Anyone treated for NETs at Mayo Clinic in Jacksonville, FL

Posted by nigelvw @nigelvw, Dec 4, 2017

Is anyone here being treated at Mayo in Jacksonville FL?

Liked by titansmistress

@ronregency

How large was your NET (size in mm?). I have same issue 13x14mm

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@ronregency, Hi Ron

Thanks for sharing here on Connect and especially with @titansmistress. As you are comfortable doing so, would you share a bit about your history with this disorder: For example: How long ago was your surgery? How you are doing post-surgery? Have you had some of the same symptoms?

All of us with NETs appreciate the sharing of others with this rare disorder. I look forward to getting to know you better.

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@hopeful33250

@ronregency, Hi Ron

Thanks for sharing here on Connect and especially with @titansmistress. As you are comfortable doing so, would you share a bit about your history with this disorder: For example: How long ago was your surgery? How you are doing post-surgery? Have you had some of the same symptoms?

All of us with NETs appreciate the sharing of others with this rare disorder. I look forward to getting to know you better.

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I was officially diagnosed one week ago with a core needle biopsy. I had a colon resection for a large polyp in Oct 2018. Post surgery I had sepsis and pneumonia. During my recovery from that, I had lower right abdominal pain and had a CT. Nothing showed up in the LR abd, but there was a 3cm mass in the midline mesentery. My surgeon ordered a PET but it was denied by insurance. Meanwhile I had symptoms of IBS. Five months later, and after four attempts to get the PET, my surgeon called the medical director at the insurance company and the PET was approved. The mass lit up, leading to the core biopsy. No I wait to see the oncologist next week…

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Hello @emmiel14 and welcome to Mayo Connect,

I am pleased that your doctor was able to get approval for the PET, that helped arrive at a diagnosis. It sounds as if you have been dealing with a lot of health problems since October 2018.

Will your oncologist be making the decision on the type of treatment you will have? Does surgery seem to be the first course of action at this point?

I'm looking forward to hearing from you after your appointment next week. Will you provide an update?

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@hopeful33250

Hello @emmiel14 and welcome to Mayo Connect,

I am pleased that your doctor was able to get approval for the PET, that helped arrive at a diagnosis. It sounds as if you have been dealing with a lot of health problems since October 2018.

Will your oncologist be making the decision on the type of treatment you will have? Does surgery seem to be the first course of action at this point?

I'm looking forward to hearing from you after your appointment next week. Will you provide an update?

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My general surgeon, who got the PET approved, said it "has to come out." I am being referred to an oncologist and surgeon through the U of AZ. My problem is that I am very prone to C-diff and seem to have all of these odd side effects after procedures. I am more afraid of the surgery than the cancer. I will know more after the 27th June and keep you informed.

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@emmiel14

My general surgeon, who got the PET approved, said it "has to come out." I am being referred to an oncologist and surgeon through the U of AZ. My problem is that I am very prone to C-diff and seem to have all of these odd side effects after procedures. I am more afraid of the surgery than the cancer. I will know more after the 27th June and keep you informed.

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@emmiel14

With your history of C-Diff, I can understand your concerns about surgery. I would be sure to let the surgeon know of this problem and inquire as to what steps can be taken to avoid the problem with this surgery. (But, I'm sure you were already planning on doing this.)

I look forward to your posting after the 27th and hearing how your appointment with the surgeon went.

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@hopeful33250

I appreciate your sharing more of your health history, @patriciagsr. You certainly do have complex health problems. I'm glad to hear that you are able to go to Mayo periodically for treatment. Your doctor was wise to refer you there. It sounds like given your circumstances you are doing a lot to advocate and help yourself. I do admire that.

I am glad to hear that you are involved with speech therapy. If I may ask, how did the paralyzed vocal cord become a problem? Was it a result of the surgery or another problem? I also have a paralyzed vocal cord as well as atrophy in both cords. I had surgery to put a silastic implant in the paralyzed cord. Has this been suggested to you?

Could you share a bit more about Horner's Syndrome? When was this diagnosed and does it have to do with the surgery as well?

I'm guessing that because of your nutrition issues you may have lost a lot of weight, is that correct? How is your energy level?

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Hello @hopeful33250. My left vocal cord was paralizad after the big surgery (they told me this happens many time when they intube you for anesthesia), now it is not only paralized but has collapsed. Just had fat Inyected and they hace recommend to do what you have done in the near future. Did you have good results ? How was the surgery ? Any side effects except not able to talk for a week or so ? One of my problems is that a have so much flems and saliva that trying to eat is complicated. I end up spitting almost everything I eat but I keep doing with my therapist so my muscles get practice.
My horner’s Syndrome is also from the surgery. For that I have orofacial therapy every day and my eye is much better. Apparently this makes the side affected I your face dry and that can affect the cornea. Will still have my appointment with the specialist in August. This was also because if the surgery.

I have lost lots of weight but now I am in my limit, can’t loose more. I am changing nutritionist next week. I was on Isosource 1,5 with fiber for 5 months and it was hell for me. Continues nausea and vomits. I month ago I switched to a blend diet at home and it is much much better. I feel better and with much more energy. My diet has everything plus supplements. I do recommend that strongly, eat food not supplements.
Hope this helps 🙂

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@patriciagsr

Hello @hopeful33250. My left vocal cord was paralizad after the big surgery (they told me this happens many time when they intube you for anesthesia), now it is not only paralized but has collapsed. Just had fat Inyected and they hace recommend to do what you have done in the near future. Did you have good results ? How was the surgery ? Any side effects except not able to talk for a week or so ? One of my problems is that a have so much flems and saliva that trying to eat is complicated. I end up spitting almost everything I eat but I keep doing with my therapist so my muscles get practice.
My horner’s Syndrome is also from the surgery. For that I have orofacial therapy every day and my eye is much better. Apparently this makes the side affected I your face dry and that can affect the cornea. Will still have my appointment with the specialist in August. This was also because if the surgery.

