Welcome to the NETs Group! Come say hi.

Thank you Colleen. They have done following tests in order below

Xray - saw a mass in lung
Cad Scan - mass in lung , spreads in spine, liver, breast
PETscan - Confirmed the cad scan
MRI of Brain - thankfully all good there.
Biopsy of liver : Neuroendocrine Cancer
Biopsy of breast : result pending
Origin : unknown

Right now we are seeing surgeon oncologist at Emory to review the results . I believe he wants to do a overall MRI. Please send me information on great neuroendocrine oncologist. I've been told best place would be MD Anderson and Mayo. But we don't know any names.

Thank you

Hi @aliatl, I'd like to add my welcome along with @hopeful33250. I moved your message to this intro discussion:
- Welcome to the NETs Group! Come say hi. https://connect.mayoclinic.org/discussion/welcome-to-our-new-group/

I did this so you can read previous posts and connect easily with fellow members, especially @ceavce @tomewilson @kim1965 @markmark007 and others who are caring for a spouse with NETs.

I know you are worried. Who wouldn't be? You've just been thrown into a foreign zone and things are turned upside down for you and your family. There are quite a few members here who go to Mayo Clinic Jacksonville. Dr. Starr's team specialize in NETs. Should you decide to get a second opinion at Mayo Clinic, I know you'll be in good hands.

NETs often involves multiple test to confirm details of the diagnosis and to dtermine the best treatment specific to your wife's tumor and health status. Do you know what tests she is scheduled for? Do you have any questions about what to expect?

Hello @aliatl and welcome to Mayo Connect. As you are aware, NETs is a rare type of cancer and it is certainly wise to be looking for a NET specialist. General oncologists often do not have the same level of experience in working with NET patients, so seeking out a NET specialist is so very important. Mayo would be a good place to seek a second opinion. There is a Mayo facility in Jacksonville, FL which might be convenient for you. If you would like appointment information, please look on this link, http://mayocl.in/1mtmR63.

As you are comfortable doing so, could you share a little about your wife's symptoms which led to her diagnosis?

Hi everyone
I hope everyone doing great! About a few days ago we were informed my wife has been diagnosed with Neuroendocrine Tumor. We are based in Atlanta , GA. There are not many options here as you know is a rare type. I'm worried and still haven't seen her general oncologist yet to hear what they say. They say she needs more tests. It has spread in multiple locations. They gave it number 8 and say it's not aggressive like number 20. They haven't been able to find the root. I'm thinking to move to places such as mayo or Anderson. Please advise.

Greatly appreciate
Ali

Yes i had small bowel surgery 10 days back.. currently m recovering for chemo..i lost 12 kg and now I m only 40kg .my haemoglobin, platelets are very low..my oncologist advised me for liver transplant in future and after 1 month i have to take oral chemo pills..can u all advised me some good drugs for chemo.

Thank you hopeful for this discussion. It answers many questions.

Hello @mukul123 and welcome to Mayo Connect. I see that you are looking for direction for treating your NETs. I understand you wanting to find the best treatment. Mayo Connect is a patient-to-patient support group but we are not medical professionals. If you would like to get a professional opinion from a Mayo doctor, I recommend that you contact Mayo Clinic for an appointment. Here is a link where you can get information on obtaining an appointment: http://mayocl.in/1mtmR63

If you look at some of the discussions in this group, you will see that there are now many treatments for NETs.
---PRRT, chemotherapyhttps://connect.mayoclinic.org/discussion/prrt/
--Liver Debulking
https://connect.mayoclinic.org/discussion/net-liver-debulking/
I would like to invite some Connect members who also have NETs, like @dbamos1945, @patrick031621, and @jenntx10, who have had treatments for NETs.

Have you had surgery for surgery for the NET in the small bowel? What plan of treatment are your doctors suggesting?

Hello..I am 29 yr old boy from India diagoned with net tumor in small bowel and in metastatic net tumor in 70 percent liver.but my liver works well as per LFT result..i have symptoms of gas stomach pain vomiting..face become red, breathlessness ,dizziness and weakness while walking. 1.5 cm tumor small bowel is removed by surgery and currently I m recovering..can u plz advised what will be best treatment for my liver..chemo or nuclear medicine.

Might be worth starting a new discussion to ask your question about hair regrowth and when it might start after completing treatment. I suspect it's different for everyone (as always, right?).

Sure.