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. ...
@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.
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
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.
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. ...
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?
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!
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!
I do appreciate your update. You have been through a lot since August and you do need to give yourself time to recover from the Aug. 12 surgery and Aug. 28 problems. Will you have to have any follow up treatment for the NETs (like monthly shots, etc.)?
How are you doing with eating and nutrition? Are you able to eat most foods comfortably?
Hi Theresa,
I am on a low fiber diet with Metamucil 2x/day. I'm still staying away from hard to digest foods, salads, nuts, whole wheat, tomato sauces, greasy foods, etc. I'm down 22 lbs. I don't see my oncologist until Sep 23, so will see what he recommends. I have absolutely NO clue what he will suggest, possibly a follow-up CT in a few months?
I'm tired and weak. Don't feel like doing the usual things. I really want to but my body just doesn't respond the same. I'm hoping this is a normal response, but it is getting old! I've always kept busy with lots of energy so this is really foreign to me!
Emmie
I am 77 ......energy comes in waves....some times more spoons, other times its an effort to do anything....also on no fat or low fat ...very low fibre if any , lost about 10 lbs but now stable....also diabetic with prostate cancer that has metastasized....recent shot of Lupron is causing depression to get worse....sometimes problem with gas and bloating but antacid liquid helps with that.....every day is different ....caffeine helps me but sometimes it triggers diarrhea.......I stay around my house a lot so I am near a toilet and I just put a new one in on a day with more spoons ....check " smart patients .com " and follow people with NET issues........all in all its adjusting to a new way of living and some days its laying in bed with my border collie / australian shepard watching Turner Classic movies and praying.......its not so bad and each day I thank God and pray for others too . Peace be with you.
I am 77 ......energy comes in waves....some times more spoons, other times its an effort to do anything....also on no fat or low fat ...very low fibre if any , lost about 10 lbs but now stable....also diabetic with prostate cancer that has metastasized....recent shot of Lupron is causing depression to get worse....sometimes problem with gas and bloating but antacid liquid helps with that.....every day is different ....caffeine helps me but sometimes it triggers diarrhea.......I stay around my house a lot so I am near a toilet and I just put a new one in on a day with more spoons ....check " smart patients .com " and follow people with NET issues........all in all its adjusting to a new way of living and some days its laying in bed with my border collie / australian shepard watching Turner Classic movies and praying.......its not so bad and each day I thank God and pray for others too . Peace be with you.
had portion of small bowel removed here in north carolina but , NET are still in my body.....prostate cancer was removed at Mission hospital in Asheville N.C. and further treated at Proton institute in Jax Fl a couple of years ago and again last year , both cancers being treated, prostate with Lupron and NET is being monitored with blood work , both by same doctor here ......never treated at MAYO , yet ! One day at a time.
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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.
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1 ReactionTo 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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1 ReactionThere’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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1 ReactionHello @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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1 ReactionHi 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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2 Reactions@emmiel14 Hi Emmie
I do appreciate your update. You have been through a lot since August and you do need to give yourself time to recover from the Aug. 12 surgery and Aug. 28 problems. Will you have to have any follow up treatment for the NETs (like monthly shots, etc.)?
How are you doing with eating and nutrition? Are you able to eat most foods comfortably?
Hi Theresa,
I am on a low fiber diet with Metamucil 2x/day. I'm still staying away from hard to digest foods, salads, nuts, whole wheat, tomato sauces, greasy foods, etc. I'm down 22 lbs. I don't see my oncologist until Sep 23, so will see what he recommends. I have absolutely NO clue what he will suggest, possibly a follow-up CT in a few months?
I'm tired and weak. Don't feel like doing the usual things. I really want to but my body just doesn't respond the same. I'm hoping this is a normal response, but it is getting old! I've always kept busy with lots of energy so this is really foreign to me!
Emmie
-
Like -
Helpful -
Hug
1 ReactionI am 77 ......energy comes in waves....some times more spoons, other times its an effort to do anything....also on no fat or low fat ...very low fibre if any , lost about 10 lbs but now stable....also diabetic with prostate cancer that has metastasized....recent shot of Lupron is causing depression to get worse....sometimes problem with gas and bloating but antacid liquid helps with that.....every day is different ....caffeine helps me but sometimes it triggers diarrhea.......I stay around my house a lot so I am near a toilet and I just put a new one in on a day with more spoons ....check " smart patients .com " and follow people with NET issues........all in all its adjusting to a new way of living and some days its laying in bed with my border collie / australian shepard watching Turner Classic movies and praying.......its not so bad and each day I thank God and pray for others too . Peace be with you.
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2 Reactions@alphanumeric, welcome to Connect. You may also be interested in following the Prostate Cancer group here: https://connect.mayoclinic.org/group/prostate-cancer/
Do you have NETs of the prostate gland or do you have 2 cancers: prostate cancer and a NETs tumor elsewhere?
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1 Reactionhad portion of small bowel removed here in north carolina but , NET are still in my body.....prostate cancer was removed at Mission hospital in Asheville N.C. and further treated at Proton institute in Jax Fl a couple of years ago and again last year , both cancers being treated, prostate with Lupron and NET is being monitored with blood work , both by same doctor here ......never treated at MAYO , yet ! One day at a time.
-
Like -
Helpful -
Hug
3 Reactions