NET (Lung + liver metastatis) Radical nephrectomy done for RCC

Welcome @surbhi1. I added your message to the NETs Support Group as well as the cancer group. Getting the news that you have cancer is rough enough, but to hear that you have 2 different primary cancers must be quite a lot to comprehend.

@jstubbs0218 @cvb can share their experiences with lung NETS and @azkidney57 @jimchardy @mb4414 @cindysummit @bomed can share about renal cell carcinoma. Jim also knows what is it like to have 2 primary cancers.

Surbhi, have you asked if you have a hereditary cancer syndrome, like Lynch syndrome? What treatment will you be having after your recovery from the nephrectomy? How is the recovery going?

Is there a NET team anyone can recommend?

I had a right upper lobe lobectomy in May 2022. The lung net pathology noted angiolymphasivcular involvement. What does that mean?Since then they found a new growth in my right lower lobe and liver (which I will have a liver biopsy next week). Some doctors say the liver growth is a hemangioma from birth (which is weird because why didn’t it show up on the million other scans I had prior to lung lobectomy May 2022? In addition September 2022 I was in a lot of right upper abdonimal pain and nausea. The doctor ordered a scan and they found the liver lesion. Radiologist (not NET radiologist said it was a hemangioma from birth and to not worry about it. Then why did right upper abdonimal pain and nausea start in September 2022 and is not going away and it is tender to the touch? Hot and swollen? And it did not show up prior to September? The radiology reports always read cancer has not metasisized. Even when I had a PET copper dotonate scan August 2022 and it shows SUV uptake in a spine growth and rib. Then in September 2022 my right upper abdonimal area was swollen, hot and on fire and I was nausea but am told it is just a liver hemangioma. Moffitt Cancer Center is doing a liver biopsy which I will travel 1,000 miles to do so it is with a NET team. My family is pressuring me to just get it down locally at the Univeristy of Michigan. What should I do? Does it matter where you get biospies and scans done at? If it is with a. NET center or not?

Thanks for your post melmangen. A hemangioma is like a birthmark. I have them on my arm and they are an indication of the Bile Duct Cancer I have. It should not matter who does a biopsy if it's part of their primary diagnostic job. Of course your oncologist's recommendation and insurance approval for payment are considerations. The SUV uptake is certainly a concern along with swelling in the liver area, pain, nausea and the burning sensation. PET scans are a good diagnostic tool. My PET Scans show my cancers in my bile ducts and liver have not spread further and only one liver lesion has grown. My oncologist put me on a chemotherapy treatment of cis+gem drugs and I am now on the immunotherapy drug Imfinzi. I am not a medical professional but I believe I must have an active role in fighting my cancer. Feel free to contact me on this forum. John

melmangen The intratumoral vascular invasion is a useful prognostic factor for pathological stage 1 small cell lung carcinoma and used when angiolymphasivcular involvement is indicated.

Hello @melmangen,

It is good to hear from you again. I am sorry to hear of your continued symptoms and concerns.

Regarding your question about scans and biopsies, please know that once a scan or biopsy is performed, those scans or biopsy slides can be viewed by other medical professionals very easily. So, if you have the testing done at University of Michigan, the results can be sent to another facility if you would like a second opinion down the road.

In one of your posts from October, you mentioned that you would be having a virtual consultation with Mayo Clinic. Did you get any helpful information as a result of that consultation?