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Palliative Care – it might just save your life

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the-p-word

When you’ve been diagnosed with cancer at an incurable stage, certain words start to mean more. Take ‘palliative’ for example.  Before I was diagnosed I had always associated the word ‘palliative’ with someone who had a terminal disease and this type of care was to make the final days/weeks as comfortable as possible. So it was a bit of a shock to find out that my treatment was palliative in nature. However, after 6 years, I’m still not dead and I’m still receiving palliative care. Go figure! The answer is simple – the cancer story is changing. What was once feared as a death sentence is now an illness that many people survive. As survival rates increase, so too will the number of people living with the legacy of cancer and its treatment.

What is palliative care?

Some people with incurable cancer will continue to receive treatment to keep the cancer at bay and that treatment is by definition, palliative.  In fact, palliative care can be given at any time during an illness. It’s not just for treatment of the cancer, it’s also to help with the effects of that treatment, i.e. the consequences of cancer.  It also encompasses things such as emotional and other practical support.

In the most general terms and while it clearly can go into some detail and long lists, palliative care can be defined as follows:

Cancer and its treatment often cause side effects. Relieving a person’s symptoms and side effects is an important part of cancer care. This approach is called symptom management, supportive care, or palliative care. Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care.

I looked at a few sites and many of them confirm the above.  However, there appears to be even more sites where it is still heavily associated and inextricably linked with end of life or hospice care where you may come into contact with the term palliative care specialist.  Whilst it’s not wrong to make that association, more work needs to be done to cater for the growing numbers of ‘incurable but treatable’ who are not ‘terminal’ and still need this type of support, in some ways like you would with a chronic condition.  I also sense a push in certain areas to emphasise the meaning of palliative care to include a much broader definition than is currently in most people’s minds.  This needs much more publicity.  I’m not saying that ‘palliative’ does not include ‘hospice care’ but I’m not intending to cover that aspect in this blog which is aimed as those with incurable but treatable cancers.

My palliative care experience

When I was diagnosed with metastatic Neuroendocrine Tumours (NETs) in 2010, I quickly accepted the fact that any treatment I would receive would not be curative.  I also quickly accepted that if I didn’t have any treatment, I would probably die.  The words used were ‘debulking’ and ‘cytoreductive’, more technical sounding but essentially meaning the same thing as palliative.  Debulking means removing as much tumour as possible in order to increase the chance that perhaps other treatments can be of some help. Cytoreductive means the same thing but generally extends the ‘debulking’ activity to other modes of treatment (e.g. chemotherapy/radiotherapy).

NETs is one of a number of cancers for which ‘debulking’ and ‘cytoreductive’ therapies can in many cases confer some survival advantage. In fact if you read ENETS or NANETS guidance for advanced NETs, you will frequently see the statement that cytoreductive surgery should be considered if greater than 90% of metastatic tumour burden can be safely resected or ablated.  NETs, particularly with distant metastases, can come with a ‘syndrome’ and some of the symptoms can be rather debilitating for many patients. These syndromes are a result of tumours secreting excess amounts of hormones and the types vary from patient to patient and from NET type to NET type.  It follows that if surgical debulking reduces the amount of tumours, then it should normally decrease the effects of the associated syndrome.  I can confirm this is about right as my 5HIAA result remained elevated after surgery to remove my primary and local tumours, but did not return to normal until after my liver surgery.

However, there are a number of other treatments that can be considered ‘palliative’ in a metastatic or advanced environment.  Getting rid of tumours is always the optimum treatment for any cancer but just as surgical debulking can reduce the amount of cancer, other non-surgical modalities such as liver embolization or ablation can have the effect of reducing the symptoms of the cancer and therefore providing relief to the patient. Somatostatin Analogues (Octreotide/Lanreotide) are another good example of palliative care.  Although they might have an anti-tumour effect for some, they mostly work by reducing or inhibiting the secretion of excess hormones which contribute to the various NET syndromes.  ‘Symptom control’ is as defined above, palliative care.

I’m looking forward to my next palliative care appointment on 29 Nov!

thanks for listening

Ronny

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4 Comments

  1. cutiepie1 says:

    Hi Ronnie,
    My husband is meeting with the support team at Cedars for the first time. It is palliative care. We are not worried that Jim’s health is declining or that we are preparing for some immediate issue. We are just going to see them for pain control issues and things like that. I feel it is important to have a system in place and reaching out and setting things up while things are good is vital to keep things solid! Thanks for writing this. Perfect timing.

    Liked by 1 person

  2. Gaynor Miles says:

    Yes thanks Ronny I agree with Edebock

    Liked by 1 person

  3. Reblogged this on Tony Reynolds Blog and commented:
    Important Blog for all

    Liked by 1 person

  4. edebock says:

    Like you, after being diagnosed with metastatic NETS I quickly accepted that it was incurable, that everything we did would be an attempt to keep me alive and well for as long as possible, but I avoided the word “palliative” because to me it meant near death. Thank you for helping me look at it in a broader sense!

    Liked by 1 person

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