Neuroendocrine Tumor - no treatment plan method

@dadcue
That is great. Will you provide updates as you follow up with your appointments?

@dadcue I'm not a doctor, so my opinion is just that an unqualified/unskilled opinion. For me the in 2004 the removal of my tumor which was in my small intestine along with my appendix, ileum and 30 lymph nodes in my mesentery of which 8 tested positive for cancer gave me 21 years (give or take) of being cancer free with only minor abdomen issues. I had a laparotomy during my 2004 stay in the hospital. It took probably 12-18 months for me to create a new normal, but it was close to the old normal. Removal now 21 years later is not recommended because the oncologists all believe my cancer (per scans, etc) is not localized, hence Lanreotide injections. As I stated before I am not a doctor, but I believe your doctors know best. Playing for a draw when the doctors sound like they can do better, I'd bet on the doctors. If I may ask how old are you and are you in good shape? I understand why your apprehensive regarding surgery, who wants to have surgery? I hope my answer helped a smidge. Good Luck to you.

@ceefer May I inquire as to what insurance you have that won't cover Creon?

My new Medicare Supplement plan. They covered Zenpep but it’s not helping like the Creon did.

@hopeful33250 no they just gave a prescription for Zenpep, which doesn’t help like the Creon does. It was not a NET specialist. I have finally gotten an appointment with one for June.

@ceefer,
I am glad that you will be seeing a NET specialist in a few months. In the meantime, you might ask your current doctor to contact your insurance company to appeal their decision about the Creon. It is certainly worth trying if Creon is more effective.

Thank you.

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@doonman

I'm 71 and for the past 5 years, I have felt like I was doing well medically. There was a time when I didn't think I would live to celebrate my 70th birthday. I feel like I'm in overtime in the game of survival. My revised hope is to celebrate my 80th birthday with nothing too major to deal with until then.

I have been battling chronic pain and inflammation for 35 years because of autoimmune problems. My immune system is overly aggressive and needs to be tamed. There will probably be collateral damage no matter what treatment I receive for a NET. I might be wrong but if this NET is slow growing and not too aggressive, maybe I don't need to feel threatened.

I'm not afraid of surgery. It is more like having battle fatigue. I have done a couple of major surgeries in the past. The surgeries went according to plan but my post surgical recovery was unpredictable.

Since my immune system is suppressed, I already have major surgery pending on my spine. Pain will be the "deciding factor" for that surgery. I doubt abdominal cancer surgery will be possible but I will see what the NET cancer surgeon says about it this coming Friday.

I would definitely seek another opinion and don’t let them bully you.

@hopeful33250

I saw a surgeon who is part of the multidisciplinary NET team of specialists. Surgery was recommended but it wasn't clear to me how soon the surgeon would do the surgery. I read the post-visit notes which implied that I was the reason for delaying surgery.

"Offered surgical resection, patient deferred for now. We recommended upfront resection of the lesions and discussed resection versus watchful waiting. The patient expressed a strong preference for waiting."
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We talked about the "potential problems" I could have if surgery wasn't done. The surgery sounded extensive to me and included the removal of my gallbladder. The reason for removing my gallbladder is so I wouldn't develop gallstones. Removing the gallbladder during the initial surgery prevents future, urgent, or emergency surgeries to treat gallstone-related pain, infections, or blockage. The anticipated treatment with medications like octreotide or lanreotide was the reason to remove my gallbladder.

I was somewhat overwhelmed by everything the surgeon said. My follow-up with the surgeon is in 6 months. I'm not inclined to do the most invasive thing first. I wish to be treated and I will see an endocrinologist that is a NET specialist this upcoming week on Tuesday. I was happy about the 6 month reprieve.

A CT-scan with contrast will be done which will give the surgeon more information than a capsule endoscopy so the latter was cancelled.

My question for anyone is:
What are the alternatives to immediate surgery if I take the "wait and see" approach to treatment.

The surgeon said he could see a tumor that wasn't reported on a CT-scan without contrast that was done in 2020. That CT-scan was done because I had abdominal pain caused by a kidney stone that was moving into a ureter and causing an obstruction. I still have multiple uric acid kidney stones in both kidneys that aren't moving so they don't cause any pain. I don't like abdominal pain and I don't want anymore obstructions or blockages anywhere.