Removal of pancreas

[Debby11]

Just received the shock news I need my pancreas removing because of a cyst which will cause diabetes. Is there anybody else going through this and how they are coping it all sounds very scary.

 

[Docb]

Hi @Debby11 and welcome to the forum. Cannot help directly but we have quite a few members who have finished up with blood glucose control problems due to pancreatic surgery and i am surer some will be along soon to share experiences.

PS.... I used the phrase "blood glucose control problems" rather than "diabetes" because it can be harder to get your (and your GP's head) round things. It's not scary, just a few more things to take into account but I'll leave that to those who have been there!

 

[SB2015]

Hi @Debby11 and welcome to the forum.

If they are removing the whole pancreas, or even just the bit with the insulin making beta cells, you will become diabetic. This is referred to as Type 3c, but some HCPs refer to it as T1 as it requires similar management strategies, although there are other things to take account of which I will leave to our resident experts on here @eggyg .

We each take on the role of our pancreas, delivering the insulin that we need through injections or an insulin pump. There is plenty of experience to tap into on here and Inknow that I have learnt most of what I now know from others on here. Absolutely any questions that arise, just ask. Nothing is considered silly one here.

 

[helli]

@Debby11 sorry to read about your pancreatic problems.
I think @Proud to be erratic had their pancreas removed and has been very active on the forum and learning how to manage.

 

[Proud to be erratic]

Hi @Debby11 and welcome from me also.

Yes, it will feel very scary and I can understand that, but you are least going for surgery knowing that you may well emerge as a diabetic - which is manageable, albeit there is a steep learning slope ahead of you. But lots of help and advice available from this forum.

I had pancreatic cancer in late 2019 and my surgery in Feb 2020 resulted in a total pancreatectomy and so, of course indisputably diabetic. It had been mentioned in the pre-op assessment, but somewhat underplayed! I effectively signed a blank cheque, ie agreeing they could take as little or as much of my pancreas as necessary and they wouldn't know how much until they'd opened me up. Anyway I'm here to confirm there is a life after even total pancreatic surgery.

I was discharged categorised as a Type 1 diabetic. While that gave me the protection of being clearly recognised as an insulin dependent diabetic on my medical records, it is erroneous; Type 1 is a particular form of diabetes whereby those who are T1 simply cannot produce insulin because of an autoimmune problem that they have; they represent about 10% of the UK diabetic population. Strictly I am Type 3c, since my diabetes is because of damage to my pancreas; T3c is a minscule proportion of the total diabetic population, its a very select club! I have many of the challenges of T1 diabetes (but not all) and a few more because of my missing pancreas!

How many of those T3c challenges you will have after your surgery will depend totally on how much of your pancreas ends up being removed and my surgeon, despite very clear scans, simply couldn't predict what they might encounter on the day. There are a few T3cs who are only on oral diabetic meds, but most of us are insulin dependent and needing multiple daily Injections (MDI); that might sound horrific, but in practice you get on with doing it because you need to and it becomes part of your new daily routine. Wearisome at times, yet better than the alternative that I was offered - 2 years being kept comfortable and then .....

Do you have a timeline for when you will have surgery? Have you met someone from the surgical team yet? Have they appointed a nominated nurse for you to turn to with follow up questions, both before and after surgery?

Do feel free to ask anything that springs to mind. As said earlier, no question is stupid.

 

[Debby11]

Hi thanks for your reply glad to finally talk to someone who has gone through the surgery and come out the other side. I was told earlier this week that because of a cyst on my pancreas the best option would be to remove it all to prevent cancer occurring in the future…possibly. This is a big decision for me because reading all about t3 sounds very overwhelming and taking enzymes with ever meal as well. Think I must have read everything on the internet by now and still haven’t come to a decision..just want to run away and hide really ! I did see the surgeon and she has left the decision to me and have a nurse ready to answer questions but that not helping at moment…think I am still in shock.
You make it sound like there is life after surgery and I may well be bending your ear in the future with lots more questions and if you have any more information for me and am taking it all in at the moment. Thanks again

 

[SB2015]

Hi @Debby11 it is understandably difficult when they have placed the decision on you. I am sure that @Proud to be erratic has shown you that there is definitely life after surgery. With any diabetes life goes on much the same but needs a bit more preparation and planning.

The ‘internet‘ can be informative but also scary. Here you will get practical advice from people that are managing this day by day. Just keep asking any questions that arise.

 

[Proud to be erratic]

Hi again @Debby11,

Hi thanks for your reply glad to finally talk to someone who has gone through the surgery and come out the other side.

Happy to help.

I was told earlier this week that because of a cyst on my pancreas the best option would be to remove it all to prevent cancer occurring in the future…possibly.

