Newly diagnosed but decisions are not being made

hello! 

I discovered a lump in my breast on 21st August. I was referred to the breast clinic and seen within a week and a week later I was diagnosed with breast cancer. I have a strong family history of breast cancer and my mum and cousin have the brca2 gene. I was referred for genetic testing but an admin error meant I waited a month and then they declined my referral and referred me to another genetics clinic putting me to the back of the queue again. The query over whether I too have a faulty gene is delaying decisions over treatment and surgery. Initially I was offered a lumpectomy and radiotherapy but when they looked into my family history more they felt that they needed more info and so offered me chemo and then surgery, however 7 weeks from referral I’m still waiting for a decision and dates around when things might move forwards. The waiting is awful and I feel in a total limbo at the morning. The ongoing delays and wait are also making me very anxious as the cancer is still left untreated/removed. What should I do? Is this normal and do I just have to sit it out? 

  • Hello Bluedime82

    I'm sorry to hear about your diagnosis of breast cancer back in August and that due to a number of different factors, you still don't have a treatment plan. It's perfectly understandable that you're feeling so very anxious about things. 

    Have you been given the contact details for the breast care nurses in the team? You can call them to ask for an update and explain how difficult and worried this delay is making things. They may be able to offer some reassurance. Alternatively, you could contact the hospital PALS team. It's part of their role to help resolve concerns or problems when you're using the NHS. 

    At what is already a difficult time, you shouldn't have to be with unanswered questions and uncertainty. If you think it might help to talk things through with one of our nurses for some advice and support, you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. I know they will be happy to listen and offer any information and guidance they can. 

    I hope that you have some answers soon Bluedime82. Keep in touch and let us know how you get on. 

    Sending my best wishes, 
    Jenn
    Cancer Chat moderator 

  • Unfortunately my breast cancer nurse is on annual leave at the moment. I am aware that I can speak to the rest of the team and have some. I spoke to them yesterday and they advised that I’ve been referred to oncology but there is an up to 5 week wait just for the first appt. This would take me to 10 weeks past referral and then likely a further wait to start treatment. Living like this is awful! I am a single parent of two children and cannot plan or commit to anything at home or at work. The anxiety it’s causing is awful!