Lobular Breast Cancer

Hi, I have secondary lobular breast cancer that has spread to the peritoneum. I was diagnosed with  primary 2010 and secondary in 2015.  Im staying really fit ( with a lot of hard work) and want to stay that way . Currently I’m on Capecitabine. I’m looking for others with Lobular breast cancer as I am starting to discover through my own research that it is different and requires different treatment and a lot more research. I am interested in alternative and conventional treatments and just how others are managing with this type of bc. There seems to be so little info on this type of be in the uk and not much in the USA. Although ther is a new website LBCA that has some information. I attend the Beatson in Glasgow. 

Look forward to hearing from you .



Hello Janie


i was diagnosed with lobular breast cancer Oct 2012.  I had mastectomy and they discovered that it was in both breasts, bones, skin and peritoneal more or less at the same time.


Eventually I had bilateral Mx and then was put onto Letrozole which kept me stable for almost five years.  I then had a problem with my bowel which they thought was IBS - I had some previous history of this.  It turned out to be thickening in my peritoneum which was impinging on my bowel.  I was given everolimus/exemestane combination but after three months of the most horrible mouth ulcers they discovered that it wasn’t having any effect on my TMs.


I am now having pacitaxetol chemo.  I had my 14th of 16 last Friday.  I was only to have 12 but towards the end my TMs went down a little so they suggested another 4.  I will then have a scan and decision will be made as to what happens next.


I had no lumps, bumps, pain, thickening etc before diagnosis which came after a routine mammogram.  Lobular appears to not manifest itself in a lump, and to mainly affect the soft tissue.


There is a thread on the ‘Living with secondary breast cancer’ section which you may find interesting.  I will bump it up for you.


like you I find it difficult to find much info regarding Lobular.  I would be very interested to share info and experiences with you.  I did find some info on the Macmillan secondary breast cancer site, including some peritoneal experiences.


I will check out the site you mention LBCA




Morning Janie & Lynne

I was diagnoised with lobular breast cancer way back in 2009. At the same time bone mets. I agree there is very little information about it.

I had only had a routine mammogram in 2008. It is annoying that they don’t do a CT scan instead. Lobular it is only 10% of all breast cancer so it must be more rare. I asked question at the time will I be getting a.routtine MRI on other breast. I was told I would not.


Hello I too have metastatic lobukR breast cancer to the peritoneum diagnosed in March 2016.  1st primary 1998, 2nd primary 2004.  Been treated with Palbociclib and fluvestrant (trial) for last 2 years but now have some progression again in that area so a change of meds is needed. Seeing oncologist next week  who has suggested the E+ E combo but want to source all my options at this time before deciding.   I wasn’t surprised to have some progression as I had some symptoms and it seems that the scans take a while to catch up. My blood markers too are unreliable as they have hardly  risen above normal throughout.  Such a sneaky cancer and I agree we need to research well ourselves to deal with it as most treatments are geared towards ductal breast cancer responses.  Happily now the Americans are starting to look at lobular cancer and some have suggested that It should be reclassified as a gastric cancer that starts in the breast.  Interesting?  


Hi Linda Lynne and Kathy,
It’s good to hear from others in the same position as me. I am trying to find out if there is anyone who specialises in LBC in the uk. I was given a name of Christopher Ring at the Marsden but haven’t contacted him yet. It’s been hectic as we are just off on our holidays. It’s good to hear you got a good amount of time out of palbococlib it could be an option for me, Kathy. I have been on Paclitaxel and Eribulin and now Capecitabine for 9 months. I got over a year out of the other 2 though. My main aim is to keep as fit and healthy as I can to stop the damage from the chemo and keep my immune system strong. I too notice a fluid build up before the scans pick it up. In fact I delayed the last scan because I knew there was no fluid and it was all stable thank goodness. I spoke to an alternative cancer specialist yesterday and he suggested lots of things I could be doing with diet , supplements, hyperbaric, infra red etc. Does anyone have experience of these treatments ?
Hope you are all keeping well
Janie xx

Hi Ladies
Just updating as I have had progression. I had the usual peritoneal fluid build up that caused a much greater problem with breathing than usual (I couldn’t even walk across the kitchen never mind my usual march up the hill with the dog) It turned out to be fluid around the lung and heart, which apparently is classic Lobular progression. Had 4 litres drained last Thursday and I’m feeling a lot better now but very tired. I’ve been put in Letrozole while they try to get me on a trial as my options are running out. Apparently Letrozole could take a month to work so terrified fluid will build up in that time. I’ve always worked hard at keeping fit but it’s hard now as I’m still quite out of breathe . Any suggestions greatly received !
I hope you are all doing ok
Janie xx