Symptoms

[josi1971]

Hello, I am new here, I have come across this site and have been emotionally overwhelmed by the stories on here and I have complete admiration for the people and their loved ones who are affected by Pancreatic Cancer, your bravery astounds me. I am here because I am worried, my husband is 42, he has been suffering from indigestion for over 12 months, he has also in the last 12 months started to go off certain foods as he attributed his stomach pain and indigestion he was experiencing, to these foods. After leaving out certain foods from his diet he felt that it was helping but then the abdominal pain in the area above his belly button started to come back after eating and came back rather more menacingly. He started to take pain killers and for a time this helped, he also went off beer/lager etc as he felt this made his pain come on too. Just before Xmas 2014, he started to notice the pain had moved to what he thought was lower bladder pain, he also noted that he couldn't start urinating straight away sometimes had to give up and try again later also it was trickling out stopping and starting etc and the stomach/bladder pain was intensifying. We booked appt at docs he did all the blood tests like FBC, liver function, amylase, hyper bacteria pylori test on stool also. and booked in with Consultant who deals with prostate issues, we had a long wait for that appt. All tests came back normal Apart from hemoglobin count which they say is low. Whilst waiting for consultant appt things changed again pain definitely was confined to the upper abdominal area and now wasn't going away at all it was a constant dull ache in the abdomen which sometimes goes through to the back but mainly pain in abdomen and intensifies every time he eats. The pain has become worse week by week. He has felt nauseas in the mornings but hasn't been sick the pain gets so bad that sometimes it makes him feel breathless and affect his chest and gives chest pain like really bad indigestion. We had prostate appt and prostate normal but after hearing my husbands symptoms the consultant has booked him in for a CT Scan this coming Tuesday 10th Feb 2015. We ended up in a & e two nights ago because after he ate his dinner the pain got really really bad and he was scared, we went to a & e explained everything that has happened and what tests he has had so far but the experience in a & e wasnt great and we did rather feel like we werent being taken seriously. Doctor ordered an normal xray of abdomen and when the result came back he said my husband is suffering from constipation ! we questioned are you certain as he has had pain for more than 6 months and is going to toilet (no'2s) every day, the doctor said its constipation and he said all bloods done half hour ago have come back normal. He sent us away with laxatives and gave my husband an enema, My husband has taken the laxative for last few days and hasn't experienced intense pain but the pain has not gone it is just there in the background. He has also been going to toilet regularly as he always has been. Last night after eating within minutes of finishing he was left in agony with the most terrible indigestion and today after eating lunch is doubled up in pain in the abdomen making him feel very unwell. I am so concerned and am worried it is PC, he isn't jaundice, he hasnt lost weight as far as we can tell but his stomach is and has been for a couple of months very bloated. He's always tired and stools from what he tells me seem normal. He sometimes sleeps sat up as this seems to ease the pain, although it doesn't make it go away completely. AM I worrying about nothing, we haven't told docs we are concerned it is PC, are we right to be concerned and does anyone else think we should be pushing to check for PC, any words of advice would be very welcome, do any of these symptoms ring bells with anyone on here, any help would be really really appreciated thank you x

[Guest]

Hi josi1971

What are your husbands stools like? Even after flushing, is there an oily film around the bowl? Is it an offensive smell? Is he gassy? Gurgling stomach? More flatulance than normal?

Even if your answer is no to all the above, if you are concerned it could be pancreatic cancer, then get it ruled out. Doctors think of this cancer last. If it is, you can't waste time. Push for tests. Push for results.

Good luck. We are all here for you if it is pancreatic cancer.

Leila xx

[sandraW]

Just wanted to say Hi, and welcome to the forum. Of course you are not worrying about nothing your poor husband seems to be really going through the mill.

The nurses on the site will be available on Monday to Friday, why don't you give them a ring, the number is listed in information and support. I spoke to them and they were incredibly helpful and really easy to talk to, I am sure they will be able to help set your mind at rest.

