bill
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Hi Marion and Kris. I still read the posts regularly and try to contribute when I can. It is striking how many new names have been added over the years.
Kris, your sense of humor and determination are amazing. Marion, it is nice of you to ask about my boys – they are doing well and providing the typical teenage challenges.
Keep doing your good work. It makes a difference.
Bill
I felt a big void when my wife died. Not only was Kathleen missing from my life but I had lost my “part-time job” as her caregiver. That role gave me a purpose and losing her also meant losing that role. The result was a lot of open time to fill and nothing seemed to adequately fill the void. Maybe your experience is similar.
It does get easier with time.
There were a couple times with my wife where we had to have her admitted to the hospital for a couple days just to have her evaluated, get her some nutrition via IV and make sure nothing was amiss. No one wants to go the hospital but we never regretted our decision.
Good luck.
Keith,
My wife had two surgeries and several rounds of chemo before she had Theraspheres at Mayo Clinic in MN. Her MD was Lewis Roberts. Chemo wasn’t really working so that’s why they went with the spheres (which was the best thing she ever did). After her cancer spread to her lungs, they tried chemo again witout success.
Good luck.
Bill
I strongly encourage second opinions with this disease because there is no one “right way” that works for all patients. Either UW-Madison or Mayo Clinic seem like good bets because they see more cc patients. There must be some Chicago area hospitals that might be more convenient also.
Good luck.
There are plans out there paying for Therasphere.
* Listen to this radio program:
http://www.patientpower.info/listenhealthtopicdetai
Suzanne,
The appeal should address the reason for denial and the specific plan provisions that cover the type of treatment you are seeking. For example, if BCBS denied the PET because it was not “medically necessary”, you should appeal their interpretation of medically necessary (it should be defined in your plan document). Your physician’s office may be able to help you there.
Didn’t someone just post the findings of a study that showed PETs really can help in the diagnosis of his cancer? That may be helpful to include aslo.
I would also get your employer involved (asssuming it is an employer sponsored plan). Chances are you have a “self-insured” plan so the employer is actually the decision maker and the insurance company just an administrator in that case.
Let me know if I can help. Keep fighting. Good luck.
Bill
My wife had success with two Therasphere treatments at Mayo Clinic. It extended her life a year with little apparent side effects. Good luck.
Carol,
Do not take no for an answer! Keep fighting for coverage because there are others out there paying for this.
* Listen to this radio program:
http://www.patientpower.info/listenhealthtopicdetails.asp?showid=HR062707&Topic=Health%20Insurance
* Check out CIGNA’s coverage position for this treatment:
http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0081_coveragepositioncriteri a_selective_internal_radiation_therapy.pdfMy wife had coverage for this with a Minnesota health plan called Medica. I don’t know if they did an exhaustive study of whether to cover Therasphere but they did cover it. She had two treatments at Mayo Clinic and they were the best things that she did to address the liver tumors. Unfortunately, it doesn’t help when the cancer spreads beyond the liver.
Good luck.
Bill
Lauren,
Never stop fighting this disease and never stop fighting the insurance companies. I know from personal experience that you shouldn’t take no for an answer.
Here is one of my favorite links on how to fight insurance. Good luck to you and your brother!
Bill
http://www.patientpower.info/listenhealthtopicdetails.asp?showid=HR062707&Topic=Health%20Insurance
Sophie,
Kathleen had Medica insurance (MN based health plan with a million members) and her Therasphere expenses at Mayo Clinic were paid in full. Remember, she had a mixed tumor of cholangiocarcinoma and hepatocellular carcinoma so that may have played a role in the coverage decision.
I did some research for another member on this site and found that CIGNA covered Therapshere in some cases also (see link).
Don’t let an initial insurance denial stop you. Fight it and keep escalating the issue or get your employer involved. Let me know if I can hekp. Check this out:
http://www.patientpower.info/listenhealthtopicdetails.asp?showid=HR062707&Topic=Health%20Insurance
Good luck!
Bill
My wife, Kathleen, had the same type of mixed tumor and after two surgeries and several rounds of chemo, she was treated with Therasphere at Mayo Clinic. Her first round was in October and her second in February, after which it was determined her liver was too weak to handle any more of the radiation.
Insurance covered both treatments and it was the easiest treatment she ever received. No side effects and wonderful results (AFP way down and liver tumors reduced). Unfortunately, her cancer had already spread to her lungs and that, combined with all the treatment her liver endured over 5+ years, was just too much for Kathleen.
I strongly believe in Therasphere and you are being considered for this at a much earlier stage than Kathleen so there is reason for optimism.
Good Luck!
Wow. Barb was one of those people whose posts were always inspiring. Where do people like her find the courage?
May God bless her and all her loved ones.
Bill
Jean,
Your situation sounds very similar to my wife’s. She was told to come back to Mayo Clinic every three months for a CT scan also and the waiting and wondering was very nerve wracking. We both met with a counselor who saw cancer patients and that was very helpful. We also read “Dancing in Limbo” which seemed to address many of the concerns we had. And of course, she continued to get support and encouragement from her local oncologist, whom she admired and trusted.
It seems like you have reason for optimism based on the results of your surgery but I think I can understand why you are still concerned. Would it help to see another cholangiocarcinoma expert to confirm that you are doing everything you can to treat this and at least get another opinion?
I believe another reason for optimism is the ongoing discovery of new or alternative treatment options for this condition, even if it does return. I hope for the best for you and your family.
Bill
Joyce,
I can only address your question #3. My wife, Kathleen, actually had two liver resections at Mayo Clinic, the second by Dr. Nagorney. Each time she was told the cancer was expected to return and each time it did. It was still worth it for her to have the surgeries and with additional treatments she ended up living a good life with cc for 5 1/2 years.
I love Mayo Clinic but they have a reputation for being selective about who and what they will treat. The cynical view is they want to have more success stories and better “numbers”. Mayo does not have all the answers and they are not perfect so I would not hesitate to consider another doctor’s opinion about going ahead with surgery. I don’t thing anyone has all the answers to cc so I am a believer that getting those second and third opinions is very wise.
Good luck to you.
Bill
