jean
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Suzanne
I just can’t imagine how frustrating this must be and I certainly don’t understand why your doctor will only write a letter of medical necessity after you appeal it. That makes absolutely no sense and only puts off the scan…it just seems wrong! And it does seem unfair to put you in that position…as you said, you don’t have the medical knowledge to make a proper case. And how many people would!
I do know someone who works at a PET facility here in Seattle. I will give her a call on Monday and see if she can put me in touch with the person who does their insurance authorizations. I’ll see if I can find out what would help obtain authorization, what wording to use, points that need to be made etc. Hopefully I can find out something that might be useful. I’ll post on Monday and let you know what I learn.
I disagree with the information regarding liver lesions not showing up well on PET scans…I have seen PET scan images and a tumor is very easily seen. I hate to disagree with a radiologist
but I just think he’s wrong!I am so much hoping for some good news for you.
Jean
Suzanne
The article that Patty posted about PET scans is under the New Developments section. It may be very useful in fighting this. I have really no answers but keep in mind that the goal of insurance companies is NOT to spend money. So this needs to be presented in a way that shows them what they’re actually saving by doing the PET scan. What other tests/procedures might *conceivably* be needed if the PET scan is not approved…MRI, biopsy? What expenses are they avoiding by approving it. Your doctor should write a letter of medical necessity that addresses these issues and they do that all the time.
It must be so frustrating…I’m sure there are no words to convey that! Keep fighting…persistence can sometimes make a big difference
Wishing you all the best in this fight on all fronts.
Jean
Lainy
That’s great news!!! It is amazing how well people do with the Cyberknife and how few side effects there are. Hope to hear only continuing good news about Teddy aka “Miracle Man” and now “The Champ”!!!!
John
I’ll be thinking of you tomorrow and hoping good news will be coming your way as well. Please let us know.
Jean
Kris
I’m very glad you’re going back home and getting this evaluated. And most importantly getting it fixed ASAP! It sounds as if you’ve had such a miserable time. I’m sure Hans will be very glad to have you there.
A perfect excuse for not eating strange fish dishes…however, I’m personally pretty fond of pickled herring!
Wishing you a quick recovery Kris.
Jean
Carol
I am so very sorry to hear this news about Charlie. There is nothing more to say that hasn’t been said. I will just keep you both, and Sarah and Ben, in my thoughts and prayers.
Jean
I’m very sorry to hear about your dad. I know they do say that there is no information that it is hereditary but given the lack of research about CC in general, one wonders if the issue has actually been studied very extensively.
I did want to point you in the direction of a very good website that Cherbourg posted…just look in the website section and it’s specifically on lab tests. There’s a very good explanation of Alkaline Phosphatase and the significance of elevation taken in context with the other liver function values. I think you’ll find it very helpful.
I’m hoping all the best for you!
Jean
PET scans are most commonly done now together with a CT scan and the images are merged together giving a lot more information than either alone. Patty posted a really good article about how useful PET/CT scans are in CC. If you look under the New Developments section the article is “Impact of PET scans on Intended Management” and it very clearly shows the advantage of this scan. It especially makes the point of how many more people are offered potentially curative treatment after a PET scan as opposed to just a CT. She just recently posted it on 12/8 so it should be easy to find.
Wishing all the best to your MIL and your whole family…I’m sure it’s a very difficult time for you all.
Jean
Hi Kay
I just have a minute here…have to get back to work! But, your father’s situation sounds very similar to mine. I had my first CT in September after surgery in May, and two spots were seen which were a bit concerning. I then had a PET/CT scan and it was entirely negative and the two areas were just thought to be post surgical changes. My next CT is later this month and I can say I will be more anxious this time! I know others here who have also experienced similar situations which turned out negative.
Anyway, I hope that helps a bit. Wishing your dad all the best!
Jean
Patty
I just wanted to let you know how much I appreciate all of the research that you do and the articles and research that you post. I always find them very interesting and informative.
I was sitting here thinking ” Patty, that is a really interesting article!”…so I thought I’d tell you instead of just talking to myself!
Jean
Hi John
Welcome…I wish so much that none of us were here! But, I think you’ll find this to be a wonderful, caring and supportive group of people with a lot of knowledge.
