Hello, I am so sorry to hear this. I was diagnosed in June 25 with lobular , had a lumpectomy and just waiting for radiotherapy. I am taking tamoxifen. Today I read a letter on my nhs record that stated it is pleomorphic, no one has ever mentioned this to me before. So like you really concerned and worried xx
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Hi may I ask how old you are? I got diagnosed with pleomorphic lobular carcinoma in dec 2024 at age 37
I had mastectomy and reconstruction feb 2025, followed by auxiliary node clearance march 2025, then my implant rejected they tried to save it at my request in July, then further rejection leading to implant removal September 2025. I had 12 paclitaxel. 4 e.c 15 radiotherapy that finished Christmas Eve 2025. I am currently on letrozole, abemaciclib and goserelin. In September/October I will have second mastectomy after thatās healed I will have a hysterectomy. As I also have palb2 gene defect
Stage 2 32mm tumour with 5/33 nodes positive. I canāt seem to get any straight answers from my oncologist and Iām aware how rare plc is but Iām finding it difficult to find anyone my age thatās had/has it. Iām hoping to be able to speak to people on here that may actually know more about pleomorphic because I feel like my doctor doesnāt
Sending strength and love to everyone going through this nightmare and has been through it 
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Hi @plc_under_40 - good to hear from you. Iām 54 and was diagnosed last Oct with PLC 37mm, grade 2 but treated as grade 3, tumour with 2 out of 10 lymph nodes positive. Highly ER/PR positive and HER2 negative. Mastectomy and targeted node dissection. Now had 4 EC and on dose 3 of 12 weekly Paclitaxel. Due 15 rounds of radiotherapy followed by letrozole, biophosphates and Ribociclib. No- one told me much either just that it was a sub type of lobular. I did my own research and asked more questions but there is not much info out there. All I know that it is rare and more aggressive than classic lobular. More prolific and more likely to reoccur earlier than classic lobular. Mine is being treated with everything as it is higher risk. Oncologist thought chemo maybe more effective with pleomorphic as it divides faster and usually classic doesnāt respond that well as slower growing. To start I was a mess but feel calmer now. I do think about the higher risk of reoccurrence and the surveillance as lobular is difficult to spot on mammograms and ultrasounds- Iām going to try to push for MRI. How are you doing now? Sx
Hi
I know its long time since you wrote this but I wonder did choice did you make?
Same diagnosis Oncotype 31.
Thank you
Im 44, premenopausal, diagnoised with stage 3 grade 2 pleomorphic lobular on Feb 4th 2026. I was never told it is pleomorphic, i read it on a copy of my surgery results!
Had a bi lateral mastectomy, 12cm cancer in left and 4 mm in right. 10 lymph nodes removed during surgery, all 10 positive and a big spread around them, surgeon said no to going back to remove more nodes. Starting 4 AC and 4 Paxitaxel in 3 weeks time. Radio after. Trying to find more ladies who have/had pleomorphic or even lobular who are going through a similar treatment.
How are u doing now?
S
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Hi lovely I donāt understand why they would leave your other nodes I feel that is very risky and if I was you I would want a second opinion
my first biopsy was 2/4 node positive then 3/29 positive total 5/33 so nowhere near as many as yours. My surgeons attitude to the 2/4 was lets get them all gone to keep you safe
I aM doing well on the medications Iām on still waiting surgeries as preventative and unfortunately just got diagnosed with osteoporosis but all things considered Iām good xx
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Hi sharync sorry itās taken me so long to reply my life is chaos. They donāt tell us enough about it because they donāt know themselves which tbh scares me Iāve read every bit of information I can find on it even the few studies that have been done. We just have to hope for the best I think. Hopefully we will be ok
Lots of strength and love sent your way
Forgot to mention they never told me mine was pleomorphic I also found out by reading my paperwork
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Hi there - thank you for your reply.
Do You have the names Of Studies I could read? Quite a lot of the few there are are old so my oncologist said they are outdated Now and treatments That we get - mainly hormone and Ribociclib will Be very effective ā¦.
But they are Still still ductal treatments.
Take care and sending 
I donāt know the names off them Iām Sorry I just googled and let changing the wording
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Hello, another ILC person here. Not sure about pleomorphic but mine is HER2 positive which Iām gathering in itself is rare and associated with pleomorphic lobular, so I guess itās possible. My treatment is neo adjuvant chemo (EC then Docetaxel) with HER2 immune therapy, then surgery expected in the summer. Iām about halfway through chemo and found out that early indication is that the cancer is responding to the treatment which is good.
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Hi @plc_under_40
Im nervous too about the lymph nodes. But the medical and radiotherapy oncologists I saw this week are both confident the treatments will work on anything left.
Sorry to hear about ur osteoporosis diagnosis. But glad ur doing good in spite of it all.
S
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Just wanted to give you all a little hope I was diagnosed with a grade 3 (but stage 4) pleomorphic lobular carcinoma back in 2024 with bone metastasis. I am still here and my cancer is currently stable and responding well to treatment (ribocibclib,Anastrozole, Zoladex and Denosumab) yes when I started these treatments the side effects were bad but as time has gone on they have become a lot more manageable, I still suffer pain in my legs and my back but I am still able to work full time and live my life.
Stay positive x,
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Thank you for posting - so good to hear you are well and living a happy life and working.
amongst this nightmare positive stories are so welcome.
Take care Sxx
Another one here with pleomorphic lobular bc grade 3ā¦ā¦.rare, yes, but it seems there are quite a few of us!
I had a lumpectomy in January, clear margins and 1/3 nodes involved. Was on Letrozole but now taken off it during chemo. Iāll go back on it once the chemo has finished, but thatās a long time away! Then itāll be radiotherapy, bisphosphonates and the CDK 4 &6 inhibitorsā¦.and Letrozole, of course, which I have no problems with at all.
Itās a difficult one to get our heads round because itās been studied so little to any effect, mainly because it IS so rare. I think weāre all left in the dark. But itās great to know that we can share what we DO know with each other on this thread, and give each other some support. My feelings go out to the younger women who have this āvariantā of ILBC, because it must be so frightening, knowing itās so aggressive. But it can and is being treated, so hold fast and never give up hoping.
Iām now 72, so a few more years would be nice, but at least Iāve had my good life. I hope for more, but am willing to settle for what I have left.
All the very best to each and every one of you.
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I was 51, now 52
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