IPMT. Dad's new diagnosis.

[Annetagrab]

My father who is 76, was diagnosed with 'inoperable pancreatic cancer' one month ago after he had a scan to see if his prostate cancer had spread. He was asked 'Have you lost any weight/, have you any discomfort?' ('No' to both) He was checked for jaundice, (he has none). The possibility of being included in a trial was mentioned and on this basis he travelled to a different hospital for a biopsy last week. The biopsy was not carried out as it is now believed that he has IPMT and that it may be operable. After originally being assigned a Macmillan nurse, and being told that getting on to a trial 'would not change anything' and experiencing all the associated trauma, we are now awaiting the results of a meeting of hospital staff to see if some treatment is possible. Has anyone experienced anything like this and if so what can we expect next? I have not found too much information on IPMT so far and am coming to the conclusion that this is quite rare. Any advice would be very much appreciated. Thanks, Sue.

[megascops]

I think people will be reluctant to post on this, given that it appears to be a relatively rare condition. We all become involuntary expert laymen when our relatives are faced with this terrible disease, but it is pretty impossible to give much useful advice when the condition is so different.

If this if is the diagnosis you may be relatively lucky within a very unlucky group, in that the prognosis is a bit better than for ductal adenocarcinomas which are much more common.

My only advice would be to be polite but very persistent in trying to expedite the correct diagnosis. Once you know exactly what the situation is, it is very important to be very positive, but you can't really be positive about the situation until you know exactly what is wrong, and this uncertain period is very stressful. My thoughts are with you.

[Annetagrab]

Your advice to be persistant was encouraging to read. I have had a dread of dealing with health professionals since the death of my daughter, when I feel I accepted that, which should have been questioned.

I understand that people may be reluctant to post, however, I hope that my father will be able to communicate with someone who has taken this particular journey, as I feel it will help him.

Perhaps also, this post may help someone else. My father almost didn't go for that scan/biopsy because 'it would not change anything'. At this moment we have some hope, perhaps it is not too late.

Your reply was very much appreciated.

Thank you.

[Annetagrab]

My father has just had the results of the biopsy on his pancreatic tumour, performed 3 weeks ago. It was thought that he had IPMT or IPMN as it is also known. This has been confirmed. The grown is benign although he has been warned that it likely to become malignant. The team looking after him will continue to monitor the situation. He is experiencing mild digestive problems and some itching that is not yet causing him too many problems. This is probably due to the size of the tumour affecting the duct which it surrounds. At the moment he believes that he has been fortunate, in that his problem was spotted when it was. However, he still feels very strongly that not enough care was taken in analysing the results in the first place. Apparently 2-3% of all pancreatic tumours are of this type.

[Support Team]

why did it take approx 5 weeks to get the biopsy and another 3 weeks to get the results?

yes care is needed to get an accurate diagnosis of the type of tumour/pancreatic mass which can add to the time it takes to get a diagnosis

[Annetagrab]

I'm not sure why it took 5 weeks to have the biopsy done. Perhaps the situation was no longer considered urgent. My father was told that he would have the results by the following week. This didn't happen and he rang several times to chase them, being told each time that they were about to be posted.

[jobby29]

Hi, My mother was told that her IPMT was inoperable on the 18th of September, back in May my mother thought she just had a tummy bug, but it became clear that wasn't the case when she turned jaundice, she had a stent fitted to ease the jaundice and was sent to see a consultant in July. We were told that the she would have to build herself up for an operation which the consultant hoped to perform in August, he told us the tumour appeared very small and he would not be able to tell us much more untill he preformed the operation, my mother had no desire to eat so spent the next 4 weeks in the local hospital being fed thought a drip after this time she was allowed home where her drip feeding continued for 17 hours in every 24 . Unfortunatley her cancer must have been far worse than first thought as she never gained any weight and on a return visit to the consultant on the 18th September she was told that it was inoperable because of her frail state and that no treatment was available for her other than pain managment. By this time she was very frail, spent most of the time asleep and was talking liquid morpin for her pain. She passed away 4 weeks later on Friday 17th October, I feel so angry that we seemed to have little if any support from the consultants, which i might add thankfully doesn't seem to be the case for you.

Hope that your Father is doing well

Barbara

[tc0001]

Barbara

So sorry for your experience. I don't know of anything that I can say to ease your pain. Hang on to your good memories and please don't suffer by yourself.

Best wishes

Tracey

[jobby29]

Hi Tracey

Thank you for your kind words, it is so hard and i really dont think i have come to terms with everything yet.

Take care

Barbara

[Annetagrab]

It is almost 3 years since my father was diagnosed with IPMN. He has been in good health until recently when he started to lose weight.

Due to the IPMN diagnosis his condition has been regularly checked. He is now taking enzymes with his food and we have found out today that the tumour has turned cancerous.

My father is approaching 80 but is considered to be well enough to have his pancreas removed. Further checks are being done to make sure that the cancer has not spread. If all is as expected, then an operation will be arranged at xx Hospital. Does anyone know how long (approx) the total recovery period is likely to be? He has been told that he will be in hospital for a month.

Thank you.

[PCUK Nurse Jeni]

Hi Annetagrab,

The procedure will probably be a Whipple's operation, or a Pancreatoduodenectomy.

It is a major operation, so a month at your dad's age is a good indicator. However, it may take many months to fully "feel like normal" again. The operation usually lasts 4-7 hours.

The head of the pancreas, a portion of the bile duct, the gallbladder and the duodenum are removed, along with part of the stomach. After their removal, the remaining pancreas, bile duct and stomach are joined up to the intestine. This allows the pancreatic juice, bile and food to flow into the gut, so that digestion can proceed normally.

If you would like to email me at support@pancreaticcancer.org.uk then I can email you some literature about the operation, including a diagram.

It also talks about post-op potential complications.

Kind regards,

Jeni -PCUK Support Manager.

[Annetagrab]

Thank you. It seems that the operation will be a pancreatoduodenectomy. It is due to go ahead in the next 2 months if the cancer has not spread. We await the results of his latest scan. I will email you should the operation go ahead. Thank you. Sue

[AnneD]

Hello Annetagrab,

I have had a similar experience to your dad's having an IPMN which was being monitored until it became aggressive and contained malignant foci,

but had not spread beyond the pancreas.

In fact this has happened twice necessitating a distal pancreatectomy in 2009 and a Whipple's last December. I was in hospital for twelve days.

I am making a good recovery from the Whipple's and have a good appetite.

I'm still very tired after three months but doing pretty well although having to cope with diabetes.

Best wishes to your dad and fingers crossed for a successful outcome.

Anne

[Annetagrab]

Thank you Anne. I am so sorry that you have twice had to deal with a serious operation, but at the same time I am pleased that you have a positive message for my father (given this particular form of cancer), we have not heard of anyone with a similar experience. I will pass this on to him. He is an energetic person and fit for his age, we are very hopeful. He does realise now that a recovery, of sorts, may take several months. Wishing you the very best, I am very grateful that you have responded. Regards. Sue

[Annetagrab]

My father has now been given the news that his cancer is inoperable due to the tumour's proximity to a major blood vessel. We do not know if it has spread as this information has not been offered and we have not asked.

It seems that they had his age down incorrectly and were treating him thinking that he was 8 years younger, I wonder if this has made a difference in that we were lead to believe that an operation was possible .

I am not upset about this because it seems that my father did not want the operation anyway and he is glad not to have to make the decision, he has also refused chemo as he is still well enough to get about and is pain free, though he is very tired now and has diabetes. We do not know how long he has, but following my father's wishes no one has asked. We will take each day as it comes.