Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist)

Find a specialist 10 questions

On the day I was diagnosed, I hadn’t really thought about questions, the only one I actually remember asking was “how long do I have left to live” (I watch too many movies!). On the day of diagnosis and a period beyond, people tend to feel emotions of shock, denial, anger and sadness, before going on to accept their situation. Yes, I ‘googled‘ but not a great deal really – although some things I found did frighten me. I wish I had found this article way back then.

As things progressed in the weeks after ‘D-Day’, I started to work out the sort of things to ask but even then it was limited. I had been referred to an experienced NET team so I felt confident they would do whatever needed doing. In hindsight, I can now think of a quite a few questions I should have asked. That said, I suspect my team probably gave me the answers without having been asked the questions!

My blogging efforts have turned into a ‘Community’ of sorts. Consequently, I’m contacted daily from people finding me on the web. Many of these people are at the pre-diagnosis or initial phase. Many are undiagnosed. Most are looking for information and some sound like they are already at the ‘acceptance stage’; some are frightened about the future, some are angry because they think they are not being told important information and some also feel they have been messed about or ‘fobbed off’ by their doctors. Of course I’m happy to help but only after reminding them that I’m just a wee Scottish guy with the same disease!

I have to say that some people arrive on my site without a diagnosis but often seem to be very well prepared – the power of the internet I suspect. The questions I mostly get involve finding experts and then what questions to ask them.

Finding experts

As an extra bonus to this post, I offer you a starting point for the best places I know for finding NET expertise:

Europe – here at ENETS: European NET Centres of Excellence

UK – here at UKINETS: UK NET Centres

Australia – here: Australian NET Doctors

USA:

Canada:

  • Dr. Simron Singh at Sunnybrook in Toronto
  • Dr. Shereen Ezzat at Princess Margaret in Toronto (PMH)
  • Dr. McEwan, The Cross Clinic, Alberta?
  • Dr Kavan at Montreal Jewish General Hospital (Oncology)
  • Dr Buteau / Beauregard at Quebec Hotel Dieu (Radiation Oncology (PRRT, Ga68)
  • Dr Rivera at Montreal General Hospital (Endocrinology)
  • Dr Metrakos at the Montreal Royal Victoria Hospital (Surgeon) sees a lot of NET patients
  • On the French side Dr Andre Roy at the CHUM in Montreal (surgeon) also sees a lot of NET patients
  • Dr. Jamil Asselah also treats net patients. He is an oncologist….Quebec
  • Michael Sawyer at Cross Clinic in Alberta Edmonton.
  • Drs. Parkins, Card, and Paseka at the Tom Baker CC in Calgary.

Russia – Clinical Oncology Research Institute, N. N. Blokhin RCRC RAMS, Address: 24, Kashirskoye sh., Moscow, 115478, RF. NET specialist Alla Markovich

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Neuroendocrine Cancer – 10 questions to ask your specialist

Many people ask me what sort of questions to ask and because NETs is such a diverse bunch of diseases, that leads to me ask them a series of questions to ascertain what they might consider asking. I’m not surprised to find some are unable to answer my questions and so those then become some of their questions to ask!

Also, questions don’t end at the diagnosis phase, they continue and in fact, some of the answers to the questions below, may bring up new questions in your mind. Some of these questions can be asked time and time again in the event of issues downstream.

If you’re currently confused about the essential facts of your condition, you’re not alone. In a recent study, almost half of cancer patients did not know basic stuff such as grade and stage of cancer, and after their initial treatment, whether they were free of disease or in remission.

Pre-question Check

For those entering or are recently just beyond the diagnostic phase, you may find certain questions cannot yet be answered without further test results etc. However, if the answer is not yet known for whatever reason, at least you have it on your list for follow up appointments. Consequently, I’ve constructed this list of questions that should function as a generic set. There may also be ‘specific to country’ questions such as insurance cover in addition to this suggested list. Of course, some of you may not want the answer to so certain questions. That’s perfectly understandable, so don’t ask!

1. Where is my primary tumour and what type of NET is it?

This is a fundamental question and it’s likely many will already have some inkling about location and perhaps a type. The difference between NETs and other types of cancer is the primary can be found wherever there are Neuroendocrine cells rather than a specific part of the anatomy in terms of naming the type of cancer, i.e. a NET of the pancreas is not Pancreatic Cancer.

