Sort of diagnosed?!?

Discussion Board Forums Introductions! Sort of diagnosed?!?

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  • #64868
    randyswife
    Member

    I know I should wait to talk to doctor on Monday but I feel so helpless and ignorant to this disease. I want desperately to do and learn everything I can to help my husband. The sad part is we went to the local doctor on Tuesday and he told my husband and I that the biopsy they performed on him came back negative for cancer. The specialist told me but not my husband or family about the findings and after reading his reports they suspected this almost a month ago! I go from one emotion to the next and sit here alone in my knowledge. A part of me doesn’t want Monday to arrive because I know that this will become our truth then. I know time is of the essence and I would never miss this appointment but I do wish for the “boring” days we had only 3 short weeks ago. Thank you for all your help and for giving me someone who I can share this with. I’ve never felt so all alone. My heart breaks for the moment that my husband learns of this fight we are taking on. He posted an update on Facebook the other day that said “Dear Lord, I ask not for an easier life, I only ask you make me a stronger man” so I am thinking he feels it deep inside.

    #64867
    pcl1029
    Member

    Hi,
    First I am just a patient of this cancer for 39 month and I am no doctor.

    Based on the last 2 messages that you wrote. the first thought that go thru my head is to let your doctor telling you about the condition of your husband at time of your next appointment; listening to what he said about the prognosis and you should ask specific questions to get the best pictures of your husband’s current disease situation.Below is a web site about asking questions ;please pay special attention to the staging,treatment,clinical trials and support sections. Ask questions about your husband’s PROGNOSIS is very helpful for you to prepare the future for you and your husband of this cancer.
    http://www.cancer.net/all-about-cancer/newly-diagnosed/questions-ask-doctor

    Since I understand your deep concern and want to know before the appointment;here I will provide some of my thoughts which may be completely wrong and different than your doctor. so just regard this info. as part of the educational process for this cancer.

    1. the gallbladder has no bile in it ,that means it is not functioning normally;the sludge is like the precurser of the formation of gallstone but now this is not an important issue as compare to the cancer.

    2.”Pancreas: There is a regular mass seen in the body and tail of the pancreas. The mass causing occlusion of the splenic vein and encasement of the splenic artery. Significant splenorenal collaterals is noted.” this is the part I will pay more attention to it. It indicated that in the lower part of the right side of the common bile duct( the total length is about 6-8CM long) that closed to the intestine, there is a mass or lesion or tumor (6x3cm) in size, growing in the body and tail part of the pancreas.In short, this mass is located near the bottom of the common bile duct; and that mass pressured the splenic vein(the blood vessel carries blood back to to liver and to the heart and lungs for re-oxygenation )and thus affecting the returning of the blood to the heart.
    The other part ‘” encasement of the splenic artery.” is of more concern (the blood vessel supplies the oxygen rich blood back to pancreas,liver and stomach). This artery is encased or surrounded or invaded or blocked by the same mass or lesion or tumor and that may take away the option for surgery.

    3.”Also, there is a 11mm length area of a severe narrowing or constriction of the distal common hepatic duct just proximal to the insertion of the cystic duct. Proximal to this area of severe near-complete stenosis the common hepatic duct measures about 5 mm. The common bile duct distal to the area of the stenosis measures about 2 mm.” from this message, it described
    another area of lesion or tumor (the 11mm long narrowing lesion) just the near to the entry of the cystic duct(the duct where the gallbladder connected to the common bile duct) . this narrowing of the duct is mostly likely blocking the flow of the bile(the digestive juice) from the liver to the intestine
    and therefore cause jaundice and itching. BTW, the diameter of the common bile duct is about 5-6mm, and the left and right hepatic ducts are around 3mm wide. therefore from your message description, the report emphasizes ,quoted”this area of severe near-complete stenosis”– this almost means a complete blockage.

    If you consider the left and right hepatic duct and the common bile duct together is an oak tree( shape like a letter Y); that means there is a tumor(11mm narrowing lesion) on the upper middle part of the trunk and there is a 6x3cm mass at the bottom right of the trunk. see below link for physiology and anatomy if you are interested.

    http://en.wikipedia.org/wiki/Common_hepatic_duct

    As a patient, I sincerely hope everything will go as smoothly as possible in your way.And I hope the Grace of our Lord, will extend His hand, as He had done to me ,to your husband.
    Keep in touch and
    God bless.

    #64866
    lainy
    Spectator

    Vicky, I can’t help on the above but I know someone can tell you something but it’s late for many so hang on hang in we are here with you. When I was starting this journey with Teddy 6 years ago this Board was just starting and I didn’t want to wait either so I cheated! I Googled each phrase until I put it all together. sure wish these reports came with English translation!

    #64865
    randyswife
    Member

    Also, there is a 11mm length area of a severe narrowing or constriction of the distal common hepatic duct just proximal to the insertion of the cystic duct. Proximal to this area of severe near-complete stenosis the common hepatic duct measures about 5 mm. The common bile duct distal to the area of the stenosis measures about 2 mm.

    There are several lymph nodes seen in the periportal/peripancreatic/celiac axis area. This most likely will represent metastatic adenopathy.

    I copied this word for word from the report. I have no idea what it all means and I really need to know. Please if anyone could help me even alittle it would mean so much.

