Invasive lobular carcinoma

Hi Snuggles10 and welcome to the forum. My diagnosis was the same as yours and I am now 5 years down the line I do however recognise that you will be scared I was as well. Im not sure what all the boney bits are about they may just be checking before they go ahead with treatment,  as if you are to go on hormone blockers, which you likely will, then your bones will be affected, so maybe they are doing baseline x-rays to check all is well.

I had my surgery first and they take lymph nodes as well for testing and thats standard for us all. When they get all the pathology results back they will meet you and tell you what they have found and what the plan is for moving forward. I went on to have 20 sessions of Radiotherapy but that has all changed now and it can be given over 5 days, but in bigger doses now. 

You will get through this and we are here and will be here for you every step of the way so do please keep in touch and ask any questions you have.

Sending some hugs your way meantime. xxx 

Hi Gail,

Thanks for your reply.

I guess everyone has surgery?

I am scared of that the most.

I think they are doing more tests as they are unsure if the cancer has moved into my bones as well as the breast.

I have an appointment on 15th June not sure what for yet. Maybe it's the plan of my treatment? Have rang to find out what is happening awaiting callback. Xx

Hi hope you're OK

I had the same breast cancer diagnosis in Feb 

I had 5 biopsies, then had to have 2 more one was still not 100% so had to have MRI

I have a 6cm tumour plus in one of my lymph nodes

I'm booked in for the op on 16th June,and I'm so worried ,like you

Hi I was diagnosed with invasive lobular last September.  I had a lumpectomy (local excision) and removal of lymph nodes in October. I then had chemo and a second excision in May as the margins weren't clear from the first surgery. Fortunately it was all clear thst time. I'm now about to begin radiotherapy. 

The surgery is not bad. It will be a day case . You go.to the anaesthetic room and they chat to you next second you are awake again. 

Chemo is heavy going, but you do get through it . You may not need chemo.  I don't think radiotherapy is anything much in comparison. 

It's not an easy journey but I'm sure the teams at hospital will support you through.  I found the staff at my hospital amazing.

I hope you get a plan soon and can at least know what's happening and start on your treatment. 

Good luck.xx

Hi

 I was diagnosed with invasive lobular cancer as well but mine has spread to my bones 

no surgery for me but with medication I’m told I can go on for years. I have meds to stop it spreading more and meds to hopefully shrink what is there and bone infussion to rebuild my bones.

my biggest thing that I can’t get my head round is I will never be rid of this uninvited visitor

hope you get the results you want but remember there is lots that can be done now.x

I hope everything goes well for you. 

4 months seems a long time to wait, but I am not sure on how long waiting times are now.

My sister had breast cancer 8 years ago and only waited 2 weeks for her surgery, however hers was a straight forward case.

The hospital told me I was a complex case.

Let us know how things go , I will be thinking about you xx

Hi,

Thank you for responding.

It's good to know that there is some treatment if mine has spread to the bones.

Did you have any bone pain?

I keep getting asked if I have any pain.

I do but I thought it was being both very overweight and arthritis was causing my pain. 

Well I will hopefully find out something soon about my treatment.

Take care xx

Thanks for your reply.

Both my mother and sister had breast cancer, but they have said it's not genetic just bad luck. So I know a bit about what happens.

They had a different type.

I took my sister to radiotherapy for 2 weeks, her skin was burnt a little but she is very fair skinned and used a cream to help.

She was ok though. So hope yours goes well.

It's the not knowing what treatment I am going to get which worries me and the surgery is very hard for me to think about.

Hopefully I will get to know my plan soon.

Thankyou again 

Take care xx

Hi

i had some aches and pains but like you thought it was my age and I suffer with a disc problem 

I only found out about the cancer after having a scan for something else that showed up they matastasies then they had to go looking for the primary site. I had a mammogram a year ago and nothing showed up they did another this time still nothing so did an ultrasound sound and that’s when they found something and it went from there.

all a complete shock to be honest 

x

Hi, 

I have been advised that my Oncology appointment on 15th June will be to tell me my plan for treatment.

My Spine MRI from 4th June should be back but if not they will still start on a plan

It's scary but I will know what's ahead for me x