February 22, 2009 at 5:54 pm #26398
Yes, I did make it to the oncologist this last week with another appointment in two weeks.
I did have the PET scan yesterday, unfortunately, we are also 1154.00 poorer. To be honest, 500.00 of that is our 2009 deductable, so our 20% share of the test, was 659 . WOW. Hope there are no orders for many more of those, as this place did not offer us any type of payment plan.
Hey, Lainy, did I read that your husband had two Whipples? I mean, really, can they call the second one a Whipple? Can you tell me what they did during the second one, or point me to a thread where you may of already posted it?
This cancer stuff is just way outta hand. Friday, I had a first cousin diagnosed with non operable large cell lung cancer, this is the third person , in my circle, two in my family, to come down with this just in the last 10 months.
What is going on?February 22, 2009 at 8:16 am #26397stephylynnMember
Hi Jill, not trying to scare you but please get with your oncologist as soon as possible. The whipple changes you so much. It is so hard to know if your body is trying to adjust to the surgery or if it is something else. This is so rare but very aggressive. You came to the right place, just please read on here and ask a lot of questions. You are in my thoughts and prayers. With love, StephFebruary 20, 2009 at 5:51 pm #26396
WOW! We are lucky as Teddy’s PET was only $150 out of pocket. Ya gotta do what ya gotta do!! Worry about it later. Please keep me posted. If you have any thing else you just keep asking.February 20, 2009 at 4:39 pm #26395
Thanks Lainey. I did know about the Tulsa Cancer Center of America, but, did not think that insurance pays well in those cases. May need to do one of those online chats to see. I actually checked the online resource or finding in network providers, and the were not there , however, the local oncologist, was not listed either, and a phone call , found that he should of been Whew.
The Pet Scan place called and have found that BCBS will pay, however, she will also be calling me back to make sure that I have my share in hand, before scanning. Going to be intresting to see, If my share is 20% of the 2 grand, that those that self pay are charged, or 20% of the five grand that insurance companies are billed. I so hate this crap.
Thanks again for responding! JillFebruary 20, 2009 at 3:49 am #26394
One more thing, Jill. I just found out there is a Cancer Treatment Center of America in Tulsa, OK. They are excellent if you need their help.February 19, 2009 at 11:07 pm #26393
Teddy takes Prevacid for his stomach every morning to help in digestion. Other than that no meds! You will find in my posts we all refer to him as the Miracle Man. He has an other problem in that when the cancer returned it along with scar tissue has damaged his right ureter and he needs to have a stent put in every 2 months. When you fight this war you do not get a purple heart. Only scar tissue and more issues. But you must have hope and attitude and you would be surprised how that helps. Yes, all he had was scans and LAB work as there is no other way to keep the vigilance.February 19, 2009 at 10:30 pm #26392
Thanks for responding!
I’m sorry, I should have mentioned that I am in Oklahoma. Only one Dr. in our State that even does the Whipple and he is affliated with OU med center.
So between your husbands whipple and the reoccurance of the cancer, there was no treatment, or meds given? Anything at all other than scans and bloodwork to watch for it?
Absolutely, no, this Dr is not all that familar with this type of cancer, and I gotta tell you , I do appreciate his admitting it. He is all we have here locally.February 19, 2009 at 10:23 pm #26391
Welcome, Jill to the best little club in the world that no one wishes to join! My husband at the age of 73 had a Whipple 3 1/2 years ago. It is the LARGEST surgery to the human body there is. Not life threatening but huge. One reason for the long recovery. Teddy’s was contained in his bile duct valve. The only thing we know for sure about CC is that it does return. His returned last April where his duodenum used to be. They had removed his gall bladder, his duodenum, the head of the pancreas and rearranged the innards. After a summer of radiation to bring the tumor down to 6cm he was then eligible for cyber knife in December, to kill the monster! The protocol following surgery has been to see his Oncologist every other month along with LAB work every month. Important is his bily rubin and CA19-9 counts. I have many posts about him and you can look it all up under Lainy. We opted not to have chemo as 5 cancer specialists said it would not help his kind of CC. Your doctor can go to bat for you on the PET Scan. Teddy also has CT Sans every 6 months. It was this watchful stance that caught the cancer quickly when it returned. It would not be unusual for all the diagnosis they made to get to the CC. It is one of the hardest to diagnosis. Read up on this site as much as you can, although the Whipple is more rare than most of others it is still considered Bile Duct Cancer.
Please feel free to e mail me personally if you would like. Don’t know where you are but it sounds like your doctor is not unfamiliar with this. Please stay in touch.February 19, 2009 at 8:56 pm #2015
Hello all. I found u by searching google.
I had the whipple on Sept 22, and a 3 x2 x2 tumor was removed from my bile duct. Between Sept 6 thru the path report, I was told that I had,
2. Gallstones blocking my bile duct
3. Liver failure
4. Pancreatic Cancer
5. Bile duct cancer, which is what my surgeon finally determined.
After the whipple, I was so sick and unable to keep any food down, and I stayed that way until just before Thanksgiving. The surgeon did release me at that time , with a referral to the local oncologist, however, he warned me that the chemo was going to make me very sick , again.
Therefore, I put it off. I wanted to get the holidays over with and a chance to get stronger, I could not even manage a grocery store trip at that time.
Well, fast forward to this week, I finally got in to see the oncologist. We agree that bloodwork and a PET scan are starting points. The Pet scan is down in the City, over 100 miles from home, and they are waiting for BCBS to approve it before they will schedule me. Edit to add, the place just called me and said they denied it.
The Dr. readily admits this is a very rare type of cancer, and is not sure that chemo nor radiation, will prevent it from coming back. So, what then? Just keep watch on my blood? Who here has had a whipple and what type of followup care are you getting, if anything.
Thanks All. Jill
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