Hi can anyone help me .I have been diagnosed with invasive pleomorphic lobular carcinoma. I can't find much information. Any one going through this or just been diagnosed.
I am sorry to hear about your diagnosis and wanting to find out more. I appreciate you are hoping other people may get back to you who are or who have been in a similar situation to you and hopefully some will but do bear in mind everyone's story and outcome will be different so it can be difficult to compare your situation with someone else.
Invasive pleomophic lobular carcinoma is a rare sub type of lobular breast cancer that you can read about here. The pleomorphic refers to the unusual pathological features ( the appearance under the microscope) of this type of cancer cell, however as far as I am aware it is usually treated in the same ways as an invasive lobular carcinoma.
There is also a charity called lobular cancer UK here that you may like to look at and make contact with to see if they can also give you more information or put you in touch with fellow patients in a similar boat.
I hope this is helpful but do get back if you need to. You are also welcome to call our helpline and speak to one of our nurses on 0808 800 4040, Mon-Fri 9-5.
I was diagnosed with pleomorphic lobular Ca in 2021. I have been looking on various research websites but info is quite limited due to its rarity. I had a very small 0.7mm IDC in right breast in 2019 treated with lumpectomy /radiotherapy. They found a much much larger pleomorphic lobular in left breast at follow up scan in Feb 2021 with 19/30 nodes affected which hadnt been obvious in 2019. It was initially treated as lumpectomy and total axillary clearance with follow up mastectomy due to margins as it turned out to be 8-10 cm rather than 1.7cm on an MRI with contrast ie fairly invisible due to single strand nature. I think of it as a havest spider - small centre with several long legs! Treated with weekly paclitaxal chemo for 11 weeks and am now on palbociclib/letrozole/ denosumab /calcium for stable spinal mets. I seem to be doing just fine on this combination like many others. Much easier than chemo and no major side effects. My hair grows slower and i'm more tired and i need precautionary abx more often but that's it. Lucky me and am grateful to all the scientists and clinicians whove made this possible. Still doing 7 mile walks uphill. Happy to keep in contact.
