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 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.
As an extra bonus to this post, I offer you a starting point for the best places I know for finding Neuroendocrine Cancer expertise:
Europe – here at ENETS: European NET Centres of Excellence
UK – here at UKINETS: UK NET Centres
Ireland – There is an ENETS Centre of Excellence in Dublin – read more here
Norway – Haukeland Bergen, Rikshospitalet Oslo, St. Olav Trondheim, UNN Tromsø. According to CarciNor, these hospitals have highly qualified staff on NET, and resources to treat NET.
- One US center is now the first to achieve a European NETs Center of Excellence accreditation – read more here about University of Iowa Holden Comprehensive Cancer Center – click here
NANETS have listed “NET Centers” here – NANETS NET Centers and Clinics
- The NET Research Foundation as they also have a ‘Doctor Database’ section which differs slightly from CCF below.
- Here at Carcinoid Cancer Foundation – Find a Doctor
Australia – here: Australian NET Doctors
New Zealand – Dr Ben Lawrence, based in Aukland.
Canada – from patient knowledge supplemented from my twitter medical contacts:
- Dr. Simron Singh at Sunnybrook in Toronto
- Dr. Shereen Ezzat at Princess Margaret in Toronto (PMH)
- 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.
- London Ontario: Dr. David Laidley, Dr. Daryl Gray (Surgeon), Neuroendocrine Clinic, London Regional Cancer Program.
- Dr Jonathon Loree at Vancouver BCCA.
- Dr Monika Krzyzanowska at Princess Margaret in Toronto.
- Dr Julie Hallet at Toronto – HPB Surgeon.
Dr. Radhika Yelamanchili (Niagara Health System) (Also a medical advisor on the board of CNETS Canada).
Brazil – Dr Rachel P Riechelmann, Hospital A. C. Camargo, Departamento de Oncologia Clínica São Paulo, Brazil
Russia – Clinical Oncology Research Institute, N. N. Blokhin RCRC RAMS, Address: 24, Kashirskoye sh., Moscow, 115478, RF. NET specialist Alla Markovich
Other patients are a good source – ask other patients in my group, they have so much knowledge and experience: Click here to join.
Pheochromoctyoma and Paraganglioma?
Some types of NET are highly specialised and may need even more specialised doctors to treat. One such example is the Pheochromoctyoma (Pheo) and Paraganglioma (Para) group of tumours. The main Pheo/Para advocate organisation (Pheo Para Alliance (PPA)) has generated an accreditation program where centres of excellence in Pheo/Para can be accredited and listed for patients to reference. To date, the following centres have been accredited and there will be more to follow in due course. Read more on the PPA website – click here.
Accredited sites as at 2nd June 2021
Huntsman Cancer Institute
Addenbrooke’s Hospital at Cambridge University
Neuroendocrine Cancer – 10 questions to ask your specialist
Many people ask me what sort of questions to ask and because Neuroendocrine Neoplasms (NEN ) (the technical term for both Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)), are such a diverse bunch of diseases, that leads to me ask them a series of questions to ascertain some context – normally the 10 questions below. I’m not surprised to find some are unable to answer my questions and thus why the real need for the questions below!
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.
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 certain questions, that’s perfectly understandable, so don’t ask!
1. Where is my primary tumour and what type of NEN 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 NENs 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 NEN of the pancreas is not Pancreatic Cancer.
The type of NEN is key as it may drive a lot of other stuff including treatment. Location and type of NEN are not always aligned and there’s also the factor of whether a tumour is functional or non-functional (see Q4 below).
For some the primary will not yet be found (i.e. cancer of unknown primary or CUP). There may also be multiple primaries. Specialists in Neuroendocrine Cancer are best placed to find unknown primaries – they know stuff.
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. The differentiation if Grade 3 (or High Grade is a very important question. If you are a Pheochromocytoma or Paraganglioma, there’s a different system for grading and staging. 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 an associated Hormonal 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. NECs are not normally hormonal in behaviour but 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. Surgical decisions can be based on many factors – read more here.
6. Can you comment on the potential for my type of NEN to be related to any familial or genetic aspects of cancer?
A small percentage of NENs 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 and what are the chances of recurrence or growth?
This is a really difficult question for any specialist, even a Neuroendocrine expert. All published articles on NENs 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, normally associated with surgery. 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 are distant metastases. But, the disease has many treatment options for most types and for many it’s 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 NENs and is mainly dependent on type of NEN, 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 NENs, 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 NENs 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.
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