Just starting the rollercoaster.

Hi Tanya, 

I to have Invasive lobular cancer grade 2. I’m a mum of a 10 and 14 year old! I’m having chemo at the moment I’ve just had my 5th out of 8 today. I had EC first now I’m having paclitaxel then into a double mastectomy and hormone tablets. My tumour was 3.5cm, chemo is not as bad as I expected but it’s also not a walk in the park!! If you want to chat feel free to add me and send me a message xx

Hi Tanya, 

I hope the drain removal went OK.  I found that bit a bit gross!  I too had lobular cancer which was only discovered because of some invasive ductal cancer.  Mine was big, but had not even shown on the scans.. I think lobular, is quite a good one at hiding.   Great that you have had your mastectomy. Just take each hurdle as it comes.  

and take LOTS of care of yourself... 

Much love

Sukki xx

Hi Sukki,

Sounds like you have had a rough ride as well. Yes the drain was a little bit of a sweaty palm moment when it was removed!! but not as bad as I’d got it in my head it was going to be!!

Yes Lobular doesn’t show on  mammogram only on ultrasound and then it’s difficult to define the edges. Mine doubled in expected size hence second op for mastectomy. Im going to be scanned yearly with ultrasound for the next 5 years. Just got to get over the chemo/radiotherapy hurdle now then I’m on the home run with hormone tablets. 

Thank you for getting in touch, hopefully we can keep in contact.

Tanya

I too had invasive lobular, grade 2 with 7/21 lymph nodes involved so had node clearance 3 weeks after my mastectomy. My children were a similar ages to yours when I was diagnosed Oct 2018, they were 15 and 12 then. 

My drains were in for 2 weeks, I must of had so much lymphatic fluid lol.

Hope it all went ok when they were taken out and you are feeling ok.

Not been on for a while as had a few changes of plans! I was expecting to start chemo mid Feb. Had a Prosigna Molecular Profile test done and my results came back as having a low risk of distant recurrence with negligible benefit from chemo, so chemo went out the window 5 days before I was due to start. To say it was a relieve was an understatement!
I’m started 14 days ago on Zoladex, Letrozole, Adcal D3 and 6 monthly Bisphosphate therapy.