I'm going on the assumption that previous entry dates that don't show a year have been posted in the current one. I am 65 - Medicare has kicked in - and up until recently in overall good health; no problems, no medications, etc., living in Portland, Oregon.
While shaving last March I noticed a swelling on the right side of my neck which I called to the attention of my PCP on a following unrelated visit. Short story: I was referred to an ORL specialist whom I did not get to see until August; she felt a biopsy was needed to make further diagnosis.
Biopsy results came back in September showing a Squamous Cell Carcinoma of a Lymph node requiring further testing to try identify any primary source. I underwent a laryngoscopy/biopsy (9 points in the tongue/tonsil/throat area, under anesthesia) and a full PET Scan in October.
Yes, weeks and months go by... The tests revealed No Primary source of Cancer so the diagnosis has become: Cancer [of] Unknown Primary or CUP.
The treatment now being suggested is a mix of daily radiation for seven (7) weeks with weekly dosing of chemotherapy (Cisplatin) to reinforce the action of the radiation. I'm sure I do not need to explain the side effects of such a treatment even if I don't know how it will affect me personally.
At this point I'm just asking myself a certain number of questions from quality of life to financial risks. To put it differently I don't want to end up impotent, penniless and looking at endless tests/treatments down the road.
I'm sorry not to be able to offer advice at this time but would greatly appreciate any and all suggestions on avoiding any pitfalls at this time. Should one "shop around" for care centers, insist on second opinions, look into other treatment options? The literature out there can be all over the place, hospital brochures offer rosy outcomes and "Care Teams" don't always communicate very well. I will make sure to communicate my own findings here.
My very best to all, patients, families and friends,
Certainly. How would you like to do that? Is there a private chat on here or do you mean by phone or private email? Just let me know what works for you.
I have shared on this thread before about my husband's diagnosis of CUP (Cancer of Unknown Primary). My husband is thankfully on year number 7 of his cancer and just recently we've had two PET cancer scans showing no active cancer, no recurance for 7 months. It's all good news but because they were never able to identify the source or type of cancer we also don't know what to expect. It's not that common but they think what might happen is that someone has cancer that starts somewhere as a certain type and then dies but has already traveled throughout the body. That is my husband's situation. His cancer biopsies (three of them) were never conclusive to one type of cancer. They matched lung cancer and possibly upper GI cancer. But he never really had the symptoms clearly of either type. The cancer was in his lung and lymph nodes near his lungs, which later spread to his hips, spine and adrenal glands. With repeated radiation treatments of different types and a round of chemo we are here today with no obvious cancer and improved blood work but my husband is still quite tired with symptoms we can't actually pinpoint treatment for either. If you'd like to discuss anymore on CUP I'm happy to help.
I have shared on this thread before about my husband's diagnosis of CUP (Cancer of Unknown Primary). My husband is thankfully on year number 7 of his cancer and just recently we've had two PET cancer scans showing no active cancer, no recurance for 7 months. It's all good news but because they were never able to identify the source or type of cancer we also don't know what to expect. It's not that common but they think what might happen is that someone has cancer that starts somewhere as a certain type and then dies but has already traveled throughout the body. That is my husband's situation. His cancer biopsies (three of them) were never conclusive to one type of cancer. They matched lung cancer and possibly upper GI cancer. But he never really had the symptoms clearly of either type. The cancer was in his lung and lymph nodes near his lungs, which later spread to his hips, spine and adrenal glands. With repeated radiation treatments of different types and a round of chemo we are here today with no obvious cancer and improved blood work but my husband is still quite tired with symptoms we can't actually pinpoint treatment for either. If you'd like to discuss anymore on CUP I'm happy to help.
@sheridonaldson, this is sometimes also called carcinoma of unknown primary (CUP) . It's an unsettling diagnosis. I moved your question to this existing discussion:
- Anyone have cancer with unknown primary? https://connect.mayoclinic.org/discussion/rennie/
I did this so you can read some of the previous posts and learn more and connect with members like @cindylb@rita8898@sylvia67, who are familiar with the uncertainties of this diagnosis as family members were also diagnosed with CUP.
Hi @sheridonaldson, A cancer of unknown origin feels like a pretty nebulous diagnosis and doesn’t give you much of an answer. It’s the medical phrasing used when there is a tumor in the body that shows cancerous cells but it’s not the origin of the cancer. This can happen when there is a lymph node in the body involved. It seldom starts there but travels from another source.
Doctors need to know the source of the cancerous cells so that the appropriate treatment can started. To do that, the oncologist will need a few more tests such as a biopsy of the area in question, possibly imaging and blood tests.
