lobular breast cancer

Hi all, I was diagnosed with lobular breast cancer in feb this year, 2.5 cm, then had MRI which showed 2 more very small bits but as they were all within a 5cm radius, i was told i needed a mastectomy and a sentinal lobe biopsy, I had this with reconstruction op on the 2nd March.

Been through the ups and downs, 2 drains in regular trips to see cancer nurse but then sadly on 20 march i developed an infection and had emergency surgery, to remove implant and had to stay in hospital on iv antibiotics and was left bewildered and a massive wound and in so much pain. 

Consultant, who has been brilliant and even came in to do the surgery, whilst corona virus was just starting, informed me that she had also  removed 4/5 lymph nodes, that possibly have cancer in too. she the told me that the cancer had spread to my breast surface tissue, so i needed to chemo and radio, when my wound has healed.

Before i left hospital i had a ct scan to chest abdominal and pelvis to see if the dreaded C had spread. I have been keeping busy and i have a positive mind but .... been informed today that i'm going to get a phone consultation tommorow with the results :(((  Has anyone on here been through anything similar to this ? Oh and sorry for the long post !

Helen aged 50

xxx

 

 

 

  • Hi Helen,

    I had masectomy and Lymph node removal in Dec 2019. I had IDC invasive ductal cancer and there were cancer cells in 2 lymph nodes. I also have 3 enlarged lymph nodes on my chest wall, these can't be biopsied so may or may not be cancerous. My surgery has healed well, just feels tight sometimes and I manage with a prothesis in a masectomy bra. I have completed 3 cycles of chemo, with 3 more to go. The 1st one was I was nervous but the nurses look after you. The first 2 were manageable but the 3rd I had Neutropenia ( low white cell count) and ended up in hospital for 4 nights, bit scary with Covid around but I tested negative. I will have 3 weeks of radiotherapy after my chemo to target the chest wall nodes. This is just my story as everybody is different, but I find it does help to know there are other people that understand what you are going through. 
    Wishing you all the best,

     

    Silver 

  • Meant to say, my hair fell out on the first chemo, it's strange, but I was fitted with a wig and bought scarves and caps from annabandana.co.uk online

    Silver 

  • Hi Silver,

    Thank you for your message, I have just read your profile and boy you have been through a hard time.

    Im still waiting for a date to start my chemo and my ongologist has arranged for me to have my bloods done, away from main hospital. 

    I'm aware of what i'm going to face but sadly because of this nasty virus, I can't be with my family and friends but I'm thankful to the NHS for all they have done to help me so far and to what i'm going to recieve in the next few months.

    Hopefully keep in touch Siver and I hope your road will be alot smoother from now on.

    Helen

    xxx

  •  

    Hi Helen,

    You were lucky to have been allowed a visitor for your second surgery, as I believe that most hospitals don't allow any visitors now. 

    Between the two lots of surgery, it certainly will have been quite a time that you have been at home. I hope that you are coping ok with the isolation. Does your son live with you? This might make life a little less lonely.

    Keep doing your exercises, but don't worry about the cording until your breast is well and truly healed. This would include any further reconstruction wounds.

    Kind regards,

    Jolamine xx

     

  • Hi Jolamine,

    Yes my youngest son lives with me and I do have a partner, they are both very understanding and have put up with me being poorly, ( not a good patient ).

    Wore a bra all day yesterday and stayed comfortable, which is a good sign. Also had bloods done and had a call to tell me chemo will start on 29th April, which is my eldest son's birthday and my favourite number, so hopefully all will be ok.

    Hope your ok and keeping well ? 

    Kind regards

    Helen

    xxx

  •  

    Hi Helen,

    I'm glad to hear that you are getting well supported by your partner and your youngest son. It's a good sign that you were able to wear a bra for a full day and stayed comfortable. It is great to have a start date for chemo now. Fortunately, it is not far away. I hope that your favourite number and your eldest son's birthday act as good omens and, that it all works out well.

    I am keeping well thank you.

    Kind regards,

    Jolamine xx

  • Hi Jolamine,

    Thank you for kind message, yes let's hope so, not looking forward to it but grateful to my local nhs it's still going ahead. I will let you know how i get on.

    Kind regards

    Helen

    xxx

  • Waiting for that phone consultation is awful isn it x goodness you have really been through it Helen, I'm at the guessing what cancer I have I think mine is agressive and in my breast skin line you said .my lump is 3.5cm nothing in my lymphs but I only had a mamogram an ultrasound and a biopsy which they inserted a metal marking clip .

    I haven't got upset or morbid I'm very pragmatic but I'm scared of going through this on my own it's the small things but I musnt dwell on that and I must be positive as it is what it is I can't change it just move forward. Your amazing to reach out to me tryst us to get to be in the club no one wants to be in then to top it by it being in the midst of a bloody pandemic ... I'll be here for you also thankyou again love Kelly x

  • Hi Kelly,

    I know this bloody virus is awful and from Wednesday I won't be allowed to go out at all, when your on chemotherapy your immune system is so low and you can pick up just a sniffle and you can end up in hospital. I soooo miss my family and I have 3 granchildren, who I usually look after during the week but have only seen them from their windows. 

    Hopefully you will hear from your consultant tommorow and then at least you will know what your next steps are going to be. Again if you ever need a chat or a moan, I'm always here for you.

    Let me know how you get on and stay safe. xxx

    Helen xxx