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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
What is a NET Specialist? For definitions, please read my post covering NET Specialists, Multidisciplinary Teams (MDT and Centres of Excellence.
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.
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
- The NET Research Foundation has a ‘Doctor Database‘ section which differs slightly from CCF below.
- Here at Carcinoid Cancer Foundation – Find a Doctor
Misc points and changes that may not yet be incorporated into all published lists:
a. 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.
b. 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
c. 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: firstname.lastname@example.org. Her phone number is 432–703–5555 then choose option one. Christina Rodriguez is my nurse.”
d. 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
e. 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 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.
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).
Vincent Pallotti Hospital – General enquiries (email@example.com) or Dr M.Morkel (who is a Nuclear Physician but looks like she sees private patient)
Groote Schuur Hospital
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 firstname.lastname@example.org
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.
Dr. Masha Maharaj from Umhlanga Advanced Imaging and treatment.
Adam McCleave of Hopelands Cancer Centre. His email is: email@example.com
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”.
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.
- CoE for Neuroendocrine Tumors launched at Rela Hospital
Read more by clicking here
From 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,
- 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 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, which 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. 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.
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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