The type of NET is key as it will drive a lot of other stuff including treatment. Location and type of NET are not always aligned, for example, you may have a NET in your Pancreas but there are several types of Pancreatic NET (or pNET) and these may depend on identification of a particular hormone (see syndrome below). Many NETs are non-functional (there is no oversecreting hormone).

For some the primary will not yet be found (i.e. cancer of unknown primary or CUP). There may also be multiple primaries.

2. What is the grade and differentiation of my tumour(s)?

Another fundamental question as this defines the aggressiveness of the disease and is absolutely key in determining overall treatment plans. Treatment plans for poorly differentiated can be very different from well differentiated. Read more here – Grading and here – Benign or Malignant

3. What is the stage of my disease?

Fundamental to understanding the nature of your disease. Stage confirms the extent of your disease, i.e. how far has it spread. Again this will drive treatment plans and long-term outlooks. Scans are really important in determining the Stage of your cancer – check out my scans post here. Read more here on Staging

4. Do I have a NET Syndrome?

Many NET patients will have been experiencing symptoms prior to diagnosis, perhaps for some time. It’s possible these symptoms form part of what is known as a ‘Syndrome’ and there are several associated with NETs. Syndromes are mostly caused by the effects of over-secretion of hormones from the tumours, a hallmark of Neuroendocrine disease. Carcinoid Syndrome is the most common but there are many more depending on the primary location. Read more here – NET Syndromes.

5. What is my treatment plan, and what are the factors that will influence my eventual treatment? When will I start treatment

This is a very complex area and will depend on many factors. Thus why your specialist may not have the answers to hand. Decisions on treatment are normally made by some form of Multi-disciplinary Team (MDT).  Many people diagnosed with cancer expect to be whisked away to an operating theatre or chemotherapy treatment. However, for many this is not what actually happens. Depending on what testing has been done up to the actual diagnosis, it’s possible that even more testing needs to be done. Additionally, for those with an accompanying syndrome, this will most likely need to be brought until control before certain treatments can be administered; and even then, there may be checks to make sure the treatment will be suitable. Sometimes it’s a case of ‘Hurry up and wait’. My first treatment was 6 weeks after diagnosis and that was designed to control my syndrome ready for surgery which was undertaken 14 weeks after diagnosis. It’s also possible you will be placed on a ‘watch and wait’ regime, at least to begin with.

6. Can you comment on the potential for my type of NET to be related to any familial or genetic aspects of cancer?

A small percentage of NETs are hereditary/genetic in nature.  This is mostly associated with those who have Multiple Endocrine Neoplasms (MEN) syndromes  and a few other less common types of NET including Pheochomocytoma / Paraganglioma(Pheo/Para) and Medullary Thyroid Carcinoma (MTC) (the familial version of MTC is often referred to as FMTC). However, please note this does not mean that all those diagnosed with pancreatic, parathyroid, pituitary, Pheo/Para and MTC tumours, will have any hereditary or genetic conditions, many will simply be sporadic tumors.

7. Will you be able to get rid of all my disease?

This is a really difficult question for any specialist, even a Neuroendocrine expert. All published articles on NETs will say they are a heterogeneous collection of diseases (i.e. consisting of dissimilar entities) which makes this question (and others) difficult. I have read articles written by the world’s foremost NET experts and they all have the word ‘curative’ mentioned in various places. So I guess in particular scenarios with certain NETs, and if the disease is caught early enough, that possibility exists. However, for many, the disease could be incurable, particularly where there is distant metastasis. But, the disease has many treatment options for most types and for many it is possible to live as if it were a chronic condition. I call it ‘incurable but treatable’. Read more here – Incurable vs Terminal

8. What Surveillance will I be placed under?

Again, this is very individual in NETs and is mainly dependent on type of NET, grade and stage and how the patients reacts to treatment. This may not be known until you have undergone your initial treatment. For example, surveillance scans can be any period from 3 months to 3 years depending on tumour type(location) and stage/grade. Marker testing tends to average around 6 monthly but could be more or less frequently depending on what’s going on. Read more here – click here

9. Will I receive support and specialist advice after my treatment?

Let’s not be afraid of the word ‘Palliative’, it does not always mean ‘end of life’ care. Another example is nutrition. Many people with NETs, the condition in combination with the side effects of treatment may necessitate an alteration of diet and this is a very individual area. I would also emphasise that dietitians not well versed in NETs might not offer the optimum advice. Read more – My Nutrition Series.