As I said, I had to leave that decision to the surgeons. So I knew becoming diabetic was a possibility, but in truth I more-or-less assumed that happened to others, but wouldn't be me! I had panc'y cancer and had previously been very poorly, including getting a major liver infection in Dec 2019, post the basic diagnosis but before the main surgery; I very nearly didn't make it to my late brother's funeral in Jan 2020. So my perspective was probably very different to where you are now.

This is a big decision for me because reading all about t3 sounds very overwhelming and taking enzymes with ever meal as well.

The digestive enzymes are, frankly, the easiest part of all this. I take Creon capsules with every meal and even with a milky coffee. Its very simple and one easily gets into the routine; when I forget I know a few hours later! But that helps remind me for the next weeks. You can't 'overdose' on them and my Gastroenterologist described my routine as taking them in industrial quantities; but it really is very straightforward - they just have to be remembered.

Think I must have read everything on the internet by now

As @SB2015 says, trawling the Internet for any further insights can become very counterproductive. I learnt that lesson and am now fairly selective about what I lean on for my research. But this forum and the Diabetes UK main site are reliable places that I trust; the NHS sites can be OK, but often a bit "wishy-washy"; however where a specific Hospital or Trust has created a document those tend to be excellent.

and still haven’t come to a decision..just want to run away and hide really ! I did see the surgeon and she has left the decision to me and have a nurse ready to answer questions but that not helping at moment…think I am still in shock.

You will be in shock. The diagnosis alone is traumatising and then having to wrestle with "shall I / or do nothing" is extremely stressful.
I have had my moments and unfortunately stress is a major influencer of one's blood glucose levels; I've quite recently completed a Face 2 Face Mindfulness course and (surprised myself) found that very helpful; when I get agitated or just looking inwards too much I tell myself to be Mindful, draw on the large selection of techniques I've been told about and quite quickly forget what was bothering me.

You make it sound like there is life after surgery

There is, I'm able to write to you now! I won't mislead you, managing one's diabetes can be daily challenging; diabetes has been described as complicated, confusing and contradictory - and I agree with that. But over the last 2 years I've made it MY business to learn about MY diabetes, understand where possible and be selective about where I take advice from.

and I may well be bending your ear in the future with lots more questions and if you have any more information for me and am taking it all in at the moment. Thanks again

There is a recent thread in this forum called

Understanding Type 3C diabetes​

which might give you some further insight into types of diabetes, T3 and T3c. Or it might just add to the confusion!

Please do ask further questions whenever you wish. I suspect you have enough background info already and really just need to wrestle with the core question of "shall I?"

I'm glad I did, despite some of the subsequent challenges and frustrations; I didn't find this forum for about 8 months and Covid lock down isolated me. You have a far better springboard to leap from than I had at the start of 2020; plenty of people here who will patiently help you if you decide to start this new lifestyle. But, as my T1 cousin for almost 50 years remarked to me after my surgery: nobody said its going to be easy.

 

[martindt1606]

Just received the shock news I need my pancreas removing because of a cyst which will cause diabetes. Is there anybody else going through this and how they are coping it all sounds very scary.

Debby11 - I've been living without my Pancreas for 12.5 years now. I was told the night before the operation that the surgeon had changed his mind so had little / no time to prepare. Based on 12.5 years of living without a pancreas my advice would be:
1. Take a DAFNE (or similar course) - this is essentially a course that educates Type 1 diabetics on Carbohydrate Counting, Sick Day Rules, impact of alcohol, exercise, stress.
2. Have a Dexcom G6 prescribed and agree with your Diabetic consultant a pathway to integrate the CGM with a Tandem Tslim so that you can use the Control IQ functionality (other combinations exist).
3. Make appointments with the hospital dieticians. Insulin Dependency is not the only challenge. You will need to take Pancreatic Ensign Replacement pills with most things you eat and drink. Knowing how to recognise and count fat content is as important as counting carbohydrates. As with insulin your CREON (other brands available) usage will vary with every meal and is likely to increase over time.
4. If you drive advise the DVLA as you will need to change your driving licence.
5. Get in touch with a condition specific charity and try to locate a condition specific facebook group. After my Total Pancreatectomy I had good support from an earlier version of this forum which helped me come to terms with the insulin dependency but it was nearly 9 years until i found similar support from a condition specific charity and it makes a difference having support for both insulin dependency and nutrition.

 

[everydayupsanddowns]

Welcome to the forum @Debby11

Sorry to hear about the cyst on your pancreas, and your forthcoming surgery. Hope you have found the posts by some of the surgery survivors on the forum encouraging. Pancreatic cancer is a swine, and not to be messed with. In your shoes, I would certainly suggest proceeding with your Drs recommendations.

