lobular breast cancer

Hi there, I'm one of the community champions on this group and I just noticed your post hasn’t had any replies, as the site is quite busy. Whilst unfortunately I don't have the experience of lobular breast cancer myself, my response will bump you back to the top of the forum and I am sure someone with the right experience will be along soon. Best wishes 

Hi Tabby,  Sorry to hear that you find yourself on this journey.  I had stage 3 lobular breast cancer 12 years ago.  I had lumpectomy, chemo and radiotherapy.  I was prescribed tamoxifen and then letrazole for ten years.  I have had regular mammograms and nothing has been picked up in twelve years so I do think that they are pretty accurate.  I hope you stay well and I am here if you need to chat .

Lee x

Thank you for this. It's so good to hear something positive. You are taking Letrazole long term. have you had to take bisphosphonates as well? 

Hi Tabbyc  I take Adcal twice a day and have a dexa bone scan every two years.  What are you taking?

Lee x

Hi Tabbyc

I also worry about this.  My 4 cm lobular/ductal tumour was not seen at all on mammogram that I had 9 months before I felt the tumour myself.  It was slow growing so must have been a significant size when I had the mammogram done. I'm currently debating whether I should go private for some imaging that might be better suited to finding lobular, maybe MRI or just an ultrasound maybe every 18 months.  Can't really afford it but the worry is constantly at the back of my mind x

I was -1.7 and diagnosed with osteopenia at my dexa 2 years ago (next scan due in April). After discussion I decided to take Vit D and VitK (my calcium levels were ok) and wait for this next scan to see how I am. Not keen on starting bisphosphonates. My Vit D levels were very low 40 but they are now 88. I'm a bit surprised that I haven't had any monitoring that I have instigated. When my pharmacy check was due I was told not to bother. 

I must admit I've wondered about this. I would have thought that maybe women with lobular tumours should have scans rather than just mammograms. We are told that lobular is not that common so I would have thought that it wouldn't be that more expensive to the NHS. 

Yes good point about the relatively minimal cost to the NHS - and I believe an ultrasound is less than £200 which revealed my tumour straightaway, probably not that much more than the mammogram that didn't spot it.  Anyway, just grateful to have found it.  I am very grateful for the treatment I have received, but there must be a better way for us lobular ladies x

It seems it’s hard to detect on monograms so going forward I’m going to pay privately for a breast mri.