This is our Mayo Clinic’s page on Cancer of unknown origin which may help you understand a little more about what’s possibly going on. https://www.mayoclinic.org/diseases-conditions/carcinoma-unknown-primary/diagnosis-treatment/drc-20433758
Sheri, is this news you received or someone in your family? I know it’s frightening to hear those words but getting an early diagnosis is key to recovery. Were there symptoms leading to the discovery or a tumor found?
@sylvia67, as if cancer wasn't tough enough, you've also learned your brother's cancer cannot be clearly identified. I hope @cindylb@rita8898 will return to share their experiences with you.
Sylvia, I assume the long wait before starting chemo was so they could figure out how the cancer behaved to know what type of chemo to start him on. Not all chemo is the same. Do you know what drugs he'll be getting? How are you doing through all this?
@sylvia67 and @colleenyoung I'm sorry to have been so absent from the site. My silly computer keeps sending everything to junk mail and deleting it but I'm fighting back, ha ha. Sylvia67 - sorry to hear about your brother. Colleen probably asked me to reply because my husband was diagnosed with 'cancer of unknown primary' 6 years ago. It's a cancer they can't quite identify. My husband presented with a small tumor in his lung and one in a lymph node near his lung. They assumed lung cancer but after 4 biopsies it doesn't match a specific cancer. It's hard to have cancer but to have one where they don't quite know what it is, even harder. My husband's cancer has spread multiple times and is treated either with chemo or radiation. We also have tried immunotherapy (which oddly made him even sicker?). The radiation works where it can be applied to get rid of the spread of cancer. Right now and off and on he has no signs of cancer and then it comes back. It's very hard to not know what is going to happen and hard for the doctors to know what to do to stop or slow it down. So far we've been fairly lucky that the radiation works. They chose chemo based on an assumption of lung cancer and we don't know if it worked or the radiation or the immunotherapy as they were all used at same time. I do a lot of my own research with the blessing of our oncology team. I have found a couple of rare lung cancers that are similar to his experience and as the cancer acts and spreads we've eliminated upper GI cancer so far. All I can add is ....tell your brother to get a second opinion - just in case and pester the doctors with ideas and questions to keep them working on the cancer type. We're blessed in that my husband is still here after 6 years and they gave him 6 months. They've been truly difficult years for him and for me but he's still here and we're grateful.
My brother has a growth on his liver that Dr’s say has metastasized from else where but they cannot find the primary anywhere. They will be starting a chemo after a very long wait now.
Has anyone else gone through this and if so, what kind of chemo did you have and how was it on your body? Thankyou
@sylvia67, as if cancer wasn't tough enough, you've also learned your brother's cancer cannot be clearly identified. I hope @cindylb@rita8898 will return to share their experiences with you.
Sylvia, I assume the long wait before starting chemo was so they could figure out how the cancer behaved to know what type of chemo to start him on. Not all chemo is the same. Do you know what drugs he'll be getting? How are you doing through all this?
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Hello to all,
I'm going on the assumption that previous entry dates that don't show a year have been posted in the current one. I am 65 - Medicare has kicked in - and up until recently in overall good health; no problems, no medications, etc., living in Portland, Oregon.
While shaving last March I noticed a swelling on the right side of my neck which I called to the attention of my PCP on a following unrelated visit. Short story: I was referred to an ORL specialist whom I did not get to see until August; she felt a biopsy was needed to make further diagnosis.
Biopsy results came back in September showing a Squamous Cell Carcinoma of a Lymph node requiring further testing to try identify any primary source. I underwent a laryngoscopy/biopsy (9 points in the tongue/tonsil/throat area, under anesthesia) and a full PET Scan in October.
Yes, weeks and months go by... The tests revealed No Primary source of Cancer so the diagnosis has become: Cancer [of] Unknown Primary or CUP.
The treatment now being suggested is a mix of daily radiation for seven (7) weeks with weekly dosing of chemotherapy (Cisplatin) to reinforce the action of the radiation. I'm sure I do not need to explain the side effects of such a treatment even if I don't know how it will affect me personally.
At this point I'm just asking myself a certain number of questions from quality of life to financial risks. To put it differently I don't want to end up impotent, penniless and looking at endless tests/treatments down the road.
I'm sorry not to be able to offer advice at this time but would greatly appreciate any and all suggestions on avoiding any pitfalls at this time. Should one "shop around" for care centers, insist on second opinions, look into other treatment options? The literature out there can be all over the place, hospital brochures offer rosy outcomes and "Care Teams" don't always communicate very well. I will make sure to communicate my own findings here.
My very best to all, patients, families and friends,
M.
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1 ReactionCertainly. How would you like to do that? Is there a private chat on here or do you mean by phone or private email? Just let me know what works for you.
@cindylb
Thank you so much for a new perspective! would it be possible to chat privately?
