1. < Neuroendocrine Tumors (NETs)

High risk surgery. Is it worth it?

Posted by ant12 @ant12, Mar 7 9:15pm

I had my primary net removed, along with a right hemicolectomy, three other mets and 23 lymph nodes in Sept 2023.
A follow up Petscan in January revealed that I have one left, which is about the size of a golf ball in the triangle of the mesentary.
It’s lodged next to my pancreas and is distorting my superior mesenteric vein.
I have elevated levels of seratonin and till recently chronic diarrhoea.
I have moderate high blood pressure that I’m taking medication for and general weakness and tiredness. I’m hoping to get the Net removed and have had a consultation yesterday with a pancreatic surgeon. He has advised that the location of the net is in a very difficult place and a high risk of damage to the mesenteric vein.
Surgery will be open, rather than by scope as he needs to be able to see it before he can determine if it can be removed.
I was due to start lanreotide injections but have delayed it waiting for this consult.
I have advised him I would like it removed if possible.
Am I being unrealistic ?
I don’t have disabilitating symptoms and the injections could control it for a few years. It’s slow growing but is already distorting my vein and arteries in the mesentery.
I’m 63 and otherwise well.
Should I take the risk now?
If I wait 2 or 3 years and am over 65 and weakened by age and tumour will I wish I had done it now.
I have told the surgeon that if he opens me and if he can’t safely remove it to close me back up.
I asked if he could debulk it the take the injections.?
He didn’t like the idea of leaving parts of the tumour intact.
Dotate and Dfg pet scans do not show other nets but it was in five of the 23 lymph nodes that had been removed with my ascending bowel.
The surgeon was having a bad busy day with some serious cancer cases presenting before me. So he didn’t seem to keen to deal with my minor tumour in high risk surgery.
What would you do ?

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 18 6:51am
In reply to @ant12 "Update Booked in for operation on the 22/03/24 Open surgery to remove tumour lodged between superior..." + (show)
@ant12

Update
Booked in for operation on the 22/03/24
Open surgery to remove tumour lodged between superior mesmeric artery and vein.
I have a very experienced surgeon who specialises in pancreatic cancers who will try to remove the golf ball sized net
Hope I’ll be able to update this after.

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Hello @ant12,

I am so glad to hear that you have an experienced surgeon, that means a great deal, doesn't it.

I look forward to your update after you recover from your surgery. Have you been given a timeline as to how long you will be hospitalized after surgery?

REPLY
1 reply
ant12 | @ant12 | Mar 18 11:40am
In reply to @hopeful33250 "Hello @ant12, I am so glad to hear that you have an experienced surgeon, that means..." + (show)
@hopeful33250

Hello @ant12,

I am so glad to hear that you have an experienced surgeon, that means a great deal, doesn't it.

I look forward to your update after you recover from your surgery. Have you been given a timeline as to how long you will be hospitalized after surgery?

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Five nights. Six weeks recovery.
Last time was six nights and I was active after two. lol
Positive thoughts
Thank you

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 18 2:03pm
In reply to @ant12 "Five nights. Six weeks recovery. Last time was six nights and I was active after two...." + (show)
@ant12

Five nights. Six weeks recovery.
Last time was six nights and I was active after two. lol
Positive thoughts
Thank you

Jump to this post

Many positive thoughts coming to you, @ant12!

REPLY
ant12 | @ant12 | Mar 27 1:39am

Surgery performed last Friday. A 30 cm scar from below left chest to belly button
Surgeon was able to remove a 4cm Net and 2 positive lymph nodes that were distorting my mesmeric vein
I left hospital on Monday and whilst sore am functioning well.
So far that’s 7 lymph nodes, the primary and 4 Mets that are floating around.
Unfortunately a ECG before the op has indicated a bundle branch blockage has developed in my right ventricle and I’ll be seeking treatment for that. Apparently quite common with Nets for the seratonin to affect the right side of the heart.
I’ll be also going onto Lanreotide to control other as yet undiscovered Mets as they grow.
Won this battle but the war is ongoing.

REPLY
3 replies
pavlina60 | @pavlina60 | Mar 28 3:56pm
In reply to @ant12 "Surgery performed last Friday. A 30 cm scar from below left chest to belly button Surgeon..." + (show)
@ant12

Surgery performed last Friday. A 30 cm scar from below left chest to belly button
Surgeon was able to remove a 4cm Net and 2 positive lymph nodes that were distorting my mesmeric vein
I left hospital on Monday and whilst sore am functioning well.
So far that’s 7 lymph nodes, the primary and 4 Mets that are floating around.
Unfortunately a ECG before the op has indicated a bundle branch blockage has developed in my right ventricle and I’ll be seeking treatment for that. Apparently quite common with Nets for the seratonin to affect the right side of the heart.
I’ll be also going onto Lanreotide to control other as yet undiscovered Mets as they grow.
Won this battle but the war is ongoing.

