Topic: please give me your experience

my husband ercp went fine, except the klatskin tumor is there, inoperable, his onc never even called us.  i just called the office and was given a message to come back in two weeks and they'll check his levels and maybe do chemo then.  he is very uncomfortable and getting yellower.  he's going to freak when he finds out the doc just put him off for two weeks, but i did insist on an appt with him just to regroup.

meanwhile, i am going to broach the subject with my husband about sending his reports and images to other doctors.  i've gotten some good names from this site.  does it sound reasonable for me to do this now?  or any other ideas.

thanks so much
ana

it takes what it takes

Re: please give me your experience

Ana....absolutely, now is as good of a time as any.  Please, make sure to have on hand all reports including, original scans, blood test results, doctor's notes, etc. 
Good luck,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: please give me your experience

Ana...do it yesterday!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: please give me your experience

Yes, send reports to other doctors. Even if you're happy with the doctor you have, some times for convenience sake you end up with another doctor or group of doctors. That's what happened with me and it's worked to my advantage so far.

Re: please give me your experience

Hi Ana, we were told to send the scans & imagery on CD along with any doctors notes, in a Fedex package- overnight delivery, so that the package can be tracked. We called ahead to the doc. offices, underscored the urgency of receiving the additional opinions on potential treatment options, & let them know we'd send the records ASAP.  We then followed up with calls to make certain everything arrived & to receive feedback on the reviews. The hospital sent the CD scans and doctor records, along with a template letter that we designed for each doctor, which was helpful as we received second opinions from about a dozen doctors and they may at times run upwards of $40 each to mail.  We too did this within days of receiving the diagnosis.

Best of luck to you,
Tess

Re: please give me your experience

2 weeks here, 1 month there, another week here.  All the time we are anxious.   Gather up all that future stress in a big assertive package and badger, badger, badger.

Re: please give me your experience

Hi Ana;
I would also suggest you seek another opinion. Find someone you are comfortable with and that you feel is working with you to fight this.After I was told  I had a tumor that was almost 15cm in my liver and there was colon and lymph node involvement I had to wait almost 3 weeks for the pathology report to finally come back before they would do anything. During that time my family had me take some alternative supplements (milk thistle, green juices, Genesis juice). Waiting can be very difficult. I will keep you and your husband in my prayers.
God Bless,
Jamie

Re: please give me your experience

Ana,
I am so sorry for you and your husband.  I think your doctor is a bit clueless or indifferent, either of which is a bad thing.  I think you said you are meeting with the Doctor again, is that in two weeks?  can you call the Dr. and ask why a stent is not an option to relieve the jaundice?  It just seems to me, something can be done to relieve his discomfort.

The  Lord is my shephard

Re: please give me your experience

Ana,
Yes get that second opinion and third if need be. They might have wanted to wait on the chemo to give your husbands body a chance to heal from the ERCP.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope