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Ronny Allan
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 check out the doctors list just below
Scroll down to also see information on "NET Aware" Dietitians.
Finding experts
Many people ask for a definition of a “NET Specialist”. There’s also discussions surrounding Multidisciplinary Teams (MDT)/Tumor Boards and Centres of Excellence (CoE). Why are they important, who should I see, and where should you go; are all relevant questions. Sometimes it’s better to have these discussions with other patients/caregivers (joining my group below adds to these lists). But understanding these terms should help you find what you need.
There is often a focus on an individual doctor but the team approach is proven to be beneficial. How that is achieved may differ from country to country (or even hospital to hospital). The type of doctor is also another frequently asked question. In order to understand these terms, including “what actually is a NET specialist”, perhaps read this blog post below first.
For definitions, please read my post covering NET Specialists, MDT and CoE.
The next section will provide you with the “list of lists” but local knowledge from other patients is very useful, and that means joining my group, the largest of its kind in the NET Community. 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
Clicking BLUE bold links will take you to lists where applicable.
Most European Countries: European NET Centres of Excellence
Other European areas featured:
UK – UK has a large number of ENETS Centres of Excellence but also has many MDTs). Supplementing the ENETS list, see here at UKINETS: UK NET Centres. The NC UK page might be more up to date than UKINETS. Click here to read that.
France. There are 4 centres listed in the ENETS list above but this centre is very useful and employs many well known NET specialists. Gustave Roussy, Paris Gustave Roussy is recognised by the National Institute of Cancer as a referral centre for treatment of endocrine cancer. In this context we participate in a number of consultative meetings of the network of recognised French centres such as RENATEN for the TNE (French acronym for NET). Click here to read about the NET MDT led by Dr Eric Baudin. Neuro-endocrine tumour – Team | Gustave Roussy
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
European patients – please let me have your countries lists.
USA
Please note the criteria for being on the USA lists from NET RF and CCF are not clear. I’m often told by US patients that many are out of date. Fortunately, local knowledge in my group is often more up to date and some of the lists below are based on their input.
See the NET RF and CCF lists below but I cannot personally guarantee their accuracy. Errors should be reported directly to NET RF or CCF. Where I have facts, I can temporarily add change below awaiting update of the lists below.
- The NET Research Foundation has a ‘Doctor Database‘ section which differs slightly from CCF below.
- Here at Carcinoid Cancer Foundation – Find a Doctor
Misc changes that may not yet be incorporated into CCF/NERTF published lists above:
Dr Daniel Halperin is moving from MDA Houston to Emory Atlanda in September 2024.
Oschner/NOLANETS. Dr 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.
University of Iowa. 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 Center – click 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.”
An oncologist – Dr. Daniel Almquist in North Dakota (Sanford Roger Maris Cancer Center, Fargo) appears to have some experience and has connections with Dr Thor Halfdanarson well-known expert at Mayo Rochester, MN
Dr Aman Chauhan has moved from Markey Cancer Center to Sylvester Cancer Center University of Miami 475 NW 12th Ave Miami, FL 33136. Tel 305-243-5302.
Dr Hagen Kennecke. Is still in Portland but has moved to OHSU Knight Cancer Institute (8th Jan 2024).
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 is seeing NET patients in coordination with Dr Ben Lawrence in Aukland.
Anecdotally from a NZ patient:
I have had very good oncology care in both Christchurch and Auckland. Prof. Sharon Pattison is a very highly regarded NET specialist based in Wellington, I know other neuroendocrine cancer patients in Dunedin who are under Prof. Chris Jackson.
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.
- Winnipeg, Manitoba – Dr Ralph Wong is an Oncologist with an interest in GI NETs
- Cross Cancer Institute/Clinic in Alberta Edmonton. Dr Koumna, Nuclear Medicine. A well-versed NET oncologist in Edmonton is Dr. Michael Sawyer. Dr Janice Pasieka (Surgeon) also gets a mention. As Dr Koumna is a nuclear medicine doctor, you would normally only be referred to her if you are being considered for nuclear treatment (e.g. PRRT).
