Here and scared for my husband

bkskand5kids · New User Joined: 21 May 2008 Posts: 4 Location: Alabama

Hi my name is Shonda and my husband Brian has had an awful lot going on the past few months. On Jan. 28, 2008 we made a trip to the emergency room of our local hospital due to his terrible discomfort in his back and sides and stomach. I thought great...fair and 50 so gall bladder removal time...well we were told his gall bladder was fine but he was suffering from a case of acute pancreatitis."GO HOME FOLLOW A SIMPLE LITE DIET AND THINGS WILL GET BETTER." We did it didn't. On Feb. 24, 2008 we were back in the emergency room and completely surprised when a gastro came in and ask why we didn't follow up on the mass with our internist..."MASS, WHAT MASS." He was hospitalized for 4 days and 2 weeks later we were in Birmingham, AL at UAB...we were to have an EUS...the Dr there couldn't do it due to the condition of his pancreas there was a high probability if they did the thin needle biopsy he would have bled out before they could stop the bleeding. We were told to go back to our gastro...let him decide if we should have our gall bladder removed, although he saw no sludge or stones...and have another CT scan in 8 weeks to determine what the mass was and to allow the pancreas to calm down.
Well the weeks have passed, he had his gall bladder removed, to rule it out from all future diagnose...there was very little sludge and no stones and the ducts were fine... and he is now diabetic, has constant pain and burning sensation in his abdomen and back, his bowel movements are no longer the same and he has frequent loose stools with extremely foul odors. He feels gassy or bloated all the time and is weak and extremely fatigued all the time. I have done enough research to know that all of this points to pancreatic cancer but up until I confronted our internist who has been very helpful not one of the Dr ever said anything about doing a CA19-9 or CEA or any of the other blood work that might help if not with diagnosis atleast with ruling it out.
We have another CT tomorrow and won't hear anything until the following week on the 28th what the results are but I reaaly need to know what else I should be asking or doing to help figure this out...I am at a loss and I don't lose well...LOL...I am a control freak when it comes to him, our children (no matter that they are 23, 21, 19, 18 and 17) and their health.
HELP IF YOU CAN. Sorry this post was so long winded.
Shonda...at at loss but not losing it(YET)

ksplat

Dear Shonda

I am replying to offer my support to you & am reeling from the post about Brian. He has been "in & out" & "up & down" for long enough now & it's time to start getting some REAL & COMPLETE answers as to his actual illness. You appear to me to be the right person to be advocating for him & I know you will get the right answers with your persistance & pressure.

It is very sad/bad that you weren't notified about the correct diagnosis from your first trip to the ER in Jan. I can't imagine the panic/confusion/anger you must have felt (& are still feeling) to hear about the "mass" during your next visit to the ER.

I am not familiar with Pancreatic Cancer but I will ask the forum "administrator" to move this post to that forum for you. This way you will be supported by our members who are familiar with this illness, symptoms, treatment, etc. I trust this is OK with you?

My prayers & thoughts are with you.

Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

bkskand5kids · New User Joined: 21 May 2008 Posts: 4 Location: Alabama

Thank you Angie for having this post moved to the correct forum. I wish we had been told when the mass was at 1+cm instead of when it had grown to almost 3 cm in a months time, now that it has been almost 3 months since that time I just wonder how much larger it has become.

Shonda

catalina

Shonda

So sorry to hear about your husband, I lost mine three years ago. Check
out St. Vincent's hospital, I think their program is better. My husband was at UAB, I did not like their care at all. I have talk to several survivors that go to St. Vincent's
Catalina @ Cullman, Alabama

bkskand5kids · New User Joined: 21 May 2008 Posts: 4 Location: Alabama

Catalina thanks for the reply and so sorry to hear about your husband. It has been 3 months now and still no sure diagnosis just more testing. I understand his pancreas was in such bad shape to begin with that UAB couldn't do the EUS biopsy but come on the longer we are kept waiting the worse his chance of beating this thing becomes. We finally got the CA19-9 and CEA blood test done by our primary care Dr, he thought that the Gastro in charge of our case had ordered these test...that is until we requested all of our records be sent to the primary so that he could make sense of this 3 ring circus and fill out all the paper work for our insurances...Gastro sent him one sheet and it was just the notes from our last visit, Ever Get The Feeling A Dr. Just Doesn't Give A Care.
We go back today to Gastro first for the results of the last CT scan and are going to ask for a copy of the results...although we requested one be sent to our Primary when the scan was done...so that once we leave Gastro we can head over to Primary for blood work results and a complete conversation and more in depth explanation of CT scan.
We contacted Cancer Treatment Centers of America and after information was shared they have decided that we may need to just go on out to Tulsa for evaluation and diagnosis. They have already spoken with our insurance company and now are just awaiting the results of CA19-9 and this last CT scan. I have never been the type of person who sees monsters in the closet, but with all that has happened to my husband over the course of the last 3 months...I couldn't wait any longer for the Dr here to say one way or the other...so I grabbed the flash light and flung open the closet door, I despise monsters I can't see.

Tied a knot and swinging,
Shonda

catalina

Shonda

Cancer Center offers excellant care, I took my husband to Zion Ill.
Cancer Center, he was sent home to die of septic from UAB, Cancer Center in Zion put a stent in to drain the bile ( his cancer covered the bile ducts) he was in a coma before the drain, after the drain he came out of the coma and was able to talk and be with us till pass away.

Catalina
Cullman

bkskand5kids · New User Joined: 21 May 2008 Posts: 4 Location: Alabama

Catalina we are so happy here if that is the word. CTCA has agreed to see Brian we are leaving Monday the 9th of June to head to Tulsa. We got our CT results and the mass has grown 5mm in the last month, our DR said wait and go back to UAB for the ERCP but as of yet they haven't contacted us with the appointment...CTCA on the other hand talked with me on Thursday and by Monday we had an appointment. I am so glad to hear what they were able to do for your husband. Thanks for sharing with me, I know it must be hard but your experience helped push us in the direction we are now traveling.

Shonda

catalina

Shonda

if you need to talk just e-mail me, Cancer Centers was great with my husband and they take good care of the family too.
Catalina

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