1. < Neuroendocrine Tumors (NETs)

Feeling discouraged and too many specialists

Posted by phoebeghostwriter @phoebeghostwriter, Jan 19, 2022

I’m feeling so defeated tonight. While waiting for my Mayo Clinic appointment, I have continued to lose muscle mass in my arms and legs. I’m bruising easily and the night sweats are unbearable. I have a pain in stomach waking me at night and my oxygen level is dipping. My potassium level dropped and I was given potassium pills at the ER. My blood work came back with low lymphs and high hepcritin. I went to a neuroendocrinologist at Mass General today in hopes that he could at lease get the ball rolling as one of my first symptoms was high cortisol on a previous 24 urine. However I also had elevated 5HIAA back in December but my local Dr thought it wasn’t too out of range then. So I expected more from Harvard. More digging. More expertise. More action. He was only interested in my pituitary. When mentioned my other NET related symptoms he wanted to refer me to a GI doctor. I made a huge mistake. I thought even if we are not sure if it was a suspicious mircoandenoma with MRI he would at least. Run other tests. He said he is only pituitary and did nothing other than give my another urine and more of the same labs not a single NET blood test. He said Cushing takes months to diagnose. He ignored and didn’t even refer me to a NET specialist.No help. No scans. No Care. I don’t know what to do.

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

alisonn | @alisonn | Jun 25, 2023
In reply to @marwa "I hope that you had diagnosed i had the same symptoms of cushing with normal pitutary..." + (show)
@marwa

I hope that you had diagnosed i had the same symptoms of cushing with normal pitutary MRI but there was mass in lung producing ACTH it was removed and the pathology result was NET after years a recurrance happend with metastasis in lymphnodes i took sandostatin lar for a year with no result now i am taking radition
if any one has a phone no. of NET i can disscuss with him because i am from sudan .

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What did they do for treatment at Dana Farber?

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1 reply
Turkey | @tomrennie | Jun 26, 2023
In reply to @larak "Welcome to one of the world's crappiest clubs. I'm in exactly your spot. Many elevated endocrine..." + (show)
@larak

Welcome to one of the world's crappiest clubs.

I'm in exactly your spot.

Many elevated endocrine markers, hyperparathyroidism w/2 adenomas already removed & it's recurring, many elevated tumor/inflammation markers. But each specialist only deal with their tiny piece of the puzzle. Where are the multiple endocrine neoplasia teams!

I'm going to insist on PET/CT with my PCP. Not with a MEN-specific contrast, b/c I could be wrong. They could be other tumor types or fibrosis of major organs like kidney or liver. I'M NOT A DOCTOR!

I sure would like one, though.

I'll fly/drive where I can order imaging myself, if need be.

Good luck. It's rough out there.

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I didn't read anything after "Welcome to one of the world's crappiest clubs". I take offense to that. This is the world's most important club to me.

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1 reply
Lara K | @larak | Jun 26, 2023
In reply to @tomrennie "I didn't read anything after "Welcome to one of the world's crappiest clubs". I take offense..." + (show)
@tomrennie

I didn't read anything after "Welcome to one of the world's crappiest clubs". I take offense to that. This is the world's most important club to me.

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I'm sorry. I wasn't very clear. The club is "People suffering with NETs & other neuroendocrine conditions who can't get coordinated help from doctors." Or often, help at all.

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1 reply
husker1 | @husker1 | Jun 26, 2023
In reply to @larak "Welcome to one of the world's crappiest clubs. I'm in exactly your spot. Many elevated endocrine..." + (show)
@larak

Welcome to one of the world's crappiest clubs.

I'm in exactly your spot.

Many elevated endocrine markers, hyperparathyroidism w/2 adenomas already removed & it's recurring, many elevated tumor/inflammation markers. But each specialist only deal with their tiny piece of the puzzle. Where are the multiple endocrine neoplasia teams!

I'm going to insist on PET/CT with my PCP. Not with a MEN-specific contrast, b/c I could be wrong. They could be other tumor types or fibrosis of major organs like kidney or liver. I'M NOT A DOCTOR!

I sure would like one, though.

I'll fly/drive where I can order imaging myself, if need be.

Good luck. It's rough out there.

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WE share your same frustrations!! We wait two weeks for an appointment to spend 20 minutes to get told to go see another dr.

