, Breast Medical Oncologist at the Cancer Institute, and Professor of Medicine at Rutgers Robert Wood Johnson Medical School.

2. Lorna Rodriguez, MD, PhD, Director of the Precision Medicine Initiative at the Cancer Institute, and Professor of Obstetrics, Gynecology, and Reproductive Sciences at Robert Wood Johnson Medical School.

3. Shridar Ganesan, MD, PhD, Director for Translational Science at the Cancer Institute, and Professor of Medicine and Pharmacology at Robert Wood Johnson Medical School.

If anything PILC related pops up from the ongoing annual ASCO conference in Chicago, I'll add it to this thread.

Nothing to add except I'm thinking about you ladies and wishing you well on this journey we hope to never take..again.