Hi Hayley

I'm sorry you've been diagnosed with lobular breast cancer and you're feeling worried and frightened. I was recently diagnosed with the same cancer and have 2 masses in my left breast which are similar in size to yours. I also had an MRI, as I understand lobular is not easily detected on a mammogram, which unfortunately picked up a third suspicious image. I had another biopsy on the third mass this week and get the results next Wednesday. I'm sure it will be more cancer.

Have you had a conversation with your surgeon about the type of surgery you might have? Mine has offered a mastectomy (to my utter horror) or a therapeutic mammoplasty, which I am hoping to have within the next two weeks.

It's an incredibly scary time and I had to speak to my GP who prescribed me with some anti anxiety meds, which have helped, as I was not sleeping or eating properly. 

My surgeon said this is treatable and curable which makes me feel a bit better but I'm still scared. Please don't worry about dying. There are loads of treatments possible and available to us. Do you know if yours is oestrogen/progesterone positive or HER2+? I'm HER2- which means, fingers crossed, chemo won't be necessary but I guess everything depends on what they find after surgery. I'm terrified about this part.

Make sure to contact your breast care nurse if you're scared about anything. I sat with a nurse for over an hour after my recent biopsy and left feeling much more positive about my future. She really was amazing and will take as much time as you need.

Good luck and big hugs

Jo

Hi Jo 

thank you for your reply my results from biopsy came back with ER8, PR7 and HER2 negative, I’m so worried that the MRI will bring up more, I’m waiting for my MRI results to be discussed between consultants and team before a treatment plan can be decided, I’m so sorry to read your message as I’m not eating and sleeping is a thing of the past, I’m due to return to work next Saturday but I really wonder if I can carry out a full shift.

take care Jo x

Of course you're worried, it's perfectly natural and I totally understand. My GP has also signed me off work with anxiety which has massively helped. It means I can sit and research what I need to at a pace that suits me, rather than worrying about work aswell.

If the MRI brings up more issues, I doubt it will make much difference to your treatment plan. Yours sounds the same as mine - early breast cancer - which is treatable! 

Plan will probably surgery followed by radiotherapy. It's a scary thought but it's doable - in fact we WILL do it for the sake of our children, who need us.

We will get through this together. If you want, I'd be happy to keep in touch as it appears we are on the same path.

Remember that lots of ladies have beaten this, and we will too.

Sending a big hug xx

Jo

Hi Jo 

It would be good to keep in contact as yes I’m same path, mine is on right breast so far but all could change when results checked.

Every advert on tv is breast cancer related at the moment, or maybe it’s that I’m subconsciously noticing them.

take care and let me know how Wednesday goes please.

Hayley xx

Hi Hayley. Just wanted to say I was diagnosed with stage 2 Lobular breast cancer exactly 5 years ago. 
My treatment was surgery (breast conserving) followed by 15 sessions of radiotherapy. I have had regular mammograms and MRI’s annually since and all is well!! 
It IS a tough call initially. Everything is new and scary. I remember feeling terrified when I was first told. However 5 years on I am living my best life!! Just wanted you to know that I am living proof of the other side of treatment!! I wish you well. 

Hi Hayley. Just wanted to say I was diagnosed with stage 2 Lobular breast cancer exactly 5 years ago. 
My treatment was surgery (breast conserving) followed by 15 sessions of radiotherapy. I have had regular mammograms and MRI’s annually since and all is well!! 
It IS a tough call initially. Everything is new and scary. I remember feeling terrified when I was first told. However 5 years on I am living my best life!! Just wanted you to know that I am living proof of the other side of treatment!! I wish you well. 

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 

Hi Lilljillybobs .  That is same what I had.  I think that they send the ONCO testing to be done in the states, that's why it takes longer.  Are you going for another op to get clear margins?  I had cancer in one lymph node and they did decide on chemo.  I was 47 when I was diagnosed.  Maybe you can phone the breast care nurse to see if there have been any updates .  Sending you hugs.

Lee 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