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1 Reaction@sheridonaldson
I have shared on this thread before about my husband's diagnosis of CUP (Cancer of Unknown Primary). My husband is thankfully on year number 7 of his cancer and just recently we've had two PET cancer scans showing no active cancer, no recurance for 7 months. It's all good news but because they were never able to identify the source or type of cancer we also don't know what to expect. It's not that common but they think what might happen is that someone has cancer that starts somewhere as a certain type and then dies but has already traveled throughout the body. That is my husband's situation. His cancer biopsies (three of them) were never conclusive to one type of cancer. They matched lung cancer and possibly upper GI cancer. But he never really had the symptoms clearly of either type. The cancer was in his lung and lymph nodes near his lungs, which later spread to his hips, spine and adrenal glands. With repeated radiation treatments of different types and a round of chemo we are here today with no obvious cancer and improved blood work but my husband is still quite tired with symptoms we can't actually pinpoint treatment for either. If you'd like to discuss anymore on CUP I'm happy to help.
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Like -
Helpful -
Hug
7 Reactions@sheridonaldson, this is sometimes also called carcinoma of unknown primary (CUP) . It's an unsettling diagnosis. I moved your question to this existing discussion:
- Anyone have cancer with unknown primary? https://connect.mayoclinic.org/discussion/rennie/
I did this so you can read some of the previous posts and learn more and connect with members like @cindylb @rita8898 @sylvia67, who are familiar with the uncertainties of this diagnosis as family members were also diagnosed with CUP.
-
Like -
Helpful -
Hug
1 ReactionHi @sheridonaldson, A cancer of unknown origin feels like a pretty nebulous diagnosis and doesn’t give you much of an answer. It’s the medical phrasing used when there is a tumor in the body that shows cancerous cells but it’s not the origin of the cancer. This can happen when there is a lymph node in the body involved. It seldom starts there but travels from another source.
Doctors need to know the source of the cancerous cells so that the appropriate treatment can started. To do that, the oncologist will need a few more tests such as a biopsy of the area in question, possibly imaging and blood tests.
This is our Mayo Clinic’s page on Cancer of unknown origin which may help you understand a little more about what’s possibly going on.
https://www.mayoclinic.org/diseases-conditions/carcinoma-unknown-primary/diagnosis-treatment/drc-20433758
Sheri, is this news you received or someone in your family? I know it’s frightening to hear those words but getting an early diagnosis is key to recovery. Were there symptoms leading to the discovery or a tumor found?
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Helpful -
Hug
3 ReactionsCancer of unknown origin
Good morning! Didn't know that this was a thing--has anyone else received this diagnosis?
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2 Reactions@cindylb Thankyou so very much for sharing your husbands story. It really gives us some hope. Blessings to you and your husband ❤️🙏
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2 Reactions@sylvia67 and @colleenyoung I'm sorry to have been so absent from the site. My silly computer keeps sending everything to junk mail and deleting it but I'm fighting back, ha ha. Sylvia67 - sorry to hear about your brother. Colleen probably asked me to reply because my husband was diagnosed with 'cancer of unknown primary' 6 years ago. It's a cancer they can't quite identify. My husband presented with a small tumor in his lung and one in a lymph node near his lung. They assumed lung cancer but after 4 biopsies it doesn't match a specific cancer. It's hard to have cancer but to have one where they don't quite know what it is, even harder. My husband's cancer has spread multiple times and is treated either with chemo or radiation. We also have tried immunotherapy (which oddly made him even sicker?). The radiation works where it can be applied to get rid of the spread of cancer. Right now and off and on he has no signs of cancer and then it comes back. It's very hard to not know what is going to happen and hard for the doctors to know what to do to stop or slow it down. So far we've been fairly lucky that the radiation works. They chose chemo based on an assumption of lung cancer and we don't know if it worked or the radiation or the immunotherapy as they were all used at same time. I do a lot of my own research with the blessing of our oncology team. I have found a couple of rare lung cancers that are similar to his experience and as the cancer acts and spreads we've eliminated upper GI cancer so far. All I can add is ....tell your brother to get a second opinion - just in case and pester the doctors with ideas and questions to keep them working on the cancer type. We're blessed in that my husband is still here after 6 years and they gave him 6 months. They've been truly difficult years for him and for me but he's still here and we're grateful.
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Like -
Helpful -
Hug
5 Reactions@sylvia67, as if cancer wasn't tough enough, you've also learned your brother's cancer cannot be clearly identified. I hope @cindylb @rita8898 will return to share their experiences with you.
Sylvia, I assume the long wait before starting chemo was so they could figure out how the cancer behaved to know what type of chemo to start him on. Not all chemo is the same. Do you know what drugs he'll be getting? How are you doing through all this?
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Like -
Helpful -
Hug
1 Reaction