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

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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 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.

 
 
 

Scroll down to see the 10 questions or check out the doctors list just below

Finding experts

As an extra bonus to this post, I offer you a starting point for the best places I know for finding Neuroendocrine Cancer expertise.  Many people ask what makes a doctor an expert and that is a difficult question. The question is much simpler in countries that run accreditation programmes such as ENETS with their Centre of Excellence system.  The hospital (often containing a group of ‘satellite’ hospitals) is by default a hospital where you can find experts by sheer dint of their accreditation and experience in treating a wide range of different Neuroendocrine Cancer patients via a multi-disciplinary team.  Some hospitals have an MDT but have not yet gained accreditation, these also contain people who will be considered experts. In the most general terms, a “NET specialist” is a doctor with experience in treating many NET patients (more likely at larger hospitals, for example, ENETS accreditation depends on having a minimum number), contributes to the regional NET scientific organisation at least in membership (e.g. ENETS/ NANETS/ UKINETS/CommNETs), contributes to scientific and guideline documents based on Neuroendocrine Cancer.  These are not specific criteria written down as a must-have, the issue is fairly subjective.  Published lists frequently shared are notoriously out of date, my aim is to build something up to date via my own research and patient input from my own group, the biggest online international support group in the world.  Other patients are a very good source – you can also ask other patients in my group, they have so much knowledge and experience: Click here to join.

EUROPE

ENETS: European NET Centres of Excellence

UK – here at UKINETS: UK NET Centres (UK has a large number of ENETS Centres of Excellence but also has many MDTs).  The NC UK page might be more up to date.  Click here to read that.

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.

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

USA

  • Oschner/NOLANETSDr Mary Maluccio, Dr Thiagarajan Ramcharan, and Dr J. Philip Boudreaux have now moved from Oschner to East Jefferson Hospital.  The contact information is: 504-444-5585 or during office hours 504-503-5426.  The office is at Yenni Cancer Pavilion at East Jefferson Hospital. 4204 Houma Blvd Metairie 70006, (approx 10 miles from Oschner).   It is my understanding that the brand of “NOLANETS” has gone with them.
  • One US center is now the first to achieve a European NETs Center of Excellence accreditation – read more here about the University of Iowa Holden Comprehensive Cancer Centerclick here
  • Dr Yi-Zarn Wang, expert NET surgeon – he’s been moving around lately but as of 5th March 2022 he said, “I am now in Permian Basin-Odessa Midland Texas as the new Program Director of a new general surgery residency program. I have officially joined the faculty of Texas Tech University Health Sciences Center on October 1, 2021.  I have privileges at TTUHSC and our two teaching hospitals. I’ve resumed seeing patients and operating. Thank you again for your unconditional support. My clinic number is 432–703–5555. Fax number 432- 335–1693. Amanda Mendoza will handle my patient appointment appointments. Her email is: amandamendoza@ttuhsc.edu. Her phone number is 432–703–5555 then choose option one. Christina Rodriguez is my nurse.”

  • The NET Research Foundation as they also have a Doctor Databasesection which differs slightly from CCF below.

  • Here at Carcinoid Cancer Foundation – Find a Doctor

    Please note the criteria for being on the USA lists from NET RF and CCF is not clear.  I’m told by US patients that many are out of date.  Local knowledge in my group is often more up-to-date. 

AUSTRALIA

Australia – here: Australian NET Doctors

NEW ZEALAND

Dr Ben Lawrence, based in Aukland is a known specialist.  From patient input, Dr Prasanth Hari Dass in Rotorua NZ is seeing NET patients in coordination with Dr Ben Lawrence in Aukland. 

CANADA

From patient knowledge supplemented from my twitter medical contacts:

  • Dr Daniel Rayson, Halifax, Nova Scotia, Medical oncologist. Described as the province’s “net specialist” (or as close as we have to one at least).  Dr. Daniel Rayson as the team leader adding that he also oversees the PRRT program.
  • 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 (surgeon) at the CHUM in Montreal also sees a lot of NET patients.
  • Dr. Jamil Asselah also treats net patients. He is an oncologist ….Quebec
  • Dr. Simron Singh at Sunnybrook, Toronto – Oncologist.
  • Dr. Calvin Law at Sunnybrook, Toronto – Oncologist.
  • Dr Julie Hallet at Sunnybrook, Toronto – HPB Surgeon.
  • Dr. Shereen Ezzat at Princess Margaret in Toronto (PMH)
  • Dr Monika Krzyzanowska at Princess Margaret in Toronto.
  • Dr. Radhika Yelamanchili (Niagara Health System) (Also a medical advisor on the board of CNETS Canada).
  • London Ontario: Dr. David Laidley, Dr. Daryl Gray (Surgeon), Neuroendocrine Clinic, London Regional Cancer Program.
  • Dr Ralph Wong, Winnipeg, Manitoba – Oncologist with an interest in GI NETs
  • Cross Cancer Institute/Clinic in Alberta Edmonton. Dr Koumna, Nuclear Medicine Dr Sawyer, medical oncologist. Dr Janice Pasieka also gets a mention. 
  • Drs. Parkins, Card, and Paseka at the Tom Baker CC in Calgary.
  • Dr Jonathon Loree at Vancouver BCCA. Dr Sharlene Gill is another Oncologist in BC who is well versed in NETs and also works within the BCCA.  Patients in this area may have issues with referrals if not living in the local area (as I understand the issue, it’s a BCCA restriction). 