I have lost lots of weight but now I am in my limit, can’t loose more. I am changing nutritionist next week. I was on Isosource 1,5 with fiber for 5 months and it was hell for me. Continues nausea and vomits. I month ago I switched to a blend diet at home and it is much much better. I feel better and with much more energy. My diet has everything plus supplements. I do recommend that strongly, eat food not supplements.
Hope this helps 🙂

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Hello @patriciagsr,

I appreciate your posting again. My surgery was a bit different from the one proposed for you in that the implant was not from my own body lipids but from a substance that was created for the implant. However, the surgery did work well (and still does). I was given a lot of prednisone after the surgery to keep down the swelling, inflammation, etc. and the neck area was wrapped with gauze. I talked with far less fatigue which wonderful!

I agree that a healthy diet is more important than supplements, even though supplements can be helpful at times.

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@hopeful33250

@emmiel14

With your history of C-Diff, I can understand your concerns about surgery. I would be sure to let the surgeon know of this problem and inquire as to what steps can be taken to avoid the problem with this surgery. (But, I'm sure you were already planning on doing this.)

I look forward to your posting after the 27th and hearing how your appointment with the surgeon went.

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Yesterday I saw an oncologist here in Tucson. His thought was that the primary tumor is in the small intestines but it did not show up in the PET. This matches the path report as "…consistent with primary small intestinal carcinoid tumor." He said "I can just leave it (the 3cm mesentery mass) there since it is very slow growing." I have an appointment with Dr. Chee Chee Stucky on Jul 1. Eager to see what she says….

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@emmiel14

Yesterday I saw an oncologist here in Tucson. His thought was that the primary tumor is in the small intestines but it did not show up in the PET. This matches the path report as "…consistent with primary small intestinal carcinoid tumor." He said "I can just leave it (the 3cm mesentery mass) there since it is very slow growing." I have an appointment with Dr. Chee Chee Stucky on Jul 1. Eager to see what she says….

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Hello @emmiel14

I'm so glad for the update! The wait and see approach seems to be done a lot these days for NETs as they are very slow growing. Given your history of C-Diff I'm sure that you were pleased as well.

I did a little research on Dr. Stucky and she appears to be very well-trained. Here is a link to her bio, https://www.mayoclinic.org/biographies/stucky-chee-chee-h-m-d/bio-20163956

Will you post again after your appointment on July 1? I'll be looking forward to hearing how your appointment goes. Wishing you well!

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My appt is July 11 with Dr. Stucky. I saw my general surgeon this morning and she said if I had the surgery, Dr.Stucky may feel the small intestines for a possible nodule. What happens next is a mystery. …

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@emmiel14

My appt is July 11 with Dr. Stucky. I saw my general surgeon this morning and she said if I had the surgery, Dr.Stucky may feel the small intestines for a possible nodule. What happens next is a mystery. …

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@emmiel14 My first two surgeries were invasive and I recall that the surgeon palpated the intestines to check for other tumors so that is probably the typical protocol. Thanks for correcting me on July 11. I'll look forward to hearing from you then.

Liked by amandafl

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To All Members of the NET discussion group:

For those of you living and/or visiting in Florida on July 16, I wanted to let you know about a symposium for cancer patients and their families. Here is a link with more information about, "Family First." It is available to all cancer patients and their families to learn more about the impact of a cancer diagnosis and to let you know that you are not alone. To register, or get more information, just click on the link below.
https://connect.mayoclinic.org/event/climb-at-mayo-clinic-florida-session-ii-1/?date=2019-07-16

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@titansmistress

Ive been a Pnet patient at Mayo in Jacksonville since December 2017.

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There’s a support group in Jacksonville, FL. I am not sure if you have been told about it or not yet. We meet on the first Thursday of the month at 5:30pm and there is a call in number if you cannot make it in person.

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@emmiel14

My appt is July 11 with Dr. Stucky. I saw my general surgeon this morning and she said if I had the surgery, Dr.Stucky may feel the small intestines for a possible nodule. What happens next is a mystery. …

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Hello @emmiel14,

I was thinking about you and wondering how you are doing. I hope you are feeling well. Any new developments in the treatment of the tumor or the C-Diff?

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Hi Theresa,
Thank you for reaching out. Wow. So much has happened. Dr. Stuckey did my surgery Aug 12, removing 12" of small intestine, which contained 13 grain of sand-sized NETs. Two of 22 lymph nodes were positive for mets. I had no pain at all after the surgery! No sepsis, no c-diff. Went home Aug 17. Doing okay at first, then loss of appetite and fatigue.
On Aug 28 I had doubled over severe lower abd pain and went to a Tucson ER. They air-lifted me to Mayo Phoenix, admitted for severe colitis and two abscesses. Placed on bowel rest with infused nutrients for 5 days. Two drains, on of which was removed before I came home Sept 4. I return to May this Tues for another CT, removal of drain. labs and visit with Dr. Stuckey.
It has been a very long haul! Some days are better than others & I find myself getting somewhat impatient to feel better. Everyone says my body has been through a LOT, so I believe them.
Thanks again!

Emmie14

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