Invasive lobular breast cancer

Thats what is worrying about lobular, I wasn't even diagnosed with lobular. It was ductal 7 -9mm. Lumpectomy results where 35mm ductal and lobular. I'm pushing to have an MRI scan 

Yes totally

Im sort of wondering when / if I ever will get that moment when they say - you are cancer free. I wonder if I’ll just be left drifting after the radiotherapy. Don’t know if they’ll do an mri before signing me off for a year or whatever? I mean how do they know they have got everything?? 

Hello,  that is an interesting question and I don’t think they do say cancer free especially if ER positive as it can come back years later.  My surgical oncologist said I had no evidence of disease and that made me happy.  The medical oncologist uses that term too.  Cancer free is a trickier term as the doctors don’t know for absolute certainty that it wil never come back.  
So every time I hear NED I am happy and blessed.  
Hope this explains.  
Hugs to you.

Hi C22 I had Lobular Breast Cancer 6 years ago now and I had yearly Mammograms for 5 years after, as I imagine you will as well. Hopefully the mammograms will pick up any issues and these can be treated quickly as they leave a marker in where the tumour was so it can be seen on the screen.

Im not sure if they will do another MRI as the surgery is now past and it is usually only done to determine the size and area of the Lobular tumour. They will never say you are Cancer free, they will say There is no evidence of disease, instead. Its hard and when the yearly time comes around it does include some degree of anxiety and panic. However, having gotten through this do not let Cancer steal anymore of your time or energy, try to put this on the back burner until that time . Its easier said than done,  but if you dont it can engulf your life and then Cancer wins . xxxx

Gosh Thankyou both for such wise words

i will take ned any day of the week if that’s what they’ll give me 

reading anti cancer at the moment and he makes the point that we probably all have cancer cells somewhere but only some of us go on to get cancer …… so maybe in that respect to say “cancer free” wouldn’t be accurate 

That's my issue I can't see how they can ever say I'm NED if they don't give me an MRI. I was diagnosed with a very small 7-9mm ductal tumour. After lumpectomy it was 35mm, 4 to 5 times bigger, and was both ductal and lobular. I had mamo on both boobs, 3D mamo on left, ultrasound on both and both armpits, the lobular didn't show on any of them. Hospital say they won't do an MRI. I'm having to fight for one or pay private. We shouldn't have to fight and argue to be checked, it's bad enough going through this without worrying that there's more there that's been missed.

Sue x

Hi it's such a worry  I really hope you can get the scan especially as they changed it from the original diagnosis I just wondered how long after your op you had results I'm waiting atm and getting so anxious my op was 8th of July they said 9mm invasive hormone receptor ductal cancer x

I had my op monday 24th June. The told me dressing off at the hospital after 10 days, results 10 to 14 days. 2 days later I had my  appointment letter in the post. Results and dressing on 4th July. 10 days from op to results. But results where back after 8 days as it was discussed at the MDT meeting. I only know that as I rang the breast nurse about something and she told me they were back. I asked did I have clear nodes, she yes and everything is fine and will discuss in clinic. That was the day I cried for the first time, absolutely sobbed, was such a relief. Only to find 2 days later my diagnosis had changed 

Sue x

Omg how could it change that's bad and I think they have forgotten me so what is your situation atm x

Hi all

i thinK my results where just over a week after my operation. The trick is to find out what day they have their MDT meeting that’s usually when they put all the pieces together - it seems!

in terms of scans - mammograms showed nothing on me including the toxo (something?) mammograms. Ultrasound showed the Breast tumour at 18mm. It was 23mm.

ultrasounds showed nothing in my lymph’s. On sentinel node dissection I had an 8mm tumour in one node. 
mri showed the breast tumour but not the node one. Not massively reassuring that an mri couldn’t pick up an 8mm tumour. 
no idea what the solution to that is?!