NHS wait times for recent diagnosis

I got a recent diagnosis of Non Hodgkins Lymphoma at 22 years old. 

I had my first ultrasound of the lump in my armpit (5th of January) at the Breast clinic in outpatients ward, where they found underlying lumps, took biopsies and told me they believed it to be Lymphoma and I would get a call on the 16th after 4pm. After waiting until around 4:30PM I decided to call them instead, and was told I will get a call back - which eventually came, close to 5PM - where i was told that the biopsies had not been processed correctly so I would get a call to come back up for more biopsies. I went back on the 19th January for more biopsies and waited until the 30th to hear back with a diagnosis of Non Hodgkins Lymphoma, but she could not tell me much more because she is breast clinic and it would be haematology that will contact me. 

I then waited a full week with no phone call, and no support, before calling to the Haematology department on the 6th February, where I was met with an aggressive tone from the receptionist, who gave me no assistance other than telling me my name wasn’t on their system, and putting me through to outpatients who put me through to Breast Clinic - again, unhelpful. 

The latest update was today when I once again called the Haematology department myself, where the receptionist again told me there was nothing on the system for me until I explained how long i’d been waiting and she checked the calendar and told me I had an appointment on the 20th of this month, and the letter was sent on Monday when I had spoken to the other receptionist. 

Has anyone else experienced this? 

  • Hello Abbymax2000

    I'm sorry to hear that you've been experiencing such poor communication whilst waiting for your biopsy results. It's understandable that this may have left you feeling frustrated and worried about your diagnosis and the next steps. 

    I know that we have had members post here in the past who have found similar delays and frustrations when being transferred from one department to another. Hopefully, now that you have your appointment date for the 20th you'll get the answers you need and be able to start moving forwards. 

    In the meantime, if you have any further problems, or want to feedback to the hospital trust about the problems you've experienced, then do contact the PALS team. Part of their role is to help resolve concerns or problems when you're using the NHS. 

    If you'd like to chat with one of our nurses about any questions you have ahead of your appointment on the 20th you're welcome to call them on 0808 800 4040, Monday to Friday 9 am to 5 pm. 

    Keep in touch and let us know how you get on. 

    Best wishes, 
    Cancer Chat moderator 

  • Thank you Jenn! I am hoping it starts to become a quicker process after this next appointment

  • Hi Abby, I hope things start getting quicker for you. It sounds really stressful that you're having to chase them around and waiting through all this limbo after having this diagnosis. Especially only being 22. I hope others in the same situation as you reach out and can give you advice.

    Also, I've heard Teenage Cancer Trust provide support dedicated to 13-24 year olds so it might be worth contacting them. Do you have family or friends helping you through this or are you able to kind of distract yourself (which must be so hard!) with a hobby or by watching movies. 

    I'm hoping you get answers soon and things can go as well as they can for you.

  • Hello AbbyMax2000, 

    I hope it's going much better now and you have a secure point of contact who is a bit more helpful but I thought I'd write this just in case, to let you know that you're not alone in the experience <3 I'm 21 and just got diagnosed with Stage 1 melanoma. I think the wait times and communication has been a bit of a s**t show at least in my pretty limited experience. I ended up waiting around 3 months in the end for my biopsy results and there was lots of miscommunication from different people in the hospital everyone is trying there best but it has been pretty stressful but I do think I've found a point of contact who is fairly reliable as they have assigned me a specific skin cancer specialist nurse who I can leave a message for whenever. I don't really know how it works but I ended up calling my GP and asking for her to advocate/ check in with the hospital on my behalf which was quite reassuring as it at least felt like someone was hearing the anxiety so maybe you could try that ?

    Take care,