New diagnosis

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Hello everyone. I'm new here.

I've just been diagnosed with invasive lobular breast cancer in my right breast after a biopsy taken when attending the clinic with an area of thickness near my nipple. It's ER8 PR8 HERÈ negative. Nothing showed on my mammogram in April, so it's come as a huge shock. I don't drink much, have never smoked and run 5k three times a week. I breast fed both kids. I'm 58.

At first they said the lump was 16mm, and that I'd have surgery and radiotherapy, but the MRI showed it to be 27mm with another small area near to it which they are going to biopsy. If that's also cancer, they'll say that together that makes a 30mm tumour. They also found cancer cells in a lymph node under my arm.

I'm having a CT scan on Friday evening. I was already terrified, and the prospect of the CT scan this is making it worse. I'm convinced they are going to find it everywhere.

I can't eat or sleep and feel like I've had all the stuffing knocked out of me. Both me and my husband don't know how to make it feel better. It just seems impossible and so so scary. I'm so scared.

I realise I'm lucky compared to those of you with small children. Both ours are grown, but I feel so guilty for putting everyone through such worry.

Sorry, I'm going on!

  • Hi Casey4jc, sorry to hear of your diagnosis. When I started my journey originally I was told I only had a lump in my breast. Ultrasounds didn’t pick any abnormalities up in lymph nodes. After I had one surgery they found it was in a sentinel node and therefore I had to have an axillary clearance. They found more positive nodes. By this time I had had 2 ops but no ct scans so I had no idea if it had spread anywhere else. I was petrified. I fully understand what you are going through. When I had my appointment with my oncologist I asked him if I could have a full body scan. He agreed. I had a full ct/pet scan. Waiting for that and then the results seemed to take forever and it was hard to focus on anything at all. It was only a few days between each. I was given a special fluid that they injected into my veins (didn’t hurt and no side effects) this was to pick up any activity as cancer cells are more aClive than regular cells. It wouldn’t detect miniscule cells but small clusters. Going for my results I was like a cat on a hot tin roof. Luckily it was all clear. There was some high activity around my op site but they said that was from the healing. Having the scan whilst scary is good as if anything thing is picked up early and treated. I know it difficult but maybe to take your mind off things treat yourself to a movie night, maybe go out with friends to chill or just have some nice walks together. I found walking a godsend whilst waiting on treatments and results. Looking around at the scenery and just letting my mind think happy thoughts.

    Wishing you all the best 

    Hugs from cuffcake 

  • Thank you for replying cuffcake. It stops me feeling so alone. The mind goes to very dark places, especially in the middle of a sleepless night.

    I'm so happy your CT was clear. What a relief that must have been. The doctor at least acknowledged that every day of waiting is like a year when I asked him how long until I find out. 

    I'm a catastrophiser at the best of times. This is going to be a journey that will perhaps change that aspect of my personality, though I doubt it Slight smile I'm so worried that the cancer will be everywhere.

    Thanks again. Yes, running does it for me, but perhaps I'll take it down a notch to a walk, as I'm so exhausted for fretting.

    Sending love xxx

  • Casey4jc - I just want to start by saying you are not 'going on'!  It sounds like you are feeling very much like me at the moment.  I'm also recently diagnosed but I don't have my mri until next week so I don't know fully what I'm dealing with.  My fears are very similar to yours.  I have found eating so difficult since I found out and have actually bought myself some of those slimming shakes (not because I am trying to lose weight - just because they are high in vitamins and minerals and protein).  Somehow, it seems easier to drink them than think about food.

    The rational part of my brain tells me I have to stay present, not allow my mind to take me into wild imaginings of what might be.  I know (believe me) how this is easier said than done.  This is one of the scariest things that can happen to any of us but, on this site (and other forums), there are a lot of success stories to give those of us who are still in shock and frightened out of our minds some hope.  It's so hard not knowing what will happen but maybe it helps to remember that where we are right now IS that we don't have all the information and it's not helping us when we go down the route of thinking we DO know and it's all bad!

    I'm sorry you are going through this, I'm sorry we all are.  I hope you can find some comfort in knowing you are not alone...

  • Hello there and I’m sorry you find yourself in this position. 
    I Catastrophise too! I could probably win a gold medal for it. 
    Have you tried writing a journal?

     This is something that was suggested to me some time ago and I’ve started writing everyday! It seems to clear my head a little. I rant and rave onto the paper and it seems to make me feel a little better.

     You’re most definitely not alone as I and many others have had the same thoughts and fears.

     Sending you a hug

  • Hi , I too have a lobular breast cancer have had a lumpectomy and node biospsies , it’s very scary when you first hear everything but I’m sure you will be given the best of treatment like myself it is a funny type as it does not show up on mammogram or ultrasound all of the time  ! I do hope all goes well ! Keep in touch and big hugs xxx Christine 

  • Thanks Christine. Wow, I'm so glad I've signed up to this forum Heart

    Big hugs right back x

  • That's a good idea, thank you Jax. 

    I had CBT a few years ago and the 'worry time' technique worked well for me.

    I was sobbing when writing my first post, but it is cathartic to get it off my chest (no pun intended Relaxed️). Perhaps I'll give it a go

    Sending you hugs too xxx

  • Triah, thank you. It is so scary, and it's hard to be out of control isn't it?

    I'm sorry to hear that you are having a similarly horrible time. Wishing you all the best with your treatment.

    It definitely does help to know you aren't alone Kissing heart

  • I have cried and cried!! 
    I think that maybe crying can been a good thing though and as you said, cathartic.

     Sending you my best wishes xxx

  • Hello casey4jc,  I am sorry to hear about your cancer diagnosis and I know it is a super difficult time and hard to stop the mind from just thought after thought.  It is a real brain drain and I wish that I had the cure for it.  From personal experience I was a mess and it took me time to sort it all out. It seemed just when I thought I had it all worked out some other great came along.  I did make it through sometimes kicking and screaming inside but this month marks my second year since  lumpectomy for stage 1 invasive in left breast and in February 2024 the lumpectomy on right side for DCIS.  Could have had both surgeries done at same time but I was not mentally prepared as wanted to see what the left breast issue that showed on MRI.  So then it was off to radiation and now in survivor mode.  Only beef now is I am on anastrazole and don’t like it.  
    Enough about me.  Lobular cancer is hard to spot in mammogram and if dense breasts also doubly hard. 
    Deep breathing helps the stress and I also watched comedy movies.  Gave a break.  
    Take care and as things move along and get more settled you will not feel so stressed and worried.

    Hugs to you.