Newly diagnosed invasive lobular breast cancer

Hi I was diagnosed with the same. I had surgery, now taking hormone inhibitors and about to have radiotherapy.  I also gad some lymph nodes removed during surgery, cancer cells were found in 2 out of 3.  
I had a test after surgery on the tissue which showed that it was very unlikely to spread or reoccur. My oncologist told me that chemo would be more harmful than beneficial. 
Like you I was told how it is difficult to pick up on a mammogram.

here to talk to 

Rachel 

Hi ladies 

I have  a different type ( invasive ductal her2) 

but I follow Julia Bradbury on Twitter who I believe was diagnosed with ILBC . It is interesting watching / listening to her , and how she is recovering post surgery . It may be of interest to you both?

love ️ and best wishes

Deb 

Hi I was originally diagnosed with ductal breast cancer in June following my second mammogram which had been delayed due to covid last year, that changed to Lobular grade 2 when I had my lumpectomy, I also had 2/4 lymph nodes positive and so had auxiliary clearance. I joined the Optima trial and was lucky that my tissue sample was tested, it showed chemo was of no benefit to me. I had already found a research paper on it which said that Letrozole is of more benefit to Lobular cancer as lobular cancer is highly oestrogen positive. I also have to have Zoladex injections as haven’t been through menopause even though I’m now 55, Zometa for 3 yrs for my bones whilst taking Letrozole for 10 yrs and I start Radiotherapy on 5th January.

I think Lobular cancer is not as common as ductal but there are a lot of ladies on here that have had it and I’ve noticed quite a few in the last couple of months. There was a lady that commented on a post the other day that was diagnosed 16 yrs ago. 

Diane x

Hi Leanne,

sorry you are part of the group! It is good that they picked up on the LBC as it is hard to find! I was diagnosed in 2005 and had one positive node; I chose to have a mastectomy. They did give me four lots of chemo even though the evidence was saying even then that it probably wouldn’t help! However I had three years of tamoxifen followed by eight years of exemestane, an aromatase inhibitor. 
unfortunately the docs wouldn’t allow me to take it any longer as there was no evidence of further benefit, and it came back this year. Now on new wonder drug pablociclib that has only been around for a couple of years! 
so LBC is very treatable, just different! Good luck!

Mary

THanks for your reply Rachel. I read that too about it being less responsive to chemo than other breast cancers so hopefully I wont need that. At the moment my tumour looks to be about 9mm but was told it may look much bigger after MRI so will just have to wait and see. Leanne x

Hi Mary, thanks for your reply. You seem to have been through so much and to get all these years after while on inhibitors only for it to return again when you were taken off them seems cruel. I hope your new wonder drug does the job and keeps it at bay. Leanne x

Hi Dianne, Thanks for taking time to reply and I really appreciate all your info on drugs etc. I will know more about what I need done once I get the MRI results in due course which could take ages now that the Xmas holidays are almost on us. I’m already on the garnet trial for cancer which has literally saved my life up to now but I’ve been told this is a completely new cancer but the thought of having even more new drugs pumped into me is scary as you wonder how much the body can take. I’ll update once I know more. Best of luck to you xx

hi Deb, thanks for getting back to me. Hope you are doing well? I looked up Julia Bradbury but it reads that she has invasive ductal cancer so not quite the same as me and I’ve no idea if one type is worse than another or much the same although I’m sure they probably behave differently. I’ve a lot to learn about breast cancer and have to have genetic testing done too. my mum had breast cancer 27 years ago and now has it again in the same breast although was told it was not a recurrave but a new cancer. Such a cruel disease. All the best to you xx

HI Leanne, OK, i'm sure she has/had lobular, as had her left breast removed first, before chemo etc, j(so unlike me, with invasive duct , her2)

but my mistake i'm in inorreoct, i still follow her on twitter, as she has 3young children, at 51 (ish) I think

she also has lots of good suggestions, re post surgery etc..I also like that shes out there in the public, giving lots of advice, and thoughts for us, and carers/friends/family involved in out lives

take care

Hello Leanne4, there is an organisation in the USA called Lobular Breast Cancer Alliance (LBCA) & in the UK there is also an organisation for LBC. I am sure you will find both these sites very informative. I had ILC grade 2, had MRI scan, CT scan, mastectomy, immediate implant reconstruction, Oncotype low score so no Chemo & no radiation, Letrozle & Biphosohonates. I am 1 year on from surgery, healed & recovered well. Victoria Derbyshire had ILC.