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waiting for diagnosis


littlesister
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Sorry to hear you're still in the dark about this. I don't understand why they can't give you the biopsy result, mind in my experience they are often indeterminate.


I hope it's good news.


Mark

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I feel such a fraud, I spoke to the specialist nurse late this afternoon and the results showed no cancer cells but mucinous substance in cysts. Obviously I am delighted, I am also aware that these will need to be monitored.


I spoke to the nurse about the pain, discomfort and fatigue, she said she would mention it to the team but thought it best I go back to the first consultant I saw at Cheltenham. I was referred there because of the symptoms of pain, fatigue and bowel problems! Perhaps it is stress because I have been so worried but that was only recent. Anyway thanks to you and all on the discussion board who have been so supportive. I will still drop in from time to time and have my fingers crossed for all of you struggling with this awful disease and all those family members and friends supporting you.


Best wishes


Judi

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  • 2 weeks later...

Very, very nervous. Tomorrow I go to xx to formally get results of endoscopic ultrasound and biopsy. Of course I had the copy of the letter with results and thank goodness for Diane at PC UK for interpreting some of the language. The choice it seems is between wait and see and pancreaticoduodenectomy. But what choice? Thankfully Diane has given me a list of suggested questions and I have done masses of research but without any medical background, I was having to look up words. For instance the Surgeon refers to a lesion - what is that? well it seems the word is interchangeable with tumour - but I have a cyst?? Also when is surgery recommended? well it seems some say >3cm, some say over 2cm. Mine apparently is 2,5cm??

The 'lesion' is benign but some say needle biopsy is unreliable. I will have a daughter, who is very level headed with me, other daughters stand by for report. I am also dealing with a niece who referred to me being a smoker, unspoken were the words "well what did you expect" - didn't take much solice from that startling bit of insight and the red mist descended, shortly after followed by if I 'wait and see and it becomes cancerous I only have a 1-5 chance of survival' - thanks a lot. Today I went to my GP surgery for an INR (regular I am afraid) and where usually, the attitude there varies between offhand and reasonably genial, today everybody was just too kind - frightening. Although my nurse did tell me another patient had had the operation and was doing OK much to her surprise!

Well enough moaning, I know most of you have to deal with much worse than this. Perhaps I will feel more sure and reassured after tomorrow's meeting.


Judi

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Good luck for tomorrow I will be thinking of you.

As for your niece the phrase 'if you haven't got anything nice to say....' but concentrate on yourself and lean on your daughter she will be your biggest comfort on the day, I am sure she is strong enough and will want to support you. I am saying this as the daughter of a pc patient.

Nikki

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Met with the consultant on Friday, what a lovely very human, personable man and yes, he is back at work, amazing how headline writers are not interested if no scandal is found but I for one am very glad he was there for me.


The news is that it is indeed an IPMN and to distill all that was said, if I were young and fit he would recomend a whipple procedure. My age 67, is in the grey area but because I have a number of other health issues some of which would have a direct impact on my recovery, he would only recommend this if the lesion changed. His proposal was to monitor me. His reasoning is that life expectancy for me (all being well) would be say 85 - 18 years away, it could be no change in the lesion in that time, in other words I could outlive the change to cancer. I have another condition where this applies, so lets hope my body outwits these B*****ds. He did prescibe the CREON for me and I am about to start that to see if it helps. Interestingly he told me that this condition really only applies to women and is essentially hormonal and that therefore, it is very different to my brother's Pancreatic Cancer - so unlikely to be any familial threat. Having said that he told us that we would look into this further at Cheltenham.

Thank you for all your support. Will still dip in from time to time to see how you all are.


Judi

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Glad that you got good news. Always worth getting second opinion as to options I would have thought but sounds like no treatment is advised at the moment. Keep alert though and thanks for thinking of us now and in the future.

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Hi Judi


Wonderful news as we don't want one more person suffering from PC if at all possible. I hope your “watch and wait" policy pays off which it should do if you are vigilant. Creons are a boon to aid digestion, maybe supplemented with Omeprazole or similar which seems to increase their effectiveness.


Do "pop in" on the forum when you can.


Love and Peace


Mike

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You are such a lovely lot, not fair bloody PC came into your lives, but what is fair?


Mike already take omeprazole, missed programme Radio four about it (didn't seem as if Dr.Porter was recommending it) but I will try and do a catch up and in any event I haven't had side effects. Hopefully, as you say, it may with the Creon sort out my digestive problems.


Feel a bit of a responsibility to plan next 18 years but will probably do the usual and resist (very lazy woman - me).


Take care and I will make comments now and then - I am that sort of person.


Judi

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so pleased for you honey...


remain vigilant and report any changes in health to the docs straight away xxxx

will eb thinking of you take care


love and hugz

marie

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  • 5 months later...
littlesister

Hello all

I'm here again. Have a follow up MRI on Wednesday at {name removed - moderator}. The lovely consultant has resigned. I received a letter a couple of months ago telling me I had been referred back to {name removed - moderator}, this despite all the mistakes made there AND furthermore saying to {name removed - moderator} I am due an MRI in December 2014!!

Mr. {name removed - moderator} had said 6 monthly checks on the IPMN. Having now pointed both these facts out to {name removed - moderator} I have the appointment this week at {name removed - moderator} and they now know I do not want to be referred back to {name removed - moderator}. I have no idea who I am now under at {name removed - moderator} and just hope it is someone in whom I can have confidence.

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  • 1 year later...

Thinking of you little sister.

I was diagnosed with PC in Dec15, and still waiting for confirmation of surgeons decision as I have PC and adrenal gland.

I wish you a good nights sleep and speedy support. Sending lots of love xx

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