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Turkey | @tomrennie | Jun 26, 2023
In reply to @larak "I'm sorry. I wasn't very clear. The club is "People suffering with NETs & other neuroendocrine..." + (show)
@larak

I'm sorry. I wasn't very clear. The club is "People suffering with NETs & other neuroendocrine conditions who can't get coordinated help from doctors." Or often, help at all.

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Well, that doesn't describe me at all either. I guess that I need to find another group. I find it ironic that a member of my care team just called to help me with some insurance paperwork. I told her that I really appreciated her help. I asked her when was the last time a patient told her she was appreciated? She said it was the last time I told her. That was a month ago.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 26, 2023
In reply to @tomrennie "Well, that doesn't describe me at all either. I guess that I need to find another..." + (show)
@tomrennie

Well, that doesn't describe me at all either. I guess that I need to find another group. I find it ironic that a member of my care team just called to help me with some insurance paperwork. I told her that I really appreciated her help. I asked her when was the last time a patient told her she was appreciated? She said it was the last time I told her. That was a month ago.

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Please know, @tomrennie, that you are appreciated in this forum. Your willingness to share with others and offer your experience is what this group is all about.

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Lara K | @larak | Jun 26, 2023
In reply to @tomrennie "Well, that doesn't describe me at all either. I guess that I need to find another..." + (show)
@tomrennie

Well, that doesn't describe me at all either. I guess that I need to find another group. I find it ironic that a member of my care team just called to help me with some insurance paperwork. I told her that I really appreciated her help. I asked her when was the last time a patient told her she was appreciated? She said it was the last time I told her. That was a month ago.

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It's great that you are getting your care needs met.

But it's unusual. The original poster has had more of the same experiences I have had. Multiple doctors who have very specific specialities, like an endocrinologist who only looks at the pituitary gland. None of them talk to each other. As complicated patients, our needs can be more than a PCP can handle.

It's a lot sometimes.

But you are still in the right place. People talk about NETs here: their doctors, their treatments, etc.

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lastround | @lastround | Jun 26, 2023
In reply to @alisonn "What did they do for treatment at Dana Farber?" + (show)
@alisonn

What did they do for treatment at Dana Farber?

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The same week I met with the Dr at Dana Farber the first of September 2022 they started me FolFox5 every 2 weeks and an octreotide shot once a month. I had been on the octreotide since June of 2022. I had some tumors on my liver that were 10cm and after 6 months were reduced to about 4.5cm.
The only problems I had were Neuropathy in my hands and feet and a metallic taste in my mouth which made it almost impossible to eat. It seemed to get worse after the treatment ended but gradually got better.
All was well for a few months but in the last 10 weeks tumors have doubled in size and started Capecitabine pills this week.
My NET is an Insulinoma which makes my suger drop so when that started happening I had a gut feeling the tumors were growing.
Dana Farber has been great but I think Mayo is good too. I’m in the Boston area so easier for me to go there.

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1 reply
alisonn | @alisonn | Jun 26, 2023
In reply to @lastround "The same week I met with the Dr at Dana Farber the first of September 2022..." + (show)
@lastround

The same week I met with the Dr at Dana Farber the first of September 2022 they started me FolFox5 every 2 weeks and an octreotide shot once a month. I had been on the octreotide since June of 2022. I had some tumors on my liver that were 10cm and after 6 months were reduced to about 4.5cm.
The only problems I had were Neuropathy in my hands and feet and a metallic taste in my mouth which made it almost impossible to eat. It seemed to get worse after the treatment ended but gradually got better.
All was well for a few months but in the last 10 weeks tumors have doubled in size and started Capecitabine pills this week.
My NET is an Insulinoma which makes my suger drop so when that started happening I had a gut feeling the tumors were growing.
Dana Farber has been great but I think Mayo is good too. I’m in the Boston area so easier for me to go there.

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Thank you. Who do you see at Dana Farber?

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1 reply
lastround | @lastround | Jun 27, 2023
In reply to @alisonn "Thank you. Who do you see at Dana Farber?" + (show)
@alisonn

Thank you. Who do you see at Dana Farber?

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Get an appointment at DF with an NET specialist. Your GP Dr may be able to get you in there faster.
I’m a little hesitant about naming names on an open forum, but they do have a seamless process, i see several Dr’s with different specialties.

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