Hi

im sorry to hear your diagnosis.  
I was 48 when receiving my diagnosis and have gone through the same with 10cm lobular breast cancer, ER+ tumour.  Wasnt at the age to get regularmamograms and with no stmptoms or lump, it just seemed to have crept up on me.  Due to the size, I had a mastectomy, lymph node clearance (as 24 out of 32 nodes positive). Im a bit unusual (according to surgeon), as im high risk as have large lymph node involvement but my Oncotype (recurrence score on your tumour) is very low at 11 out of 100 which makes me low risk - confusing!  Anyway, I went through 6 cycles of chemo (3xFEC, 3xDoxetavil) which wasnt too bad and followed by 15 rounds of radiotherapy.   As far as Oncology feel, Im cancer free.  Now on daily Anastrazole tablets and have prostat injections and recently had my first Zoladronic injection (which is absolutely fine).  Im struggling with knee joint pain which is a side affect and other than hot flushes Ive been fine.

As horrendous a position were in, its good to hear from others who have had similar diagnosis. 

just want to reach outand send positivity to both of you on this link.  Love to hear how your journey goes giving any support or advice to one another.

We have this xx

I was diagnosed with lobular breast cancer in the summer 2019 when I was 48. A lot smaller tumour at 3.5 cm. It didn't show up on the 2 mammograms I'd had done previously. Partial mastectomy and flap used for reconstruction. One of my lymph nodes had micro metastises so no full clear out. PR 8 ER 8 HER -. I was also told that lobular breast cancer doesn't respond very well to chemo. My Oncotype score came back as 16. I had 15 sessions of rads and am now into my second year of tamoxifen. Night sweats initially but these have either improved now or I'm just so exhausted that I sleep through them! I do have stiff joints in the mornings but no major side effects. I did have a pretty bad mental battle with the medication. I wanted to move on and put the cancer behind me but found the medication was just a reminder. I'm not brilliant at taking it daily but am better than I  was last year.  Good luck with your journey!

Hello. I hope you're all doing well. I have just joined the group because I was diagnosed today with lobular cancer which is in 2 nodes under my arm. They're doing a MRI of my breasts because the doctor said that the 13mm tumour on the ultrasound probably isn't all of it as a tumour that small wouldn't usually spread. She's also doing a whole body CT scan - that's thrown me as I thought they only did that when they had reason to believe it's spread - has anyone else had this?

thank you and love to you all xxxxx

Hello. I hope you're all doing well. I have just joined the group because I was diagnosed today with lobular cancer which is in 2 nodes under my arm. They're doing a MRI of my breasts because the doctor said that the 13mm tumour on the ultrasound probably isn't all of it as a tumour that small wouldn't usually spread. She's also doing a whole body CT scan - that's thrown me as I thought they only did that when they had reason to believe it's spread - has anyone else had this?

thank you and love to you all xxxxx

Hi, 

So sorry you have had to join this clan but we are all warriors. Lobular cancer tends to make a type of web, not a lump which is why mammograms sometimes miss it. My tumour was thought to be 19mm on the ultrasound but was 35mm on the MRI. I should think the CT scan is probably to check if it has spread but that doesn't mean it has, it means they are being very thorough. People will say try not to worry, but that's easier said than done. But we are here for support.

Thank you so much.  All of the stuff online is so scary but seeing the posts above makes me feel more positive that people do survive and can be treated.  I'm naturally really worried as we all are / have been. So good to find some support xx 

I found it really helpful to talk to people who had experience of the journey/ understood what my thoughts were etc. One piece of advice would be stay away from Dr Google!! Xx

Yes it really is.  Trying not to google but it's hard! I'm freaking out that it could have spread to the whole breast and beyond - the waiting is terrible xx

The waiting is always the hardest part - and that will continue along every step Im afraid. Even waiting for yearly mammogram results is tough! Let us know when you have you scan and just shout if you need any support.

Caroline 

Thank you.  I've had myself dead and buried several times today - not sure how I'll manage 3 more weeks until the results xx 

Hey I still do that now with every ache and pain and I'm 2 years down the line!! :wink: