Well hey there guys; Long time no blog. Bet you were wondering what was going on. So here it is……
I’m still breathing.
Went and saw a Carcinoid Cancer Specialist in New Orelans. He sent the extra liver tissue from my biopsy off for some super duper testing. Got back the results and it is declaring that there is a 96% probability that my primary is in my mid gut. Hooray for known primary!! So there is a game plan. Before I get into it please know that I want to know all the questions and concerns you have, ask them. Even if you think it’s dumb or I have answered it before ask it anyway. It helps me so much when things are asked because I get to view from different points and helps me to process differently and think of things I need to address.
The Game Plan
Remove primary cancer located in mid gut
Remove a section of small intestines
Remove a section of large intestines
Remove all lympnodies
Remove gallbladder
Remove current tumors in liver and applying chemo
Exploratory on remaining intestines, appendix, rectum and pancreas.
Doing all in one kick ass surgery. And I’m going to have one bitchin scar.
Ok, you can close your mouth and take a deep breath now.
Now here is the breakdown for you.
They are removing the intestine sections because of where the primary is located it is filtering the cancer cells in high amounts through everything that is directly near it.
The lympnodies are going because those are the primary filters of the cancer cells. Will be sent off for testing.
I wasn’t really using my gallbladder anyway and besides, the injections that I do monthly cause gallstones. So its removal is to avoid more mumbo jumbo.
My liver is going to go through debulking of tumors as long as my body will allow the doctor to debulk. With the removing of these tumors I can go into carcinoid crisis and my heart can give out so they have to remove them very cautiously. If I go into crisis they will stop and the remaining tumors will have direct chemo therapy applied with a cotton swab. All the removed tumors will be sent off for testing.
Every 2 out of 100 patients have issues after the surgery with drainage. In the event that this happens they would either go back in and repair or insert a drainage tube until leakage stops.
I will be in ICU for 2 days, the hospital for 5-6 days and then staying in the American Cancer Hope Lodge until I can go home. The surgery is scheduled for November 20th. I have pre-op November 19th. I will be in New Orleans November 18th – December 4th. For the most part we have figured out who will be helping Chris with the boys for those 2 weeks and still finalizing who is going with me as care givers. Still need someone to be there for the initial surgery; Nov 19th – 26th. (Either 1 person all days or multiple people covering the days).
I don’t know what could be more fun; this surgery or a trip to Disney. Such a close call.
Everything will come together if it is God’s will. But praying that a money tree grows in our living room over night can’t really hurt.
Or can it………….
Neuroendocrine Life 
You are a strong woman Mandi I love you so very much.
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Thank you for sharing this and posting!
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Good luck with your treatment ☺
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I had the same surgery in a different hospital over two years ago. The problem was that even though they searched hard, they could not find the primary, so they did not remove any intestines. The liver and gall bladder part was successful. The day after the surgery until now, I have felt better than I felt in 3 years before the surgery. May you have even better results!
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You’ll be in my prayers. I had surgery there 5 yrs. ago…Dr. BBo
Boudreux. All went well. Only comment would be I am about
100 lbs. overweight and have problems with my breathing
(Pulmonary fibrosis). That being said the decision was made
to use glue instead of sutures or staples and to wear a very tight
surgical corset. For me with my situation I would not
chose that now, it was painful and uncomfortable.
🙏🏼
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I had the same surgery without removing the gall bladder. Hind site is always 2020. Anyways everything went well. I really liked the morphin pump. No pain at all the entire recovery. Up and walking 24 hours after surgery. They could of flicked my nostrils and I wouldn’t of cared. 6 days in the hospital. 10 feet of intestine, half the colon, appendix, 52 lymphs removed, 9 positive and a whole lot of baby noids removed. Digestion will be crazy for awhile. Mine has improved a lot over the past 7 months. Feel better than I did 5 years ago. No regrets. 4-2015. Many thoughts and prayers your way. PS- I will be seeing Dr. Woltering same week.
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Good luck with surgery Mandy. I hope you get the money tree too.💵 🌳
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Just had the exact same surgery with Dr. Boudreax. All went well and I went home after 4 days in hospital. Good luck to you! Will be going back down to see Dr. Woltering for final pathology results in 3 weeks.
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I had the same surgery, 3 years ago this month, same place, almost exact things. Although it wasn’t easy, I was in great hands and the doctors were all amazing. The thing I resisted at first, was what helped me feel better much more quickly and that was getting up and walking…as soon as you can. The more I walked my room, the hallways and the hospital, the better I felt and I got out sooner than expected. I wish you all the best! You are in great hands.
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My son had the same surgery eight years ago same hospital same Doctor’s the primary in small gut took out 26 inches it had metastases to the liver they took out a huge tumor off the liver then six mouth’s later they went back in and nearly took all his liver out he did good worked his job and all the over time he could and did ever thing right he eat right and exercise had a wife and three daughter’s 7&20 and 25 he turned 50 in Oct passed away Nov 15th 2014,he got infection and had liver failure so hard to except that…that was what took him out, Pray all go’s well for you.
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I had surgery in Birmingham Alabama in 2009. I actually had six surgeries in a eight month span. First four months of that year I was misdiagnosed and treated with high dosage of steroids and several other types of drugs and gall bladder surgery. My situation was growing worse. After the fourth month I was sent to Birmingham. My body was torn down from daily nausea, pain and diarrhea. Mentally I was losing it. They discovered a blockage and the decision was made to do a intestinal resection. My cancer was found during the surgery. They removed part of my small and large intestine. Surgery went well and I was told I was on my way to recovering. The hospital stay would only be a week. Day four the diarrhea started again. The doctors ran more test and discovered I was leaking out. I was taken back into surgery, and I had developed fistulas. They clean me up the best that they could, but could not close me back up. From there I developed a domino effect of everything going wrong. I spent about a year in the hospital and had numerous surgeries. I still suffer from the devastating events that took place that year. I know that the steroids played a big part of the problems with the surgery. Hindsight would be a longer waiting time between the steroids being stopped and the resection surgery. Saying all of this, there is more knowledge today about the carcinoid cancer then when I took sick. You knowing what you are facing helps you and your family to be prepared. Me and my family were not. Our faith in God helped us through all of this. My prayers to you and your family during this time.
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Good luck on your surgery. The NOLA Dream Team did the same to me in December 2009. The scar is not awful at all, unless you are prone to keloids. I still wear bikinis, though I am a bit crazy. They have ways of finding the primary. And they removed tumors wrapped around by aorta and ureters. There were tumors on my diaphragm and they treated that too. I was out of hospital on day 6 and was driven over 800 miles back home. You are in great hands. Again, good luck 🙂
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I had carcinoid tumors removed 3 years ago from the intestines. Praying for you and your family.
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You inspire me to inquire about a surgery of my liver, where too many tumors are living and I want them out. The NOLA team appears that they really know how to treat NET’s and get them out.
I had my main tumor out 3 years ago with much success, but no discussion about treating the metastisized tumors in the liver.
I think it’s time!
Thanks for writing your blog and good luck with your recovery.
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Dr. Ram was amazing. So is Dr. Wang. They are both surgeons on Dr. Wolterings team. I don’t think things could have gone more perfectly with the doctors and nurses. The hospital was amazing and I was involved the entire time and everything was explained multiple times and ways. Wishing you the best of luck!
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