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

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

My meeting this afternoon with the surgeon did not go well, unfortunately.

The third mass is also lobular cancer and so I am to have a mastectomy next week, as the total area that he would need to take out, including margins, would be about 10cm.

I can cope with a mastectomy but he floored me when he said I need a CT scan too. This would be to check for any spread. I am now utterly petrified and had a full blown panic attack when I got home. He also hinted that I'm likely to need chemo, which also terrifies me. It's now 0335 in the morning, I haven't been to sleep yet and keep playing the conversations in my head.

I just don't know how I am going to cope.

Sorry to be the barer of bad news. Please don't think this will happen to you, too. It most likely won't.

Hope you're OK

Jo xx

Hi Jo 

I am so sorry to read your post, do have you family or friends that can support you through this? Your consultant sounds very knowledgable. I’ve been prescribed sertraline for my anxiety and panic attacks, I know this isn’t ideal but I need that little assistance at the moment, still waiting to get my appointment for MRI results and the waiting is effecting my sleeping, eating, everyday life.

Please look after yourself and keep in touch, 

Hayley xx

Oh Hayley, it's so difficult isn't it. Bless you.

I'm on Mirtapazine for anxiety. It helps me sleep but I was awake last night until 0500 this morning, I don't think any tablet was going to help me!

I have a supportive husband and family, so I'm not alone. Except I feel very alone as they just don't know how it feels. The terror I'm feeling is unfathomable.

I will have the CT scan but I really don't know if I have the strength to hear the results...

Hope you get your MRI date soon. I was scared about that too (I'm scared of everything lol) but the actual scan is quite easy. Your head will be by the entrance so you won't feel enclosed and it only took 20 mins, which flew by. Just try and have a little kip whilst you're in there.

Keep in touch

Hugs xxx

Jo

Hi Jo,

I know what you mean. I have a partner but we don’t live together, 21 y o son with mental health issues and friends, they are supportive but I feel like all I think about is cancer and I don’t want to push people away.

im just waiting for my MRI results but I was told they could take 2 to 3 weeks. I’m returning to work tomorrow but I am so nervous, I work front line ambulance so come across lots of cancer patients but I’m just worried that I might not be mentally strong enough to help others (even though that’s the way I am). I guess I’ll see how I feel. 

take care and please keep in touch.

Hayley xx

My MRI results showed another area of cancer, unfortunately which meant the type of surgery I was planning to have is no longer possible. I will have a mastectomy instead.

The results don't usually take that long to come back, the problem is that they have to be discussed by the MDT first and so it depends on when they hold the meetings. I usually see my surgeon on a Wednesday so I believe the MDT meetings in my area are either on Mondays or Tuesdays.

The waiting and not knowing is just horrible isn't it

Sending hugs