Are cysts on Head of Pancreas removed when they are the type that often turn malignant?

Hi GarageYoga,

Welcome to the online Community. My name is Penelope and I am one of the Cancer Information Nurse Specialists. I am sorry to hear about your breast cancer diagnosis and the additional worry regarding the pancreatic cyst. It must be hard having been told that this cyst has the potential to become cancerous in addition to coping with your breast cancer diagnosis and treatment.

Whilst it may be hard to focus on the positives, it is important to remember that the cyst is not at present cancerous and will be closely monitored. Any changes found during monitoring will be assessed and if any further action is thought to be necessary this would be discussed with you.

It sounds like much of your worry stems from not knowing all the facts regarding your pancreatic cyst. Taking steps to understand more may help you regain some sense of control in what sounds like a very uncertain time for you. Only the clinicians involved in your care can give you information about your individual circumstances, but it sounds like you have had limited opportunity to get further information. Approaching the Upper GI consultant’s secretary by email or telephone may be one way to communicate the impact that this lack of information is having on your wellbeing. If this is not successful you may wish to contact the Patient Advice and Liaison (PALS) service for their support in getting the information that you need.

Pancreatic Cancer UK has some information on pancreatic cysts.  Their information includes links to the NICE (National Institute for Health and Care Excellence)  guidance. To access the information, you need to download the guidance. Sections 1.1.7 – 1.1.12 outlines the recommendations on how pancreatic cysts should be checked for cancer. The NICE Guidance focuses on diagnosis and does not mention ongoing surveillance, but it is important to note surveillance is not uncommon when managing some health conditions.

Active surveillance of a condition means that unnecessary treatment can be avoided or delayed. One of the disadvantages of surveillance is that it can lead to anxiety about the extent of the underlying condition. I understand that you are concerned about a possible future diagnosis of pancreatic cancer. In the early stages pancreatic cancer frequently does not cause any symptoms and for this reason it can be diagnosed late and be more difficult to treat successfully. The fact that this cyst has been identified gives the opportunity for it to be monitored and treated promptly if there are changes that make this necessary.

It is important to focus on your current health and well -being. If you would like to talk things through further please do get in touch with us on the Macmillan Support Line. You may also like to look at the other ways to get help from Macmillan including help with how you are feeling.

Best wishes

Penelope, 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. 

Ref/LA

Thank you for your extremely helpful reply.

Yes, a lot of my worry stems from not knowing enough. I can't stand the NHS method of keeping patients in the dark but at the same time telling us not to read "Dr Google". It's driving me insane. I know how to research but have no medical training, plus totally insufficient info about my cyst. 

I need a discussion with an Upper GI specialist. I have no idea who they even are. I am being treated by the Royal Marsden. The only info about my cyst was over the phone one day from my breast cancer nurse which was after my full body CT scan to see if the aggressive breast cancer had spread. The nurse told me the Upper GI MDT team said they wanted to check the cyst in a year. 

Following your suggestion I will contact them. I can't carry on like this not knowing. 

Thanks again. 

I have an update for you.

I had a F2F appointment today with a Marsden chemo registrar. It was useful and the doctor was receptive to my concerns. 

Initially, she didn't take my comments seriously about my pancreatic cyst because I don't think she realised that the sort I have is the most likely to turn malignant and also how much 'worse' it is to have than a breast cyst. I told her, she looked it up, and she understood and has given me a non-urgent referral to Upper GI. 

I have also requested my Body CT report and pictures. if the Upper GI appointment takes forever, then I will go private with my scan to get the info I desperately need to know. I have found this for example: https://www.parkside-hospital.co.uk/consultant/mr-andrew-wan/   ?

As I told the registrar, I want to know what they would do in scenario 1,  what they would do in scenario 2 etc e.g. will they remove the cyst? If so how? What are the risks of that or of leaving it, etc etc etc What would they need to remove; Whipple? etc etc

Thanks again. 

Dear GarageYoga,

Thank you for the update. I am glad that you have been able to ask some further questions and that the doctor was receptive to your concerns.

If you want to talk things through at any point please don’t hesitate to give us a ring on the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm).

Best wishes

Penelope, Cancer Information Nurse Specialist.

Ref/ VP