Really scared

JKGulliver

jcarol said:

update on Clint

Things are not going well.  The tumor board suggested another MRI on Nov. 6 to see if there is growth in the liver lesion.  I pitched a fit to Dr. Lin's nurses (the only people I could talk to directly).  Dr. Lin called late that night and said he had spoken to two radiologists who looked at Clint's MRI and they feel there is 80 - 90% chance it is mets.  He offered a PET scan which is being done tomorrow.  I can't stand just waiting as he still feels we should have another MRI Nov. 6 or LATER.  

I have sent referrals to Mayo, Johns Hopkins and MD Anderson and we hope to get a second opinion and a more definitive treatment plan.  I hope they will include liver specialists and radiology interventionists.  If anyone has experience or knowledge of these facilities especially in a case like Clint's I'd appreciate input.  I think it will take longest to get into MD Anderson.

 

If you are in or near Minnesota

My husband and I did go to Mayo for a second opinion.  He is Stage 2 N0 M0 when first diagnosed.  He also immediately joined an extremely aggressive clinical trial.  We are now through it and John had his esophagectomy in September.  Mayo is extremely thorough.  Once you get in, they are also very aggressive.  Mayo often asks that you come and stay overnight the day before your appointment.  Very early in the morning, the next day (we started at 6:15 a.m.) you will find they've scheduled you with a long line of tests.  They repeated many of the tests previously done by our oncologist in the Twin Cities.  They do all the lab and test analyses in-house, the same day.  By 4:00 in the afternoon, we had the results.  In our case, we elected to stay on the treatment path we started.  However, if we'd gone with Mayo, treatment would have started the following day. Our situation is different from your situation.  And maybe you know all this about Mayo already.  But, our experience was identical to what other people have told us about Mayo.  

I don't know your insurance, but we are being treated by Minnesota Oncology, part of the Allina system in the Twin Cities.  We are very pleased.  

jcarol

JKGulliver said:

If you are in or near Minnesota

My husband and I did go to Mayo for a second opinion.  He is Stage 2 N0 M0 when first diagnosed.  He also immediately joined an extremely aggressive clinical trial.  We are now through it and John had his esophagectomy in September.  Mayo is extremely thorough.  Once you get in, they are also very aggressive.  Mayo often asks that you come and stay overnight the day before your appointment.  Very early in the morning, the next day (we started at 6:15 a.m.) you will find they've scheduled you with a long line of tests.  They repeated many of the tests previously done by our oncologist in the Twin Cities.  They do all the lab and test analyses in-house, the same day.  By 4:00 in the afternoon, we had the results.  In our case, we elected to stay on the treatment path we started.  However, if we'd gone with Mayo, treatment would have started the following day. Our situation is different from your situation.  And maybe you know all this about Mayo already.  But, our experience was identical to what other people have told us about Mayo.  

I don't know your insurance, but we are being treated by Minnesota Oncology, part of the Allina system in the Twin Cities.  We are very pleased.  

Thanks for information

We live in Michigan and currently being treated at U of M.  We were happy to be there as Dr .  Orringer would have been doing THE.  However there was a 10 week backlog after his chemo/rad and when they found problems with liver and pulmonary embolism.  Now it is still in the hands of the surgeon here.  Clint had a PET/CT Friday and is scheduled for another CT November 6.  We want some definite plan and treatment.  We hope we will get more answers at Mayo but would prefer to get any long term treatment at U of M close to home.  What clinical trial were you in?  What did Mayo recommend ? Was it different from what you chose?  We are willing to be aggressive if there are not huge long term quality of life costs...it's a tough choice...especially if he is stage 4.  Mayo did say they wanted another CT when we arrive which doesn't make my husband happy as since June he has had two PETs, 2 MRIs and this would be his fourth CT.