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Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?
has anyone used mayo clinic in Rochester Minnesota for carcinoid tumors. the diagnosis was carcinoid tumors in the liver. I am looking for the best place to go to treat/and or remove the disease. appreciate any advise.
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@lucci50 How are you doing with the sandostatin injections? Are they helping your symptoms? I know you were going to the Cleveland Clinic. Do you still check in with them? Teresa
I would be curious to know what research you did that pointed you to Mayo? I don't disagree with you, but would love to see the basis.
My wife is treated @ Mayo Rochester. NET ileum with METs to the liver. Two major surgeries 2015, 2016) with Dr. Nagorney. She see Oncologist Dr. Thor Halfdanarson who trained under Dr. Thomas O'Dorisio (a leading NET specialist).
We like Dr. Halfdanarson very much. First saw him speak at a patient directed NET conference in Minneapolis. Before deciding where to go we workrd with Dr. O'Dorisio (Iowa), Dr. Woltering (New Orleans) and Mayo.
We live 4 hours away by car in Wisc, so staying closer to home was a consideration.
With Obamacare, we can no longer buy any health insurance policy in Wisc. which includes Mayo. This year we had to petition our health insurance provider 3 times to include Mayo for one visit - blood work, Ga-68, MRI, bloodwork and office visit. My argument to convince them that People with NETs should be seen by a specialist. They want her to be seen at in-network U.W. Health in Madison.
After all that effort, we were disappointed with the appt. because it started an hour late and we didn't see Dr. Halfdanarson, only a Nurse Practioner who was challenging to understand, very rushed and seemed unsure of herself. It was not a quality visit, especially for an 8-hour round trip drive. Our insurance company would give us push back that in the end my wife was seen by a midlevel. We love mid-levels - our daughter is a Physician Asst. in Nephrology.
Moreover, the ISI 5-HIAA serum test requires a nighttime fast (verified to me by ISI), but there were no fasting instructions from Mayo. I even called Mayo to triple check this and was told that if it isn't on your appt. guide, you don't need to fast.
The MRI indicated a new small (9mm) liver tumor. My wife is due for a repeat MRI in two months. We will have to petition our health insurance provider again. I'm trying to figure out how to make sure we avoid a similar experience.
Hi @tomewilson, we'd like to help you and your wife avoid a repeat experience like you shared here. Thanks for telling us about it. I'm sending you a private message.
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1 ReactionWhere did you do the trial at in Florida? Currently I am with Moffitt Cancer Center, just had a thoracotomy, right upper lobe lobectomy in May 2022. It was a 3.5cm typical carcinoid with metastasis to hilar lymphnodes angiolymphvascular invasion. It was located in the lobe and bronchial tube by the pulmonary vein or artery and they didn’t know if they were going to take the entire lung or just the top lobe until actually being inside my body during surgery. Thankfully they only took the top lobe, but now August 3, 2022 I had a PET copper dotonate scan and they found a new growth in my right lower lobe, the same side as the upper lobe lobectomy.
PET copper dotonate scan August 3rd they also found:
-spine tumor with SUV 2.7 at 5th vertebrae
-fractured 5th rib with SUV 5.7 near spine tumor
-actelasis right (middle lobe collapse)
-neck lymphnodes with mild uptake
-left subclavicle lymphnode with uptake but was interpreted as reactive, which I don’t understand
-new nodule in right lower lobe with no SUV uptake, however I am concerned lung carcinoid tumors do not always show SUV uptake and why was this not found prior to the open thoracotomy right upper lobe lobectomy in May and even post surgery scans and thoracic surgeon and oncologist follow up appointments at the end of May. Was it not there and now has grown?
Post RUL lobectomy in May I have a worsening cough, that nothing helps with and the doctors just say some people get it. I shortness of breath and just had right middle lobe collapse in July 2022. I had sharp chest pains, difficulting getting a full breath which even after surgery I could breathe better, but why two months later post surgery was I going backwards and in more thoracic pain wit every breath, coughing, fatigue, heart palpitations, ripping and crackling lung. It didn’t make sense.
Why is there conflicting results between scans? I know they are different imagining techniques and purposes, but I am concerned the scans are not being reviewed by a lung NET expert and extra concerned why my lung is not healing, but instead going backwards.
August 16, 2022- X-ray only showed chronic fibrosis in the right lung (even as a teenager when I had a fractured leg it did not show up on an X-ray)
August 25, 2022-pulmonary function test results indicated obstructed airway disease
Then last week September 2022 I had a CT scan with contrast and they found:
-no growth in my lower right lobe (the first cardioid I had did not show up on a CT scan either)
-now this CT scan shows a rib fracture in my 7th rib starting to heal with calleous formation and an infection in my 6th rib. This is very concerning because the PET dotonate scan showed I had a 5th rib fracture by the spin and that did not even show up on the CT scan. All I know is that I am in a lot of pain, my lung/ribs burn even while resting, my heart beats funny when I lay down, I gasp for air while resting and when eating, I have deep dinosaur coughs and am fatigued more than post surgery. My right rib cage is swollen, my lung crackles and rips. Something is not right, I shouldn’t be going backwards when my lung was healing for the first two months post surgery. Now three to four months later I am in more pain and have difficulty breathing. I can tell my brain is not getting oxygen too, I am dizzy, headaches, my brain freezes and I go blank and I yawn all the time too.
So how do I find one Lung NET doctor or a lung cancer specialist to review all the scans because the interpretations by radiology and non lung NET specialists need to be pieced together because something is not right. I should not be in this much pain, coughing, fatigue.
Thank you
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1 Reaction@melmangen, might Mayo Clinic in Jacksonville, Florida be an option for you? Mayo Clinic, Florida has top-ranking NETs and lung cancer specialists. Your care team is composed of experts in different fields who work together to determine your lung NETs cancer treatment options. This team approach means your care is coordinated to meet your needs so that you receive the treatment that's best for you.
You can find out more about seeking a second opinion, either by scheduling a phone appointment with a coordinator or submitting an online form. See more here: http://mayocl.in/1mtmR63
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1 ReactionHello @melmangen,
I do hope that you consider a consult with Mayo Clinic. They have NETs specialists who understand NETs and have good people skills as well. Perhaps a virtual appointment with a Mayo doctor would be helpful to get you on the right track for treatment and pain relief.
Mayo Clinic offers a monthly virtual support group. We meet on the first Thursday of each month at 5:30 p.m., EST. I will see that you get a notification of the next meeting in October. You will meet others who are also dealing with NETs and various treatment plans. I think you will be encouraged as they share their stories.
What will your next step be?
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3 ReactionsI am so thankful for the opportunity to have a virtual appointment with the Mayo Clinic in two weeks!
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3 ReactionsI have been with Mayo in Rochester since Feb 2020. I have grade 3 NETs in multiple areas, mostly in my liver and lungs. I cannot recommend the NET specialists here enough. They are all amazing.
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2 Reactions@melmangen, so glad you were able to get a virtual second opinion at Mayo Clinic. Are you preparing your questions?
Welcome, @firepower. What treatments have you had? How are you doing today?
I started with two rounds of capecitabine/temozolamide, which did not work at all. I switched to FOLFIRINOX in May 2020, and completed 10 cycles. I had tumor shrinkage but it was a rough treatment. Oxaliplatin was removed due to neuropathy in October 2020, and I have since had 50 rounds of FOLFIRI, generally every two weeks over the last two years. Scans have been stable, so we just keep doing it. My most recent CT scan showed possible growth in a tumor in my liver, so I’ll know more in about two weeks whether we might have to switch to a new treatment in the near future.
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