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NET Syndromes – chicken or egg?


We’ve all heard the age-old question about the chicken and the egg?  Scientists claimed to have ‘cracked’ the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken’s ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it!

On a similar subject, I’m often confused when someone says they have been diagnosed with ‘Carcinoid Syndrome’ and not ‘Carcinoid Tumours’ or ‘Neuroendocrine Tumours’.  So which comes first?  I guess it’s the way you look at it. In terms of presentation, the syndrome might look like it comes first, particularly in cases of metastatic/advanced disease or other complex scenarios.  Alternatively, a tumour may be found in an asymptomatic patient, often incidentally.  However, on the basis that the widely accepted definition of Neuroendocrine Tumours would indicate that a syndrome is secondary to tumour growth, then the tumour must be the chicken.

I sometimes wonder what patients are told by their physicians….. or perhaps by their insurance companies (more on the latter below). That said, I did see some anecdotal evidence about one person who was diagnosed with Carcinoid Syndrome despite the lack of any evidence of tumours or their markers. This might just be a case of providing a clinical diagnosis in order to justify somatostatin analogue treatment but it does seem unusual given that scientifically speaking, Carcinoid Syndrome can only be caused by a Carcinoid Tumour (just Carcinoid types, not all NETs).

I have a little bit of experience with this confusion and it still annoys me today.  Shortly after my diagnosis, I had to fill out an online form for my health insurance.  The drop down menu did not have an entry for Neuroendocrine ‘anything’ but I spotted Carcinoid only to find it was actually Carcinoid Syndrome.  By this stage I had passed the first level of NET knowledge and was therefore suspicious of the insurance company list.  I called them and they said it was a recognised condition and I should not worry.  Whilst that statement might be correct, I did tell them it was not a cancer per se but an accompanying syndrome caused by the cancer. I added that I was concerned about my eligibility for cancer cover treatment and didn’t want to put an incorrect statement on the online form. However, they persisted and assured me it would be fine on that selection.  On the basis it was really the only option I could select, I selected and submitted.  I did get my cover sorted.  However, it’s now clear to me that their database was totally out of date.  A similar thing happened when I was prescribed Octreotide and then Lanreotide, the only ‘treatment type’ they could find on their database was ‘chemotherapy‘ – again their system was out of date.  I’m told by someone in the know, that individual insurance companies are not responsible for this list, they all get it from a central place  – I’d love to pay that central place a visit!

I quickly thought about all the other NET Syndromes for their ‘chicken and egg’ status! Pancreatic NET (pNET) Syndromes must all be ‘chicken’ given the tumour definition and the secretion of the offending hormones that cause these other syndromes e.g. Insulin, Gastrin, Glucagon, Pancreatic Polypeptide (PP), Vasoactive Intestinal Peptide (VIP) and Somatostatin, etc. Even the more complex and obscure types including (but not limited to) Multiple Endocrine Neoplasia (MEN), Cushing’s and Zollinger-Ellinson Syndrome (ZES) are all related to a variety of neoplasia, tumours, hyperplasia and adenomas.  The NETs are still the chicken!

 

Thanks for listening

Ronny

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Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.


I’ve never used the reblog button until now ………… this is such a powerful post, so I wanted those following me on WordPress or email, and are not on Facebook, to have the opportunity to read it.

Thanks for listening

Ronny

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Here Comes the Sun

rad

Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to…

View original post 2,108 more words

Neuroendocrine Tumours – benign vs malignant


 

 

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, particularly to those who thought they had a handle on it. At worst, it might contradict what new patients have been told by their physicians (….or not been told). For some, it could cause some great concern and worry. In many ways, this topic is similar to the debate I raised in my blog ‘Incurable vs Terminal’.  You may benefit from reading this blog before you move on.

Definitions

To fully understand this issue, I’d like to cover some basic but 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. Let’s look at these definitions provided by the National Cancer Institute.  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.  I supply these widely accepted definitions because there is 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: High Grade (or Grade 3) NETs are deemed to be a ‘Carcinoma’ according to the most recent World Health Organisation (WHO) classification of Neuroendocrine Tumours (2010). You will have heard of some of the types of Carcinoma such as ‘Adenocarcinoma’ (incidentally, the term ‘Adeno’ simply means ‘gland’).