Here’s the page of information on Type 3c that @Proud to be erratic referred to:

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

 

[Debby11]

Welcome to the forum @Debby11

Sorry to hear about the cyst on your pancreas, and your forthcoming surgery. Hope you have found the posts by some of the surgery survivors on the forum encouraging. Pancreatic cancer is a swine, and not to be messed with. In your shoes, I would certainly suggest proceeding with your Drs recommendations.

Here’s the page of information on Type 3c that @Proud to be erratic referred to:

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

Hi thanks for your reply I am leaning towards having the pancreas removed..there is no cancer at the moment but it could turn that way but nobody knows when this could happen or if so I have some serious thinking to do. I have been reading about type 3c and diabetes in general as this is all new to me and it seems such a drastic change to your way of life that I am overwhelmed.
I notice a lot of people are using pumps of some kind and this is something I will have to learn about..do people get good results with these.

 

[eggyg]

Hi @Debby11 another type 3c here. I had two thirds of my pancreas removed in 2007 and I’m still here! I didn’t have a choice really as they weren’t sure if my tumour was malignant or benign until they could look at it. I also had my spleen removed at the same time “ just in case”. As it happened it was pre cancerous, phew! But it needed to be out. Apart from being diabetic, taking enzymes with every meal I’m pretty normal. Others on here may disagree! 😉 It is a big op, with lots of recovery time needed, I was only 47 so think that may have helped. Whatever you decide is up to you but there is life after pancreatectomy. Good luck with whatever you decide. Always here for any questions, however daft you think they may be. Elaine.

 

[Debby11]

Hi @Debby11 another type 3c here. I had two thirds of my pancreas removed in 2007 and I’m still here! I didn’t have a choice really as they weren’t sure if my tumour was malignant or benign until they could look at it. I also had my spleen removed at the same time “ just in case”. As it happened it was pre cancerous, phew! But it needed to be out. Apart from being diabetic, taking enzymes with every meal I’m pretty normal. Others on here may disagree! 😉 It is a big op, with lots of recovery time needed, I was only 47 so think that may have helped. Whatever you decide is up to you but there is life after pancreatectomy. Good luck with whatever you decide. Always here for any questions, however daft you think they may be. Elaine.

Hi thanks for taking time to reply as you can imagine I am taking in any advice I am given to make my decision, can I ask if you had any symptoms before your operation . My cyst was only found by accident no symptoms at all …I think I am just hoping they are wrong but like you can’t say if it is cancer till they can in there. Reading about living with diabetes sounds hard work and the enzymes as well and do you take antibiotics for the spleen as i think that will come out too. So many questions in my head thanks for helping . Debby

 

[eggyg]

Unfortunately, my history goes back to 2001 when I had acute pancreatitis caused by gallstones. I had a six week stay in hospital, emergency gallbladder removal and pseudo cyst drainage. I was really unwell. 6 years later I got pancreatitis pains again, lots of scans/tests and eventually a large tumour was found, I had my op four weeks later. The tumour had grown on the damaged part of my pancreas, each attack of pancreatitis damages the organ, I wasn’t well at all from the June 2007 when I had the pancreatitis attack to having the op December 2007.

 

[everydayupsanddowns]

I notice a lot of people are using pumps of some kind and this is something I will have to learn about..do people get good results with these.

The proportion of pump users as a percentage of all insulin-using PWD (people with diabetes) is relatively small, so I think the proportion of pump-users on the forum is probably misleadingly high. possibly because the sorts of people who frequent forums on a topic tend to be quite engaged with the topic, and interested in making the best of it, and any available options?

Or maybe pump-users just have more questions to ask!

Pumps have been shown to be very effective. They are good at reducing exposure to hypoglycaemia, are the most tweakable and flexible way to deliver insulin, and often result in a modest HbA1c reduction. When combined with a continuous sensor and linked together (sometimes called a hybrid closed loop) the results tend to improve further, with less effort required on the part of the user.

Pumps can increase risk of DKA, and are quite a bit of work. They aren’t just plug-and-play, but with a bit of careful attention they can be very effective.

 

[Proud to be erratic]

I notice a lot of people are using pumps of some kind and this is something I will have to learn about..do people get good results with these.

Hi @Debby11,
I would gently suggest that learning about pumps is a significant distraction at this time.

I asked about pumping in March and my Endocrinologist was supportive in principle but felt that this level of technology was premature at this stage in my D (then 2 yrs in). One needs to be really happy and confident with managing D by Multiple Daily Injections (MDI) first and that takes time. Also the criteria for eligibility seem pretty vigorous and then the funding needs to be available with your local cost centre (unless you fund it all privately); so unless your circumstances are very unusual you are unlikely to even be considered for a pump quickly.

I truly think this is something to consider much later down the line, ie post op and highly unlikely in less than 12 months. I'm now 30 months in and still hesitating; do I want to learn another technique and do I want to commit 6 months of constant vigilance while I learn to trust the technology? Personally I advise put this aspect on one side for now; one certainly doesn't have to go the pumping route - it's just an option for later on.

