Welcome to the NETs Group! Come say hi.

@hollywood817- Wow... you are going through a lot. Have you by chance had genetic testing done for hemochromatosis? In 2013, I landed in the emergency room; actually felt like I was dying. They thought I had a blood clot because the test for that came back positive. Chest CT showed no clot. However, the GI specialist I was sent to b/c of high liver enzymes had the presence of mind to do the genetic test for hemochromatosis. My ferritin, too, was astronomical. I have the two C282Y gene alleles. Had a hysterectomy in 2006 and the ferritin had been climbing since then. Eight weeks of phlebotomy to bring it down. I have taken a calcium with high iron meals and have not had to have phlebotomy since, although I might need one in the next couple of months. I have relaxed my diet too much.

While all of this was going on, they discovered a "hemangioma" on my liver and an adrenal "adenoma," which has been monitored yearly ever since. In 2018, a CT showed a mass in my bladder; was incorrectly diagnosed with high grade bladder cancer. Mass was removed; thank God it wasn't a secreting tumor. Went through induction BCG, became septic from the treatment and was told I couldn't have anymore treatment. I made myself an appointment at John's Hopkins, had my tumor slides and urine sample sent to them. Lo and behold, it was NOT bladder cancer but a paraganglioma. Hot mess!

I have had cystoscopies yearly since then, all negative. CTs yearly as well. I did have a PET after correct diagnosis, which was negative except for something diagnosed as a "probable reactive lymph node." The hemangioma seems to have disappeared after all of these years and the adrenal adenoma is unchanged. That is the extent and end of my surveillance, other than yearly AFP blood test and liver ultrasounds to monitor from the hemochromatosis. I did convince my urologist to do a PET instead of another CT, which is scheduled for 1/24. I am greatly concerned about the amount of radiation I have had.

I am single, without family, and traveling to one of these wonderful out-of-state facilities is just not an option for me. I would love to have a physician here in Gloucester, Virginia (or near) who could monitor with blood tests, etc., and go out of state only if absolutely unavoidable.

I'm counting on a clear PET... for you and me both! We've got this! Be well!

new here. was just diagnosed with LiverNET. My symptoms were fatigue and diarrhea. Had an ultrasound, then a cat scan and finally a biopsy which confirmed the pots on my liver were cancerous. My PCP was very assertive to get the ultrasound as the original diagnosis to my symptoms was that my body was absorbing iron (also had a ferretin count 3x target). So I donated blood a few times but she was worried the increased iron could impact my organs and scheduled the ultra sound. My next steps:
1. Have a PET scan to find the source of the liver cancer (neck to toes)
2. Have an echocardiogram to see if the cancer has thickened the walls of my aorta (while not a common occurrence, it does happen)
3. Start the monthly injections (PRRT)
I'm feeling positive and hopeful and just started reading these posts. The support here is wonderful and I have a lot to learn. Any insight from people who have already gone through this process is more than welcome. We are scheduling to have #1 and #2 completed by the end of this month. Thanks

Hello @aliatl,

If you would like to consult with a Mayo NET specialist, please use this link to schedule an appointment, http://mayocl.in/1mtmR63. It is not necessary to ask for a particular doctor, as Mayo will find the best physician for you to see. As there are three campuses at Mayo, you can pick the one that is most convenient for you.

How are you dealing with all of this new information?

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?