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 reading


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12 thoughts on “Chemo or not Chemo – that is the question 

  • Donna Spas

    I have Aflac and my SandoLar is deemed injectable chemotherapy….Good thing for me. I will not be passing along this article to them…. even though I agree with it.

    • Yup, mine was too when I used health insurance but only because the insurance database of treatment ‘types’ is out of date and it needs to be somehow classified in their system as a type of treatment. However, it isn’t a cytotoxic drug!

  • Christine Craig

    Hi Ronnie hope you are keeping well. My gp ended up puting my lanriotide down as chemo as the dss were throwing me off the sick. I was not getting or had chemo therefore I was not ill and would be fully recovered in under six months. I had had 2/3s of my colon removed 2 /3 weeks before. I was supposed to go on a back to work course and could hardly walk at the time. I was also waiting for Nets related heart surgery. I have spoken to others at the Maggies centre with similar difficultys. Incidentaly my dss accessor had no idea what Nets was looked on the internet in front of me and found a site that said it wasn’t cancer and I could live a normal life as it took so long to progress. How I wish that was true. If it happened now I would refer them to your blog as you explain things beautifully. Thanks for all your hard work. Christine

  • WordNoid

    Helpful post again! I am a NET patient but I earn a living as a professor of medical informatics (=medical computer science and health IT). I know little about the U.K. system but am intrigued by what you say about the relationship of coding systems to this problem (note: these vocabularies and coding systems are not the creation of insurance companies, but rather are developed by standards organizations in healthcare). I am going to research this a bit and get back to you. Feel free to send me an email if you would rather take this offline.

    • Thanks,that would be useful because it’s not confined to treatments. It’s also happening on cancer types. The only cancer type they could find for me is “carcinoid syndrome” which is technically not even a cancer.

    • TACE is actually a delivery system rather than a type of chemo, i.e. it’s the equivalent of a cannula, PICC or central line. TACE delivers a type of chemo which would be selected for the stage and grade of the cancer type. I have no idea if there is a specific type used for NETs but I’m guessing it would be one of the general ones.

  • Thanks for that Ronny. I experienced dreadful problems trying to get insured for holiday in Paris but found through the NET organisation a Company who knew exactly what Lanreotide was and I had no problem getting cover. I had been quoted by another company almost £1000 prior to finding this Company, they were called hope this is helpful for some of our fellow NETS patients

    • thanks Gaynor, a massive subject and I think this is one of the companies already listed as cancer friendly on some chat forums. I was lucky as through my ex forces connections, I was able to get excellent cover for all pre-existing conditions for less than £200 worldwide for both me and my wife.

  • Great post and answers the question in a nice easy way for me, thanks Ronny😃

    As you know this caused me no end of confusion a couple of weeks ago. In the end I went non chemo for my ESA form, which was in line with last years submission. Although my specialist nurse came back with the answer for the purposes of the form as chemo for the reasons you stated above, I decided not to put this answer on the forum, as I didn’t want to add to the confusion, also a different specialist may give a different answer😳

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