Not all cancers are the same. Not all Neuroendocrine Cancers are the same either! The technical term is heterogeneity and the term “Neuroendocrine Neoplasms are a group of heterogenous tumours” is commonly found in many texts.
Some cancers grow quickly but many grow slowly, or even very slowly. When you are diagnosed with some types of cancer, you might not need treatment straight away. Doctors then monitor you with regular check ups and tests. They sometimes call this ‘watch and wait’. Watch and wait means that you have cancer, but you do not need treatment straight away. There are different terms for watch and wait. These can sometimes mean slightly different things but they have the same aim which is to avoid treatment if you might not need it. The terms include, watch and wait, watchful waiting, active monitoring, active surveillance. Going forward I’ll focus on the term ‘watch and wait’ in this post.
To a certain extent, this applies to some types of Neuroendocrine Tumours (NETs). I’ll expand on that below. I also added a section in the scenario of long periods of stability but still on surveillance – in many ways this is similar to watchful waiting.
Research shows that for some slow growing cancers, it is safe to delay treatment. Having treatment straight away doesn’t always mean you are more likely to be cured, or live longer. Instead, your doctor saves treatment for later on, if you need it. This might mean you have more options when you do need treatment. And you can avoid treatment side effects for as long as possible. Your doctor will discuss the risks and benefits of delaying treatment with you. They will help you make a decision about the best thing to do for you.
If you have been told it’s a watch and wait scenario as defined above, I would be inclined to get a second opinion. The exceptions might be the scenarios regarding small localised pancreatic NET when overseen by a known and recognised NET expert team. But if it helps you deal with the original decision, then why not.
The amount of time you wait before starting treatment varies. Each type of cancer can change and develop at different speeds. And this varies for each person. Your doctor should talk to you about what might happen. Watch and wait is an option for some slow growing cancers that are not causing symptoms. These include some chronic blood cancers such as: chronic lymphocytic leukaemia (CLL), some types of Non-Hodgkin lymphoma (NHL), hairy cell leukaemia, myelodysplastic syndromes (MDS), smouldering (or asymptomatic) myeloma. Other types of cancer include: prostate cancer, kidney cancer, brain tumours, ductal carcinoma in situ (DCIS), thyroid cancer.
Some people can wait for a very long time before they need treatment, sometimes years. And some people never need to have any treatment. There are many common non-NET issues (which are incidentally found during NET surveillance) that fit this scenario – e.g. liver hemangioma, meningioma, lung nodules, thyroid nodules, simple liver, kidney and pancreatic cysts).
With certain scenarios in NET, watch and wait will not be suitable and this is reflected in guidelines. Some examples include (but are not limited to) metastatic low grade NETs at diagnosis where surgical debulking is possible. Pancreatic NETs greater than 2cm and certain other pancreatic NET scenarios such as functional tumours or tumours causing morbidly due to location). Localised appendiceal, rectal, and stomach (gastric) NETs are surgically removed, most with curative intent (although the stomach is different as recurrence is common in Type 1, but almost always locally only).
It can be hard to hear that you have cancer but not have treatment. You might feel worried that your doctors aren’t doing anything to stop the cancer. Or you might feel like the doctors are keeping treatment from you. Waiting for test results is bad enough when you’ve been having treatment. It might help to remember that research shows that for some slow growing cancers, it is safe to delay treatment. The best example in NET is the guidance for certain scenarios involving low grade localised pancreatic NET less than 2cm in size.
But your doctors are not doing nothing. The watching includes testing. You will be monitored at intervals to see if your cancer changes. You have regular check ups. These might include having blood tests and other types of tests. The doctor uses the results to decide if you can continue to wait without treatment. Or if you need to start treatment. You might also worry more than you did about your general health, and any new symptoms you have. However, you should be conducting your own form of ‘watching’ by reporting if you have new symptoms, or your symptoms are getting worse.
But the reasons why and how the doctors monitor you are slightly different.
I wanted to extend the above scenarios to something affecting many NET patients who found stability after initial treatment but who still need constant surveillance, i.e. wait and watch to see if anything happens. For many NET patients, surveillance will go on for up to 10 years (not all cases but as per guidelines). Beyond that, surveillance periods may be extended to annual checks, but this is based on clinical need. This is also as per most guidelines.
Being on extended surveillance for long periods might mean you still have frequent trips to the hospital (perhaps for the rest of your life). You also then have to wait for test results which can be worrying despite several years of stability. In addition you may find yourself having to adapt your work and family life in ways you felt you could not before. For some, you may continue to face uncertainty about your future, making it hard to make plans.
Some people find it’s helpful to know what to expect later down the line. It’s worth discussing this with your specialist along the lines of what is worrying you, perhaps scenario based, e.g. what will happen if you find a new tumour, etc. Your doctor might be able to tell you what kind of treatment options you might have in the future. They won’t be able to tell you when you will need treatment. But they can share other people’s experiences. And tell you what they think might happen in the future months or years.
Tips for coping with your feelings:
I wanted to further extend the above scenarios to something affecting many NET patients. Getting a diagnosis of cancer is fraught with challenges, not just personal ones but also the incidental finding of benign issues which had been inside you for many years until you were subjected to rigorous imaging you got for diagnosis and surveillance, particularly the former. I’, really talking about findings such as thyroid nodules, lung nodules, benign cysts and other lesions that are commonly found incidentally; and had is not been for cancer diagnostics, a person would be none the wiser. For many of these incidental findings, they will be found to be unrelated to NETs. Again, doctors will opt for a watch and wait alongside your existing surveillance.
You can find a summary of these in my post “NET or NOT” which you can read by clicking here or on the graphic below.
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
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Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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