Mohammad Posted March 6, 2019 Posted March 6, 2019 Need help and advice6 Mar 2019 16:33Hello Ladies and Gentlemen,i am new to this forum and need some help and advice as very tense and emotionally devastated! I am 42 male and father of 4 children aged 1 to 13 ! My problem started with haepmotysis ( bleeding from mouth ) ! Went through many tests ( blood, endoscopy, Branchecopy, gastroscope, CT ) but till now they did not find cause of this . However , in Scan they found a mass in pancreace but they were not sure what it was ! They did another test weeks ago and I was waiting to hear from specialist the result , but today I got another letter to do an MRI in 10 days time ! Now confused and scared scared of what was the result of Scan and why they want MRI ? Any idea , experience of this kind please share ! So worried ! Thank you
RoyBoy Posted March 7, 2019 Posted March 7, 2019 Hi Mohammad, Everything is hidden deep inside us. Yes I had various tests and a CT scan and they still couldn’t see everything. I had a CT scan with contrast ? I had to drink some liquid before this (5yrs ago) now they inject it during scan. I had a blood test that revealed CEA(cancer but where ?) of 108. I also had a pancreatic cancer tumour blood test known as CA19-9 (specific for pancreatic cancer) Have you had this yet ? I was sent to a specialist hospital as local hospitals do not do major surgery. I was referred to a London hospital (name removed - moderator) for Whipples surgery (10hrs) . They removed tumour from head of pancreas, gall bladder, bile duct, duodenum and lower half of my stomach. Major surgery followed by 6 mths of chemo. Off work for 10 months - but I’m alive. Keep us updated on your progress. Good luck
Mohammad Posted March 7, 2019 Author Posted March 7, 2019 Hi Roy and thank a lot for reply ! God bless you and wish you best in life ! Your story is really inspirational and give hope to many in the face of this terrible disease ! Since they discovered the mass accedently , and since then I had only scans and now MRI referral ! They did blood test but was not for pancerace as they were looking to find out cause of bleeding and they were suspecting lung cancer initially . All test came normal ! They one that I can relat to pancreace was liver function test which was also normal ! In two blood test that I had FBC , all came as normal ! They MRI was for 15 March but got a call from hospital today to come tomorrow instead ! Don’t know really what to expect ! Will write the results soon ! Thank you and regards .
PCUK Nurse Jeni Posted March 7, 2019 Posted March 7, 2019 Hello Mohammad,I would like to welcome you to the forum, however, realise its not a place anyone wants to be. I am very sorry to hear what you have been going through recently, and the waiting for results must be an anxious time for you. Mohammad, I wonder if you have a telephone number for a clinical nurse specialist at all, at the hospital where you had all the investigations? are you able to phone the nurse, and ask them why you need to have the MRI scan? And ask whether there is an appointment for you in the pipeline to go back and find out the results of all the examinations you have had? Its great news to hear that the MRI appointment has been brought forward - this is good news. before you leave there, please ask when you will be seen by your doctor to discuss these results. Mohammad, please do not hesitate to contact us on the support line for more help - you can phone or email. You will find the details in the signature below. We hope to hear from you soon. Kind regards,Jeni. Jeni JonesPancreatic Cancer Specialist NurseSupport TeamPancreatic Cancer UKemail: nurse@pancreaticcancer.org.uksupport line: 0808 801 0707
PCUK Nurse Jeni Posted March 8, 2019 Posted March 8, 2019 Hi Mohammad,Just to let you know that I have deleted your other post as it is a duplicate of the above, and both threads had responses. We can consolidate the responses to this thread. I trust this is satisfactory?Kind regards,Jeni JonesPancreatic Cancer Specialist NurseSupport TeamPancreatic Cancer UKemail: nurse@pancreaticcancer.org.uksupport line: 0808 801 0707
Mohammad Posted March 16, 2019 Author Posted March 16, 2019 Thanks Jeni , Thanks for your response ! Waiting to see the specialist on 21 March hope so nothing serious! Regards .
Mohammad Posted March 18, 2019 Author Posted March 18, 2019 Hi , As I am waiting for the result of CT and MRI with pancreatic protocol and meeting with concultant , I get a call from another hospital asking me to come for a EUS endoscopy on 3rd April in another hospital ! I am really confused and stressed as why the do this one now ! They did not tell me anything ! Any advices appreciated! Thanks god bless you all !
PCUK Nurse Rachel R Posted March 20, 2019 Posted March 20, 2019 Hi Mohammed,I'm sorry that you're going through such an incredibly anxious time at the moment. It is positive that you are having all the appropriate investigations as you should and that they seem to be happening in a timely manner. Some Hospitals do not offer an EUS service so that is likely to reason why you are being asked to go to a different hospital for that particular test.As Jeni mentioned above Mohammed please don't hesitate to give us a call if you'd like to chat further - contact is below in the signature.Kind wishes,RachelRachel RichardsonPancreatic Cancer Specialist NurseSupport TeamPancreatic Cancer UKemail: nurse@pancreaticcancer.org.uksupport line: 0808 801 0707
Mohammad Posted March 21, 2019 Author Posted March 21, 2019 Hi Rachel , Thank you very much for your response ! It helped a lot ! The problem was different than pancreases and accedently they found something on pancreases and since then they kept on more imaging and tests ! The problem is that they don’t explain why ! But today have meeting hope to hear something from them and of course hope something not on extreme side ! My regards to you and your wonderful colleagues ! Thank you !
Mohammad Posted March 21, 2019 Author Posted March 21, 2019 Hello Dears , Had a meeting with Consultant at hospital and he explained to me that I no longer have to go through tests and the results from Pancreatic CT & MRI shows it’s a cyst in pancreases and not cancer which made me extremely happy , however I told him that I got an EUS appointment in April and he said I shouldn’t have that as The specialist check all results and concluded that no further action is required ! He discharged me today ! My question to nurses here is that shall I keep EUS appointment or they will cancel it automatically ? Or there is other DR who wants that as well ? Help please !
PCUK Nurse Jeni Posted March 22, 2019 Posted March 22, 2019 Hi Mohammad,Its likely that the consultant who gave you the results is aware of the EUS request, so if he has stated that it is not necessary, then that's probably the case. Good news that the issues have come back as a cyst - just ensure that you find out what follow up you need now. Kind regards,Jeni. Pancreatic Cancer Specialist NurseSupport TeamPancreatic Cancer UKemail: nurse@pancreaticcancer.org.uksupport line: 0808 801 0707
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