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Recurrence 13 years later

KT74
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Hi, I've just joined the group as I feel so worried about what's to come. I had breast cancer 13 years ago aged 33, 6 months after having my daughter. I had chemo, mastectomy (chose bilateral so to reduce recurrence) and radiotherapy. I found a lump on my chest bone (opposite side to previous). Since I've had biopsy, CT and MRI. Confirming it is and I also have a lump in my supraclavicular fossa which I can feel. It's taking weeks for the next step and haven't been told anything other than they can't operate and I will have systemic treatment. I was due to be discussed 9 days ago in the multidisciplinary meeting but wasn't, they now say it was yesterday. Still waiting for some sort of contact. I've left messages, breast care nurse replied after 4 days unsure who I was, left one this week, again no reply yet. I'm so worried. 

  • Hi KT74 and thanks for posting.

    I'm sorry to hear that you have a recurrence of breast cancer and you're waiting to hear about the next step.  It sounds like a worrying time for you.

    If the MDT meeting was yesterday, hopefully you will hear something this week.  I know you said you have left messages to try and get some information. 

    If you have a consultant's name, then ring their secretary via the hospital switchboard. I know that you also mentioned you had spoken to the breast care nurse, you could ask if they are able to help with finding out more about when you might hear about your results.

    If these two contacts aren't able to help you and you do not hear the results of the MDT this week, you could try contacting PALS at your local hospital, who may be able to find out more for you.

    Unfortunately we are hearing from lots of people that they are waiting longer for results and tests, which is frustrating for you.  Although it feels like such a long wait, hopefully it will not make a difference to your treatment.  I hope you have some family and friends around you who you can share your worries with, you might also like to have a look at Breast Cancer Now who can offer support for people with breast cancer. 

    You can talk things through with one of the nurses on our helpline if you would like to.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    I hope this is helpful and please get back to us if you need any more information or support.  

    Yours sincerely,

    Rachel

  • Offline in reply to CRUK Nurse Rachel

    Thank you for your reply. I finally heard from the hospital thanks to my husband helping. I know more now and am totally devastated, they can't cure it but will try to control it etc. i'm so afraid of how to talk to my kids about it. My daughter is 14 and sees me as her best friend. My middle son is 18 taking alevels. My eldest is 25, has dyspraxia. They know I have cancer again. I just think of the bad things how will they manage once I'm gone. I won't see my grandchildren. How will my husband manage. I just feel sick all the time. 

  • in reply to KT74

    Hello and thank you for getting back to us.

    I am very sorry to hear that your cancer has come back and I can appreciate that this must be a difficult and uncertain time for you and your family.

    There is support you can access for you and your children. You might find it helpful to look at the information on our website about talking to children, you can see it here. Also to look at the resources that you and your children can access in terms of books to read to them and by the children themselves, and the  charities that provide support look here  

    You cancer team will also be able to support you and tell you about the local support available to you and your family, so do talk with your specialist nurse about this.

    You are also welcome to get back to us if you need any more information or support and you may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline 

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