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.
At first just chemotherapy (FOLFOX, FOLFURI) which was really tough. Now I'm on the immunotherapy and 5-FU which seems to be working and has less side effects.
I also have cancer of unknown primary and was diagnosed 2.5 years ago. Currently I am undergoing treatment with immunotherapy and chemotherapy and it is keeping the cancer stable. It has been a rollercoaster that's for sure, but the side effects are minimal and I am able to continue working (although I am looking seriously at retirement). @tobydrake7, I have no idea if my particular treatment is an option (OPDIVO + FOLFOX) but so far so good. I wish you peace!
I also have cancer of unknown primary and was diagnosed 2.5 years ago. Currently I am undergoing treatment with immunotherapy and chemotherapy and it is keeping the cancer stable. It has been a rollercoaster that's for sure, but the side effects are minimal and I am able to continue working (although I am looking seriously at retirement). @tobydrake7, I have no idea if my particular treatment is an option (OPDIVO + FOLFOX) but so far so good. I wish you peace!
I have cancer of unknown primary. My bowels are packed with cancer which has caused bowel obstructions. I get nutrition (TPN) through a PICC line and all stomach fluid is evacuated using a G-Tube because of the bowel obstructions. I have not had solid food for around nine months now.
My chemotherapy slowed cancer progress, but I’m on a temporary hold for more treatments because a bacterial infection was found and the infectious disease specialists recommended removing the PICC line and my chemo port since the infection could take hold at these locations and could be life threatening.
The surgical options are not viable at this point, since there is so much cancer in my abdomen, so I may be on my last legs here. I am getting a referal to another high-ranking cancer center. so maybe I can get a solution from them.
Are there any other folks with this same type of bowel cancer with unknown primary? If so, I’d like to hear your story and hope you found a way through. Thank you.
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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.
-
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 ReactionsAt first just chemotherapy (FOLFOX, FOLFURI) which was really tough. Now I'm on the immunotherapy and 5-FU which seems to be working and has less side effects.
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Helpful -
Hug
1 ReactionJust a quick question. Have you been on chemotherapy and immunotherapy for the past 2 years?
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1 ReactionI also have cancer of unknown primary and was diagnosed 2.5 years ago. Currently I am undergoing treatment with immunotherapy and chemotherapy and it is keeping the cancer stable. It has been a rollercoaster that's for sure, but the side effects are minimal and I am able to continue working (although I am looking seriously at retirement). @tobydrake7, I have no idea if my particular treatment is an option (OPDIVO + FOLFOX) but so far so good. I wish you peace!
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Hug
3 ReactionsHere is something promising that I’m following: https://health.ucsd.edu/news/press-releases/2024-10-16-study-breast-cancer-drug-shows-potential-for-rare-appendix-cancer/
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