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.
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 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
Hi Janie, Im in the UK on the south coast I was diagnosed in 2009 with lobular and opted for a double mastectomy. Now have secondary 15 years later! I can’t believe that they treat lobular the same as any other breast cancer it is not the same. Am interested to know how you were diagnosed?
I am also angry that we are not offered any kind of screening. I am still waiting for a staging CT to come back to find out what I am dealing with. Are you offered MRI scans to check and monitor? There is a lady doing great work to raise awareness near me it’s called the lobular moonshot project.
Keep fit is so crucial Sending positive vibes your way.
Thank you angela for highlighting the lobular moonshot project. I started following them on Instagram. I was completed uneducated about LBC and felt a bit annoyed that my oncologist snd breast nurse 8 years ago told me nothing about the high risk of if returning. Now its back and with no specific treatment. Hoping the research gets its funding soon now that Mr streeting has at least agreed to meet with the moonshot project at last. Hope you are keeping well. Xx
My recurrence is in my bones. Had pain in my pelvis area and in to the groin initially. Ortho referred me for an mri (we went private due to waiting times) and within 4 days was told a tumor was on my spine causing the nerve pain i was having. I also have spread to both hips, ribs, and skull. Ive now also got a numb leg due to nerve damage. Ive had 2 ct scans since starting treatment a year ago. Last redults 2 weeks ago were stable with no spread and bloods are good. So trying to stay positive. Xx
So sorry to hear that Sandra.
Really hoping the Moonshot project will get the funding for research. I expect you saw the 22 for 22 demonstration they are doing at the gates of Downing St next Tuesday? I am going along to support. Hope you stay stable. xx
My story diagnosed with invasive lobular c not dcis, ER + HER2-, 8/8, back in jan 2021, lumpectomy on left breast, given tamoxifen, then anastrozole, followed by radiotherapy, re occurance happened back in Dec 23. Extensive bone mets. Put on abemaciclib, fulvestrant and denosumab, this lasted approximately 14months, then started to feel not quite with it, stomach started to swell, nausea, loss of appetite, abdominal pain, saw my gp thinking had a water infection, done a full bloods and as a precaution ca125 blood test. Well to cut a long story short.
I dont have ovarian cancer, my invasive lobular breast cancer mets had jumped ship to my omentum and peritoneum. Which has caused problems with one of my kidney’s. Inflammed liver and less capacity for my stomach to move due to ascities which they cannot drain.
Am now on capecitabine 14 days on 7 off, first cycle. To say im scared is a understatement, as i know this is a general treatment for most breast cancer types and not for HER2-
Really need some positive results that this chemo pill works and for how long?
Sending massive hugs to all you ladies on this path of uncertainties.
Yes i saw the video clips of the 22 ladies…and good to hear that a meeting with wes streeting is finally happening on july 14th…so heres hoping he comes thru with the funding required.
Hi all lobular ladies,
I have not posted on the forum for a long while, since the site was restructered. I am a lot older than most of you so feel that I have lived longer than many people who have never had cancer.
My primary was in April 1995 but I wasn’t told what type it was. It was discovered at my first mammogram aged. 50. It was described as “thickening” rather than a lump and close to the chest wall. I couldn’t feel it, even when I knew it was there. I had a lumpectomy which confirmed it was cancer, then radiotherapy to the scar, my neck area and under my arm, for several weeks. I also had chemo tablets which was described as “mild” consisting of methotrexate, something starting with E, and fluoruricil (?) one only each session and then tamoxifen for five years. No CT scans, I don’t think they were used then, though not sure.
Then 20 years after primary I was ill and it turned out that secondary breast cancer had blocked my small bowel in my peritoneum. (2015). I had to have an ileostomy which I hate.
I had FEC chemotherapy for several sessions, then anastrozole and denusomab as it was also dotted around my bones.
I had remained stable more or less ever since but denusomab affected my jaw and I had to have a wisdom tooth and one next to it removed, so my treatment was changed to palbociclib and fulvestrant instead.
I have been on this for around three years. My bones have remained stable but there is now progression with thickening and nodules in the peritoneum area.
I am due to start capeticiban (?) tomorrow because of this.
I had never heard of lobular cancer until around two or three years ago when it was mentioned on a scan report.(I always get copies)
I am quite scared of the new treatment, having read about all the side effects you may get but even though I am old (and can’t believe it!) I am not ready to let nature take its course, so really feel I haven’t got much choice.
I thought I would tell my story as it does show that it is possible to live with secondary lobular cancer for many years.
With best wishes to you all.
Xxx[quote=“janieb, post:1, topic:79921, full:true”]
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.
Have you heard of the lobular moon shot project? Ive been following them for the past year. I new nothing about lobular breast cancer despite my initial diagnosis almost 9 years ago. Ive learned a lot more now but research and funding is desperately required to treat it. I hope u find it interesting. X
Hi Ladies
I was diagnosed in 2017 with 2 large ER positive tumours. Cancer was lobular with multiple lymph nodes involved. No response to chemo. Double Mx and Tamoxifen ever since.
For the last six months I have had pain in my mid upper arm that has got progressively worse. Is definitely worse at night and some localised swelling. I’m worried about bone mets. I know lobular can metastasise to bones I just wondered if anyone has any experience of the this and also how it was diagnosed? Thank you
Hello lobular ladies. First diagnosed with “tiny - 4mm DCIS” in April this year. It turned out to be 13mm and pathology found a 25mm lobular tumour , so 2nd lumpectomy, 5 day course of radiotherapy and now take Anastrozole. Fortunately no real side effects apart from radiation rashes. Trying to keep as fit as I can - I walk a lot. Dexa scan revealed osteoporosis - not surprising as my mum had it. However I have been automatically been put onto the Open Access Follow Up Pathway - self referral of any problems with an annual mammogram. To my mind no real follow up to my treatment so far to see how I was getting on. I asked for and have now got a telephone appointment with the oncologist and I am pressing for MRI scans as my mammogram and ultra sound completely missed the lobular tumour and I am really scared that something might be lurking, undiscovered elsewhere. Anyone else had a similar experience?
