Richard, I’m so sorry to hear about your wife having cancer. You are both going through a such a stressful period right now. And it’s so darned frustrating when insurance turns down a request for tests or procedures. I’ve had that happen and my oncologist wrote a narrative to the insurance company as to why I needed a test and it was then approved. So don’t take this as the final word. Keep pushing for the PET/CT scan. Call your insurance company and speak with an underwriter or contact your wife’s oncologist office to have them re-submit the request. It’s ok to be the squeaky wheel! I hope you’re doing well…sending a hug to both of you.
Hi Lori, it's been appealed. My wife's oncologist even had a peer-to-peer telephone call with the company performing these approvals for the insurance company and they still turned down the request. I'm going to write letters of appeal to the company and to the state Department of Insurance although I doubt anyone will pay attention. Thank you for your support.
Hi Lori, it's been appealed. My wife's oncologist even had a peer-to-peer telephone call with the company performing these approvals for the insurance company and they still turned down the request. I'm going to write letters of appeal to the company and to the state Department of Insurance although I doubt anyone will pay attention. Thank you for your support.
It is one of the greatest frustrations of life, to have to beg for medical care…
I wish the best for both you and your wife and hopefully the appeal works.
Wife has retroperitoneal cancer, primary unknown. She's had MRIs, Cat scans, both without contrast as she can't tolerate them. Her oncologist tried to get her a PET CT scan and the insurance company turned it down. Very frustrating.
Hello:
My question is why your doc didn’t request PET scan in the first place instead of trying to get it as a last resort. PETs pick up hot spots in the body that might not be seen using other diagnostics. I would suggest pushing a little harder or if necessary pay for it out of pocket. For proper treatment you need to know as much as possible about the situation.
Hello:
My question is why your doc didn’t request PET scan in the first place instead of trying to get it as a last resort. PETs pick up hot spots in the body that might not be seen using other diagnostics. I would suggest pushing a little harder or if necessary pay for it out of pocket. For proper treatment you need to know as much as possible about the situation.
@gisellef, this is a new oncologist for my wife, she's given up on the others for reasons including what you say, that they didn't even do the basics needed to locate the cancer. She did not want me to get into it with her old docs although I was more than willing. I'm going to find the cost of a PET CT and will pay for it myself if our final appeals don't work.
My wife was diagnosed with carcinoma of unknown primary in March this year. Lymph nodes in retroperoneal area was found to be swollen caused pain. When biopsied, it was diagnosed non small cell carcinoma of unknown primary. Is there anyone with similar case ? and what is the best option to cure this . Chemotherapy was done with platinum based reatment. Any other experience ?
My wife was diagnosed with carcinoma of unknown primary in March this year. Lymph nodes in retroperoneal area was found to be swollen caused pain. When biopsied, it was diagnosed non small cell carcinoma of unknown primary. Is there anyone with similar case ? and what is the best option to cure this . Chemotherapy was done with platinum based reatment. Any other experience ?
Im not familiar with that particular cancer.
For consideration you might be interested in watching Dr. Thomas Seyfrieds interviews online. He's a professor at Boston College.
His belief is that cancer is metabolic and not necessarily genetic.
A good layman's book is Keto for Cancer By Miriam-Kalamian.
Its an excellent read and a different approach for treatment.
Dr Thomas Seyfried had written the forward to the book.
My wife was diagnosed with carcinoma of unknown primary in March this year. Lymph nodes in retroperoneal area was found to be swollen caused pain. When biopsied, it was diagnosed non small cell carcinoma of unknown primary. Is there anyone with similar case ? and what is the best option to cure this . Chemotherapy was done with platinum based reatment. Any other experience ?
The best thing you can do is to engage with a large hospital dedicated to treating cancer. They have the experience, the protocols, the required technologies and most importantly the full range of capabilities to treat the cancer and the related side effects. Good lick
My wife was diagnosed with carcinoma of unknown primary in March this year. Lymph nodes in retroperoneal area was found to be swollen caused pain. When biopsied, it was diagnosed non small cell carcinoma of unknown primary. Is there anyone with similar case ? and what is the best option to cure this . Chemotherapy was done with platinum based reatment. Any other experience ?
In California i am at the City of Hope in Duarte. I agree with the previous post. Find the local research cancer hospital. Check their websites for who to contact. The internet is a dark place. Reputable. Mayo Clinic will come up in the search engines. MD Anderson and so many more. Keep us posted. I know more people will post after me.
My wife was diagnosed with carcinoma of unknown primary in March this year. Lymph nodes in retroperoneal area was found to be swollen caused pain. When biopsied, it was diagnosed non small cell carcinoma of unknown primary. Is there anyone with similar case ? and what is the best option to cure this . Chemotherapy was done with platinum based reatment. Any other experience ?
