Has anyone here dealt with a pancreas Nuero Endocrine Tumor(NET)?

[Hassin Bin Sober]

There is so much information out there but it all seems so confusing.

My boyfriend/partner was diagnosed with what they SUSPECT is a NET in the tail of his pancreas.

It came up on a CAT scan he had done for an upcoming hernia operation. This was 6 months ago. The hernia was put un hold for further testing.

After several CTs and MRIs and two endoscopic ultra-sounds with biopsies it still comes up somewhat inconclusive. On the last biopsy, they found "nuero endocrine cells". The first biopsy showed nothing. Either way, the Doc wanted the tumor out and so did the boyfriend. I guess the tumors can, even if benign, cause trouble when they grow.

My understanding is this type of tumor is almost alway benign and, even if malignant, highly treatable if caught early. Steve Jobs had the malignant kind and might be alive today if he had acted quicker (at least that is what I read). The doctor told the boyfriend his tumor was ten times smaller than Jobs' tumor.

The doctors are so nonchalant about this major surgery. They are taking the tail (about 10-15%) of the pancreas, his spleen and his gallbladder. I guess that is SOP for pancreas tail resection. Also fixing the hernia while they have him.

The doc says you don't need your spleen after 25 but I've been reading a splenectomy has life-long immune system implications.

He's having the surgery at a good hospital (where he works, BTW) and the surgeon comes highly rated.

To make matters worse, his step-dad was diagnosed last week with stage 4 pancreas cancer with liver metastasis. When it rains it pours. We are all probably more worried about his mom than anything else. We were there this weekend and it was rough.

[sinkingfeeling]

1. Don't really have any experience, but I would vote for immediate removal. Found

this site for you.

http://netcancerday.org/learn-more/diagnosis-and-misdiagnosis-2

[Hassin Bin Sober]

2. That's a good site.

I've been to a few similar sites but that one fills in some gaps.

I'm of the same mind, if there is any question yank it out.

I guess the bottom line is we really won't have a definitive answer until the entire tumor can be inspected.


Anyone around here missing a spleen? Wondering what real life experience of living without a spleen?

[Irishonly]

3. Best of luck to you and your partner

I don't know about his type of tumor. It sounds like you have a good doctor and have read to inform yourself. I sometimes think doctors sound nonchalant about surgeries because they are trying to keep the patient, the family and loved ones calm. When I had my mastectomy I thought they were trying to make it sound like a walk in the park. Your emotions are going like a nonstop roller coaster and until you experience the word "tumor" or "cancer" you cannot relate to the fear it invokes. Please let us know how his surgery goes. I will keep a candle lit. I light candles for everyone posting in our group.

I am really sorry about his step-dad. How is he doing? His mom is in my thoughts also. My heart hurts for her. All of you are in this together and we will do whatever we can to help.

[Hassin Bin Sober]

4. Thank you! Your post really touched me.

In fact, I think someone must have been cutting onions in somewhere around here.

We are both doing pretty good. I'm the worry wart of the family and waiting for the other shoe to drop if there is another shoe to drop once they can get a good biopsy of the tumor. But I think it will be OK. The boyfriend keeps a positive outlook - he says the patients he sees with positive outlooks always seem to do better (he does CTs and MRIs).

We're both more worried about his mom and step-dad. We visited last weekend and he didn't look too good. He was just getting over the effects of having a bile duct clogged which caused him to go jaundiced (that's how they discovered the tumors). They put a stent in to clear the obstruction so hopefully that will make him feel better in the short-run. Hopefully he will rally a bit and enjoy some of the time he has.

Fortunately, they sold their acreage and home in the country last November 2011. The plan was if something happened to one of them the other didn't want to live out in the country alone. I remember his mom crying to me about selling the house they loved so much but she didn't want to have to go through the process alone. I guess they did the right thing. The good news is she is close to the boyfriend's two sisters. We are 3 hours away. Having the sisters a couple blocks away is a big comfort to us. Also, one of the sisters is a Nurse so she is helpful with the medical aspects.

I'll keep you posted. Surgery is Tuesday.

[Hassin Bin Sober]

5. Boyfriend is home feeling much better.

The doctor feels he is "cured" even though they don't like to use that word and he will need follow up for the next five years. Apparently, theses tumors aren't considered malignent or benign - they are classified by how they are acting. His is far down on the benign side - not spread to the liver or lymph nodes. So it appears we dodged a bullet.

It was major surgery. They took his spleen, gallbladder, lymph nodes and the tail of his pancreas. He would have been out in 4 days but his bowels didn't cooperate. He ended up having the Nasal Gastric (NG) tube stuck back down his nose on day 5 (while he was awake). The spleen comes out because it shares blood vessels and lymph nodes and the gallbladder goes because it will give you problems after this type of surgery.

Out of the hospital on day seven - probably a day early because we had to attend his biological father's funeral. His father passed away while the boyfriend was in the hospital. Jeeze.

The family has been through a lot this year. His stepfather was diagnosed with stage 4 pancreatic with liver mets the day after we scheduled the surgery. The father looked like he had a couple years in him but he went downhill the day of the surgery - COPD and emphysema. the stepfather probably has weeks.

Off to clean father's house.

[Irishonly]

6. I am so glad to hear about your boyfriend.

The two of you have been to Hades and back a couple of times and I really hope both of you are in for some less stressful times. I am still lighting the candles for both of you and his stepfather also. I hope he is doing better.

[Hassin Bin Sober]

7. Stepfather passed a week ago Saturday.

It was pretty quick. 5 weeks from diagnosis.

He was able to die at home surrounded by the family. We took turns watching and caring for him the last six days. It was very difficult but I was glad I could be there. I was additional "muscle" since the boyfriend couldn't lift over 10 pounds due to surgery.

From the "when it rains it pours" department: Mom (boyfriend's mom) had been relapsing on her prescription pill addiction. We all knew it and figured we would work on THAT problem once this is all over. This last Friday, the night of the funeral, she has a grand mal seizure in front of me, the boyfriend, sister and granddaughter. We though she was having a heart attack.

After a night in the ER and a day in the hospital she is out. Going in for a 30 day rehab program tomorrow.

I think we are all due for a break.

Thank you for your kind comments.

[Irishonly]

8. You are due for a break-a big one

I am sorry to hear about your boyfriend's stepfather. I hope both of you are regaining your strength and his mom gets the help she needs.