Anyone have cancer with unknown primary?

Posted by rita8898 @rita8898, May 20, 2019

Anyone suffering from cancer with unknown primary?

Interested in more discussions like this? Go to the Cancer group.

Hi @rita8898, welcome to Connect. I'd like to introduce you to @cindylb whose husband also has cancer of unknown primary. It can be such a frustrating diagnosis.

While we wait for others to join the conversation, can you tell us a bit more about your situation? Where is the cancer located? What treatments, if any, have you had?

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My daughter age 44 was diagnosed in January with cancer. She has been treated with chemo for 6 treatments. The cancer is in her liver, Legions on her bone and seems to be spreading. She is very weak and unable to walk any distance. After many test the doctors at Mayo are not able to find the origin. Any help is appreciated. RR

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@rita8898

My daughter age 44 was diagnosed in January with cancer. She has been treated with chemo for 6 treatments. The cancer is in her liver, Legions on her bone and seems to be spreading. She is very weak and unable to walk any distance. After many test the doctors at Mayo are not able to find the origin. Any help is appreciated. RR

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Hello Rita8898………Colleen has shared your post with me. I'm sorry your daughter is going through this and your family as well.
My husband was diagnosed with cancer about 16 months ago. The tumor is in his lung and a nearby lymph node and the cancer is circulating through his body (via the lymph node). After numerous biopsies and scans they cannot identify the type of cancer he has. It doesn't match lung cancer (the only site of the cancer) and it doesn't match any other specific type of cancer but has some elements of an upper GI cancer. We continue to scan every 3 months and no obvious spread has occurred (no other tumors or specific sites of cancer activity). Because they can't identify the cancer my husband has opted not to do chemo because they can't pick a chemo type that they feel would be effective. They have taken surgery, radiation and targeted and immunotherapy off of his option list. We are watching and waiting and it's terribly frustrating. We have gotten the most extensive pathology and genetic testing available but still no answers.
My husband is 66 and has other health issues (COPD and peripheral neuropathy in his feet) so the doctors don't think chemo will be tolerated well by him.
I am a breast cancer survivor and although it's a tough experience…………nothing quite compares to the fear and frustration of being told you or a loved one has cancer but they don't know kind of cancer it is. When diagnosed my husband was said to be Stage IV, Terminal within months. That has now changed to Stage III 'stable disease'. His tumor is smaller but the general cancer activity (per the PET scan) is higher by quite a bit.
We're on the watch and wait plan. I'm very anxious about that 'non plan' but the doctors don't have any other alternatives for us. It sounds like your daughter is using chemo to slow the whole body progression of the cancer. Is that working and reducing her cancer burden? I hope so.
We have done lots of research and consulted multiple oncologists and one theory on CUP is that the cancer started somewhere in the body and that site of the cancer 'died'. But before it did, the cancer spread to another location (in your daughter's case the liver and bones, in my husband – his lung) and started to grow there. Because the original site no longer exists, they can't pinpoint the source or type. Anyway, that's on explanation we were given. I think it's also very possible that some people just don't fit the 'cancer mold' and their cancers appear different than others.
Will you share how your daughter found her cancer initially, what if any symptoms she has or had and how her treatments are working for her? I hope we'll stay in touch. I'm happy to share any news on my husband and would like to know how your daughter is doing. I'm afraid we are a small group….so maybe we can help each other to navigate this.
Hugs
They say Cancer of Unkown Primary is rare (CUP), but I think it's just that the pathology and tests haven't caught up to some cancer types…….