- Calgary. Dean Ruether is an Oncologist based in Calgary who is the Lead for local tumour group teams and is responsible for bringing clinical trials for the Endocrine, NET and Prostate patient population in Alberta. The NET clinic is held at the Foothills Medical Centre campus site. The specialists regularly attending scheduled clinics are Dr. Rorstad and Dr. Parkins (both Endocrinologists) and Dr. Pasieka (Surgery). Ms. France Singleton is our Registered Nurse dedicated to the Clinic. Preceding each of the two NET Clinics per month between noon and 1300 hours a meeting of the Neuroendocrine Tumor Board is convened. This multidisciplinary Tumor Board meeting includes regular representation from Endocrinology, Surgery, Medical Oncology, Nursing, Diagnostic Radiology, Interventional Radiology and Nuclear Medicine. The NET Board meeting is teleconferenced with physicians, usually medical Oncologists, in Regina, Saskatoon, and Lethbridge, depending on need. Patients for discussion are brought forth by members of the Tumor Board or the off-site Oncologists.
- 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 (who is a Nuclear Physician but looks like she sees private patient)
Groote Schuur Hospital
Tygerberg Hospital
Gauteng:
Prof. Jean Botha Head of Liver Transplant Unit at Donald Gordon Medical Centre in JHB.
Prof. Mike Sathekge is a Professor and Head of Nuclear Medicine department at University of Pretoria and Steve Biko Academic Hospital. He also heads the South African Nuclear Medicine Research Infrastructure (NuMeRI).
Lizette Louw is a Nuclear Medicine Physician in JHB lizettelouw@hotmail.com
One patient told me she uses Dr K Tabana at Sandton Oncology JHB.
North West Province:
One patient told me she uses Dr Arno Pretorius, radiation oncologist in Rustenburg.
KwaZulu-Natal:
Dr. Masha Maharaj from Umhlanga Advanced Imaging and treatment.
Adam McCleave of Hopelands Cancer Centre. His email is: adamm@hopelands.co.za
One patient told me she has been treated for 8 years by Dr Spzak, Rainbow Oncology, in KZN adding that this doctor has “excellent knowledge and always best patient care”.
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.
INDIA
- CoE for Neuroendocrine Tumors launched at Rela Hospital
Read more by clicking hereFrom CNETS India:
These are government owned hospitals. There are no concepts of NET teams in India. These hospitals have all facilities for NETs patients, so each specialty gets high caseloads of NETs. In that way, these are the centres where you would have the highest chances of being treated correctly.- AIIMS, New Delhi.
- Tata Memorial Hospital, Mumbai SGPGI,
- Lucknow,
- Uttar Pradesh PGIMER Chandigarh.
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
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 doctor
Neuroendocrine Cancer? – 10 questions to ask your doctor
Once you have a specialist, you should ask many questions and keep a note of the responses. The best responses should come from a recognised NET specialist at a recognised NET Centre (MDT/Centre of Excellence).
Your are welcome to use my pre-prepared set here – built as a generic set to cover all eventualities.
Neuroendocrine Cancer? – 10 questions to ask your doctor (ronnyallan.net)
"NET Aware" Dietitians
This is a new section launched in 2024
Dietitians are an important source of specialist advice and while there are many Dietitians around, there are not that many who you and I might class as “NET Aware” Dietitians.
Most large NET MDTs/Programmes/Centres of Excellence should have a dietitian source, perhaps embedded in their team. By virtue of this closeness to NET experts, these dietitians should be aware of the vagaries (heterogeneity) of NET related diet and nutrition issues. That said, if you do not have access to “NET Aware” Dietitian, a Registered Dietitian is the next best thing. Check with your specialist to see if the MDT has access to a “NET aware” Dietitian.
I will build up this section as I uncover those with NET aware credentials.
Tara Whyand
I will open this section with the world renowned Tara Whyand, someone very familiar with NETs and associated Diet and Nutrition issues specific to all the different types and scenarios (surgery/chemo/etc etc). She worked for many years in a large ENETS centre of excellence including involvement in clinical trials.
She now has her own private practice and appointments are available worldwide for online consults.
See details at International Coverage
Contact Tara at Contact
Her website homepage is here at TaraWhyand.com
Australia
Click here NET Aware Dietitians
As at 25th March 2024, it appears Victoria has its own NET Dietitian at Peter Mac but as per the above link, all other states have access to a NSW based private facility via Skype.
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.
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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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.
best wishes
Re: Net specialists: Also Dr Monika Krzyzanowska. at Princess Margaret in Toronto Canada.
Hi Pat – just out of interest, does your Facebook account have “spice weasel” in the name please?
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.
I think South Africa has some Benard
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.
[…] answer is “ask your doctor” but I’m normally pretty helpful with the sorts of questions to ask. One thing which tends to surprise people is speed – or lack of it! With NETs, the […]
Thanks for 10 questions…. a year on and I still feel new to all this
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Took me 4 years to not feel new to this 😁 glad you enjoyed the blog
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 many varying standards but I guess so many different healthcare systems!
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 🙄
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