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.

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 interesting as this is the term frequently used by ENETS and NANETS in their technical documentation, sometimes as a term to cover all Neuroendocrine Grades (Tumour and Carcinoma).

Neuroendocrine Tumours – Benign or Malignant?

Definitions out of the way, I have studied the UKINETS and NANETS guidance both of which are based on internationally recognised classification schemes (i.e. the World Health Organisation (WHO)).  Note: The ENETS guidance for 2016 is by paid subscription and the older versions are not wholly suitable for this task but I’ve been able to find European references with extracts, particularly with interpretations of the WHO classification schemes.  I will update this blog (if necessary) once I’m able to access the ENETS 2016 documents.  The latest WHO iteration is from 2010 and I’m fairly certain, having studied extracts from various European references, that the statements below will be covered within the most recent ENETS documentation.

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, in the 2010 edition, the classification is fundamentally different.  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 Guidelines in 2011 (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.

 

who-comparison

A comparison of WHO NET Classifications 1980-2000-2010 (Source ESMO)

The C Word (Carcinoid)

Let me first explain that I’m talking about Carcinoid as a type of NET and not using it to mean all NETs (clearly what would be incorrect).  I’m specifically mentioning it as a standalone type of NET because I believe this is where some of the confusion starts.  History lesson – Carcinoid tumours were first identified as a specific, distinct type of growth in the mid-1800’s, and the name “carcinoid” was first applied in 1907 by 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 (by definition cancerous or malignant tumour). ‘OID’ is a suffix used in medical parlance meaning ‘resembling’ or ‘like’. According to Dr Richard Warner, there are a few types of growths that are sort of midway between these two classifications of benign and malignant. Carcinoid tumors are the most often occurring of these rare types of “midway” growths.  However, he has said in this video (start at 2 minutes) “they (Carcinoid) are cancers, they don’t all fulfil their malignant potential, but they all have that possible outcome”.  He therefore agrees with the UKINETS interpretation of the WHO classification above (at least for the type of NETs called Carcinoid Tumours). Read more from Dr Warner here.

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) and Grade 2 (Intermediate Grade); and ‘Neuroendocrine Carcinoma’ for Grade 3 or poorly differentiated tumours.  Note there are one or two exceptions but the detail would cloud the aim of this blog. Based on the quote above, my interpretation is that Grade 1 is a low-grade malignancy and so on.  You may benefit from reading my blog on Staging and Grading of NETs as this is also a poorly understood area.

But …….

By any accepted definition of cancer terms, a tumour can be non-cancerous (benign) or cancerous (malignant).  This is correct for any cancer type. I’m sure it’s therefore possible that a benign Neuroendocrine Tumour can be present in certain scenarios.  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).  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.

Here’s an interesting piece of information from NET expert Dr Matthew Kulke who was referring to Carcinoid Tumours discovered on autopsy and said “……..the incidence in autopsy series is four times higher, eight per hundred thousand population per year. What this indicates is that carcinoid tumors very often have a slow and indolent clinical course. In fact, probably more people die with carcinoid tumors than of carcinoid tumors. This is an important distinction that really makes carcinoid tumors and other endocrine tumors very different from the other types of cancer we typically hear about.” That got me thinking about the scenario where asymptomatic, small, localised, benign NETs are discovered by accident. It’s a tough call for any doctor (there’s a useful video linked below which emphasises this – See Dr Lowell Anthony video below).  That said, it also got me thinking about the fact that many of these patients perhaps had comorbidities and vague symptoms but were never assessed properly.  It also confirms something I keep repeating – NETs are not rare.

That leads me nicely into the well-known fact that benign tumours can still cause problems if they grow very large and start to invade or press on other body organs. Many NETs release hormones that produce (say) endocrine system issues and so treatment and/or surveillance are/is often still required. It’s also possible that a benign tumour could eventually turn cancerous (malignant) and this may lead to further medical decisions or courses of action.