10. How will treatment affect my daily life?

This is a question that many people miss but it’s becoming more important as we all live longer with cancer Again, this may not be possible to answer immediately but perhaps this question could be reserved once you know which treatment(s) you will be receiving. All treatment comes with side effects and can last for some time or even present with late effects after some years. The ‘consequences’ of cancer treatment need to be factored in earlier so that the necessary knowledge and support can be put in place. See also Unmet Needs for NET Patients

I suspect others will have suggestions for this list so feel free to submit these to me. I quite often refresh my posts over time.

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Neuroendocrine Tumours – benign vs malignant

Kunz His belief these tumors did not metastisize

OPINION:

One of the most controversial aspects of Neuroendocrine Tumours (NETs) is the ‘benign vs malignant’ question.  It’s been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (….or not been told). I don’t believe it’s an exact science and can be challenging for a NET specialist let alone a doctor who is not familiar with the disease.

NANETS Guidance talks about the ‘…heterogeneous clinical presentations and varying degrees of aggressiveness‘ and ‘…there are many aspects to the treatment of neuroendocrine tumours that remain unclear and controversial‘.  I’m sure the ‘benign vs malignant’ issue plays a part in these statements.

In another example, ENETS Guidance discusses (e.g.) Small Intestine Tumours (Si-NETs) stating that they ‘derive from serotonin-producing enterochromaffin cells. The biology of these tumors is different from other NENs of the digestive tract, characterized by a low proliferation rate [the vast majority are grade 1 (G1) and G2], they are often indolent’.  However, they then go on to say that ‘Si-NETs are often discovered at an advanced disease stage – regional disease (36%) and distant metastasis (48%) are present‘.  It follows that the term ‘indolent‘ does not mean they are not dangerous and can be ignored and written off as ‘benign’. This presents a huge challenge to physicians when deciding whether to cut or not to cut.

Definitions

To fully understand this issue, I studied some basic (but very widely accepted) definitions of cancer.  I also need to bring the ‘C’ word into the equation (Carcinoid), because the history of these tumours is frequently where a lot of the confusion lies.  The use of the out of date term ‘Carcinoid’ exacerbates the issue given that it decodes to ‘carcinoma like‘ which infers it is not a proper cancer.  See more below.

Let’s look at these definitions provided by the National Cancer Institute.  Please note I could have selected a number of organisations but in general, they all tend to agree with these definitions give or take a few words. These definitions help with understanding as there can be an associated ‘tumour’ vs ‘cancer’ debate too.

Cancer – Cancer is the name given to a collection of related diseases. In all types of cancer, some of the body’s cells begin to divide without stopping and spread into surrounding tissues. There are more than 100 types of cancer which are usually named for the organs or tissues where the cancers form.  However, they also may be described by the type of cell that formed them.

Author’s note: The last sentence is important for Neuroendocrine Tumour awareness (i.e. Neuroendocrine Tumour of the Pancreas rather than Pancreatic Cancer).

Carcinoma – Carcinomas are the most common grouping of cancer types. They are formed by epithelial cells, which are the cells that cover the inside and outside surfaces of the body. There are many types of epithelial cells, which often have a column-like shape when viewed under a microscope.

Author’s note: By definition, Carcinomas are malignant, i.e. they are cancers. High Grade (Grade 3) poorly differentiated “NETs” are deemed to be a ‘Carcinoma’ according to the most recent World Health Organisation (WHO) classification of Neuroendocrine Tumours (2017) and ENETS 2016 Guidance. You will have heard of some of the types of Carcinoma such as ‘Adenocarcinoma’ (incidentally, the term ‘Adeno’ simply means ‘gland’). It follows that Grade 3 Neuroendocrine Carcinomas are beyond the scope of this discussion.

Malignant – Cancerous. Malignant cells can invade and destroy nearby tissue and spread to other parts of the body.

Benign – Not cancerous. Benign tumors may grow larger but do not spread to other parts of the body.

Author’s Note: This is a key definition because there are people out there who think that low grade NETs are not cancer. 

Tumour (Tumor) – An abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumors may be benign (not cancerous), or malignant (cancerous). Also called Neoplasm.

Author’s Note: Neoplasm is an interesting term as this is what is frequently used by ENETS and NANETS in their technical documentation, sometimes to cover all Neuroendocrine types of cancer (Tumor and Carcinoma). It follows that a malignant tumour is Cancer. The term “Malignant Neuroendocrine Tumour” is the same as saying “Neuroendocrine Cancer”

Neuroendocrine Tumours – Benign or Malignant?

