62234members
327609posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Lobular Breast Cancer

7 REPLIES 7
Highlighted
Member

Re: Lobular Breast Cancer

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

Member

Re: Lobular Breast Cancer

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
Member

Re: Lobular Breast Cancer

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.

 Kathyxx

 

Member

Re: Lobular Breast Cancer

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
Member

Re: Lobular Breast Cancer

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?  

Kathy. 

Member

Re: Lobular Breast Cancer

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.

Linda
Member

Re: Lobular Breast Cancer

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

 

 

 

Member

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 .

Janie 

😃🌷