I wanted to respond to your post about Gamma Knife treatment. It is only used for intracranial tumors…brain tumors or brain metastasis. I think what you’re talking about is the Cyberknife, as it can be used for a tumor anywhere in the body, including the brain. Lainy’s Teddy is having it done soon. His is following a course of external beam (IMRT) radiation treatments. Cyberknife is able to very accurately target the tumor and spare the surrounding tissues. A large dose of radiation can be given in just a few doses. It has proven to be a very good treatment and people seem to tolerate it really quite well, with fewer side effects than external beam radiation.
Anyway, I hope that helps! I am wishing all the best for you and be sure to ask any questions that come up…someone here usually has an answer!
Jean
Kris
You sound so miserable…I just feel so badly for you. Be sure to get in enough fluids (something with electrolytes like Gatorade) and if you can’t, you really should go to the ER (I know more money!) and get some anti-nausea meds and some IV fluids. Dehydration can really effect not only your blood pressure and electrolytes, but your kidney function as well. I think you need some immediate attention about this. We can guess a lot of things almost all of them having little or nothing to do with the CC…remember clean scan in October! It could be a virus as Joyce suggested or even a partial bowel obstruction from adhesions. It could be many things but I think you really need to get it checked out now.
I’m just very concerned. We’re always here for you to complain to but I’m just quite concerned about all these symptoms you’re having. Please let us all know how you’re doing Kris.
Jean
Kris
I’m sorry to hear about all of your problems…it sounds so miserable, I can’t imagine. Very worthy of a lot of complaining I think! I just had a few thoughts. I was wondering, as mentioned, if it could relate partly to a change in your diet since you’ve been here. Marions suggestion of asking your doctor about Reglan (Metoclopramide) is a good one too, I think. It would help your stomach empty more quickly and might help the gas as well…also can be quite helpful for nausea. The other things that I’ve seen help similar problems are probiotics to balance out the intestinal flora (bacteria) and gastric enzymes which would help in digesting the food in your stomach. Both can be obtained at any nutritional supplement store.
I certainly hope something starts helping. Let us know what your doctor back in Sweden thinks…the one here certainly didn’t seem to be of any help to say the least!
Jean
Patty
What an interesting article! Just to think that the PET scan resulted in a change of no treatment to treatment in 33.6% of the patients and from treatment to no treatment in only 9.2%. It would seem that almost everyone should be getting a PET scan as part of their initial workup. This gives patients information they can use in insisting on a thorough workup prior to treatment decisions being made.
Thanks so much for posting!
Jean
This may not be of very much interest to many, but I did go back to the original statistics from the American Cancer Society which was sited as the source of these numbers. As this article states as well as the ACS site, these statistics apply to “liver and intrahepatic cholangiocarcinoma”. The article is on “Cholangiocarcinoma” but they did combine primary liver cancer, hepatocellular carcinoma being the most common, with cholangiocarcinoma when giving the statistics. I just found it very interesting that CC statistics were not given separately.
The ACS site says: “People are not statistics. Every person is different, and every person will have his/her own experience with cancer and its treatment. And the statistics are calculated from data that may be 5 or 10 years old…” Cherbourg commented on that earlier and I think it’s very true.
I just needed to clarify/understand these numbers for myself and anyone who might be reading them and felt the same as I about them!
Jean
Cherbourg…thanks for your comments. I very much appreciate them as well as Marions. I just found myself getting so depressed over these numbers and I’m not a person who usually gets depressed. I took the dogs for a long walk tonight in the rain (I do live in Seattle!) and just kept thinking about this. Kept going over those numbers, then I found myself getting really angry at this disease that has taken the lives of and continues to take the lives of so many. All of the people here that I have come to know and care about and respect so much and that leaves such grief behind. I decided that I just REFUSE to let this take ANY joy from my life…I just will not let it take that from me. Numbers are just numbers and, as you said, we are each unique…and I am not a number! I do like LuLu’s signature about her husband “I will not let cancer take him”…and I will not let it take me. My hope, no my plan, is to be a long term survivor of this…to let others know that there IS hope.
Thanks for being there! Wishing the best to everyone here in this fight that we all share.
Jean
