1. < Neuroendocrine Tumors (NETs)
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NET

Posted by michaela258 @michaela258, 5 days ago

Hello everyone,

About four months ago, I was diagnosed with a 1.5 cm neuroendocrine tumor in the head of my pancreas. I had a PET/CT scan, which is how the tumor was diagnosed. For now, my doctors have decided to monitor it rather than treat it. I will have an MRI or CT scan every six months. They explained that, in some people, this type of tumor can remain stable for many years without growing or spreading, so they don’t recommend surgery or any other treatment at this point.

I did not have a biopsy. The only tests I had were blood tests, a urine test, and the PET/CT scan, based on which they decided on this management plan.

My question is whether anyone else has had a similar experience. Has anyone else been advised to simply monitor a neuroendocrine tumor like this? What are your experiences and opinions? I would really appreciate hearing from anyone who has gone through something similar.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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Turkey, Volunteer Mentor | @tomrennie | 1 day ago
In reply to @rdebeer "@tomrennie Hi Tom, Thanks for your good wishes. I live in Las Cruces, NM and there..." + (show)
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@tomrennie
Hi Tom, Thanks for your good wishes. I live in Las Cruces, NM and there is a good reason why NM is ranked dead last of the lower 48 for health care. First I saw two Oncologists who wouldn't even see me for about six weeks and I fired them both since my buddy who had Pancreatic Cancer was dead in four months. Here there is no sense of urgency. After that I saw a Surgical Specialist in El Paso, TX (45 miles away), who insisted upon a biopsy, which I had done by the Department Head at Texas Tech University Hospital, who didn't get a large enough sample to for the biopsy. I only went back for the second biopsy at the urging of my Surgeon and they screwed it up again and couldn't seem to find anything to test.
There are no NET Specialists in the entire State of NM, so I may have to drive 400 miles to Phoenix to see someone at Mayo Clinic. Even the PET Scan which was done a couple of times was read incorrectly the first time and a year later the 13 cm tumor was discovered after going back and checking the one year old scan. Up until now, (two years and nine months) it has been just good luck that the original tumor hasn't grown, but now bad luck that a new tumor has been discovered and has grown by 8 cm. I still haven't got the biopsy scheduled, but at least the new guy doing the biopsy has assured me that there will be a Pathologist present and will analyse the sample on the spot. Not sure what I can or will do if it turns out Malignant since my Surgeon says I am not a candidate for (Whipple Procedure?) surgery. I turn 82 years old this month. I suppose it is always worth a trip over to Mayo for a second opinion and to maybe slow down the growth.
Regards, Rick

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@rdebeer Here is a link to initiate an appointment with Mayo:
http://mayocl.in/1mtmR63
I get treated at Mayo in Phoenix for my stage 4 pnet that has spread to my liver and bones. I was diagnosed in 8/22. A NET specialist will help you get the right tests/scans to accurately diagnose and treat your cancer. Most oncologists don't have experience with this rare type of cancer. That's just reality. Because of the expertise of the Mayo team, it could take a little time to be seen. They are in high demand. I suggest completing the requested information sooner rather than later. How are you feeling overall?

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lindanet2024 | @lindanet2024 | 1 day ago
In reply to @maeve115 "@lindanet2024 Lindanet Unfortunately, having NETs downplayed and/or under diagnosed/misdiagnosed has happened to many of us including..." + (show)
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@lindanet2024
Lindanet
Unfortunately, having NETs downplayed and/or under diagnosed/misdiagnosed has happened to many of us including myself. We are learning self advocating and finding the right resources for correct diagnosis and treatment. I am sorry you are also going through the situation where you need to find a NET specialist with a tumor board team that can best help you. We are no longer alone and are reciprocally helping each other. I like that you listened to your feeling about your Doctor's and that you are optimistic. NETS at stage four is not like other cancers.. one can live many years creating a good life.. (((( Lindanet))))

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@maeve115
Oh, how comforting to feel supported! It's so tiring hearing "listen to the doctors, they're the experts!"
I just spent 3 days in the hospital for a severe cough, SOB and pneumonia-like symptoms ("not related to NET") & put on antibiotics and steroids. Tomorrow in for a broncoscopy to get rid of infection. Don't know what to believe anymore!
Thanks so much for your input; it really means a lot to me. Xxx