I’m sure this is no different to many other cancers. We all know someone who has had a ‘cancer scare’ right?  They go for checks, they take a biopsy and it’s found to be nothing of worry.  I’ve seen this many times with friends who had a scare with many different types of cancer.

However …….

There’s a reason why the WHO declared in 2010 that all NETs have malignant potential. It may not happen or it may happen slowly over time but as Dr 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. However, based on the above, use of the word ‘benign’ is probably best used with care given the 2010 WHO classification of NETs.  Also 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 and Stage.

Thanks for listening

Ronny

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Happy Thanksgiving


Print

Just a note to say Happy Thanksgiving to my friends in USA or who may be celebrating it elsewhere.  I am so thankful for the support I get from the US who make up the biggest proportion of subscribers to my blog and associated Facebook page.  I’m also thankful to the US support and advocate organisations who are consistent in their support for my blog via commendations, recommendations, likes and sharing of some of my material.  So I’m thinking of y’all today!

Now …….. I hate to stereotype but I guess a lot of you might be eating turkey today?  No Thanksgiving is complete without a turkey at the table—and a nap right after it’s eaten….. right? Apparently, the meat has a bad reputation for making eaters sleepy, but is there really science to back that up?  Would you believe my inbox has been full of stories about turkey?   The alerts landed in my lap due to the connection of turkey with the word serotonin.  So for me, this has been very educational.  Those who read my blog on the ‘S’ word may remember that tryptophan is one of the bodies amino acids and is partly responsible for the manufacture of Serotonin in our system.  Turkey is said to be high in tryptophan but the recent alerts I received say it is no higher than many other meats.  I’ve also heard the stories about how eating too much turkey makes you sleepy. Melatonin is said to be the hormone which helps with sleep regulation and is manufactured from Serotonin (which is manufactured from tryptophan).

However, the articles I read, (one was from the New York Times and one from Time Magazine) both confirm this is not exactly correct with one describing the turkey/sleepy connection as a “common myth”.  In any case, what’s wrong with an afternoon or evening nap after a traditional meal?  We Brits eat a lot of Turkey on Christmas day and our traditional ‘Sunday Roasts’ normally include beef, turkey or pork and all the ‘trimmings’.  It comes with a nap too 🙂

Whilst it’s clear that Tryptophan is associated with healthy sleep, it’s also clear there is no more tryptophan in turkey than in other common meats like chicken and beef. Other foods, including nuts and cheeses contain even more.  Some of you will be familiar with the food restrictions for your 5HIAA urine test and this is really the only time experienced NET nutritionists will say not to eat such foods (unless of course they give you a reaction).

While tryptophan could make you drowsy on its own, its effects are limited in the presence of other amino acids, of which turkey has many. You might be extra tired after your meal, but best not to blame the turkey in isolation; it could just be that you simply ate too much. With potatoes, stuffing, yams, rolls and pie on top of that turkey, you’re inhaling a lot of carbs!  I also read that the bigger the meal, the more to digest and therefore your body is using up a lot of energy doing this – so this will add to the sleepy feelings!  As for myself, I cannot eat a large meal due to an absence of various bits of my ‘internal plumbing’ not being able to cope with the deluge.

I also read that turkey is a really healthy meat to eat, it’s low in fat, full of protein and other nutrients including the important B vitamins that NET patients might be at risk of deficiency (B3 and B12). Note to self …… eat more turkey!

There’s a great infographic from the Time Magazine below – check it out!

thanks for listening and enjoy your Thanksgiving! It’s OK to have a nap too ……

Ronny

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turkey-infographic

Chemo or not Chemo – that is the question 



I’m continually seeing certain drugs for treatment of Neuroendocrine Tumours (NETs) described as chemotherapy. I think there must be some confusion with more modern drugs which are more targeted and work in a different way to Chemotherapy.

