Well I’ve finally got my appointment date for MRI results but it’s in 13 days and not sure how my anxiety will be as my stomach is in knots now and can’t eat.

Oh crumbs that really is a long time to wait. I really feel for you having to go through such a long time not knowing.

Could you contact your breasr care nurse and ask if there's any way a closer appointment can be made? It does seem a very longtime to wait. What is the total time from your scan to the appointment?

I've joined a FB page called "Linking Lobular Ladies". It's a very informative page and I was up all night reading threads on there. It does appear quite common that more cancer is found on MRIs and often even more is found during surgery, as lobular can hide very easily on scans. I think this is why my surgeon looked relieved when I eventually opted for a mastectomy because he knows the potential is there to find more and not get clear margins.

I asked the question on there about the CT scan as I'm am utterly terrified of finding out that it's spread. I had lots of replies and many of them said the CT scan helps the surgeon during surgery and not to worry. Whilst that has eased my mind a little I am still battling against rising panic attacks every day. Trying to remain calm is exhausting. My breast care nurse is ringing me on Tuesday because I left a message saying I don't think I am strong enough to get the results of the CT scan in case it's bad news...they would need to call an ambulance for me! I've never known terror like this.

If you want to, you can join Linking Lobular Ladies and we can follow each other on there too. I find it easier to use their site, than this one and because it's specific about lobular only, it's much more relative to us.

Keep in touch Hayley. I know EXACTLY how you're feeling.

Lots of Love

Jo

Lovely to read this. I had my lumpectomy 3 weeks ago and have read so many posts about reoccurrence. I’m feeling very down and scared. Just want my old life back - I know that may never happen, but reading your post has helped x 

Hi liljillibobs,  hope you are recovering after your lumpectomy.  Do you know what treatment you will be having next?  Have you been diagnosed with lobular breast cancer?  I was diagnosed with lobular breast cancer in 2012 and had lumpectomy, chemo and radiotherapy.  Then tamoxifen, letrazole.  It is a long journey but you will get your old life back.  I think cancer changes things for ever but you just learn to live with your new normal.  I just wanted you to know that you are not alone.

Lee x

Thank you Lee xxx

i got my results last week. I have invasive lobular cancer ER+ PR+ HER2-

there were 2 sentinel nodes that required removing. The surgeon thought 2 had been removed. When they were tested only one was a lymph node which had 1.5mm tumour, no idea if the other which wasn’t removed was infected. They got clear margins on 3 sides of the initial lump but one side was too close to the armpit and skin. They have sent the lymph node for ONCO DX testing, to enable them to decide if chemo will increase my survival rate. I’m already on Letrozole.
still waiting for results and no sign of oncology appointment after 4 weeks. 
feels like I’m in limbo, can’t plan or focus on anything. Thank you so much for your message x 

Thanks Lee.

they aren’t going to do any more surgery to clear the area where they couldn’t get the margin. I think they’re going to rely on radiotherapy. Spoke to my breast care nurse and my onco score is 15z. She doesn’t think chemo will benefit me, but I’ll find out for sure when I see the oncologist. Di you have lobular cancer or ducts?  

Hi Liljillibobs  I had lobular breast cancer grade 2 stage 3.  Whatever that means ER+PR+ and HER2- which is same as you.  Have you got a date for oncology appointment yet?  I know what you mean about your life being on hold.  Until you know the treatment plan you just feel like you cant get on with anything.  I felt better when I knew what I was having and then just got on with it.  Funny I never cried until 2 years later. Hugs.

Lee x