Hi 

I have just been diagnosed with PLCIS too. I wondered which route you went down and how it has worked out for you?

thanks x

Hi Janine 

I have recently been diagnosed with invasive lobular cancer with pleomorphic LCIS.. about 2 cm..not visible in nodes ultrasound..but a reactive node on mri. Recent op they have removed lump and 4 lymphs. Partial reconstruction. Awaiting results. Should add.. had lcis 5 years ago.. simple lumpectomy. Advised its totally treatable.

I am glad you were able to have your surgery. I had my partial mastectomy for PLCIS in 2018. I had cancer before the pandemic which is a good thing as there are no surgeries being done for anything now at my hospital because of so many Covid-19 cases. I was able to have my mammogram last year which was normal, but no in-person visits, only over the phone. I had LCIS 10 years before the pleomorphic type was found. They did what was called a surgical biopsy but it was essentially a lumpectomy. I have learned since my recent surgery and radiation treatments that my half cousin has also has PLCIS and has had a similar treatment plan. We share one grandfather. I am wondering if there is a genetic factor? I mentioned it to my oncologist. My grandfather's biological mother (he was adopted) died in her 40s and her mother also died fairly young, but I don't know if breast cancer was the cause of their deaths. Makes me wonder, that's for sure. My cousin and I share a passion for genealogy and have both had DNA testing so that we were able to learn all this. I wish you well with your treatments. I am glad that breast cancer is mostly treatable now. I am doing well myself except I have chronic fatigue unrelated to my cancer. I may have had Covid-19 last year, a mild but lingering case of it. 

Thank you Amelia.  Yes I also think it is genetic. Stay safe and well. 

You're welcome. It's Amiela, not Amelia. Pronounced ah-mee-EL-uh  and it's the feminine form of Ammiel found in the Bible. Amelia is a nice name, however. Thank you for your "Stay safe and well" message. 

Hi LMary,

I was diagnoised with a mixed lobular carcinoma (T3, N1, close to 9cm) in July 2020:

(no stage given due to the complexity of the carcinoma)

1. Classic: ER +ve, HER-2 -ve

and

2. Pleomorphic: ER -ve, HER-2 3+ (this had spread to the lymph nodes under my arm)

Treatment Plan:

I went through 5 months of Chemo:

a) 4 sessions of A/C Chemo every 2 weeks

b) 12 sessions of Paxitaxol weekly

c) 18 sessions of Herceptin (immunotherapy) every 3 weeks (started at the same time as the Paxitaxol, due to complete in Sept2021)

Then had a masectomy and DIEP reconstruction in Jan2021, my lymphnodes were also removed due to the spread.

I recently completed 3 weeks (M-F) daily radiotherapy and started on Tamoxifen around the same time I started radiotherapy.

The PLC reacted well to the A/C and Paxitaxol chemo, the biopsy conducted following the surgery  showed complete pathological response (disappearance of all signs of cancer in response to treatment. This does not always mean the cancer has been cured).  I'm continuing with the Immunotherapy and am currently in discussions with my oncologist regarding which is the better hormone tablet route for me.

I hope my experience helps give you a bit of insight on what you could expect, but please bear in mind that my onocologist calls my case "complex" due to me present 2 very different cancers.