17-09-2018 12:36 PM
Hi Janie. I’m so sorry to hear that you have had progression and felt so unwell. I don’t think I can offer much regarding treatments and just hope the Letrazole will kick in to stop the fluid build up whilst you find a trial.
ive had progression to the womb, which has been diagnosed as ivehad heavy postmenopausal bleeding causing anaemia. I can’t even get a Gynae oncologist to see me let alone consider surgery as they want to use radiotherapy to stem the bleed. Can’t imagine the scans will be able to give accurate accounts of where the cells are seeing as it’s lobular and they are largely used to the lumpy ductal form. Like wading through treacle to have lobular properly acknowledged and treated.
Apparently there are groups in the U.K. fighting for better treatments for SBC that I was unaware of
such as Jo Taylor@abcdiagnosis. She is also on twitter and has good information on getting funding for drugs not currently approved by Nice. I have nt looked into this myself yet but am certainly going to do so. I’m getting a bit Bolshi now and I think we have to!
Wishing you all the best. Kathyx
14-09-2018 08:52 AM
23-06-2018 09:06 PM
Hi Janie. I haven’t been able to find a lobular breast cancer specialist so have noted the name you have been given at the Royal Marsden. Thank you. They are doing the ROLLO trial there on LBC patients combining fluvestrant with a drug usually given for Lung cancer. I don’t qualify having had the fluvestrant already but I was told they may be running more trials using other drugs possibly an AI in the future. May be worth keeping an eye on this.
I havent as yet contacted an alternative BC practitioner so can’t offer any info on alternative treatments but do think they are worthwhile exploring, after all what have we got to lose. I’m currently looking into the CBD and THC oils after a patient at oncology told me it had knocked her liver mets back to nothing in a few months. Onc told her to keep taking it. Also keeping my diet as alkaline as possible which if nothing else seems good for digestion .
Palbociclib is a very doable treatment, I would like to have stayed on it longer so I’d definitely recommend it if you get the chance.
Im well at the moment and living a normal life. I can honestly say I’ve never been unwell since my first diagnosis in 1998 so I’m trying to stay on the soft option treatments for as long as possible . Will be looking up the hyperbaric and infra red treatments you’ve mentioned . I really need to explore these things as I know many other common drugs such as metformin in and statins are said to be able to help.
I hope-we can keep this this thread alive for a while as I think we could all learn a lot from each other. Best wishes to all for a nice weekend.
23-06-2018 01:59 PM
20-06-2018 05:19 PM
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?
20-06-2018 10:35 AM
18-06-2018 04:36 PM
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
18-06-2018 02:49 PM
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 .