Definitions out of the way, I have studied the ENETSUKINETS and NANETS guidance both of which are based on internationally recognised classification schemes (i.e. the World Health Organisation (WHO)).

In older versions of the WHO classification schemes (1980 and 2000), the words ‘benign’ and ‘uncertain behaviour’ were used for Grades 1 and 2. However, the 2010 edition, the classification is fundamentally different (as is the recent 2017 publication).  Firstly, it separated out grade and stage for the first time (stage would now be covered by internationally accepted staging systems such as TNM – Tumour, (Lymph) Nodes, Metastasis). Additionally, and this is key to the benign vs malignant discussion, the WHO 2010 classification is based on the concept that all NETs have malignant potential.  Here’s a quote from the UKINETS 2011 Guidelines (Ramage, Caplin, Meyer, Grossman, et al).

Tumours should be classified according to the WHO 2010 classification (Bosman FT, Carneiro F, Hruban RH, et al. WHO Classification of Tumours of the Digestive System. Lyon: IARC, 2010). This classification is fundamentally different from the WHO 2000 classification scheme, as it no longer combines stage related information with the two-tiered system of well and poorly differentiated NETs. The WHO 2010 classification is based on the concept that all NETs have malignant potential, and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential.

The guidance in 2017 WHO reinforces this statement to include endocrine organs, including the pancreas and adrenal glands.

The C Word (Carcinoid) – part of the problem?

History lesson – Carcinoid tumours were first identified as a specific, distinct type of growth in the mid-1800’s, and the name “karzinoide” was first applied in 1907 by German pathlogist Siegfried Oberndorfer in Europe in an attempt to designate these tumors as midway between carcinomas (cancers) and adenomas (benign tumors).

The word ‘Carcinoid’ originates from the term ‘Carcinoma-like’.  ‘CARCIN’ is a truncation of Carcinoma. ‘OID’ is a suffix used in medical parlance meaning ‘resembling’ or ‘like’.  This is why many people think that Carcinoid is not a proper cancer.

The situation is made even more confusing by those who use the term “Carcinoid and Neuroendocrine Tumors” inferring that it is a separate disease from the widely accepted and correct term ‘Neuroendocrine Tumor’ or Neuroendocrine Neoplasm.  A separate discussion on this subject can be found in this post here. I encourage you to stop using the term ‘Carcinoid’ which is just perpetuating the problem. 

Kunz His belief these tumors did not metastisize

How are NETs Classified?

If you read any NET support website it will normally begin by stating that Neuroendocrine Tumours constitute a heterogeneous group of tumours. This means they are a wide-ranging group of different types of tumours.  However, the latest WHO classification scheme uses the terms ‘Neuroendocrine Tumour’ for well differentiated Grade 1 (low-grade), Grade 2 (Intermediate Grade) and Grade 3 (High Grade) NET; and ‘Neuroendocrine Carcinoma’ for Grade 3 (High Grade) poorly differentiated tumours. They also use the term ‘Neoplasm’ to encompass all types of NET and NEC. So Grade 1 is a low-grade malignancy and so on (i.e any grade of NET is a malignant tumour).  You may benefit from reading my blog article on Staging and Grading of NETs as this is also a poorly understood area.

Can some Tumours be Benign?

By any accepted definition of cancer terms, a tumour can be non-cancerous (benign) or cancerous (malignant).  This is correct for any cancer type. For example, the word is used in the 2016 version of Inter Science Institute publication on Neuroendocrine Tumors, a document I frequently reference in my blog.  For example, I’ve seen statements such as “These tumors are most commonly benign (90%)” in relation to Insulinoma (a type of Pancreatic NET or pNET). Ditto for Pheochromocytoma (an adrenal gland NET).  Adrenal and Pituitary ‘adenomas’ are by definition benign (adenoma is the benign version of Adenocarcinoma).  And I note that there is a ‘benign’ code option for every single NET listed in the WHO International Classification of Diseases (ICD) system.

The ‘BUT’ is this – all WHO classification systems are based on the concept that all NETs have malignant potential.  The WHO 2017 classification update confirmed this thinking by adding endocrine organs including the pancreas and adrenal glands.

don't worry it's benign widescreen

Can Tumours be Malignant or become Malignant?

