Being told you have Leiomyosarcoma (LMS) changes your world in an instant.
One moment life may have felt relatively normal. The next, you’re hearing unfamiliar medical terms, attending hospital appointments and trying to process a diagnosis you may never even have heard of before.
Alongside the physical aspects of cancer, there is often an emotional journey too.
If you’re finding that difficult, please know that you’re not alone.
There is no “right” way to feel
People respond to a cancer diagnosis in very different ways.
Some feel frightened.
Some feel numb.
Some want to know everything immediately, while others need time before they’re ready to read or ask questions.
You may even find your emotions change from one hour to the next.
All of these reactions are completely understandable.
There is no right or wrong way to respond to a life-changing diagnosis.
Feeling overwhelmed is normal
A Leiomyosarcoma diagnosis often brings a huge amount of new information in a very short period of time.
Hospital appointments.
Scans.
Treatment discussions.
Medical language.
Decisions.
It’s a lot for anyone to process.
If you’re struggling to remember conversations or feeling emotionally exhausted, that doesn’t mean you’re not coping. It simply means your mind is processing something significant.
You don’t have to have all the answers today
Many people put pressure on themselves to immediately understand everything about their diagnosis.
In reality, very few people do.
It’s okay to take things one appointment at a time.
It’s okay to read information gradually.
It’s okay to ask the same question more than once.
Learning about Leiomyosarcoma is a journey, not something that happens overnight.
Accept help when it’s offered
Many friends and family members genuinely want to help but aren’t always sure how.
Sometimes practical support can make a real difference.
That might be someone driving you to appointments, collecting shopping, helping with meals or simply sitting with you over a cup of tea.
You don’t have to face everything on your own.
Accepting help is not a sign of weakness. It’s allowing the people who care about you to support you.
Looking after your emotional wellbeing
There is no single way to cope, but many people find it helpful to:
- Talk openly with someone they trust.
- Write down questions before appointments.
- Take breaks from searching online.
- Focus on reliable sources of information.
- Continue doing small things they enjoy where possible.
- Speak to their healthcare team if they are struggling emotionally.
Your emotional wellbeing is just as important as your physical health.
Living with uncertainty
One of the hardest parts of a rare cancer diagnosis can be the uncertainty.
Waiting for scan results.
Waiting for treatment.
Waiting for appointments.
Although uncertainty is difficult, remember that your healthcare team is gathering the information needed to recommend the most appropriate treatment for your individual circumstances.
Taking one step at a time is often more manageable than trying to think too far ahead.
You’re not alone
One of the reasons Leiomyosarcoma Research UK exists is because people affected by LMS recognised how isolating a rare cancer diagnosis can feel.
Our charity was founded by patients who wanted to improve awareness, support research and ensure future patients and families had access to better information and support.
Although Leiomyosarcoma is rare, there is a growing community of patients, families, healthcare professionals and researchers working together to improve outcomes and ensure nobody feels forgotten.
Be kind to yourself
There will be good days and more difficult days.
There will be times when you feel hopeful and times when you feel anxious.
That is all part of being human.
Try not to judge yourself for how you’re feeling.
Give yourself permission to take things slowly.
Celebrate the small victories.
Ask for help when you need it.
And remember that you don’t have to face Leiomyosarcoma alone.
Related articles
- I’ve Just Been Diagnosed with Leiomyosarcoma. What Happens Next?
- What Questions Should I Ask My Consultant After a Leiomyosarcoma Diagnosis?
- Why Have I Never Heard of Leiomyosarcoma Before?
- How Rare Is Leiomyosarcoma?
Please remember: If you’re finding the emotional impact of your diagnosis difficult to cope with, speak to your consultant, Clinical Nurse Specialist or GP. They can discuss the support available to you, including psychological support and other services that may help. Looking after your emotional wellbeing is an important part of your overall care.