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 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

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 

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