 

[anniehi]

Just received the shock news I need my pancreas removing because of a cyst which will cause diabetes. Is there anybody else going through this and how they are coping it all sounds very scary.

Hi Debbie,
Ten years ago I was in the same position as you, having to make the same decision. I had very little in the way of symptoms just a bit of mild indigestion but the scans showed a mass. I had a few tests but until my pancreas was removed the doctors couldn’t tell whether it was cancerous or not. I had many a sleepless night worrying about what to do but in the end I opted to have a total Pancreatectomy. I did not have Diabetes before my Pancreatectomy, I was 71 years old when I had the operation and because of my age I was in ICU for five days after the operation and altogether in hospital a month. I was on multiple daily injections for two years and then on a pump, six months after the operation I attended a Dafne Course to give me a better understanding of diabetes. The mass proved to be a benign cyst but was large could have turned cancerous. I have to take Creon to help me digest food and follow the Fodmap diet, recommended by my hospital dietitian. Although life is a bit more challenging now I do not regret my decision but it was a hard one and I do understand what you are going through. If you have any questions that I might be able to help with just ask.
Kind regards
Annie

 

[Debby11]

Hi Debbie,
Ten years ago I was in the same position as you, having to make the same decision. I had very little in the way of symptoms just a bit of mild indigestion but the scans showed a mass. I had a few tests but until my pancreas was removed the doctors couldn’t tell whether it was cancerous or not. I had many a sleepless night worrying about what to do but in the end I opted to have a total Pancreatectomy. I did not have Diabetes before my Pancreatectomy, I was 71 years old when I had the operation and because of my age I was in ICU for five days after the operation and altogether in hospital a month. I was on multiple daily injections for two years and then on a pump, six months after the operation I attended a Dafne Course to give me a better understanding of diabetes. The mass proved to be a benign cyst but was large could have turned cancerous. I have to take Creon to help me digest food and follow the Fodmap diet, recommended by my hospital dietitian. Although life is a bit more challenging now I do not regret my decision but it was a hard one and I do understand what you are going through. If you have any questions that I might be able to help with just ask.
Kind regards
Annie

Hi Annie
Its nice to hear from someone that has gone through this . Like you I am having very sleepless nights trying to decide what to do , when you have no symptoms you think why have an operation to make you feel worse and give you diabetes. My cyst is not cancerous at the moment but could change they can’t say..what a decision how on earth did you decide. Diabetes sounds so hard to cope with but sounds like you are doing it but like most people say it’s not easy and taking enzymes every time you eat..what happens if you don’t ? So many questions in my head the operation in its self sounds very big ..did you recover to full strength after time. I am thinking of just opting for monitoring for now but tomorrow I will be thinking something else …seeing surgeon again next week but don’t think I will ever decide. Thanks for listening to my ramblings. Take care.
Debby x

 

[trophywench]

My husband's dad died of pancreatic cancer. He was not my father in law since he was already dead by the time we met. So, basically 40 years ago, they all had to watch him fade away and starve to death.

Try 'watchful waiting' if you want. Pete could have done that with his own prostate cancer, after watching his father die and his mother ditto with bowel cancer, he wanted it GONE. My mom had ovarian cancer, my dad started with bladder which spread to liver & bones, only sister breast cancer which also retuned, spread to liver lungs and bones so she died of it too - so I was with him 500% - get it OUT asap. I asked the consultant how long would he have if he didn't tackle it now? He was truthful and said could have 10+ years BUT how long he'd be relatively able for, was anyone's guess.

 

[Dom11]

Hi Debbie,
Ten years ago I was in the same position as you, having to make the same decision. I had very little in the way of symptoms just a bit of mild indigestion but the scans showed a mass. I had a few tests but until my pancreas was removed the doctors couldn’t tell whether it was cancerous or not. I had many a sleepless night worrying about what to do but in the end I opted to have a total Pancreatectomy. I did not have Diabetes before my Pancreatectomy, I was 71 years old when I had the operation and because of my age I was in ICU for five days after the operation and altogether in hospital a month. I was on multiple daily injections for two years and then on a pump, six months after the operation I attended a Dafne Course to give me a better understanding of diabetes. The mass proved to be a benign cyst but was large could have turned cancerous. I have to take Creon to help me digest food and follow the Fodmap diet, recommended by my hospital dietitian. Although life is a bit more challenging now I do not regret my decision but it was a hard one and I do understand what you are going through. If you have any questions that I might be able to help with just ask.
Kind regards
Annie

Hi, I’m Debbys partner, thank you for taking the time to reply! Good to hear you are doing well. We need all the information possible! Thanks, Dom