invasive lobular breast cancer

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My name is Kate. Nice to meet you all, I wish it was in better settings and circumstances ;)

I am 51 years old.

In August I was diagnosed with invasive lobular breast cancer. 

At the beginning oncologist thought it is 14mm. As she said - lumpectomy, week of radiotherapy, and off you go.  After mri it turned out it's 29mm. Er8/8, grade 2, hr2 low. 

I had double mastectomy on 11th November with sentinel biopsy of 3 lymph nodes. They were clear on 2 ultrasounds and mri prior surgery. Unfortunately biopsy came positive. Metastasis. It put me on stage III.

I just had CT scan and yesterday and I have to wait 2 weeks for results. I am losing my mind. 

Because of the fact, that every time I am getting worse and worse news I have a gut feeling that it will be distant metastasis - stage IV.

It is not just gut feeling but also facts.

1st - I found a large lump, with characteristic of lobular cancer and size of lump - means that it is already advanced stage,

2nd - I had symptoms for 2 years, but I was always dismissed by GP as "it is normal with menopause ", pains and aches, extreme fatigue etc.,

3rd - those three lymph nodes are not micro metastasis but larger, which again, points to advanced stage.

 Of course - I did a lot of research and it doesn't look good. With my type of cancer which became metastatic median life expectancy is 2 years, some sources says 6 to 19 months, and probably for most of time disabled by side effects of treatments. I am scared. Waiting is excruciating and I expect worse.

 Unfortunately I am introvert, born pessimistic. I have no friends and no family left. I do have 22 years old daughter but that cancer situation worsen our relationship. I don't want to ruin this completely. It's just impossible for me to pretend, to be "ok", to enjoy time I have left. 

 I don't have any hope.  

I don't know how to deal with all of it.

Feels like I lost all strength.

  • Hi KatieUnkucky,

    Sorry to hear your news. I was diagnosed with Lobular breast cancer July 2021 mine was much larger than yours with 3 Lymph nodes - I had mastectomy and lymph nodes removed on my right side . 

    Had chemotherapy and Radiotherapy also all had CT scans and all clear . It was very tough but I am enjoying life . 

    We are all here for you . Once the scans are over and you get a treatment plan everything will seem better . 

    Be kind to yourself x 

  • Hi BT1 

    Thank you for your reply. I am so happy that you are happy and healthy now. 

    I don't know if more of my lymph nodes are with metastasis. All from sentinel  biopsy are. Oncologist said we will remove all of them to do further biopsy. If biopsy would came positive for all of them we would do scan to check extend of metastasis.

    For me it sounded like very invasive diagnostic tool. 

    In my logic - if biopsy after operation comes positive, I will have operation plus scan and chemotherapy.

    If we will do scan first we have two outcomes -

    • first is no distant  metastasis and we can go with operation on lymph nodes, and then decide which treatment is the best.
    • second one - there is distant metastasis , we will start chemotherapy, which will target all, including lymph nodes - so operation removing lymph nodes can be avoided for now. 

    My oncologist said that it is a bit outside the protocol, but she agreed with me. I am waiting for scan results but I have this gut feeling this will  be another bad news.

    Problem is that I am facing all of this completely alone. It is my fault, I haven't met anyone who would want to be with me. I have no friends, my family is gone and I don't want to put any burden on my daughter. It is not her duty to be my therapist, she has her own life now.  

  • Hello, I’m really sorry to read this. I was diagnosed almost four year ago. My story is very similar to yours. Like you it seemed to get worse as it went on. I had a mastectomy and lymph node clearance at the same time, by choice, and then a second mastectomy later (by choice) on healthy tissue in the other breast. I had chemo for five months prior to surgery and 15 sessions of radiotherapy, and am on 10 years of Anastrazole. I had all the scans, and MRI’s. The fact that it was a mixed lobular and ductal beast cancer wasnt picked up until after the pathology report post- mastectomy, as they couldn’t see the lobular on MRI. I then had to have a full body CT, and bone scan to look for distant metastasis, but they were clear. 

    I know what you mean by feeling alone, but people on this site help you feel less alone, especially at times like this. Stay with us xx