You wrote "retroperoneal area". Would you mean retroperitoneal? You are asking about chemotherapy treatment protocol. Do you have access to the pathology report? It is the pathologist (physician) who examines tissue and specimens under the microscope and provides a diagnosis of the kind of cancer. Peritoneal refers to the location (the tissue that is the lining for the wall of the abdomen) but not the type of cancer cells that the pathologist writes about in their report.
It sounds like cancer was found from lymph node biopsy and then in the peritoneal area. The doctors believe that there is a primary cancer somewhere else but they haven't located it. Is that correct? They are treating your wife's cancer as if it is a "secondary cancer" meaning the cancer may have originated somewhere else.
Here is a link that describes cancers related to the peritoneum:
Is your wife interested in getting another opinion? If yes, here is a link to the National Cancer Institute's NCI) Designated Cancer Centers. You might like to look through this page and locate the NCI closest to where you reside. These centers have ongoing research and clinical trials.
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Hi Lori, it's been appealed. My wife's oncologist even had a peer-to-peer telephone call with the company performing these approvals for the insurance company and they still turned down the request. I'm going to write letters of appeal to the company and to the state Department of Insurance although I doubt anyone will pay attention. Thank you for your support.
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Hug
3 ReactionsIt is one of the greatest frustrations of life, to have to beg for medical care…
I wish the best for both you and your wife and hopefully the appeal works.
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Like -
Helpful -
Hug
3 ReactionsHello:
My question is why your doc didn’t request PET scan in the first place instead of trying to get it as a last resort. PETs pick up hot spots in the body that might not be seen using other diagnostics. I would suggest pushing a little harder or if necessary pay for it out of pocket. For proper treatment you need to know as much as possible about the situation.
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Like -
Helpful -
Hug
3 Reactions@gisellef, this is a new oncologist for my wife, she's given up on the others for reasons including what you say, that they didn't even do the basics needed to locate the cancer. She did not want me to get into it with her old docs although I was more than willing. I'm going to find the cost of a PET CT and will pay for it myself if our final appeals don't work.
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Like -
Helpful -
Hug
3 ReactionsExcellent decision. It sounds as though you have been a wonderful support to her.
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3 ReactionsMy wife was diagnosed with carcinoma of unknown primary in March this year. Lymph nodes in retroperoneal area was found to be swollen caused pain. When biopsied, it was diagnosed non small cell carcinoma of unknown primary. Is there anyone with similar case ? and what is the best option to cure this . Chemotherapy was done with platinum based reatment. Any other experience ?
Im not familiar with that particular cancer.
For consideration you might be interested in watching Dr. Thomas Seyfrieds interviews online. He's a professor at Boston College.
His belief is that cancer is metabolic and not necessarily genetic.
A good layman's book is Keto for Cancer By Miriam-Kalamian.
Its an excellent read and a different approach for treatment.
Dr Thomas Seyfried had written the forward to the book.
Blessings to you and your wife.
The best thing you can do is to engage with a large hospital dedicated to treating cancer. They have the experience, the protocols, the required technologies and most importantly the full range of capabilities to treat the cancer and the related side effects. Good lick
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Like -
Helpful -
Hug
1 ReactionIn California i am at the City of Hope in Duarte. I agree with the previous post. Find the local research cancer hospital. Check their websites for who to contact. The internet is a dark place. Reputable. Mayo Clinic will come up in the search engines. MD Anderson and so many more. Keep us posted. I know more people will post after me.
@umeshghimire
You wrote "retroperoneal area". Would you mean retroperitoneal? You are asking about chemotherapy treatment protocol. Do you have access to the pathology report? It is the pathologist (physician) who examines tissue and specimens under the microscope and provides a diagnosis of the kind of cancer. Peritoneal refers to the location (the tissue that is the lining for the wall of the abdomen) but not the type of cancer cells that the pathologist writes about in their report.
It sounds like cancer was found from lymph node biopsy and then in the peritoneal area. The doctors believe that there is a primary cancer somewhere else but they haven't located it. Is that correct? They are treating your wife's cancer as if it is a "secondary cancer" meaning the cancer may have originated somewhere else.
Here is a link that describes cancers related to the peritoneum:
MD Anderson: Peritoneal Cancer
-- https://www.mdanderson.org/cancerwise/peritoneal-cancer--8-questions--answered.h00-159697545.html
Is your wife interested in getting another opinion? If yes, here is a link to the National Cancer Institute's NCI) Designated Cancer Centers. You might like to look through this page and locate the NCI closest to where you reside. These centers have ongoing research and clinical trials.
NCI-Designated Cancer Cancer Centers:
-- https://www.cancer.gov/research/infrastructure/cancer-centers
Do my questions, resources, and comments help?
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