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My mum was diagnosed with stage 4 lung cancer in Dec 2018. She's had 3 rounds of the same chemo and 1 lot of radiotherapy. During the treatment the cancer spread to her adrenal glands. She's last finished her treatment in Sept last year and then had a Ct scan showing it had shrunk, but not gone. She had another Ct scan in December and saw her consultant last week. The scan shows the cancer has doubled in size since her treatment has stopped.
They gave mum 2 options either to have more chemo, but it would be a stronger one this time and make her poorly or to do nothing. She didn't want any more chemo cos of how it made her feel so she has chose to do nothing and make the most of the time left.
What I would like to know is does this know diagnose her as terminally ill? How do we know what's happening with mums cancer now? Without regular scans we won't know? Sorry for the long email I'm just so confused.
Thanks for getting back in touch. Making decisions about bringing treatment to an end is never easy but there’s no wrong answer. Your mum has made the right decisions for her and it’s only natural to wonder what this means for her.
The use of the word terminal can be confusing, and it can mean different things to different people. Marie Curie offer this explanation:
A terminal illness is a disease or condition which can’t be cured and is likely to lead to someone’s death. It’s sometimes called a life-limiting illness
People with a terminal illness may live for days, weeks, months or sometimes years. It can be difficult for doctors to predict how long someone will live for. This can depend on their diagnosis and any treatments they may be receiving.
It’s understandable to ask how your mum will be monitored without regular tests. Her doctors will want to know about any changes to her health, and about any new or worsening symptoms. This is so they can assess if health changes are being caused by the cancer or if they are as a result of something else. Examples of this are infection, anaemia and dehydration. Her doctors will agree with her the best way of managing conditions that affect her health.
We often find when someone isn’t having regular tests that their day to day abilities can be a good indication of how they are doing. If we see occasional changes and they are eating and drinking and looking after themselves with little help their condition is stable. When they become more dependant on others and spend less time being active this can be a sign that their condition is deteriorating. But this is not a straight forward situation as often people will decline then have periods of stability. The important thing is always to have any changes reviewed as soon as possible.
It is important to find out who the key person is to contact if you see changes in your Mum’s health. Your Mum may find that her hospital team will advise they won’t see her regularly, to make her GP the first point of contact. This is common and not because she is being forgotten by them, but to make life easier for her. If needed her GP can contact her specialist for advice.
There might also be other community-based health care teams that can help too. Her GP will be to advise about this and make referrals for their support. Many people benefit from Community Macmillan or Community Palliative Care Nurses. Irrespective of their title, they help with managing symptoms and provide emotional support. Having this type of nurse isn’t indication that someone is at the end of life. They can be involved at any stage in someone’s care.
Our guidance, Looking after someone with cancer, might be good to read. You might not need this just now but it’s helpful to know it’s there.
It’s only natural to want to give your mum as much care and support as possible. Very often we put our own needs on hold, this often feels the right thing to do. But it is important to look after yourself too. Having time to recharge your own batteries can be the very thing you need to be there for your mum.
Our groups, supporting someone with an incurable cancer and carers only might be invaluable for being in touch with others in a similar situation.
Would you consider calling the support line? Our nurses would be happy to hear from you. Sometimes sharing a bit more information can allow us to offer further information and see what other support we can offer.
I hope this helps to make things a bit clearer and if we can help further don’t hesitate to get back in touch.
Take care, Linda (Cancer Information Nurse Specialist)
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