Using the definition above, if a tumour invades and destroy nearby tissue and spread to other parts of the body, then it’s malignant (i.e  Cancer). However, there’s a reason why the WHO declared in 2010 that all NETs have malignant potential (as amplified in WHO 2017). It may not happen or it may happen slowly over time but as Dr Richard Warner says, “they don’t all fulfill their malignant potential, but they all have that possible outcome”.  Thus why ongoing surveillance is important after any diagnosis of Neuroendocrine Tumour of any grade or at any stage.  Dr Lowell Anthony, a NET Specialist from the University of Kentucky explains this much better than I can – CLICK HERE to hear his two-minute video clip.

Summary

This was a difficult piece of research. I do believe there are scenarios where NETs will be benign and probably never cause the person any real harm (e.g. many are found on autopsies). I  suspect this is the same for many cancers. However, based on the above text and the stories of people who have presented for a second time but with metastatic disease, use of the word ‘benign’ is probably best used with great care.

I would certainly (at least) raise an eyebrow if someone said to anyone with any NET tumour, “you don’t need any treatment or surveillance for a NET”; or “it has been cured and no further treatment or surveillance is required”.  Particularly if they are not a NET specialist or a recognised NET Centre.

Remember, I’m not a medical professional, so if you are in any doubt as to the status of your NET, you should discuss this directly with your specialist.  A good place to start is evidence of your Grade, Differentiation, Primary Site Location and Stage.

You may be interested in reading these associated posts:

Carcinoid vs Neuroendocrine

Neuroendocrine Neoplasms – Grading and Staging (WHO 2017)

Incurable vs Terminal

10 Questions for your doctor

Thanks for listening

Ronny

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Palliative Care – it might just save your life

 

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 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 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.  In fact, one letter from a specialist did describe 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.

I’m already looking forward to my next palliative care appointment.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!



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Living with Cancer – if you’re reading this, you’re surviving

 

For the first few years after my diagnosis, I avoided using the word ‘survivor’ in relation to my incurable cancer. It just didn’t seem to sit right despite the fact I’m a ‘glass half full’ kind of guy.

However …….. I was studying the term ‘Survivorship’ and found it also applies to those living with incurable and long term cancer. This piece of research totally changed my thinking. The slides above were provided by National Cancer Survivors Day (which seems to have turned rather international) – well done NCSD.Org – you should check out the site and sign up for their newsletter

What is ‘Survivorship’?

The definition differs slightly between national cancer advocate organisations but it would appear it also means Living with, through, and beyond cancer which is a UK term. According to these definitions, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long-term, to either reduce the risk of recurrence or to manage chronic disease.  It follows that those with incurable Cancers such as my own (Neuroendocrine) should be included under the term ‘Survivorship’.

ncsd2018
Courtesy of NCSD.Org

 

Times are changing

I think it’s useful to look at overall statistics for survivorship to contextualise why the word ‘survivor’ might actually be more apt than it was 20 years ago.  For example, in the UK, more than one in three people (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%).  This means the number of people who get cancer but die from another cause will have doubled over the past 20 years.   I’m seeing similar reports from USA too where, for example, the number of cancer survivors is predicted to rise by a third by 2026 (15 million to 20 million).  Almost half of the current survivors are aged 70+.  In another example, the US National Cancer Institute (NCI) is predicting:

‘Silver Tsunami’ of Cancer Survivors in the next quarter century (read here).

There is also a very recent article which confirms this thinking, let me quote a bit of it: The cancer death rate has dropped by 23 percent since 1991, with some even larger gains in types of cancer that used to be extremely lethal. This means there are more and more patients like Thornton who are neither dying from cancer nor defeating it entirely. Instead, they’re learning to live with it.  Full article here.

Of course, it must not be forgotten that many people will need support to maintain a decent quality of life and be supported with ongoing and long-term treatment.  These are both challenges global health systems need to face with rising cancer prevalence.  And both of these challenges will greatly affect my own type of cancer – Neuroendocrine. This is why I’m a very strong advocate for more focus on some of these support type issues and unmet needs, and the resources to deliver them.

So does that mean I’m a Survivor?  

My research indicates this can be a very individual thing.  I guess ‘survivor’ does not appeal to all people who simply have a ‘history of cancer’; and most likely for different reasons. For those with incurable or long-term cancers, some people might not think of themselves as a survivor, but more as someone who is “living with cancer.”  Some may feel like they’re living but not surviving. I get that and it potentially resonates with my reluctance to use the ‘S’ word for a short period after my diagnosis. Thinking this topic through has made me compare where I was at diagnosis and where I am now. Also, I’ve considered what I’ve been able to do and what I have plans to do, despite my condition. I’ve done so much, been to so many places since I was diagnosed, and got plans to do much more, I must be surviving!  Perhaps the words “I got this” was my subconscious thought in the picture I’ve used below?

