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Ronny Allan
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 in 2010 that my treatment was palliative in nature. However, 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 in which many people survive. As survival rates increase, so too will the number of people who live with the legacy of cancer and its treatment.
What is palliative care?
Some people with incurable cancer will continue to receive treatment to keep 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 the treatment of cancer, it’s also helping 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 form 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 at those with incurable but treatable cancers.
My palliative care experiences
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 are 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. In fact, one letter from a specialist described my surgery in symptom palliation terms. I can confirm this is about right as my hormone marker 5HIAA 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.
This is a great video Q & A on Palliative Care
What is Palliative Care – An Introduction for Patients and their Families – YouTube
……. And this is a great opinion piece from a doctor who said First step to improving palliative care: change its name | The Star
Disclaimer
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.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
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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I agree that palliative care can be a positive part of our process of living with this cancer. Palliative care is not just for our final days. I encourage all to at least explore what is available in your local area under palliative. You may find counselling services for example that perhaps you could not access elsewhere. Also, it is better to know in advance if your local palliative care does not suit you. It is too late when you are in your last days. Part of living our lives is also knowing how we want to live our dying process. This of course applies to everyone. Here in Canada, for example, assisted death is accessible but there are still some places that refuse to allow it on their premises- usually on some religious ground. These cases are making their way through the courts but…it takes time…so knowing your options before entering the process is better in my view. Hugs to all.
[…] Aunque parezca difícil y poco agradable acercarse a este mensaje, este documental tiene un recado positivo para darte: Los Cuidados Paliativos pueden salvar tu vida. […]
Thanks Ronnie had hospital appointment today at Beatson said there a three millimetre increase in tumours but nothing to worry about as there is margins either way with c.t scans Could you please if you can throw any light on the term margin for me Many thanks Ronnie/ Martin
Difficult one as it depends on a number of factors. As I understand it, margins can be clear (or negative). The pathologist checking tissue removed would check for the presence of cells surrounding the tumour. If cells were found on the edge, that would be a positive finding. I think the difficulty with NETs is that the tumours tend to be well differentiated (i.e. they can look like normal tissue) so the room for error is much higher.
Thanks for sharing helped reading this.
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In Ohio our hospice care has started an outreach called Pure Health. I started with them three months ago and I now have hope in getting through each day with pain medication. This was actually one area I was very concerned about after hearing so much about addiction. They offer counseling and medication which together have given me a new life. I have Stage 4 Neuroendocrine bone cancer which is very rare by not having any organs involved. I haven’t been able to find anything related to that subject specifically. Could you help me?
Glad to hear you’re getting done attention. Bones are definitely an area associated with metastases, incidence is increasing due to modern imaging technologies. However, as a primary location is something I’ve not seen before. I’ll be honest with you, my first thoughts are that your primary has not been found yet. Despite the increasing finding of bone metastases, that remains a rare event. Are you dealing with a Neuroendocrine specialist and have access to Ga68 PET scans. Have you had any biopsies?
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.
Yes thanks Ronny I agree with Edebock
Reblogged this on Tony Reynolds Blog and commented:
Important Blog for all
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!