Please let us know how he is, take care sandrax

[josi1971]

Thank you both Leila and Sandra so much for your replies, in answer to the questions i am not entirely sure what his stools are like, he is and always has been very private about this sort of thing, it has been difficult for him to open up to me and talk about his stools i have nagged quite.a bit to get what little info i have about them as it is, he tells me they seem normal he did however say that when he had to provide a stool sample he felt his stool were possible oily but he couldn't be sure, again he doesn't like to talk to me about it, he is gassy but it is coming out as severe indigestion he says color of stool he thinks is normal and he said he couldn't be sure if foul smelling or not! Its so difficult getting him to talk about this, he's been in pain tonight with stomach pain as normal and terrible indigestion I will take the advice and perhaps speak to the nurses on here i am just hanging on till next Tuesday for the ct scan i wonder if this will show us anything and also i wonder how long you should expect.to.wait.for the results x thank you both again for your replies .xx

Edited February 7, 2015 by josi1971

[josi1971]

He has complained about a gurgling stomach before x

[Didge]

PC symptoms are many and varied. your husband has enough to make it suspicious for PC. DO voice your concerns about PC to the docs! Say you want it checked. If it isn't that will be your mind at rest - if it is you need diagnosis quickly. Will the CT scan cover the pancreas? If so you should know this coming week. Thinking of you and we are all here for you.

[josi1971]

I am not sure whether the ct scan will cover the pancreas, we were told it was a ct scan of the abdomen, i am so worried thanks for your advice and support x

[Didge]

There is time to voice your suspicions and ask for it to include the pancreas. Otherwise it will just mean a delay and another scan if this ones shows nothing important. I completely understand the fear, my fella has just had another scan which we are expecting to give bad news - but try to live one day at a time and not to jump the gun. It still may be something completely different so go with that if you can for the time being and hopefully your fears will be unfounded. x

[josi1971]

Hi, thank you I will make sure i ask for it to include the pancreas i will try to remain positive, thank you i hope your news isn't bad x

[Pete12]

Hi Jos, and welcome. Sorry to hear that your husband is having problems but like others have said, it's time to make a fuss and ask for a full abdomen CT scan with contrast. Regarding him feeling sensitive about discussing his symptoms we have all been there I'm sure but it is important. If he has very pale stools and there is a "oil slick" in the toilet he needs to tell someone. Also another thing to look for is the stools being flatter (ribbon shaped). You did mention that he has had a blood test for amylase/lipase level which would indicate pancreatitis, what were the levels?. There are numerous possibilities for the symptoms you describe so fingers crossed.

Regards

Pete

[josi1971]

Hi Pete, i need to get him to talk to me about his stools as this is an area he doesn't want to discuss with me, regarding amylase levels again i need to find out the doctors wont speak to me so i have to rely on him ringing them from work and telling me what they say, he told me that they said they are satisfactory ! Its so frustrating because he wont push for more information, satisfactory isn't really good enough is it i am finding it hard to be so pushy as it comes across as nagging but i am worried as the abdominal pain is there constantly now and is wearing him down, good thing is ct scan only 3 days away i will make sure i ask all the right questions and demand that they check for PC no matter how much of a nuisance i am, thanks for your help

[Didge]

Yes, you do that. You want to get definitive answers. And do remember that we on here see pancreactic cancer in everything because that was our reality. But we have had others on here worried about what are familiar symptoms to us, and it has turned out to be something else. But you need to know and hopefully you will know what you are facing soon. Let us know how things go. x

[josi1971]

I will do thank you, the help and advice on here has been tremendous and as I have already said the people on here are exceptionally brave people and i feel very lucky to have come across this forum and even more lucky to be given the time by people dealing with this horrible disease x

[SusannaUK]

Dear Josi1971,

Welcome to the forum. I am sorry to hear that your husband is suffering abdominal pain and I can just echo what the others have said that it is important to check for PC. Your husband's symptoms are indeed worrying and I would definitely push the doctors to check for PC because as Didge said your husband has enough to make it suspicious for PC.

My husband had similar symptoms (for example sleeping in sitting position helped him ease the pain) and we ended up at A&E 6 times in April last year where they checked his blood and other things and we were always told that everything was fine and we were not taken seriously. Unfortunately our story is very sad. If you read my story you will see what we went through until they finally found out that he had PC. Time was a big issue.

I really hope that your husband has something else and they will find a solution to make him feel better. Please make sure that CT will cover the pancreas area.

I am thinking of you and I hope all goes well on Tuesday!

Susanna xxx

[josi1971]

Hi Susanna I am so sorry about your husbands diagnosis and indeed the time it took to get his diagnosis, also thank you for your time in replying to my post it means alot, everyone on here are so unbelievably helpful. I will push as hard as i can for answers and become a nuisance if i have to, ct scan tomorrow morning so this may give some answers hopefully, thanks again, josi xxx

[Pete12]

Hi again Jos. It appears that you do need to push for more information from the doctors and don't be afraid to "be a nuisance" just explain to them how important this is to you both. Regarding Amylase/Lipase test "satisfactory" just isn't good enough, ask what the levels actually are. The reason I say this is because the symptoms that you describe are identical to mine in 2008 when I was diagnosed with pancreatitis. The cause of mine was misdiagnosed for two years, and 14 attacks (and stays in hospital) over a two year period before they eventually discovered stones in my bile duct and removed my gall bladder. By that time there had been extensive damaged caused to my Pancreas which I'm certain led to my Pancreatic cancer in June 2014. So definitely 'make a fuss' and get all the tests and information you can. Good luck with the scan.