Jump to this post

Excellent! Good luck with the treatment! Keep up your faith and think positive!💜🦓

REPLY
pavlina60 | @pavlina60 | Mar 28 6:23pm
In reply to @ant12 "Surgery performed last Friday. A 30 cm scar from below left chest to belly button Surgeon..." + (show)
@ant12

Surgery performed last Friday. A 30 cm scar from below left chest to belly button
Surgeon was able to remove a 4cm Net and 2 positive lymph nodes that were distorting my mesmeric vein
I left hospital on Monday and whilst sore am functioning well.
So far that’s 7 lymph nodes, the primary and 4 Mets that are floating around.
Unfortunately a ECG before the op has indicated a bundle branch blockage has developed in my right ventricle and I’ll be seeking treatment for that. Apparently quite common with Nets for the seratonin to affect the right side of the heart.
I’ll be also going onto Lanreotide to control other as yet undiscovered Mets as they grow.
Won this battle but the war is ongoing.

Jump to this post

May you have more battles won!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 29 8:04am
In reply to @ant12 "Surgery performed last Friday. A 30 cm scar from below left chest to belly button Surgeon..." + (show)
@ant12

Surgery performed last Friday. A 30 cm scar from below left chest to belly button
Surgeon was able to remove a 4cm Net and 2 positive lymph nodes that were distorting my mesmeric vein
I left hospital on Monday and whilst sore am functioning well.
So far that’s 7 lymph nodes, the primary and 4 Mets that are floating around.
Unfortunately a ECG before the op has indicated a bundle branch blockage has developed in my right ventricle and I’ll be seeking treatment for that. Apparently quite common with Nets for the seratonin to affect the right side of the heart.
I’ll be also going onto Lanreotide to control other as yet undiscovered Mets as they grow.
Won this battle but the war is ongoing.

Jump to this post

@ant12
I'm glad to hear that surgery is behind you and went well. I understand about winning the battle but continuing the war. it does feel like that way!

I also have a left bundle branch block which is somewhat different than the right bundle branch block. I think that the right side of the heart is affected more by NETs. I'll be interested in hearing how that appointment goes. Will you be seeing a cardiologist who specializes in cancer patients?

REPLY
1 reply
ant12 | @ant12 | Mar 29 9:02am
In reply to @hopeful33250 "@ant12 I'm glad to hear that surgery is behind you and went well. I understand about..." + (show)
@hopeful33250

@ant12
I'm glad to hear that surgery is behind you and went well. I understand about winning the battle but continuing the war. it does feel like that way!

I also have a left bundle branch block which is somewhat different than the right bundle branch block. I think that the right side of the heart is affected more by NETs. I'll be interested in hearing how that appointment goes. Will you be seeing a cardiologist who specializes in cancer patients?

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Yes I have a consult with my Oncologist next month to get a referral to a cardiologist with net experience.
I’ll also speak with him about chemotherapy to target the nets in the lymph
How does the blockage affect you. ?

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 29 9:18pm
In reply to @ant12 "Yes I have a consult with my Oncologist next month to get a referral to a..." + (show)
@ant12

Yes I have a consult with my Oncologist next month to get a referral to a cardiologist with net experience.
I’ll also speak with him about chemotherapy to target the nets in the lymph
How does the blockage affect you. ?

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The left bundle branch block (LBBB) has not been a significant issue for me. I've had it for at least 20 years. The idea of it was really frightening when I was first diagnosed. I do have some "electrical" problems with my heart the LBBB makes it difficult to trust the results of an EKG, but I'm doing OK. I hope you get a good report from your cardiologist.

Have you had other heart problems in the past?

REPLY
1 reply
ant12 | @ant12 | Mar 29 11:38pm
In reply to @hopeful33250 "The left bundle branch block (LBBB) has not been a significant issue for me. I've had..." + (show)
@hopeful33250

The left bundle branch block (LBBB) has not been a significant issue for me. I've had it for at least 20 years. The idea of it was really frightening when I was first diagnosed. I do have some "electrical" problems with my heart the LBBB makes it difficult to trust the results of an EKG, but I'm doing OK. I hope you get a good report from your cardiologist.

Have you had other heart problems in the past?

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My mother has Parkinson’s
She has been very slowly fading for 20 years now. In a nursing home in her 80s. Sometimes I think she will outlive me. It’s an insidious condition
I have other heart issues
A stent to the LAD fitted in 2021 96% blockage. No symptoms except minor angina pain in left arm.
I’m on statins and beta blockers and two blood pressure meds.
I’m hoping that it’s related to the Nets and now I’ve got rid of the big ones I might be able to reduce the meds. . I’ve been quite active the last few years
I climbed up to base camp at Everest early 2020 and I’ve done a number of long distance hikes, so I don’t feel I could be accused of being inactive.

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