Cancer has come back - what does it mean?
Today I thought I’d talk to those of you with cancer that has returned - cancer recurrence and secondary (metastatic cancer). Sometimes, it may feel as if you’re the forgotten ones, as a great deal of attention is spent on the initial diagnosis and treatment, but occasionally less support around if the cancer comes back.
When you’re in the midst of a new cancer diagnosis, and going through treatment, the last thing you want to think about is the chance that it may come back or spread. I’m aware that following cancer treatment, the uncertainty around your cancer possibly returning can cause sleepless nights, and a good deal of psychological disturbance. The further you get away (in years) from your original diagnosis, then the chances of recurrence lessen, and the worries may recede…
For some people, however, the cancer can recur. The Cancer.Net website notes that ‘a recurrence occurs when the cancer comes back. Cancer recurs because small areas of cancer cells may remain undetected in the body after treatment. Over time, these cells may multiply and grow large enough for tests to identify them. Depending on the type of cancer, this can happen weeks, months, or even many years after the primary (original) cancer was treated’.
You may hear of cancer recurrence being ‘local’ – which means it has grown back in, or close to the original cancer site, and hasn’t spread to other parts of the body. Meanwhile, ‘regional’ recurrence means that the cancer has come back in nearby lymph glands or surrounding tissue (to the original cancer). When a recurrence is defined as ‘distant’ it means the cancer has spread, and developed in a different part of the body – away from the original cancer site.(e.g. the lungs, bones or liver). This is more likely to be defined as ‘cancer metastasis’, ‘secondary cancer’ or ‘advanced cancer’.
Sometimes, a cancer may be classed as ‘progression’ rather than ‘recurrence’. This may be if the cancer reappears fairly quickly after the original treatment. If cancer returns after a year or more, then it is more likely to be recurrence.
Living with cancer recurrence
This can all sound academic and distant when spoken of in theoretical terms. However, the emotional aspect of this news can cause significant distress, when it’s happening to you or someone close to you. Whilst some people tell me that they have been almost expecting such news at some point, it can still reawaken those original fears felt when originally diagnosed. Ironically, to some degree, the emotions may be a little easier to manage this time…as many of you will have developed coping strategies over time, having got through the initial diagnosis and treatment. Alternatively, it may trigger questions, fears and uncertainties about the future, which you had hoped you would not have to face.
It’s tempting to feel pessimistic when being told that the cancer is back. However, there will, in most instances, be treatments available to help suppress the cancer, achieve remission, treat symptoms, and begin to feel well again. It will depend, in part, on a number of factors – the type of cancer, your general fitness, how much it has spread, where and when it recurs, etc. It may be that this time you’re offered different treatments to those you had originally. You can also ask about clinical trials available. Treatments change and develop rapidly, and since your original cancer there may be some new approaches to consider.
Ironically, for many, particularly those with local recurrence, you will have treatment and go on to live for years to come. Some of you will be living a similar life to anyone facing a chronic illness, with spells of feeling well, and times when you may need further treatment. For a few of you reading this, however, treatment options may be more about holding the cancer at bay and treating symptoms. It sets a different set of thoughts and challenges, facing the possibility of dying from the cancer ultimately. Sometimes it can feel more isolating, as people may shy away from talking about such things with you. Opening conversations about living with cancer that is here to stay, with your family and friends, can be helpful - for them, as well as you.
For more information on recurrence, and secondary cancer, I have signposted a few websites at the end of the article. You are also very welcome to drop into any of our Maggie’s centres, or message here online for support and information. It gives you the opportunity to talk with others facing similar issues.
For some of you, the financial impact of your cancer recurrence is of concern, just when you had thought things were getting back on track. Benefits advice is available at our Maggie’s Centres, so you can talk through your concerns, and find out what you may be entitled to - as well as ways to cope with your work and home situation.
Often, focusing on the things you can control, about your cancer, can help physically and emotionally. Nutrition, stress management and exercise are something you can have an impact on. You can find out more about managing stress , Nutrition and cancer and exercise and cancer by dropping into one of our centres, or reading through our blogs and conversation posts online.
If cancer comes back, it can be a shock and hard to process. Finding out about how the doctors intend to treat the recurrence, and support you, can help you feel less helpless. There may be some aspects of the future you can’t control, and that can feel scary. Something that may feel hard to do, is acceptance that you can’t control everything - but learning to live with the new set of circumstances. That doesn’t mean giving up - but adjusting to life with cancer in it - you’re still in charge….
Warm wishes
Sue (May 2018)
(Updated April 2020)
Resources
Dealing with cancer recurrence - Cancer.Net
Why do cancers come back? - Macmillan Cancer Support
Why some cancers come back - Cancer Research UK
Understanding recurrence - American Cancer Society
When cancer returns - National Cancer Institute
Managing cancer as a chronic illness - American Cancer Society