total pancreatectomy

[Support Team]

we have been contacted by a gentleman in New Zealand who is looking for contact with others who have had a total pancreatectomy. Please contact us if you have been through this procedure and would like contact.

He says

" I'm 45 years of age with a loving supportive wife and 3 young children. In late Feb of this year I was diagnosed with a Neuroendocrine tumour of the pancreas. On 11th April I underwent a Whipples procedure where a total pacreatectomy was performed along with the removal of my Gall Bladder and Duodenum. I also had vascular reconstruction where my Jugular was removed for the purpose fo grafting new veins. Fortunately the tumour"peeled" away from the affected artery(all this in a 9 hr operation). I was not diabetic prior to surgery but off course I am now. I am on Creon and Insulin. It appears from the research I have done here in NZ that I am the only Kiwi who has had this particular surgery and although there is one person in Australia who has had a total pancreatectomy she is 85 and not someone who I wish to bother.

Are there survivors of approx my age group who have gone through this same procedure? I am recovering at home but it is slow and somewhat uncomfortable especially with the choices of food I am making. Being a new diabetic adds to the complication. "

[cambridgeshire]

Hello, My Father (age 64) had this procedure in April 2007 at XX. He is recovering well and we are awaiting to see what, if any, further treatment he will need. It has been confirmed that a cancerous tumour was removed and as far as they can tell it has not spread beyond the pancreas. The formal diagnosis was secondary renal as he had a Kidney tumour removed ten years ago. I will speak to him to see if he is prepared to make contact himself. Kind Regards. Helen. xx UK.

[chucha1185]

Hello,

I would like to contact the New Zealand man who is living with a total pancreatectomy. We belong to a quite exclusive club, although I certainly don't remember applying for membership... I had surgery for IPMN on August 1 of this year. Because things looked good at the time of surgery, the surgeon only removed the pancreas and spleen, leaving the gall bladder, bile duct and duodenum. A week later biopsy reports came back with the alarming news that a 2 cm. tumor in the pancreas was malignant. However, since the nodes were clean, the oncologist says that my situation is "the best case scenario" for a cure. I was fortunate that my surgery was performed laproscopically--I was able to leave the hospital on Aug. 8, and now, 2 months later, I have largely recovered from the actual surgery. I am now ready (tomorrow) to start my second (of 12) 3-week-cycles of chemotherapy--not looking forward to it at all. AftIer the chemotherapy cycles are completed, I am scheduled for a 6 week round of radiation therapy. Does anyone know if radiation is still being used in Europe, the UK, New Zealand, or Australia. I've heard it is not. It is still standard treatment in the U.S., but I'm becoming a bit distressed about all these treatments...

Diabetes is a problem--my glucose levels swing wildly due to the chemotherapy. The endocrinologist says that, until the chemo is completed, it will be very difficult to control. He is not restricting my food intake because of the nausea and food-avoidance that are part of chemo.

Personal stats: I am a public school teacher (on sick leave) in Oxnard, California. I am married, have 3 grown children and 6 grandchildren, and have 2 stepsons who live with my husband and me.

[potlucknelly]

Hi. I wondered if anyone who has experienced a total pancreatectomy would be willing to enter into contact with me as my mother has been told she needs one and is very scared of what the effects will be. She will have to have her pancreas, bile duct, spleen and part of her small intestine removed though they say she is precancerous so hopefully will be clear afterwards. Her biggest worry is what her life will be like post surgery both when recovering and in the future. Is anyone out there willing to share their experience with us

[Go green sue]

Hi, my name is Sue and I am 60 at Christmas. I cannot tell you how your mum will be post op but I can tell you she is not alone with how she is feeling.

I have what are called IPMT's on my pancreas and they have been scanning them for 2 years and they have now turned suspicious. I am therefore going in Saturday 16th or 23rd for a partial pancreatectomy and removal of spleen, although he says when he gets inside he may have to remove more like your mum. Hopefully he is doing it via keyhole surgery. I live in the Sheffield area.

I have been feeling ill for about a year now- the IPMT's were picked up accidentally when I had a scan for indigestion. I struggle to eat, my bowels are unpredictable, I am very tired and have lost 3 stone.

I have been told I may be diabetic if he only takes part of the pancreas or if he takes it all I will definitely be. I take creon now and will need to continue taking it. I am very worried about the actual surgery and the recovery. I know I wi spend about 3 days in high dependency unit but can expect to be out of bed the next day.i will be given a PCA pump to control my pain myself and a tube up my nose into my stomach to help with sickness. I have been a nurse so I know everything will be done to make us comfortable. Often the fear is worse than the op!!!

Give my support to your mum and I will let you know how things go.

Sue

[Go green sue]

Hi it's sue again. Why not ring Dianne or Jenni on the support line for some advice for your mum. Dianne has been supporting me- they are specialist nurses - and their advice, knowledge and support are tremendous.

Sending you best wishes Sue

[J_T]

Good luck to you and everyone undergoing this surgery.

Best wishes

Julia

[potlucknelly]

Hi Sue. I only just saw your reply. My mother has had her surgery and you must have had yours now too. I hope you are doing well. It is 4 weeks tomorrow since my mother had her total pancreatectomy and she is doing well. Her appetite has improved a lot and she has no sickness anymore. her main problem is tiredness and pain. It is kept under control with regular tramadol but does restrict her getting more active. i am not sure if this is normal but I am guessing it is after such major surgery. While none of this has been much fun it has been a lot easier than she or I thought it would be. She is also managing her diabetes really well and the support from the hospital has been brilliant. Good luck with your recovery x

[Robert_H]

Hi Nelly,

I hope you Mother is well on the way to getting back to normal now (or more normal at least).

I had a total pancreatectomy in May this year. It wasn't planned that way, I was going in for a Whipples but a complication found during the surgery meant that they had to remove my whole pancreas together with the spleen and the other bits associated with a Whipples.

The first few months are tough as your Mother will be experiencing. Getting to grips with recovering from the surgery, wound healing, eating and digestion and Type 1 diabetes. Then there's some chemotherapy thrown in just to make it even more interesting.

Right now though, nearly 6 months later and on my free week after 4 cycles of chemo, I can't believe how well I feel. The wound has healed well, I'm eating well and I'm slowly mastering the diabetes. I'm just short of 52 and was otherwise relatively fit so it could be different if your Mother is older but I did plenty of walking as soon as I could and I make sure I eat well. The best advice I've had is if you have digestion related stomach pain or all is not as it should be in this department, take more Creon. Increasing how much I have with meals has made a huge difference to my general well-being.

As has been said on an earlier post, we seem to be a fairly exclusive club so please do get in touch. I'm sure I'd benefit just as much as your Mother from comparing notes. Give her my best wishes and I look forward to hearing from you.

Robert