I would like to join @colleenyoung in welcoming you to Mayo Connect and also in inviting you to join our NETs support group. I see that Colleen gave you some links to the group where I am a member and mentor. I'm sure the other members of the NETs group would be interested in having you share your experience. You will find them to be a very supportive and encouraging group of patients with NETs.
I was diagnosed with NETs over 20 years ago and I understand that this is a rare type of cancer and can be confusing. Will you take a look at the NETs support group?
Hi @hopeful33250 ,
I may join the group. My primary has still not found, only the lump in my neck lymph node that the pathology indicated it is small cell neuroendocrine carcinoma. Not sure if there's any canceof unknown primary with this type in the NET group. I guess it can't hurt to look. Thanks!
Hi @hopeful33250 ,
I may join the group. My primary has still not found, only the lump in my neck lymph node that the pathology indicated it is small cell neuroendocrine carcinoma. Not sure if there's any canceof unknown primary with this type in the NET group. I guess it can't hurt to look. Thanks!
Hi @mbkcanada
I am not a medical professional and this comment may be off base but have you had a PET scan to identify the primary cause or source of your cancer ?
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.
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.
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!
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.
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.
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.
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.
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Hi @hopeful33250 ,
I may join the group. My primary has still not found, only the lump in my neck lymph node that the pathology indicated it is small cell neuroendocrine carcinoma. Not sure if there's any canceof unknown primary with this type in the NET group. I guess it can't hurt to look. Thanks!
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Like -
Helpful -
Hug
2 ReactionsHi @mbkcanada
I am not a medical professional and this comment may be off base but have you had a PET scan to identify the primary cause or source of your cancer ?
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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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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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 ReactionsJust a quick question. Have you been on chemotherapy and immunotherapy for the past 2 years?
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1 ReactionAt 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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Like -
Helpful -
Hug
1 ReactionMy 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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Like -
Helpful -
Hug
4 ReactionsWife 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.
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Like -
Helpful -
Hug
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