Topic: I need some guidance

Hello All,
i posted in introductions a couple of weeks ago.  I mostly read, read, read and learn, learn, learn from all of you wonderful people.
I need your guidance & opinions.
My wonderful hubby was diagnosed intrahepatic cc on 6/1, failed resection on that date due to one local hot node.  the single tumor in right side of liver is 5.6 by 5.2 by 5.8 cm according to last ct scan done on 5/17.  This is what we were told.  He started gem/cis on 7/02, completed 2 cycles (4 doses), onc says that ca19-9  dropped by 30% by end of 2nd dose and orders ct scan for one week after 4th dose, which was last tues. 
Yesterday we went in for results--so much anxiety, anyway the news she says is good----the tumor is stable, hasn't grown at all.  So she feels that chemo is doing 'something' and wants hubby to see the radiologist for cyberknife consult--the goal she stated from the outset is to shrink the tumor and resect.

Here is the problem;  when we went onto the internet patient site where all of his records are posted---I mean everything---we looked at the new ct scan report where it states that 'there is no significant change' then it states that the tumor is still 5 cm by 7.5 cm as recorded in the last comparison scan on 5/17.  Um, I'm a bit confused, these numbers don't match up, right?  Am I just getting myself worked up for nothing?  We have put a call in to the onc first thing this morning--of course no one ever answers the phone or will return phone calls for days (like 4 days last time), even though we leave multiple messages, though to be fair it was concerning short term disability paper work that was never completed, not a medical question.

Yes, these people are very well familiar with cc, a very large metro hosp in Boston, one of the teaching hospitals for Harvard medical school and they partner in research with Dana Farber.  The liver surgeon is very respected and runs the transplant unit

These people don't voluntarily explain anything---we have to know the questions to ask and then they'll answer them.  For instance, we also found out yesterday that the original scan found 2 nodules on his lungs, probably granulomas, but to repeat the scan in about 3 months to look for stability (which are stable according to new ct) but what does this mean???  Do they think it's mets possibly??-----this was never, ever mentioned to us at all. 
Please, somebody advise me!!!  I'm sooo upset.
Lisa

Re: I need some guidance

Oh, I forgot to add the question---If his tumor has actually gotten larger, then wouldn't that mean that maybe the gem/cis isn't the correct thing?  And I know it is important to waste no time with chemo regimens that don't work, right? 
Lisa

Re: I need some guidance

Lisa...there may have been a discrepancy in regards to the actual measurement of the tumor. The same goes for the lung nodules.   Your oncologist will be able to explain.
From what I can read, you are reporting good news in that the markers have reduced significantly and a consultation with a radiation oncologist is advised.
Hang in there and try not to focus too much on the unexplained (for right now, at least.) 
Hugs,
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: I need some guidance

Dear Lisa,

I wouldn't get really upset and worried if I were you. I have found with my daughter, that sometimes measurements of tumors can differ a little between scans, especially CT and MRI. Hers are always different between the two. As long as the radiologist and oncologist feel your husband is stable, I would listen to them. I would question the difference, but don't work yourself up too much. Maybe someone made a typing error. I know the last time we got Lauren's report, it said she had pancreatic cancer, which was a mistake. Mistakes happen all the time. I'm sure if they felt the tumor was growing, they would've switched chemo.  If you aren't confident with them, then maybe a second opinion is in order. Sometimes, I think doctors think we, as patients and caregivers don't know anything, but thanks to this website I have learned a lot. I go in with a list of questions and sometimes, by the looks I get by the Dr. and PA, I know they are thinking "How does she know that?" It is such a good feeling to be informed. Bottom line, for your peace of mind, call your husband's doctor and ask him why there are two different measurements. I'm sure you will feel better. Please try and relax. I have felt the same way on more than one occassion, and I can tell you that worrying yourself sick does not do one bit of good. Deep breaths and relax! Let us know what happens. I really do care.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: I need some guidance

Dear Lisa, welcome to the world of advocacy and frustration which I know you do not need right now. We love the word stable and like others stated hopefully your ONC can clear things up.
I wanted to add that my husband had cyber knife......a real miracle. It is non evasive and usually done in 3 -4 visits. Unless things changed from 3 years ago, the Tumor must be under 7 cm. Not sure how old your husband is but I do know as we get more 'age appropriate'  we get these dumb nodules on our lungs, I have had them for years and they are usually just that. Be persistant, be strong and I truly hope he can qualify for the CKnife.

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.