tlsinftl
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We found out our GI Oncologist at MD is Dr. Rachna Shroff – I did a search here and didn’t see any results. I also looked at our appointment schedule, I was thinking we would just be meeting with the Oncologist reviewing all of the tests that we had taken at Mayo but now they have more x-rays and CT scans scheduled….Ben isn’t going to be happy with another round of those. Is that normal when you go to another institution for consultation? Especially since all of that was done just two weeks ago….blood tests I understand but more x-rays and CT scans?
Thanks Marion – I’ve spent so much time in the disussion boards and I didn’t see the “suggestions” or the blogs links – I’m going to check those out…thanks for all the tips.!
My partner Ben’s first symptoms were digestive problems and slight pain in his abdomen. After an initial mis-step at the local doctor where they “mis-read” his blood test (looked at last year’s and said everything was fine), they found that his liver and gallbladder enzymes were “off the charts”. (This was after Ben continued to call them and say something wasn’t right…which delayed diagnosis a couple of weeks).
After a referral to the local GI doctor they did an immediate MRI which detected a tumor in the liver. After we found out about the tumor I immediately called Mayo and got an appointment there just in case it was cancerous. After a local biopsy confirmed it was cancer we headed to Mayo where they quickly made the CC diagnosis – then through laproscopy determined it had spread so surgery wasn’t an option which is when they installed a metal stent in his liver.
So, overall from initial symptoms to diagnosis to metal stent – it was about six weeks. Ben had felt great since the metal stent (two weeks ago), and now we are looking at chemothereapy options at MD Anderson in Houston (closer for us).
The story here – is stay on top of your doctors….you know how your body feels and even when they say everything is fine – be persistent.
Thank you everyone. While I don’t like the reason I am here, I already love my new family…it truly means so much to me.
Tom
Thanks Gavin and everyone else for your support. It’s now been 10 days since the metal stent was put in and Ben feels better today then he has in quite some time, we finally went out for dinner with friends last night. Blood tests tomorrow to check bilirubin levels and taking out the temporary plastic stent in the pancreas that was put in during the ERCP to prevent pancreatitis (although Ben did have a mild case that required 2 days in the hospital but he recovered well). Still investigating oncology options but will certaily be checking her for help once we know more – unless anyone has recommendations for South Florida (Fort Lauderdale and Miami).
Thanks everyone, we had discussed having one of the major centers prescribe it and have it administered locally but are still just exploring. We had also thought of doing the first regimin at one of those centers then moving it locally once we knew the protocal. Right now, one of the doctors at the Mayo Clinic in GI said he would continue to be involved (we are having a blood test Thursday and he will get the results), but we are also working a local GI doctor who we started with down this path (and who will take out a temporary plastic stint put in the pancreas last week during the ERCP to put in the liver stent) who we want to keep involved so we have at least a local GI.
Thanks for the advice on trying to pursue local given the potential side effects…I’m going to push Ben for that idea (protocol from Major Center and administer locally).
I feel so lucky to have all of you to turn to, I can’t thank you all enough already.
tom