    Thank you,
    Vicky

    #64864
    randyswife
    Member

    Hello everyone…. we are still awaiting an appointment with the Dr in Cleveland. We went today and got the xrays and reports from the hospital Randy was in last week. The report notes:
    The gallbladder is contracted and filled with sludge and contrast.
    Pancreas: There is a regular mass seen in the body and tail of the pancreas. The mass causing occlusion of the splenic vein and encasement of the splenic artery. Significant splenorenal collaterals is noted. Mass in the tail of the pancreas measures 6 x 3 cm in diameter.
    The term Klatskin Tumor of the hepatic duct was used. There was also a cyst noted on his kidney.
    Anyone want to give me an idea of what this all means?

    #64863
    gavin
    Moderator

    Thanks for the update on Randy and I am very glad to hear that he is doing better right now. Fingers are crossed that his improvement continues and that you don’t have to fight him on anything supplement wise!

    My best to you and Randy,

    Gavin

    #64862
    marions
    Moderator

    Sandy….great news. Things are moving in the right direction.
    Hugs,
    Marion

    #64861
    randyswife
    Member

    Thank you for the advice… I feel so much better knowing you all are out there. I’m so sorry that you are (or have) gone through this too. This SUCKS! Randy is feeling alittle better. I got Almond milk and he ate some cheerios. He also had one of the Ensure fruit punch and it didn’t seem to upset his stomach at all. I did call the Dr. and he assured me this is all normal and his appetite will improve. I just couldn’t figure out why he was so “healthy” when we went into the hospital and after this procedure all hell broke lose? The Dr told us before the procedure that his throat would be sore afterwards…. we have encountered alot more than that.
    I bought some Papaya extract and Ginger root after seeing it on one of the posts here and he took it without any question…. usually he fights me on any vitamins or supplements I try to force on him – lol.

    #64860
    marions
    Moderator

    Randyswife….I would call the doctor’s office before the end of day (if you have not seen an improvement in your husbands condition.)
    Please keep us posted.
    Hugs,
    Marion

    #64859
    jypan
    Member

    Randyswife- with stent the bilirubin will slowly keep coming down and yellowness will also fade out slowly. I believe once obstruction clears out, hiccups will also go away. My brother went through all this in March.

    #64858
    lainy
    Spectator

    Randyswife, I knew I forgot something! Teddy had Jaundiced, I used to tell him I didn’t like him in yellow! The itching stopped days after the stents but the yellow, it’s like a dye, takes a little longer to wear out.

    #64857
    jathy1125
    Spectator

    Randyswife-I have had 10 ERCP’s and had nasuea until they did the procedure while getting an IV of zofran, made a difference. I could not do ensure or boost caused a lot of vomitting. I had a feeding tube for months and that made a difference. I also always had a bowl of dry cheeerios by my side.
    Lots of prayers and HOPE-Cathy

    #64856
    lainy
    Spectator

    Dear Randyswife, I will take a stab at this. Teddy never had the nausea from the ERCP. After his Whipple he had hiccups for 4 months constantly and noone could figure out what to do. We finally met a Pharmacist who recommended Brioske (sp) which you can get at CVS or Walgreens and comes in a blue bottle. It looks like ground up alka seltzer. He took 2 doses in an hour and never had hiccups again! We also have people on here who have had great success swallowing a spoonful of sugar. Diabetes I know but its a one time deal. The hiccups are bad becasue they drain your energy as well as being frustrating!
    There are some people on here who have said they cannot do Ensure. We used Carnation Instant Breakfast and he loved the Vanilla and I would blend in a banana. This can take the place of a full meal and 3 X a day if necessary. Has all the needed nutrients. Instead of full meals let him graze all day long. I made comforts foods like home made chicken soup, lightly oiled pasta, scrambled eggs, jello etc. NO dairy at all. Soy milk made him sick. I actually used skim milk and it seemed to work.
    Sounds like he might need something like Prilosec to help settle the stomach and chest pain down.
    Most important if it continues call the Doctor. I totally understand how you feel, Teddy never had a sick day in his life.

    #64855
    randyswife
    Member

    His urine is still dark and the yellow is still in his eyes. He had a stent put in Monday… how long will it take to clear up?

    #64854
    randyswife
    Member

    It has now been 5 days since Randy’s scope. When we went into the hospital my husband walked in with no pain and some sign of jaundice. On Monday they did the brushing and endiscope, after which he started vomiting profusely. They kept him on antinausea medicine every two hours which kept him pretty much out of it until Wednesday. He was given an IV saline solution on Wednesday (the first and only) and sent home Wednesday evening. Since then he has been on no medication except for his usual insulin and high cholesterol medicine. I can’t get him to eat anything. He is drinking alot of water and I’ve managed to get two ensure in him yesterday which caused him alot of chest pain. Hot liquids also do the same. He hasn’t been throwing up at all but he hic ups alot and has alot of gas pain. He has been sleeping most of the time. The doctor said that the vomiting was a rare side effect of the procedure and he would be back to “normal” in a few days. I don’t know what to do for him now. I tried smoothies, ensure, applesauce, rice, broth, toast, cereal. He ate about 1 cup of cheerios yesterday. I’m going to get him soy milk, since I’ve heard that dairy products aren’t good. I can only get him to drink small amounts and I’m looking for any ideas. What is causing all the nausea and is this to be expected? He has to have the ERCP in Cleveland and I was wondering if this will start it all over again? This man has never been sick a day in his life. I don’t know what to do for him now.

Viewing 15 posts - 16 through 30 (of 41 total)
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