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maeve115 | @maeve115 | 1 day ago
In reply to @tomrennie "@rdebeer Here is a link to initiate an appointment with Mayo: http://mayocl.in/1mtmR63 I get treated at..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@rdebeer Here is a link to initiate an appointment with Mayo:
http://mayocl.in/1mtmR63
I get treated at Mayo in Phoenix for my stage 4 pnet that has spread to my liver and bones. I was diagnosed in 8/22. A NET specialist will help you get the right tests/scans to accurately diagnose and treat your cancer. Most oncologists don't have experience with this rare type of cancer. That's just reality. Because of the expertise of the Mayo team, it could take a little time to be seen. They are in high demand. I suggest completing the requested information sooner rather than later. How are you feeling overall?

Jump to this post

@tomrennie
Turkey, I am not sure this is correct but I was told that getting a referral from my local Doctor and me following up directly to the Mayo Clinic Doctor whom I wanted to see, might get me an appointment sooner. I did not need a referral but my local oncologist made the referral and I phoned afterward. Perhaps it helped.

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maeve115 | @maeve115 | 1 day ago
In reply to @lindanet2024 "@maeve115 Oh, how comforting to feel supported! It's so tiring hearing "listen to the doctors, they're..." + (show)
Profile picture for lindanet2024 @lindanet2024

@maeve115
Oh, how comforting to feel supported! It's so tiring hearing "listen to the doctors, they're the experts!"
I just spent 3 days in the hospital for a severe cough, SOB and pneumonia-like symptoms ("not related to NET") & put on antibiotics and steroids. Tomorrow in for a broncoscopy to get rid of infection. Don't know what to believe anymore!
Thanks so much for your input; it really means a lot to me. Xxx

Jump to this post

@lindanet2024
When it comes to NETs the information on what to look for and how to treat is often not available locally as it needs to be. I am fortunate that I have a Primary whom I trust to do the best by me, but she was stumped by my symptoms and could not find a specialist who figured it out. One of the things I have learned is that my trust in local Doctors for treatment has increased as I have become more aware of how I need to learn and decipher and be able to record and describe my symptoms. . I also need to bring a buddy with me to appointments to help. My process with deciphering NETs has helped me with other Doctors. I had become so weary and wary of medical situations. It seems that dealing with NETS and comorbids is a full time education and job and it understandable that trust levels are low.. Glad we Netters have each other.

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Mentor
Turkey, Volunteer Mentor | @tomrennie | 1 day ago
In reply to @maeve115 "@tomrennie Turkey, I am not sure this is correct but I was told that getting a..." + (show)
Profile picture for maeve115 @maeve115

@tomrennie
Turkey, I am not sure this is correct but I was told that getting a referral from my local Doctor and me following up directly to the Mayo Clinic Doctor whom I wanted to see, might get me an appointment sooner. I did not need a referral but my local oncologist made the referral and I phoned afterward. Perhaps it helped.

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@maeve115 In my experience, the most efficient way to be seen by Mayo is to follow the online instructions. I am unaware of anyone that successfully expedited the process by doing anything else. Going outside the recommended online instructions has only seemed to slow things down.

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maeve115 | @maeve115 | 1 day ago

Thank You Turkey
I am glad I asked you for your understanding.... and appreciate it.. LOTS.
I trust your experience and expertise for myself and those who may be reading this.

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lindabees | @lindabees | 1 hour ago
In reply to @tomrennie "@maeve115 In my experience, the most efficient way to be seen by Mayo is to follow..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@maeve115 In my experience, the most efficient way to be seen by Mayo is to follow the online instructions. I am unaware of anyone that successfully expedited the process by doing anything else. Going outside the recommended online instructions has only seemed to slow things down.

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@maeve2016
@tomrennie is correct. My husband did not need a referral to Mayo. He simply filled out the online appointment request, specified the doctor by name whom he wanted to see and had a call back within 24 hours to get the ball rolling. He had an appointment within a couple of weeks (if even that)

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