I got this!

And this picture which always gets a tremendous response every time I post it:

Here’s a great quote I found in relation to the term ‘survivor’:

“You may not like the word, or you may feel that it does not apply to you, but the word “survivor” helps many people think about embracing their lives beyond their illness”.

You may sometimes feel like you’re not surviving but if you’re reading this then you most definitely must be?

Exercise and Cancer: Forward is Forward

your-speed-doesnt-matter-forward-motivational-quotes-sayings-pictures
For Cancer patients, it’s not just about how fast, how high, how heavy, how much …………… it’s about DIRECTION.

One of the very first blog posts I wrote was about exercise. Basically I said it was medicine.  I have not changed that view, I really believe it.  All cancer patients should attempt to keep active and this is even more important if you are being treated for long-term cancer. Why? Because keeping active will not only help your physical condition but it will also help you cope mentally. There are numerous pieces of research which confirm cancer patients are at risk of succumbing to depression and anxiety in addition to issues with their physical condition. Research also indicates that exercise can help.

In my blog “Exercise is Medicine“, I discussed how it had benefitted me when I was in a bit of a rut.  I have not looked back since.  The positivity you see in some of my blog posts comes partly from the fact that I did something I didn’t think I would ever be able to do again. Moreover, it refocused me on what was really important and it helped me physically and mentally.

Now ….. I did get some feedback from various people claiming they are not able to do any exercise because of their condition. I understand that and I also understand some people will have physical disabilities that prevent them being as mobile as they would like.  However, I’ve always emphasised that “exercise” does not mean you need to run a marathon or climb Mount Kilimanjaro; or that you need to do something difficult every single day. If you can actually do that, great!  Exercise can also mean simple things such as gardening, walking to the mall or a block or two, lifting some weights, do a couple of press-ups, swim, anything to get your limbs moving. You can start small and then build up to whatever is comfortable and beyond if you then feel sufficiently challenged.  The most important thing is to do something and you should feel better after you’ve done it.

Here’s some professional advice from the American Cancer Society:

“In the past, people being treated for a chronic illness (an illness a person may live with for a long time, like cancer or diabetes) were often told by their doctor to rest and reduce their physical activity. This is good advice if movement causes pain, rapid heart rate, or shortness of breath. But newer research has shown that exercise is not only safe and possible during cancer treatment, but it can improve how well you function physically and your quality of life. Too much rest can lead to loss of body function, muscle weakness, and reduced range of motion. So today, many cancer care teams are urging their patients to be as physically active as possible during cancer treatment. Many people are learning about the advantages of being physically active after treatment, too”.

For Cancer patients, it’s not just about how fast, how high, how heavy, how much…………….. it’s about DIRECTION. Forward is Forward.

Listen to my video –CLICK HERE

For those concerned about the effects of exercise on their condition, please consult your GP/PCP for advice.  Macmillan Cancer Support also has some great advice on exercise here.

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I’m still here

EIGHT years ago. I was diagnosed with metastatic Neuroendocrine Cancer – 26th July 2010.  Until I arrived at my 5th anniversary, I hadn’t thought much about how (or if) I should mark these occasions.  I never thought I would dwell on such things as ‘Cancerversaries‘ but I now totally get why many patients and survivors do.

There are various types of ‘Cancerversary‘ that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis, the end of a particular type of treatment (anniversary of surgery etc) or a period since no signs or symptoms of cancer were reported. Everybody will most likely handle it their own way – and that’s perfectly understandable.

The 5 year milestone was significant, mainly I suspect, because it’s a time period very frequently used in prognostic outcome statistics. When I was researching after my diagnosis, the 5 year figure for metastatic Neuroendocrine Cancer wasn’t that great, in fact it looked less favourable than more aggressive cancers. Then I gradually worked out that the prognostic figures for Neuroendocrine Cancer were very dated (like many other things) and did not take into account improved diagnostic techniques and the introduction of a plethora of new treatments, in particular somatostatin analogues. Consequently, I no longer pay any attention to prognostic statistics – I’m actually more influenced by the large number of long-term survivors I see out there.

Check out the fantastic response to my 7th year cancerversary post. Click here to be inspired.

My cancer is treatable but not curable but I will never call it terminal.  Despite some issues this year so far, I’m still here and I intend to be here next year, and for many more years after that!