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waiting for diagnosis


littlesister
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Hi Judi


I haven't posted to you before as I haven't been on the forum for a little while. However, a belated hello and I am sorry to hear of your traumas trying to get a propery diagnosis.


I hadn't heard of a mugga scan before but found this:


http://www.macmillan.org.uk/Cancerinformation/teensandyoungadults/Testsandscans/MUGAscan.aspx


The nurses on here will probably have more info as well if you contacted them on Monday.


Lots of love


Cathy xx

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Hey Judi,


Well yesterday was great I saw my grandkids, (5 and 3 mths) and it was so lovely to have the time to properly bond with the younger one, we're getting on famously...but my son made me put up with the footy ...GROAN.

Then later on my father in law came who I havent seen for ages, he gave me some advice to think on, don;t know if I'm quite ready to act on it, I only lost my mom 6 weeks ago and havent begun to process her passing but people seem to think I should be moving on by now but its just too early he was telling me to put my moms photos away and close the book on them so to speak ... NO WAY am ready to do that, my daughter had to remind him it had only been a few weeks not a few years but he was only trying to help. I do have her pic on my desktop (pc) and my facebook so those ones i have took down as I do see the sense in those ones though.

Then last night my brother has had a breakdown (Mike you will remember how little help I had caring for mom, and how we said they would have that guilt to deal with afterwards? Well yeah it happened and of course I helped counsel him through it as I don;t like anyone to suffer..)

So I spent 2 hrs helping him get his head straight which actually helped me see some things in a different light..kinda helping myself as well as him..

Today...I am chill city lol .. xmas shopping all done ... weather sux and I have ZERO chocolate in the house (what is the world coming to???)

I thought packing in smoking I would find it difficult but I am finding it really easy..AND am not substituting food for ciggies either ... hence no choccies in .. WAAAH but I want some now lol ...

Judi though when will you be able to discuss all your concerns? Whens your next appointment? The Mugga seems to be a Gamma Scan, I wanted a Gamma Scan for tendon injusries I had but they wouldn't give me it as it was too expensive and I ended up with an MRI instead ..... is this what they've offered you?

Anyways may pop to the shop soon get some of that choccy, weather in geordieland sux though today .. better put me thermals on first :)


Chin up for now honey ... try to take your mind off things if you can ... distraction is key atm while you're obsessing (which you can't help)..

we're all here for you..


Love and Hugz

Marie

xx

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Hi All


I had several Mugga scans whilst on the clinical trial to check the bloodflow round my heart. Much as it says under the link that Cathy posted but the ECG in my case was ECG lite with only 4 or 5 electrodes compared to the full Monty I got with the trial nurses. Also two injections one that apparently helps the radioactive isotopes to adhere to the blood platelets thus helping the tracking process followed after about 20 minutes by the isotopes themselves. A very calming lie down in a darkened room while the scan takes place makes this one of the most enjoyable processes as I usually managed a little zizz!!


I think the one on Wednesday was the last one as it was the final check up as part of my trial/


Seems your endoscopic ultra sound will take a while to be interpreted but let's hope the results are positive for you Judi. Waiting is so frustrating but seems to be inevitable I'm afraid and not made any better by being dragged out over Christmas.


Love and Peace


Mike x

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Thanks all for the responses, just asking about MUGA because Mike mentioned he had had it. Was beautifully distracted today, friend took me to the Woolpack in Slad (Cider with Rosie) for lunch, her treat, then back to her's for coffee, although my current situation wasn't off the agenda, it wasn't front of the queue, be all and end all.


You all seem so well balanced, I am deinitiely off balance, as I said earlier - self obsessed but expect you have all had your own bloody nightmares because of that small gland.


Going to ring specialist nurse at XX tomorrow - hope she is not yet on Christmas holidays, will also try and speak to GP, after all he did tell me a week ago I was now on the priority list! Not sure how well he is able to interpret the letter but is for sure he will have more knowledge than me, despite my scrutiny of the web.


Had a lovely present left outside my flat door by a neighbour, I don't often see, lovely tin christmas tree balls with chocs and marzipan within from Germany. Must get some cards done for neighbours and source a nice bottle of wine for this kind neighbour.

As I am off on 27th to family and then on to Norwich to friends, neighbours and local friends coming in to feed my cat, so will need to do a bit of a blitz on the flat - all this should distract me.

Keep well

Judi

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Spoke to GP first today, he thought that that identified by CT Scan not unusual and didn't know why they were doing an endoscopic ultrasound???

Spoke to Specialist Nurse from xx later who first wished to establish if I wanted to know whatever outcome - how refreshing! She discussed possibilities of both problems identified - did not give me the BS of it being "normal for a woman of my age" and went on to tell me that this test may not be able to reveal all and may require to be done another once or twice. She was comfortable in discussing the most sinister outcome and also the least worse, she was also candid about surgery and that that should be avoided if at all possible but she did say if indicated and I really wanted it it would be carried out. She asked permission to call my GP in order to have my full bloods done - and that will be tomorrow. All in all I feel far more comfortable - I cannot stand being left in the dark and am positively full of rage if anyone tries to hoodwink or BS me. I feel I can largely put this away for Christmas.

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Oh my giddy aunt, the consultant I am to see at XX has just been suspended suspected of branding his initials on a transplant patients' new liver!!!!


