Primary Mediastinal B Cell Lymphoma

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My 32 year old daughter was diagnosed over two weeks ago, so we are new to all of this and trying to get our heads around it. I am also a well qualified nurse, but have googled this until I can’t google anymore. 
I want to know what the survival rates are and prognosis?? I know that’s difficult to answer but….. any advice would be appreciated. We have to have hope. She doesn’t have children and 4 days before got engaged. My hopes and dreams for her are in tatters. 
She is fit, active and healthy and is such a shock to all of us. 
Many thanks 

  • Hi Lady P,

    My name is Keith and I’m one of the Cancer Information Nurse Specialist’s

    Welcome to the  online community.

    I can only imagine what is going through your mind right now.

    No matter what age your kids are we all never stop worrying about them no matter what the situation.

    Being a qualified nurse in this situation can be both helpful and troublesome.

    You must remember although it can be helpful having a clinical background it so different when any diagnosis affects one of your own especially with this being your daughter, regardless of her age. So be mindful you’re the mum here and you will need support too. I know this is probably the last thing on your mind right now.

    Primary mediastinal large B-cell lymphoma (PMBCL) is a type of non-Hodgkin lymphoma ). It is sometimes called primary thymic mediastinal lymphoma.

    PMBCL develops when B-cells become abnormal (cancerous). B-cells are white blood cells that normally help fight infection. They are sometimes called B-lymphocytes.

    The abnormal B-cells (lymphoma cells) usually develop in a part of the lymphatic system called the thymus gland. They then build up in lymph nodes behind the breastbone and between the lungs. This area is called the mediastinum. It contains:

    • the gullet
    • the windpipe
    • the thymus
    • the heart
    • some large blood vessels
    • some lymph nodes.

     

     PMBCL usually responds well to treatment. Your daughter may also  take part in a clinical trial as part of her treatment. However, everyone is different

     

    But if her diagnosis doesn’t respond well to treatment or if the lymphoma comes back, your daughter may need further treatment. Looking at this information will explain this in more detail

     

    Survival statistics is a question that is often asked and yes, it’s very difficult to give an exact answer to this as you have said.

     

    It depends on many different factors. Such as other health conditions how the individual reacts to treatment.so with your daughter generally being fit and healthy may be a positive in regards to treatment options.

     

     Looking at the statistical evidence on Cancer Research UK may be helpful but you can’t pigeon hole any individual into these statistics, as there are so many variables involved.

     

    The best person to talk to would be your daughter’s haematologist who will give their educated opinion on her prognosis and outlook. But this is still what you might call an educated guess/opinion for want of a better word.

    In some situation people don’t want to have this information, it’s an individual choice, there is no rule book in how anyone manages a diagnosis/situation like this.

     

    On this platform it can be difficult to have a two-way conversation and to fully understand what you are going through.

    If you’d like further explanation or have any other questions, please feel free to recontact us. Or if you it may help to discuss things with someone outside the loop please feel free to give us a call or contact us via our web chat platform.

     

    take care

    Keith, 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 KM/HG