A diagnosis of Leiomyosarcoma (LMS) can leave you with lots of questions and very little time to think of them.
It’s completely normal to leave an appointment and remember something you meant to ask once you’re back home. Many people find that the information shared during those first few consultations can feel overwhelming.
There isn’t a perfect list of questions, and every person’s situation is different. However, having a few written down before your appointment can help you feel more prepared and make it easier to understand what lies ahead.
Understanding your diagnosis
Your first questions may simply be about understanding your diagnosis.
You might like to ask:
- Where in my body has the Leiomyosarcoma developed?
- Has the cancer spread anywhere else?
- How confident are we about the diagnosis?
- Are there any further tests or scans needed?
Your consultant should be able to explain your diagnosis in a way that you understand. If anything isn’t clear, don’t be afraid to ask them to explain it differently.
Understanding your treatment options
Treatment for Leiomyosarcoma varies depending on where the tumour is, its size, whether it has spread and your individual circumstances.
Some helpful questions include:
- What treatment do you recommend and why?
- What are the aims of this treatment?
- What are the possible benefits and risks?
- Are there any alternative treatment options?
- How soon will treatment begin?
Remember that treatment decisions are made based on your individual circumstances, so the experience of another patient may be very different from your own.
Your specialist team
Because Leiomyosarcoma is a rare cancer, you may be referred to a specialist sarcoma centre where healthcare professionals have experience treating sarcomas.
You may wish to ask:
- Am I being treated by a specialist sarcoma team?
- Will my case be discussed at a multidisciplinary team (MDT) meeting?
- Who will be involved in my care?
Knowing who is looking after your treatment can help you feel more informed and reassured.
Looking ahead
Many people also want to understand what happens after treatment.
Some questions might include:
- What happens after my treatment finishes?
- How often will I have follow-up appointments or scans?
- What symptoms should I report between appointments?
- Who should I contact if I have concerns?
Not every answer will be available immediately, but understanding the plan ahead can help reduce some of the uncertainty.
Asking about research and clinical trials
Research into Leiomyosarcoma continues to develop and your consultant will know whether any research opportunities or clinical trials may be appropriate for your individual situation.
You may wish to ask:
- Are there any clinical trials that might be suitable for me?
- Has genomic testing been considered in my case?
- Are there any new treatments that may become available?
These questions won’t be relevant for everyone, but they can open useful conversations with your specialist team.
Remember, there are no silly questions
Your consultant and healthcare team understand that this is a life-changing diagnosis.
They expect patients to have questions and would much rather you ask than leave an appointment feeling uncertain.
Many people find it helpful to:
- Take a notebook to appointments.
- Write questions down beforehand.
- Ask someone they trust to come with them.
- Take notes during the discussion.
- Ask for medical terms to be explained in plain English.
If you think of questions after you’ve left, write them down ready for your next appointment.
One appointment doesn’t need to answer everything
It’s easy to feel pressure to understand everything immediately, but that simply isn’t realistic.
Your understanding will grow over time as you meet different members of your healthcare team and learn more about your diagnosis and treatment.
Be kind to yourself. You don’t have to remember everything after one conversation.
Related articles
- I’ve Just Been Diagnosed with Leiomyosarcoma. What Happens Next?
- What Is a Specialist Sarcoma Centre?
- Understanding Your MDT Meeting
- What Do All the Medical Terms Mean?
Please remember: Every person’s diagnosis and treatment plan is different. This article is intended as general information and should not replace advice from your consultant or specialist healthcare team.