Pituitary and pNET: Can't do the things I love anymore

Posted by sturns @sturns, Jun 12, 2022

I had 2 pituitary tumor surgeries 1999 & 2000. In doing so they had to take the pituitary gland out. Now I have Pnet. How will this affect any outcomes or symptoms, ect…? I was diagnosed with Pnet a year ago. Any help will be appreciated. I can't do the things I love anymore. thank you, Anthony

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

I mean I can no longer do the things I love anymore… and the pain is off the scale.

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@sturns

I mean I can no longer do the things I love anymore… and the pain is off the scale.

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Hi @sturns, welcome to the NETs group. Is that I picture of you surfing?

The abbreviation PNET is sometimes used for primitive neuroectodermal tumor and others use it to refer to pancreatic neuroendocrine tumors (pNET). Can you confirm what type of tumor you have so I can connect with others? What treatment are you currently having for pNET and to manage pain?

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Hello, Anthony (@sturns). I would like to join Colleen (@colleenyoung) in welcoming you to Connect. It sounds like you are dealing with a lot of changes as a result of the surgeries and removal of the pituitary gland as well as the PNET diagnosis.

As Colleen asked I'm also wondering what you mean by PNET. Is your neuroendocrine tumor in your pancreas? I hope you post again and let us know more so that we can connect you with others on Connect who might be able to share their experiences with you.

You indicate that you cannot do what you used to love and that your pain is terrible. Is your oncologist offering you any help with these issues?

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@hopeful33250

Hello, Anthony (@sturns). I would like to join Colleen (@colleenyoung) in welcoming you to Connect. It sounds like you are dealing with a lot of changes as a result of the surgeries and removal of the pituitary gland as well as the PNET diagnosis.

As Colleen asked I'm also wondering what you mean by PNET. Is your neuroendocrine tumor in your pancreas? I hope you post again and let us know more so that we can connect you with others on Connect who might be able to share their experiences with you.

You indicate that you cannot do what you used to love and that your pain is terrible. Is your oncologist offering you any help with these issues?

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Yes the oncologist sent me to palliative care but I really hate pain pills. They just make life manageable. The dr's I have are really good but I have 23 tumors in my liver, all over the lymph glands, on the end of the pancreas and more. The pain is when my ab's get distended they sent pain in the liver region and then my back even across. The pain just comes out from left field and it is bad, to your knees bad. Thank you for listening, I'll get through it.

Anthony F

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@sturns

Yes the oncologist sent me to palliative care but I really hate pain pills. They just make life manageable. The dr's I have are really good but I have 23 tumors in my liver, all over the lymph glands, on the end of the pancreas and more. The pain is when my ab's get distended they sent pain in the liver region and then my back even across. The pain just comes out from left field and it is bad, to your knees bad. Thank you for listening, I'll get through it.

Anthony F

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I am sorry to hear of your pain, @sturns. I understand what you mean about taking pain pills, but I'm glad that they make life manageable.

Do you have a support system of family and friends nearby?

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@colleenyoung

Hi @sturns, welcome to the NETs group. Is that I picture of you surfing?

The abbreviation PNET is sometimes used for primitive neuroectodermal tumor and others use it to refer to pancreatic neuroendocrine tumors (pNET). Can you confirm what type of tumor you have so I can connect with others? What treatment are you currently having for pNET and to manage pain?

Jump to this post

Thank you, yes that is me and my passion that the pain keeps me from. I have pNET. Thank you for informing me about the difference. I get sandostation (sp), once a month and am going through a procedure now, it's Embolization with TACE, it is three runs, I just went through part 1 of three. The Dr. decided to make it three parts instead of one and the pain I felt for 7-10 days was off the scale. Great Doctor and procedure went well. The stomach distention is much less now . 23 tumors in liver and around the same through out the general area. the tumors are all stable and not growing which is good, I'm hoping the pain will lessen also. I do not do well with pain meds. Thank you for your reply.
Anthony

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@hopeful33250

I am sorry to hear of your pain, @sturns. I understand what you mean about taking pain pills, but I'm glad that they make life manageable.

Do you have a support system of family and friends nearby?

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I do have my wife in which I wouldn't function without as well as being my best friend. Outside of that I have no support group. I moved many years ago from my hometown. Thank you for the reply.
Anthony

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@sturns

Thank you, yes that is me and my passion that the pain keeps me from. I have pNET. Thank you for informing me about the difference. I get sandostation (sp), once a month and am going through a procedure now, it's Embolization with TACE, it is three runs, I just went through part 1 of three. The Dr. decided to make it three parts instead of one and the pain I felt for 7-10 days was off the scale. Great Doctor and procedure went well. The stomach distention is much less now . 23 tumors in liver and around the same through out the general area. the tumors are all stable and not growing which is good, I'm hoping the pain will lessen also. I do not do well with pain meds. Thank you for your reply.
Anthony

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Hello again @sturns

I appreciate the update. I'm glad to hear that the first treatment helped.

How often will you have the treatments?

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@hopeful33250

Hello, Anthony (@sturns). I would like to join Colleen (@colleenyoung) in welcoming you to Connect. It sounds like you are dealing with a lot of changes as a result of the surgeries and removal of the pituitary gland as well as the PNET diagnosis.

As Colleen asked I'm also wondering what you mean by PNET. Is your neuroendocrine tumor in your pancreas? I hope you post again and let us know more so that we can connect you with others on Connect who might be able to share their experiences with you.

You indicate that you cannot do what you used to love and that your pain is terrible. Is your oncologist offering you any help with these issues?

Jump to this post

Hi,
My oncologist has sent me to palliative care and they are helping but nothing tried is taking all the pain away, i'm a 5-6 at times and mostly 7-8 and it spikes up to 9 and thats with meds. I just have to learn to live with a certain amount of pain, and that ok, they have helped and have been very good to me. I have pancreatic neuroendocrine cancer/tumors.
Thanks, Anthony

REPLY
@sturns

Thank you, yes that is me and my passion that the pain keeps me from. I have pNET. Thank you for informing me about the difference. I get sandostation (sp), once a month and am going through a procedure now, it's Embolization with TACE, it is three runs, I just went through part 1 of three. The Dr. decided to make it three parts instead of one and the pain I felt for 7-10 days was off the scale. Great Doctor and procedure went well. The stomach distention is much less now . 23 tumors in liver and around the same through out the general area. the tumors are all stable and not growing which is good, I'm hoping the pain will lessen also. I do not do well with pain meds. Thank you for your reply.
Anthony

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Your mention of TACE reminds me from a discussion on Mayo Clinic Connect from several years ago that was so helpful for a member choosing between TACE and SirSpheres.

– Have you had TACE or SirSpheres radiation treatment? Please share https://connect.mayoclinic.org/discussion/does-anyone-have-experience-with-receiving-tace-or-sirspheres-which-are-2/

It was such a useful discussion where 2 members shared in-depth information about each procedure to help with decision-making. It's such rich first-hand experience information that one can't get from a brochure.

How has your experience been with transarterial chemoembolization (TACE)?

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