Judi

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Yes, I must say that whilst shocked, I did find it funny. Apparently it wasn't harmful to the patient and I guess most medics have to have a pretty dark sense of humour to avoid getting depressed - it does seem to suggest a little meglamania 'though.

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Had quite a nice day .. misssed my mom really badly as i spent the last 4 christmases with her .. but I did have a nice day with family and was spoiled rotten xx how about you??

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Oh good Marie, thanks to XX special nurse and her honesty, I have largely been able to put the worries behind me. Spent Christmas Day with eldest daughter and S in L and grandchildren and a friend. Quiet day today to prepare for going away. Tomorrow all three daughters and grandchildren and youngest's family home and then on to friend in Norwich for New Year - so pretty packed and very spoilt.


Judi

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yep u gotta live for today honey even if you are'nt ill .. make the days count regardless xxxx hope you ahvea lovely new year sounds like just what you need


xx

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  • 2 weeks later...
littlesister

Happy and hopefully healthful New Year at the very least contented and pain free to you all.

This Friday is the day for my endoscopic ultra sound which hopefully will give true diagnosis first time, although I was warned by specialist nurse that sometimes one or two further are needed. I wonder how long after I will find out the prognosis. Didn't dwell on it overChristmas and New Year,'though every news item and programme seemed to refer to pancreatic cancer and now Simon Hoggart! Still I would take 3.5 years especially since it seems he was well enough to work until November. We will see.


Keep well warm and dry.


Judi

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littlesister

Do you know what is bafling me - no weight loss.I am sill as chubby as ever. I am not a glutton, don't ever eat meals as quickly as others. never eaten as much as friends but love food.Only eat what I fancy and when hungry. defo not a fan of frozen meals - like to cook, but no proper meal today, but loved my camembert of ciabatta rolls.

I also have an unstable thyroid AND was diagnosied with hyper thyroidism, now I know that means thin with possibly bulging eyes. I have neither. Endocrinologist talked of removing thyroid - but I was plump and I still have it 'tho it trips under active sometimes- oy vey.

Everybody with PC which ever type seem to lose weight - does this mean my significantly dilated pancreatic duct the whole length of the pancreas and the cysts they believe are in the uncinate process are harmless - I think not but I m confused and yeh! scared

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marie souter

Hey honey


Wow that does sound like a gd sign all the PC sufferers I know all have weight loss issues .. Am so pleased u have a gd appetite xx not long now to the scan .. Tomorrow is it? I think it was a WK to ten days for moms results from her biopsy but her initial scan was done as an inpatient so we had those v quickly ... I am willing that the new year brings the result of no PC for u honey xx


Love and hugs

Marie

Xx


Oh how was ur new year away?

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littlesister

Thank you Marie, seems daftthat I have spent my life yoyo dieting, don'tseem to eat as muchas others but still retain weight BUT in this circumstance it may be very lucky. Already had the CT,which is what led to this Endoscopic ultrasound tomorrow. x

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Thanks Marie, today may be the day, I find out. Bit nervous. Had some soup already as tum should be really empty by the time the test starts. eeeek!

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What a rollercoaster. First the confusion and fear of the first phone call and subsequent calls from first specialist nurse and GP. From them being so sorry for my probable diagnosis to "normal for a woman of my age" and then GP telling me he "doesn't understand why I have been referred for an endoscopic ultrasound" leaving me to think that I was being dramatic for no good reason. Then on seeing the consultant radiologist before the procedure on Friday being told it could be possible the pancreatic surgeon would recommend removal of my pancreas! This latter was a possibility that had never arisen during my research and something I didn't think possible.


After the test, this consultant told me that the duct, although substantially dilated was clear and it may possibly have always been this way but that there are cysts in the uncinate area, he thinks the biopsy is likely to show they are not cancerous that they are IPMN and the possibility is that I will be monitored to see if they do become cancerous. He believes that this has absolutely nothing to do with the IBS symptoms that took me to the GP in the first place and I can only conclude at this time that the lack of clarity of the barium enema, leading to the CT scan was lucky and finding these pre-cancerous cells, if that indeed is what they are, may not have happened until was too late.

I will have to wait for a few weeks until I see the pancreatic specialist to confirm this situation. It looks like I may be a long term visitor to this site - fingers crossed.

Judi

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Judi, another wait is pretty much normal with this thing, but the expectation that the problem is a non-cancerous cyst is good news. The diagnosis of anything associated with the pancreas never seems to be straight forward and yours seems to have had more than your fair share of twists and turns but hopefully with a positive outcome. We await the test results with positive anticipation.


Take care


Steve

X

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Sorry folks, I am on here again moaning and worrying.Gone from high to low, because I am so tired, no exhausted is the word. I want to sleep most of the time and I have had a lot of discomfort. The pain I am experiencing is in left side and feels like I have been kicked almost winds me and goes through to my back - pre existing problem with spine is exacerbated. also pain right upperside - though this does not wind me. It is probably the pre-existing stomach problems I have had and back to feeling nauseous every morning. I can't even face wine at moment. I suppose it is psychosomatic but can't help worrying that the results may not be what I had expected.

Have put in a call to specialist nurse and wait for re-assurance but fear I may get more of the same that I got from my GP, annoyance at my fussing.


Judi

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PCUK Nurse Dianne

Hi Judi,


If you wish to email us on the support line email (support@pancreaticcancer.org.uk) we may be able to help you with some of these questions about the pancreatic cysts and the possible IPMN, so please feel free to contact us and we may be able to give you some more information.


Dianne

Support team

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