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 ?
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.
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.
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.
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.
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.
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.
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.
My heart goes out to you. Best of medical care I wish for you. I hope you have a good care team. I have unknown primary. I was first diagnosed in 2017. That first tumor was removed from my brain. I followed with radiation and the Keytruda for 18 months. Side effects, thyroid, and pancreatic inefficiency. probably the main ones. I can not imagine what you are going through. My prayers for your continued strength and peace. Move to this year. I had genetic testing done. Two new brain tumors this spring, Did rations to them they could not be removed by surgery to size and location. The radiation appears to have shrank them. Then after pet/CT they was cancer in Lymph node below my esophagus. Due to the location I was given 6 different options. I did have them do a needle biopsy with same results, unknown primary. (can't target with chemo)I choose radiation again. They had to outline the tumor so they did get a little part of the heart but said everything was with in tolerance. I am recovering from that currently. I have difficulty swallowing and pain in the back and top of my head, especially when I drink. They don't understand my head pain but it is real. More scan to follow up in Jan and Feb 2025. Over 7 years but I'm here.
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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.
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 ?
Excellent decision. It sounds as though you have been a wonderful support to her.
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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.
-
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.
-
Like -
Helpful -
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.
-
Like -
Helpful -
Hug
3 ReactionsHi 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.
-
Like -
Helpful -
Hug
3 ReactionsRichard, 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.
-
Like -
Helpful -
Hug
1 ReactionWife 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.
My heart goes out to you. Best of medical care I wish for you. I hope you have a good care team. I have unknown primary. I was first diagnosed in 2017. That first tumor was removed from my brain. I followed with radiation and the Keytruda for 18 months. Side effects, thyroid, and pancreatic inefficiency. probably the main ones. I can not imagine what you are going through. My prayers for your continued strength and peace. Move to this year. I had genetic testing done. Two new brain tumors this spring, Did rations to them they could not be removed by surgery to size and location. The radiation appears to have shrank them. Then after pet/CT they was cancer in Lymph node below my esophagus. Due to the location I was given 6 different options. I did have them do a needle biopsy with same results, unknown primary. (can't target with chemo)I choose radiation again. They had to outline the tumor so they did get a little part of the heart but said everything was with in tolerance. I am recovering from that currently. I have difficulty swallowing and pain in the back and top of my head, especially when I drink. They don't understand my head pain but it is real. More scan to follow up in Jan and Feb 2025. Over 7 years but I'm here.
-
Like -
Helpful -
Hug
4 Reactions