diagnosis

Diagnosis is a life-changing word - for you or someone you care about.

While everyone's experience is different, there are some common experiences. You might experience isolation, grief, anger, fear, sadness, resentment and being swept up. Many people experience shock and find it hard to ask questions or remember information. There’s a lot to think about (for example, finances, work, family, pets). 

We also know that health providers aren’t always ready or confident to support queer bodies and identities, and not everyone can or wants to come out to their health providers (read more in coming out to health providers). 

In this section, we share what to expect, questions to ask and what could help.

  • You might have to wait for your diagnosis and the results of different tests (e.g., biopsy, scans, and genetic testing). Some treatment decisions must be made quickly, and others can be delayed while you consider what’s best for you.

    “You don’t always have time. You’re reeling from the fact you found out - and then suddenly, you’re having surgery, you’re at home, trying to work out your job, organise food to get delivered, get deep freezer so friends can bring meals, organise a roster of people to come and drop in.”  

  • The shock of a cancer diagnosis can make it hard to ask questions and remember information, especially for some neurodivergent people. 

    Learn about shock. 

    So, it can help to:

    • take a breath and process with your people 

    • have someone with you (if you can)

    • write down questions before your appointment and after for next time (you might do this with your support person, or people) and bring paper and a pen 

    • record appointments if you can (if you have a disability, let the provider know this is an accommodation you need).

    If you need a translator or interpreter, you might bring someone you trust. 

    knowing what and who matters 

    We heard that people sometimes lose connection to who they are through cancer treatment and wished that had been different. Preparing for appointments, you might ask yourself: Who am I? What’s important to me? Who’s important in my life? You might ask your people to remind you of those things through treatment.

  • Friends and family often want to help but might not know. They might not know how to help (see: for carers, friends and supporters.) Cancer can be an isolating experience, especially for single people and people without friends and family.

    Care can come in many forms. From friends and family, from other people going through cancer, from the broader LGBTQ+ community, from culture or faith, from the medical system, from complementary therapies or from somewhere else. Everyone’s experience is different. And, we know that some people will face isolation and a lack of care from the people around them. 

    drawing on the strengths of others 

    Our communities have rich histories of mutual aid, resource sharing, care-giving outside the medical system and leaning on each other when we need support. We also heard that connecting with others with lived experience of cancer can really help, during treatment and after (see: support groups).

    If you can access a GP or other primary health provider you can trust, this person can support you throughout planning and having treatment to help manage your medications, communicate with specialists, send referrals and help you manage the treatment side effects. You might want to book a regular appointment with them throughout your treatment.   

    navigating romantic relationships and caregiving 

    There’s often an assumption that your partner/s will be your carer/s through treatment. 

    It might be useful to have a conversation about:

    • what they can and can’t do

    • the other kinds of support you might be able to draw on 

    choosing who you tell and how 

    Some people will choose to tell just a few people they have cancer, while others tell many people. Some treatments will change the way you look and feel, so you might want to explain that to your people so they can understand what you’re going through. Telling some people in your workplace might be important to access leave and other accommodations. Read more in: choosing how to tell and how

  • You (or someone supporting you) might ask: 

    • Do I have choices in my treatment? What are they? 

    • What will happen to my body and mind as a result of this treatment? 

    • How is my life going to change? 

    • What is the treatment and how does it work?

    • What would happen if I didn’t get this treatment? 

    • Who can I talk to? Where can I get support?see: community support

    • What are your experiences treating my kind of cancer? 

    • What will I need to know at each part of my treatment?

    Coming out. Not everyone will be comfortable coming out to their health providers (read more on coming out to health providers). Sometimes telling health providers might help you to access specialist support. Other times it might not be safe or possible. If you are comfortable sharing who you are, you might ask: 

    • Do you have services that support me?
      E.g. a social worker from community, an LGBT specific advocate  

    • Can you update my records with my gender, pronouns and preferred name? 

    • Who will see my deadname and sex assigned at birth? 

    • Who can I talk to if I’m not satisfied with my care?  

    • What will you do to contribute to my sense of safety?

  • Cancer stages are usually indicated by the numbers 0 through 4. Higher numbers indicate a more advanced cancer. Read about stages and grading from the Cancer Council. Or, visit EviQ for treatment information for different cancer types

    During your diagnosis, you have the right to: 

    • seek a second opinion 

    • share who you are and be met with understanding 

    • ask questions about your choices and treatment 

    • not choose treatment, if that’s what’s right for you 

    read more in your rights

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