Hello,
someone in my family has just been diagnosed with neuro-endocrine grade 1 tumour on pancreas. Doctors have stated that it is only for observation on anual basis. But he already has a lot of back pain and kidney pain and they did not give us the option to discuss having it removed surgical. He is a very fit and well man young at 52 with no significant PMHx.
do you know if there is a way to ask for a second opinion to discuss this in NHS????
Hi MatthewsA
Thanks for getting in touch with us. My name is Tricia and I’m one of the Cancer Information Nurses on the Macmillan Support Line.
I am sorry to hear that a family member has been diagnosed with a Pancreatic neuroendocrine cancer . There are two types of these cancer and they behave differently and therefore are treated in different ways depending on whether it’s a pancreatic neuroendocrine tumour (pNET) or a pancreatic neuroendocrine carcinoma (pNEC).
Anyone with a suspected or diagnosed pancreatic neuroendocrine (pNET) will be referred to a team of experts who look at all the clinical details such as symptoms and physical examination, scans and any biopsies as part of a Multidisciplinary team (MDT) discussion. They can then recommend whether any further tests are needed and decide on a treatment plan based on the individual’s diagnosis.
It sounds like they have decided on a watch and wait plan which is usually chosen when the tumour appears to be slow growing and they will delay treatment until it is needed. This can be a relief but also can cause worry knowing there is a cancer there, but you are not having any physical treatment. This should have all been discussed with your family member but understandable that they need some more answers.
Regarding the annual testing, it’s important to contact the cancer team if there are any changes or concerns with symptoms in between the tests. Hopefully they have access to a clinical nurse specialist who they can get in touch with if needed.
I am sorry to hear they are having symptoms of back and kidney pain now. We don’t have access to the NHS or medical notes, so we always recommend that if anyone experiences new or worsening symptoms it is important that they contact their medical team, GP or NHS 111 straight away.
The cancer team need to be aware of the pain for their information in case any additional tests are needed and to help manage these symptoms.
It is possible to ask for a second opinion where another NHS expert team will look at all the results again and say what they feel the treatment plan should be. This can be done by asking the Consultant or their GP to do a referral to another team. There are specific Centres of Excellence in the UK.
There is also a great website called Neuroendocrine Cancer UK which can provide lots of information and support to your family member or yourselves in understanding NET cancers generally.
Having any cancer diagnosis can affect the person or their family in many ways. I hope your family member has some support from family or friends. There is additional support for them such as supporting you , talking about your cancer diagnosis and cancer and your emotions. There is also a Macmillan neuroendocrine cancer forum where people with a NET diagnosis and their family can contact others in similar situations.
I hope this is helpful. Please don’t hesitate to get back in touch at any time.
Sending best wishes,
Tricia
Macmillan Cancer Information Nurse Specialist
You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.
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