Waiting

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I was diagnosed with stage 3, ER positive breast cancer in February. During my first meeting with the surgeon I was told they found cancer in my breast and lymph nodes. The planning of my treatment was postponed because I needed another biopsy in my breast and because I complained about pain in my chest and shoulder, I was also referred for CT scan. Scan showed something in the middle of my chest they wanted to double check, so I was referred for a PET scan. At the same time I was to start my hormonal treatment (Zoladex injections and Letrozole tablets). PET scan showed tumour on my thymus gland doctors in breast clinic decided to refer me for another biopsy to cardio-thoracic team. They send urgent referral on 4/04/2025. And I’m still waiting. I called hospital today and was told that email from my doctors is with the surgeon since last Monday. It’s been a month since my PET scan and over 2 month since my diagnosis. I’m starting to feel really anxious that even after such a long time I know very little about my illness and have no plan of treatment . I’m afraid my chances are getting smaller with every passing week. Is it normal to wait for so long?

  • Dear Herbivorous,

    Thank you for getting in touch at such a challenging time, and welcome to our online community. My name is Annerose I’m one of the Cancer Information Nurses here at the Macmillan Cancer Support line.

    I am sorry to hear about your recent diagnosis, and the need for further investigations. This must have come as a huge shock. It is understandable to worry about cancer waiting times, especially as you have been diagnosed with breast cancer, and now waiting for further test to check the finding of the PET-CT of your chest.  

    There are waiting time guidelines which state, a 62-day treatment plan aims for patients to start their treatment within two months or 62 days of referral, or no more than 31 days after a treatment plan has been agreed between the patient and the doctor.

    You mentioned you were to start on Letrozole tablets  and Zoladex injections, it not quite clear if you have started on this treatment for the breast cancer, or if this has been postponed until you have seen the cardio thoracic team.

    It might be a good idea to contact your breast cancer nurse, if you have one, or the consultant via the secretary and ask them about this. They might also be able to chase up the appointment with the cardio thoracic team for you.

    Have a look at our tips for talking with the healthcare team and use this to best prepare you for a consultation.

    Living with uncertainty can be difficult and it may be helpful to have an outlet for your concerns. I hope you have some support from friends or family currently. It’s a good idea to take someone with you to appointments if you can so you have someone else there to help understand information given and to provide some emotional support as it sounds like it has been an incredibly tough time so far. There are ways to help you to cope with breast cancer diagnosis emotionally  and I can see you have joined the  Macmillan breast cancer forum and I hope that is useful. There is also a Breast Cancer  Now Forum  which may be of interest to you.

    I hope this has been helpful, but please don’t hesitate to get back in touch if you need any further information or support.

    Best wishes and take care 

    Annerose (Cancer Information Nurse Specialist) 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Ref/ AM/ LB