Most people tell me that once they’ve had cancer, they never quite lose the internal ‘alarm bell’, when any new symptoms occur. For some people, it can become a cause of anxiety for months or even years after treatment has finished. For others, the anxiety does gradually fade, over time – although can still be a cause of concern, as routine follow up appointments and/or scans loom up.
Secondary or metastatic cancer has been in the news today. I’ve been reading an online article - ‘Unacceptable delays in diagnosing secondary breast cancer (BBC News, Oct 11th, 2019). In it, the reporter discusses research by Breast Cancer Now, surveyed 2,100 women with secondary breast cancer. They found that only 13% of the women had been told what symptoms to look out for, if their cancer had spread elsewhere in the body. The researchers also found that only 40% of the women surveyed had had their symptoms taken seriously before their secondary breast cancer was diagnosed.
Delays in diagnosis can mean delays in treatment. Whilst there’s no way of knowing if the delay makes a difference to the ultimate outcome, if symptoms are treated early, quality of life can be improved and maintained. Many cancers that cannot be cured can be managed with treatment. Lots of people are living with cancer that is more like a chronic long term health condition than terminal cancer. For example, there are approximately 35,000 people in the UK living with secondary breast cancer.
There are ways where you can ensure you are taken seriously when you go to the GP with new symptoms, after cancer treatment has finished.
Firstly, ask your specialist doctor or nurse what you should be looking out for, as signs that your cancer may have come back, or metastasised (spread). This is particularly important to check out at your final appointment at the hospital, if you are being discharged from the cancer follow ups. (often 5 years after your cancer was diagnosed…but sometimes you may be discharged back to the care of your GP earlier).
Secondly, whenever you do see your GP, with any new symptoms, even if they seem not cancer related – remind them that you have previously had cancer. For example, GP’s see many people with back pain in a day – but if someone has had cancer in the past, there’s a slight chance it could be metastatic (secondary) cancer which has spread to the bones. Whilst most symptoms you describe to the GP are likely to be non-cancer related, it is worth checking.
Symptoms to look out for
Some of the symptoms to look out for may be similar to those experienced when you were first diagnosed with cancer. They may easier to identify, as you’ll recognise them, and be able to alert your GP.
However, with metastatic cancer – it can spread to other organs. Depending on the type of cancer, it may spread to the bones, lungs, liver, lymph nodes, brain or skin.
Things to look out for and report to your doctor includes:-
- A cough that doesn’t go away
- Loss of weight which hasn’t been intentional.
- Fatigue (extreme tiredness which doesn’t improve with rest)
- Yellowing eyes/or skin (jaundice)
- Swollen abdomen
- New lumps in the body – it may be under armpit or in the groin, near the neck, or collarbone (this is where lymph glands are near the surface).
- Pain in the bone (s), which may be worse at night.
- Weakness/reducing mobility
- Feeling sick or being sick
- Brain symptoms – dizziness/weakness down one side of the body/mood changes/confusion or seizures./visual disturbances
- Lumps (nodules) and/or changes in skin, perhaps around surgical scar or other areas of the body.
(There is more detailed information on Cancer Research UK’s webpage – ‘Where cancer can spread’ )
Remember, very often new symptoms can be nothing to do with your previous cancer. However, detected and treated early, cancer which has spread can often be managed – whether it’s to shrink the cancer, stabilise it, and/or manage symptoms.
Emotionally, being told that your cancer has spread can be hard to hear. Your life focus may change – and learning to live with uncertainty about the future can deeply affect you, your family and friends.
Don’t sit on the anxiety and emotions that may be stirred up. Help and support is available – and you, and family and friends can come and talk to someone about the feelings the news has raised. Drop into your local Maggie’s Centre, and ask to speak to one of our cancer support specialists. There may be both practical and psychological reasons for your visit – or you may simply want to be among other people who understand. Maggie’s has benefit advisors who can help with some of the financial matters you may be concerned about too. Meanwhile, here online we have blogs, conversations, a place to keep a private journal, as well as advice and support available from both cancer support specialists and a benefits advisor.
Links updated April 2022
If cancer comes back (blog/Sue Long/Maggie’s)
Metastatic cancer National Cancer Institute
Understanding advanced cancer, metastatic cancer and bone metastases American Cancer Society
Why do some cancers come back? Macmillan Cancer Support
Coping with metastatic cancer Cancer.Net
Coping with metastatic Triple Negative Breast Cancer Triple Negative Breast Cancer Foundation