I researched several sites and they all tend to provide a summary of chemotherapy which is worded like this:  Chemotherapy means:

a treatment of cancer by using anti-cancer medicines called cytotoxic drugs.  Cytotoxic medicines are poisonous (toxic) to cancer cells. They kill cancer cells or stop them from multiplying. Different cytotoxic medicines do this in different ways. However, they all tend to work by interfering with some aspect of how the cells divide and multiply. Two or more cytotoxic medicines are often used in a course of chemotherapy, each with a different way of working. This may give a better chance of success than using only one. There are many different cytotoxic medicines used in the treatment of cancer. In each case the one (or ones) chosen will depend on the type and stage of your cancer. Interestingly, there are several statements along the lines of ‘Cytotoxic medicines work best in cancers where the cancer cells are rapidly dividing and multiplying’, a key issue with lower grade NETs.

Well known chemotherapy treatments for NETs include (but are not limited to): Capecitabine (Xeloda), Temozolomide (Temodal), Fluorouracil (5-FU), Oxaliplatin (Eloxatin) Cisplatin, Etoposide (Etopophos, Vepesid), Carboplatin, Streptozotocin (Zanosar). Some of these may be given as a combination treatment, e.g. CAPecitabine and TEMozolomide (CAPTEM).

In the past, any medication used to treat cancer was regarded as chemotherapy. However, over the last 20 years, new types of medication that work in a different way to chemotherapy have been introduced. Many of these new types of medication are known as targeted therapies. This is because they’re designed to target and disrupt one or more of the biological processes that cancerous cells use to grow and reproduce.  They are classed as biological therapy.  In contrast, chemotherapy medications are mostly systemic in nature and designed to have a poisonous effect on cancerous cells, thus the term ‘cytotoxic’.

The following well known NETs treatment are not really chemotherapy and describing them in this way is not only misleading but may actually cause alarm to other patients. Furthermore, if you check any authoritative NET Cancer specialist or advocate organisation; any general and authoritative cancer site or the manufacturer’s websites; you will not see the drugs below listed within the term chemotherapy.

Somatostatin Analogues e.g. Sandostatin (Octreotide), Somatuline (Lanreotide).  Although these drugs have an anti-cancer effect for some, they are in fact hormone inhibitors and are therefore a hormone therapy.

Everolimus (Afinitor).  This is a targeted biological therapy or more accurate a mammalian target of rapamycin (mTOR) inhibitor. It is a type of treatment called a signal transduction inhibitor. Signal transduction inhibitors stop some of the signals within cells that make them grow and divide. Everolimus stops a particular protein called mTOR from working properly. mTOR controls other proteins that trigger cancer cells to grow. So everolimus helps to stop the cancer growing or may slow it down.

Sunitinib (Sutent).  This is a targeted biological therapy or more accurate a protein (or tyrosine) kinase inhibitor. Protein kinase is a type of chemical messenger (an enzyme) that plays a part in the growth of cancer cells. Sunitinib blocks the protein kinase to stop the cancer growing. It can stop the growth of a tumour or shrink it down.

I can only speculate why some of the confusion exists but I do have some personal experience I can quote too. Firstly I believe it could be easier for some people to describe the new agents as ‘chemotherapy’ rather than explain things such as somatostatin analogues, ‘mammalian target of rapamycin (mTOR) inhibitors’, protein kinase inhibitor or angiogenesis inhibitors. Another reason could be that health insurance companies do not have the correct database structures in place on their IT systems and therefore need to ‘pigeon hole’ drugs into the closest category they can see. Often this is chemotherapy and this only adds to the confusion. In the days when I had health insurance, my Lanreotide injections were coded as chemotherapy on all my bills. I challenged it and this is how they explained the issue.

I’m sure there’s other reasons.

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 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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“You must be doing OK, you’ve not had chemotherapy”


chemotherapy-hand-and-arm

If there’s a word which is synonymous with cancer, it’s chemotherapy.  It’s what most people have in their mind when they are talking to a cancer patient…… ‘have you had chemotherapy’ or ‘will you be getting chemotherapy’.  I was nonchalantly asked by a friend some time ago ‘how did you get on with chemotherapy’ – he was surprised to hear I hadn’t had it despite my widespread disease.  Cue – lengthy explanation!  Some things that are said to a cancer patient with good intentions, may sometimes be received the wrong way!  Check out my post “Things not to say to someone with cancer”.

