Topic: Husbands ct results

Well got ct results back and it shows everything is stable. But we had to see a temp oc doc because his normal doc was out of town. The temp was great! Liked her better then the normal one. Any way she wants a pet scan done. Just like I have been asking for him to be able to have. But his normal doc always said there wasn't a good enough reason to request one. This temp doc said there is since his tumor markers are on a steady climb. She even so much went and called my husbands doctor while we were setting there and told her that one needed to be done. Sounds like he should be getting his pet scan done at the end of the month. Just waiting on the appointment date now. We were both soo happy that he's able to finally get this done.
She also mentioned that if his pet scan comes back clean maybe he could have a break from chemo or just do maitance chemo which would be 1 xeloda a day.  That would be great. Now just the waiting game until everything gets done.
Michele

Re: Husbands ct results

Dear Michele, this all sounds good to me. My Teddy had PETs every 6 months for 5 years! You know we LOVE the word stable. Is it possible to switch ONCs to the one you really like. I like her too!
Because this is such good news you have today, have a cute story to tell about Teddy and PETs.  So, we pull up to the hospital for his very 1st PET. The parking lot was jammed except for 2 parking spots that were empty each with a sign that said "PETS". I said that must be for the pets who visit the hospitals. YEP, you probably guessed it....they were 2 spots for PET Scans! I should not even admit to that.
I think you are both due for a good break!

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: Husbands ct results

Lainy, I wish it was possible to switch his doctor to the other ONC but she's a fill in and she's from India. Very smart lady. Boy do I wish she was her to stay cuz we would diffently switch. She's returns to India in June.:(
That was a very cute story you had. Made me laugh.
Thanks, much needed.
Michele

Re: Husbands ct results

Dear Michele, I just feel if you are not happy with your ONC, listen to your gut, you should be finding someone else because faith and feeling secure with your ONC/Dr of any kind is 1/2 the battle.  Perhaps if you mention the Hospital again some of our family can give you some suggestions in the area. And yes, waiting game was never more true then when CC is involved...and lots of patience.

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: Husbands ct results

Michele,
Fingers crossed for the PET scan!
I don't know what kind of insurance you have, but it's hard getting approval with Aetna. PETs are not approved for cc patients! I don't make the rules: I'm trying to break them! I had to fight like crazy to get a PET approved. Among other things, like care... New onc....
Maybe that is one reason your onc has not asked for one? He may know it won't be approved anyway. And it's tough to get those insurance guys to change their minds.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Husbands ct results

Kris, these Insurance companies can be brutal, but I really can't complain. Teddy had Cigna and when he first got sick and went through 2 surgeries etc after 7 weeks all toll in the Hospital we only had to pay 4,000 out of pocket. I remember they would approve a PET then say no to the next one. The ONC always intervened for us and we had no problem. When I thought they were not going to pay, I googled and found in PHX a place where they do PETS for 1,600.00!  Just then the ONC got the approval. So there may be other options for those having trouble getting approval but still want one.

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: Husbands ct results

Hi Lainy,

I think Michelle's husband goes to the same oncologist Lauren does at U of M. He doesn't like to use PET scans for some reason. I remember Lauren asked for one once and he said no. She did have one when first diagnosed. He gave us a reason why he said no, but I can't remember why. It must've been a good answer for us or we would have argued about it. I know he likes Cts and MRIs better. I will say that we think the world of him and he has helped Lauren so much. As with everything, different strokes for different folks.

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: Husbands ct results

Pam, IF and it's a big IF, I am correct the diff is that a PET shows hot spots but an MRI is more defined? Let's ask Percy! Percy? Time for our daily lesson.

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: Husbands ct results

I know that he is extremely busy at the moment and that he may not catch the above posting therefore, just in case, here is the link:
http://www.cholangiocarcinoma.org/punbb … hp?id=6507
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: Husbands ct results

So here is my input on the MRI v. PET scans.  From my understanding PET scans have many more false positives then MRIs.   PETs show areas of uptake of 'sugar' which may mean cancer but can also be inflammation (like arthritis). This can cause unnecessary follow up procedures and tests that could be unnecessary.

I have had cancer three times and have NEVER had a PET scan.  So it is not unusual for docs not to want to do PET scans.

Just my personal experience, I am not a doctor smile
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Husbands ct results

one thing to note is that cc is very "pet-avid" and shows up...but anything less than a cm may not show at all. most drs like different scans for different reasons.

Re: Husbands ct results

We found out that his pet scan is scheduled for the 23rd. We will be so glad when we get the results back from this. He seems to be more worried over this then when he has ct scans. Which makes me worry. I keep telling myself he looks great so everything's going to be fine. I will update when we get results back.
Michele

Re: Husbands ct results

Hi Michelle,

Thanks for letting us know about your husbands PET on the 23rd and for sure I will be keeping everything crossed for him. I know what you mean about being worried in the run up to this and that is something that we all goo through. Scanxiety, not good but please stay strong and stay positive as well. You know that we are all here for you as well.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Husbands ct results

Michele,
The Cleveland Clinic likes CT scans better than PET scans but I have had both. I feel better seeing the results of both which show two different things.
Good luck
Lisa

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: Husbands ct results

Percy posted some great information on the subject
http://www.cholangiocarcinoma.org/punbb … 365#p47365

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