Lobular cancer - awaiting tests and so scared

I've been diagnosed with lobular breast cancer and referred for MRI, bone and CT scan.  I have two positive axillary nodes.  I am so anxious and scared and breaking down all the time thinking the results will be the worst case. Finding it hard to cope. The tumour was 1cm but I'm thinking with lobular it could be so big it's inoperable and I wouldn't know.

  • Hi 

     

    I have also been diagnosed with Invasive lobular breast cancer last week.,23 cm on mammogram 33 on ultrasound -or the other way round ? 

    It is scary , sometimes I am rational but other times go into a panic. I had appointment with Oncologist on Thursday then they gave me a quick MRI appointmant which I had on Saturday.

    Did they say if yours was hormone positive ?-mine is . I have decided I am definately having a mastectomy even if lumptectomy will suffice.I really want a double matectomy but Oncologist wont agree at present.

     

    Sending you support x

  • Thanks for the message and so sorry to hear you're going through this too.  Mine is hormone positive and HER2 negative. I've read that this can be multi focal and bilateral so I think the safest thing would be mastectomy.  Have you any lymph involvement? X

  • Yes thats what I have read too , but they also say they are not fast growing.

    When I had checks at the breast clininc they said nothing showing on ultrasound for lymph nodes so didn't do biopsy there.Could still show on MRI though. Did yours show on ultrasound ? 

    The oncologist referred to mine as a small cancer so I'm sure yours wouldn't be inoperable. 

    They said two weeks for MRI results but I hope it will be sooner.

    I think the hormone responce is  a really positive thing.

    Have you looked at Victoria Derbyshire diaries at all , she had lobular and lymph node , it helped me to calm down a bit x

     

     

  • Yes mine showed on ultrasound so they did the FNA at the same time as the biopsy.  The doc said the cancer she can see is really small but expects there to be more on the MRI as it's reached the lymphs. 

    have you got a follow up appointment booked?

     

    I'll check out the Victoria D stuff - thanks for the tip 

    Xxx

  • Hi 

     

    No they haven't given me any follow up appointments yet.

    I hope you get your scans soon.Take care and let me know how you get on xxx

  • You too - keeping everything crossed for you xxx

  • Hi 

    How are you doing ? Any news on further scans yet ? 

    Mine has moved quite quickly now , they rang me on Tuesday to say they have the MRI results and can I see Oncologist today.

    He said MRI shows tumour 66cm -twice original size , but none shown in other breast -recomends mastectomy without immediate reconstruction, and lymph node biopsy ,which I Ok with. He gave me an operation date of 17 November.

    I asked if chemo and/ or radio also needed he said probably so going to be a long slog but at least I have a plan.

    Hope you are a bit further forward with some dates xx 

  • So pleased for you that things are progressing - you must feel so much better having a clear path to follow and a date for surgery already! 
     

    I have had 2 out of 3 scans but not yet received an appointment for the final one so this is really dragging and I'm constantly anxious.  
     

    Have they told you much about what surgery will be like? 
     

    thinking of you - keep me posted! 
     

    x

  • Thanks ,yes I feel there won't be anything new to worry about now till the op -they can't give me anymore bad news until after that -if there is some !

    Sorry you are still waiting , I would be the same , hope you will get the last one and the results and plan very soon.

    They said surgery will be about an hour and go home the same day , drains in for a week or so and have pre op assessment next week.

    Do you have children ?, I have a son who is 16 and autistic so hard to judge how its effecting him . My daughter is 21 and away at uni .We didn't know whether to tell her when I got the call back but decided she would want to know ,which she did and ia a great support to me.Thank goodness it isn't a hereditary type.

    Do you have any local support ? There is a group about half an hour from us so I may try that when I am ready.   

    xx

  • Wow, an hour and home the same day! That's amazing! 
     

    I have two children also - 10 and 3 - they don't know anything yet and I doubt the youngest will understand. I'm glad your daughter is supporting you. Can your son get any support? 
     

    I haven't looked up local support yet but it's a good idea.  
     

    I keep looking at my boobs and telling myself it's spread all over them - I'm pretty sure they've never looked perfect and they're pretty dense but I'm focussing on every blemish and bump not sure exactly how much mammogram and ultrasound can miss.

     

    xxx