Hi I’m hoping to find if there’s anyone else under 45 that has/had PLC. 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 that’s healed I will have a hysterectomy. As I also have palb2 gene defect
Stage 2 32mm tumour with 5/33 nodes positive. I can’t seem to get any straight answers from my oncologist and I’m aware how rare plc is but I’m finding it difficult to find anyone my age that’s had/has it. I’m hoping to be able to speak to people on here that may actually know more about pleomorphic because I feel like my doctor doesn’t they didn’t even tell me it was pleomorphic I read it. Just to add to everything else I’ve just been diagnosed with osteoporosis in my L1 to L4
Sending strength and love to everyone going through this nightmare and has been through it
So sorry for all the horror you are going through.
I was in my 50’s when I had a grade3, 4.5cm lobular tumour, with multiple satellite lesions and 3 nodes. I had an incomplete lumpectomy, then mastectomy, node clearance, chemo, radiotherapy and hormone blockers for 10 years. That was over 18 years ago and so far, so good.
I haven’t heard of pleomorphic lobular before but I guess it’s a descriptive term for a high grade form of lobular tumour. That always sounds terrible but at least more active tumours are also more susceptible to being zapped by the chemo. Also hormone pos is good for the same reason that the antioestrogens work better. I know I’m trying to focus on the slight positives for you (that’s always how I rationalise things for myself). I can see you are facing one blow after another and you have all my sympathy for that. You must feel pretty worn down by it all. It’s just one foot in front of the other though, until you get to the end of all the various surgeries, and then focus on recovery. You are probably worried about the osteoporosis issue and someone should talk you through the treatment options I changed from arimidex to tamoxifen because of that issue and went onto fosomax to prevent further bone loss. Your breast care nurses could point you in the right direction to get advice.
You could try posting in the “younger women” sections of the forum to find someone in similar situation. There is also the “someone like me” service where they try and match you up with someone who has had similar problems.
I know my reply may not be what you’re hoping for but I just wanted to commiserate and let you know you are heard.