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@cindylb

Hello Rita8898………Colleen has shared your post with me. I'm sorry your daughter is going through this and your family as well.
My husband was diagnosed with cancer about 16 months ago. The tumor is in his lung and a nearby lymph node and the cancer is circulating through his body (via the lymph node). After numerous biopsies and scans they cannot identify the type of cancer he has. It doesn't match lung cancer (the only site of the cancer) and it doesn't match any other specific type of cancer but has some elements of an upper GI cancer. We continue to scan every 3 months and no obvious spread has occurred (no other tumors or specific sites of cancer activity). Because they can't identify the cancer my husband has opted not to do chemo because they can't pick a chemo type that they feel would be effective. They have taken surgery, radiation and targeted and immunotherapy off of his option list. We are watching and waiting and it's terribly frustrating. We have gotten the most extensive pathology and genetic testing available but still no answers.
My husband is 66 and has other health issues (COPD and peripheral neuropathy in his feet) so the doctors don't think chemo will be tolerated well by him.
I am a breast cancer survivor and although it's a tough experience…………nothing quite compares to the fear and frustration of being told you or a loved one has cancer but they don't know kind of cancer it is. When diagnosed my husband was said to be Stage IV, Terminal within months. That has now changed to Stage III 'stable disease'. His tumor is smaller but the general cancer activity (per the PET scan) is higher by quite a bit.
We're on the watch and wait plan. I'm very anxious about that 'non plan' but the doctors don't have any other alternatives for us. It sounds like your daughter is using chemo to slow the whole body progression of the cancer. Is that working and reducing her cancer burden? I hope so.
We have done lots of research and consulted multiple oncologists and one theory on CUP is that the cancer started somewhere in the body and that site of the cancer 'died'. But before it did, the cancer spread to another location (in your daughter's case the liver and bones, in my husband – his lung) and started to grow there. Because the original site no longer exists, they can't pinpoint the source or type. Anyway, that's on explanation we were given. I think it's also very possible that some people just don't fit the 'cancer mold' and their cancers appear different than others.
Will you share how your daughter found her cancer initially, what if any symptoms she has or had and how her treatments are working for her? I hope we'll stay in touch. I'm happy to share any news on my husband and would like to know how your daughter is doing. I'm afraid we are a small group….so maybe we can help each other to navigate this.
Hugs
They say Cancer of Unkown Primary is rare (CUP), but I think it's just that the pathology and tests haven't caught up to some cancer types…….

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Hi Cindy, My daughter felt ill in November of last year. After numerous trips to doctors they diagnosed her with Gastroparesis. She had lost over 30 lbs, could not eat and was very light headed. She spent Christmas Eve in emergency room. Finally on January they found the cancer. After a pet scan it Revealed it was on liver and Legions on bones. A Generic chemo was started but after 3 treatments- one every three weeks it caused Severe neuropathy in feet. She was put on different chemo now but the feet still hurt badly. Like your husband they can’t treat it effectively because of the CUP. My daughter was very healthy and active can hardly walk now. They said it’s stage 4 but hasn’t given any further diagnosis. She has appt. on June 18th at Mayo for a ct scan to see where she gos from here. They mentioned Immunotherapy. Is that possible for your husband. It’s where your own cells fight the cancer. Prayers to you and your husband. Rita

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Rita, Prayers to you and your daughter as well. It's hard to watch my husband suffer and I love him very much but……..if it were my daughter, it would be even worse (my daughter is 31 and healthy thank goodness).
The chemo causes many side effects and the neuropathy is one of those…..I'm sorry your daughter is suffering so much with that now. If chemo is stopped the neuropathy may subside but that's the 'catch 22'……then you're not treating the cancer.
My husband's cancer doesn't have genetic markers (right now) that would let him use immunotherapy or targeted therapy. Also, due to his age I think they are being less aggressive about treatment options. With your daughter being so young, she may have more options.
There is a type of treatment that is quite new and quite difficult for some people but is especially good at eliminating cancer, "Car T-Cell" therapy. Mayo may have that available. It seems to completely eradicate blood cancers (like lymphoma and leukemia) and now they are using it for other cancers to excellent results. They actually remove the patients own blood, treat it to fight the specific cancer with T Cells and then put it back in the patient. The effect can be quite strong on the patient (fevers, etc) because you're ramping up the immune system drastically but it can completely remove cancer. Don't know if that might be an option for your daughter but it's worth asking about and researching. I asked for my husband but they felt he wouldn't survive the process due to his age and other conditions. I also don't know if it's applicable to CUP.
Did they give you any 'options' on what the cancer might be? For my husband it was possibly lung, possibly upper GI types (even though it only partly matches each type). At least that narrowed it down slightly.
Many cancers spread to the liver and lung when they first start to move through the body. Spread to bones is common in breast cancer….also there are specific bone cancers and blood borne cancers like leukemia. Hopefully the doctors have looked at all options.
I will be praying for your daughter and your family and I'm sorry you are going through this.
Hugs

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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

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@sylvia67

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

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@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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@colleenyoung

@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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@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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@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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