Regards

Pete

[josi1971]

CT Scan was done this morning, I was not allowed to go with him but my husband said he asked if Pancreas part of the scan and apparently he was just told by radiologist it is a full abdomen scan that includes all organs including the Pancreas. He had a scan without an injection of fluid and then another with an injection of fluid which was done intravenously. We were told we would have to wait 7 - 10 days for results of scan, I am just wondering if we will get a call sooner if anything sinister found, whether I should chase up scan in a couple of days if we havent heard anything or whether to just wait

[josi1971]

Thank you Pete, I will definitely press and push for answers as the general feeling I am getting on here is this is the only way to go as PC seems to be the last thing doctors look for, I will ensure I do everything in my power to get a proper diagnosis which I hope wont be PC but because of my husbands symptoms I have to ensure they 100% rule out PC as I feel this is something that is missed too often xxxx thank you for taking the time to reply xx

[Pete12]

Hi Josi. Definitely well worth pestering them for the results. I have a CT scan on the 25th of this month, and been told I will have to wait four weeks before I see my consultant with the results. Guess who will be phoning them everyday!!

[Slewis7313]

The time needed to process CT results is definitely much less than 4 weeks. I am lucky enough to live near a major Cancer centre and have on one occasion gone for a CT scan and discussed the results with my Oncologist the next day! Some Health Authorities seem to be able to move scan results electronically which is obviously much quicker.

Keep the pressure on.

Steve

X

[Slewis7313]

You should also have been given the name of a dedicated support nurse who can help with any queries you have and also liaise with the Oncologist and others on your behalf. Mine is very helpful and responds within hours if I email her with anything.

Steve

X

[Didge]

I still remember our surgeon calling for a scan that very morning and saying he wanted the results that afternoon. And he got them. They can if they want to! x

[SusannaUK]

Hi Josi,

I would also call them much earlier because I am sure it doesn't take 7-10 days.

I remember that my husband had two CT scans between the day when he was diagnosed and the day when he died (during chemo) and he had the result within 1-3 days.

Definitely worth pushing it!

I hope for the best and that they can eliminate PC.

I am thinking of you!

Susanna xxx

[PCUK Nurse Jeni]

Hi All,

Thanks for the great interaction here to Josi and all of you taking part and helping out.

Pete - that is not on as Steve says - it certainly does not take a month for CT results to be released. Its probably been booked a month before your appointment to make "doubly sure" that it is done, reported, signed off and released onto the system, and allowing for any "mishaps" on the day - Scanners breaking down, people off sick, etc...The usual day to day things when you need several people involved in the final outcome (ie: practitioners, radiologists, typists etc...) If anything, they will want to give you your results at the appointment, so bringing it forward would be the answer, to allow them to give them to you face to face. Often, things are booked in advance just to make sure when the patient arrives, everything is there ready. One of the things I used to say to my patients was when they checked in, to tell the receptionist/nurse/healthcare assistant that you are expecting scan results - that way, if there have been hiccups, they can get onto it before you actually get to the consultation room.

Didge is also right - there are times when you can get a result very sharpish - sometimes, a radiologist will phone through if there are things to worry about, which are very obvious on the pictures. Moreover, they like to have a good discussion about the scans, dictate a in-depth report, this goes to the typists, and they have to type it up, and release onto computer systems, so that its accessible. If any of these cogs in the wheel are missing, it can take longer. Also, if the report is needed for Clinical Trials, it can take longer, as special measurements are needed. Also, not every radiologist will do these measurements.

Generally, with all working well, results should be available in about 5 working days. But this is not the case everywhere, I am aware of this. Some bigger centres report them straight sway as they are doing the scan. Its all about resources again.

Jeni.

[josi1971]

Yes a huge thank you to all posts with all this really helpful advice, we are awaiting results we didn't hear anything today which is the day after ct scan was done we haven't chased results as yet because felt too soon to chase and also in the back of our minds is no news must be a good thing surely, we are almost scared of the phone ringing at the moment but come Friday i will try to convince my husband to call them and chase up results to try and put both our minds at rest x