Anyone have cancer with unknown primary?

While that is true most often, my tumor biopsy came back as “unspecified”. It was evaluated by 3 different labs/pathologists. Until the next ca reoccurred, when the tumor was the same makeup, but the cells made more sense in that area, they couldn’t determine the primary. They took a systemic treatment approach; treating the organ & affected area.

@amdabrock1
I’m trying to understand the story. It seems if they’ve done a biopsy they would know the type of cancer. If they didn’t biopsy, how did they determine it’s cancer and not something benign? Or did they do a biopsy and it’s inconclusive as to type?What did scans show? Which areas are they planning to radiate? Maybe for radiation they don’t need to know what type of cancer??? Are there more case details you can share? It feels like we’re coming in at the end of the story.

I remember when they thought my brother had bone cancer because the issues were in his pelvis and spine, but after spinal tumors were removed and biopsied, they learned it was metastatic lung cancer. They then found two tumors in his lungs but he never had any respiratory symptoms. That’s when they started chemo and radiation. He was 45 and never smoked so we were all shocked. Point being it’s hard to know where the primary is without a biopsy.

Glad they did a biopsy. I’m not familiar with those terms. Sorry to hear about the PET scan results. I’m glad they believe the genetic testing will reveal the type of cancer. The waiting is always so hard. Hang in there. Prayers for you.

I went to emergency in November 2023 and did the biopsy in December. And then was diagnosed with CUP in December 2023. Although they tried ultrasound, MRI and PET scan after, no primary can be found still and they told me no pint to find that. I did the chemo and immunotherapy right away. After 16 chemos, I was on immunotherapy for around 6 months. Now they asked me to start new chemo again because the lymph nodes are getting bigger again. The swollen lymph nodes are several areas. This is very frustrating since no targeted medicine could be taken and stage 4 is not curable too. I would like to hear more suggestions if you know of anybody having similar situations.

The biopsy just says " positive for keratin and CAM 5.2, negative for LCA, SOX10, TTF-1, p40, CD68, S100 and HMB45. The carcinoma is described as poorly differentiated. The pet scan revealed 8 places around my body where cancer is present. Oncology says they have to do genetic testing to find out what it is and where it started if possible.

@amdabrock1
I’m trying to understand the story. It seems if they’ve done a biopsy they would know the type of cancer. If they didn’t biopsy, how did they determine it’s cancer and not something benign? Or did they do a biopsy and it’s inconclusive as to type?What did scans show? Which areas are they planning to radiate? Maybe for radiation they don’t need to know what type of cancer??? Are there more case details you can share? It feels like we’re coming in at the end of the story.

I remember when they thought my brother had bone cancer because the issues were in his pelvis and spine, but after spinal tumors were removed and biopsied, they learned it was metastatic lung cancer. They then found two tumors in his lungs but he never had any respiratory symptoms. That’s when they started chemo and radiation. He was 45 and never smoked so we were all shocked. Point being it’s hard to know where the primary is without a biopsy.

I have three main areas of more than casual pain. the largest of them is the right hip. Next is on the right side of my neck. and finally, the one that hurts when I walk, the left hip.

@amdabrock1, I moved your question about cancer of unknown primary, treatments and how successful are they to this existing discussion:

- Anyone have cancer with unknown primary? https://connect.mayoclinic.org/discussion/rennie/

I did this so you can click the link to read previous posts and connect with members like @maryannecrawford @mbkcanada @amyb5 @rita8898 @crusoe89 @umeshghimire @cindylb and many others who have experience wth cancers with unknown primaries.

Genetic testing will hopefully give your oncology team more information to choose treatment that will be the most effective.

What part of your body will they start radiation treatment on?

@amdabrock1, I moved your question about cancer of unknown primary, treatments and how successful are they to this existing discussion:

- Anyone have cancer with unknown primary? https://connect.mayoclinic.org/discussion/rennie/

I did this so you can click the link to read previous posts and connect with members like @maryannecrawford @mbkcanada @amyb5 @rita8898 @crusoe89 @umeshghimire @cindylb and many others who have experience wth cancers with unknown primaries.

Genetic testing will hopefully give your oncology team more information to choose treatment that will be the most effective.

What part of your body will they start radiation treatment on?

Cancer of unknown primary! what treatmens and how successful are they?

oncology handed down a verdict of stage four cancer. they know its cancer and where it is , but not what kind or where it started. The cancer so far doesn't seem to be in the organs but wide spread in soft tissue. Radiation treatments start this week and it will take two weeks for genetic testing to find out what kind it is. How can they determine that it is all the same type and if it will respond to treatment the same way.