SOUTH AFRICA

Cape Town:
Vincent Pallotti Hospital – General enquiries (info@cptnuc.ac.za) or Dr M.Morkel 
Groote Schuur Hospital
Tygerberg Hospital

Gauteng:

Prof. Jean Botha Head of Liver Transplant Unit at Donald Gordon Medical Centre in Jhb.
Prof. Mike Sathekge
Lizette Louw is a Nuclear Medicine Physician in JHB lizettelouw@hotmail.com;

KwaZulu-Natal:

Dr. Masha Maharaj from Umhlanga Advanced Imaging and treatment.
Adam McCleave of Hopelands Cancer Centre. His email is: adamm@hopelands.co.za

Limpopo:

Getting referred to a NET MDT:   You may be referred to one automatically, but if that doesn’t happen you can ask your doctor for a referral to be made.

REST OF THE WORLD

This is a work in progress

Brazil – Dr Rachel P Riechelmann, Hospital A. C. Camargo, Departamento de Oncologia Clínica São Paulo, Brazil

India – CoE for Neuroendocrine Tumors launched at Rela Hospital
Read more here

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 list of centres to have been accredited can be found here – click here.  Many existing NET MDT will already support this type of tumour. 

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.

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 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 react 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.

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.  Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional as they are not members of the private group or followers of my sites in any official capacity.  Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

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

  • Terence Klassen

    Thanks for an informative post. I have been diagnosed and had the section of my Small Bowel removed. I will be starting treatment soon.
    Now I know which questions to ask as I am very anxious. Will keep in touch.

  • Pat Cleland

    Re: Net specialists: Also Dr Monika Krzyzanowska. at Princess Margaret in Toronto Canada.

  • BENARD RONO

    In a resource limited and knowledge limited setting having NET is like getting injured in a jungle. I live in Kenya, Africa and was diagnosed incidentally in 2015 when I had been taken in for acute appendicitis and a surgical mistep led to accidental discovery of a small swelling in my terminal ileum which was biopsied and results returned as NET. I was so much confused as my doctors who still had ‘carcinoid’ education. One group was agitating for wait and see idea, another was dismissive that it is not cancer. But one professor surgeon whom I realized though he did tell me untill I learnt upon his death that her had ‘Carcinoid’ advised me to have it removed.
    This SITE and other NET online groups helped me in making decision on my next steps in a confused part of the world. Even upto now I have never found a specialist in this corner of the world.

      • Tamar Mason

        Ronny I cannot thank you enough for all the info that you have researched and shared. I am in South Africa and being able to access the quality of information that you provide is immensely helpful as there are not many resources outside of standard oncology here.

  • Another home run with this 10 questions Ronny !!
    On a side note, I’ve noticed there are still wide differences on many levels between countries in the number of specialists, services, and patient assessments.
    This in my opinion becomes another one of the challenges we face with our disease. I feel sometimes it takes every ounce of energy just to find the most educated professionals to help me put the thread through the eye of the needle 🤷‍♂️
    Thanks once again for spending and sharing your time and efforts with your fellow net patients 👍
    Best Regards !!!

      • Yes, so true.
        Here in Canada there are huge differences even between provinces. All VERY confusing for those just starting the journey.

        Silly me thinking something that affects this many people would have centralized data collections, studies that have been completed made available and most of all, calculations of the data showing success levels by blood type of currently in place treatments that are available. I’m such a dreamer 🙄

  • Deanna Vickery, Mrs

    I wasn’t told what sort of tumour I’d had removed until I was in for a second op due to blockage made by scar tissue subsequent to the first op. I wasn’t offered any info at all and have found everything out via internet

    • Deanna – that’s not good is it? Stick with me, I’m hoping I can help you address some of these issues – at least in the types of questions you should be asking. Hope you’re doing OK…… Ronny

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