Waiting for a diagnosis

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I have adenomyosis, endometriosis and fibroids, I had an MRI in November 2024 to ensure nothing had been missed. In May 2025 I joined the waiting list for a hysterectomy. In November 2025 I found a large lump had developed in my pelvis, my GP reassured me this was likely one of the fibroids had grown but referred me through community diagnostics for an ultrasound which I had to wait six weeks for. Meanwhile an MRI in December 2025 for a back injury picked up this mass and my spinal consultant called to say they’d spoken directly to gynaecology and I’d been referred urgently, warning me the mass was unmissable and could be a malignancy. I had another MRI with contrast two weeks later, followed by an appointment with gynae two weeks after that. I was told the mri had been reviewed by MDT and showed a 10cm mass in my pelvis which has invaded into the myometrium of my uterus, that this has suspicious characteristics. I was told not a definite diagnosis but I need open surgery with an extended incision, that surgery is high risk of bleeding due to major arteries and adhesions, my cervix, uterus, tubes, and ovaries will be removed and they have to ensure no cells are spilt into my pelvis. I was told I need a ct scan with contrast of my chest abdomen and pelvis to check if anything has spread. Surgery was scheduled for four weeks later but was then cancelled the day before due to not having the full team available. Surgery has been rescheduled in four weeks. I would like to know now if the ct scan shows I am likely to face a cancer diagnosis. Is it reasonable to ask my consultant for this information? Is it normal to not be given a diagnosis at this stage? I want to be fully informed and to feel empowered to prepare myself mentally but I’m currently feeling like I’m not a priority and everything is out of my control. I’ve even wondered if I should go ahead with surgery at all now.

  • Hi Haybee

    Thank you for getting in touch with the Macmillan Support Line. My name is Gemma, and I’m one of the Cancer Information Nurse Specialists

    I am sorry to hear about the difficult time you are having.

    Getting a confirmed diagnosis requires investigations including scans and biopsies. Biopsies can be done prior to surgery or after a full excision is done.

    After the surgery they will be able to look at the tissue under the microscope to find out exactly what it is and to help them stage and grade it if required.

    We would suggest having another chat with your clinical team to help you understand what is happening and what they are suspicious of. Do you have contact details for them or a specialist nurse? They will be able to arrange this for you.

    It is normal to not have a conclusive diagnosis at this point but very reasonable for you to have a conversation about what they suspect and discuss further, we have information on questions to ask your healthcare team that might help you.

    If you are concerned about the support and communication you have received or the time frames of your procedures it can be helpful to contact your hospitals Patient Advice And Liaison Service,

    PALS provides help in many ways. For example, it can:

    • help you with health-related questions
    • help resolve concerns or problems when you're using the NHS
    • tell you how to get more involved in your own healthcare

     

    It is normal to feel uncertain about your future while you are waiting for answers, getting the surgery will help you to get clarity and support moving forward.

    Let your team know how vulnerable you are feeling so they can support you.

    You may find it helpful to know that other people have the same kinds of feelings as you. Visit our Online Community to talk with people who are dealing with cancer and share your experience. Our website can help you find local support groups.

    It can be helpful to focus on what you can control right now. This can help you manage any concerns about what might happen in the future.

    Speak with your team or by contacting your hospitals PALs service.

    I also wonder if you might benefit from giving our support line a call on 0808 808 0000, We often find we can explain our answers in a bit more detail over the phone, giving you the opportunity to ask more questions if needed. It can be very overwhelming not knowing how things might affect you moving forward. And although we can’t tell you exactly what to expect, we can help explain what usually happens for most people in a similar situation.

     

     

    I hope this information helps. Please feel free to get back in touch if you want further information or support.

    Best wishes

    Gemma,

    Cancer Information Nurse Specialist.

    You can also speak with the Macmillan Support Line team of experts by phoning 0808 808 0000, calls are free, and lines are open 8am-8pm, 7 days a week, or you can send us an email or use webchat.

    Ref GeS/

     

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