I wasn’t annoyed by the question, I just think people automatically assume every cancer patient has to undergo some form of systemic chemotherapy.  If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair.

Sure, chemotherapy is not the nicest treatment to receive and it does have pretty awful side effects for most. I watched my daughter-in-law go through 3 or 4 months of this treatment where she was literally confined to a combination of her bedroom and her bathroom.  And it did shock me to see her without hair.  I would never want anyone to go through that and it really brings it home when it happens to a close member of your family.

Despite its bad press in regards toxicity and it’s awful side effects, chemotherapy is widely used in many cancers.  Statistics show that it does work for many patients (….. my daughter-in-law is still here looking after two of my four grandsons and my son still has a wife ♥).  However, I suspect it has a limited future as more efficient and less toxic drugs and delivery systems come online downstream.  Immunotherapy is often touted as a replacement for chemotherapy but this may be a while yet.  So for now, millions of cancer patients worldwide will continue to be prescribed chemotherapy as part of their treatment regime.

However, for some cancers, chemotherapy is not particularly effective. Neuroendocrine Cancer (NETs) is one such cancer. In general, NETs do not show a high degree of sensitivity to chemotherapy. For example, it’s often inadequate for the treatment of well-differentiated tumours with a low proliferation index. The one exception is for Grade 3 or poorly differentiated tumours (known as Neuroendocrine Carcinoma) where chemotherapy is much more likely to feature.  I’m not saying that the lower grades will never receive chemotherapy – that door is always left open for those with progressive cancer who have run out of treatment options.  Putting Grade 3 to one side, I’ve heard people say that NETs is the ‘good cancer or the ‘good looking’ cancer often citing the chemotherapy thing as some justification. That is of course a stupid thing to say.  I accept that not everyone will lose their hair and not every chemo will cause hair loss.

Here’s the rub.  Many other treatments come with pretty challenging side effects. Moreover, the side effects and the consequences of these other treatments can last for some time, and for many, a lifetime. For example with NETs:

Surgery can be pretty extensive, in some cases radical and life changing.  Many cancer patients receive surgery for NETs which is still the only real ‘curative’ treatment, although for most, it’s cytoreductive or palliative in nature.  If you lose bits of your small intestine, large intestine, liver, spleen, cecum and appendix, gallbladder, stomach, rectum, lungs, pancreas, thyroid, parathyroids, pituitary gland, adrenal gland, thymus gland, ovaries, oesophagus (…….I could go on), this comes with various side effects which can present some quality of life issues.  There can be huge consequences of having this treatment.

Other ‘consequences’ of cancer surgery include (but are not limited to), pulmonary emboli (blood clots), lymphedema, short bowel syndrome, gastrointestinal malabsorption, diabetes.

Somatostatin Analogues do a great job but they do add to some of the effects of surgery (mainly malabsorption).

Even the so-called ‘silver bullet’ treatment Peptide Receptor Radio Nuclide Therapy (PRRT) can have pretty severe side effects and presents some risk to kidneys and bone marrow as a long term consequence.

I’ve not had chemotherapy and I would rather avoid it if I can. However, as I’ve hinted above, there are other harsh (….perhaps harsher?) treatments out there. Moreover, whilst hair grows back, your small intestines, lungs and pancreas won’t.  Many people will have to live for the rest of their life with the consequences of their cancer and its treatment.

It sometimes appears that every other cancer article involves someone undergoing chemotherapy.  I just wish someone would write an article about my lack of terminal ileum and ascending colon, my missing mesenteric lymph nodes, my retroperitoneal fibrosis, not to mention my diseased liver, my left axillary lymph nodes (and the mild lymphedema I now have after their removal), my left supraclavicular lymph nodes, my suspect thyroid lesion, my small lung nodule and my pulmonary emboli which after nearly 6 years of daily injections means my abdomen looks and feels like I’ve done 12 rounds with Mike Tyson.  However, it just wouldn’t be a good picture nor would it be as powerful as one of a person with no hair.  Just saying!

I look well, I still have all my hair – but you should see my insides!

insides

(you may also like this blog – click above)

 

I wish all cancer patients the best for their treatments!

thanks for listening

Ronny

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