Neuro Endocrine Carcinoma - Pancreas and liver

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Neuro Endocrine Carcinoma - Pancreas and liver

Postby Richol » Fri Sep 07, 2012 5:16 pm

This is my first post on a forum so I hope I am doing this right. In early 2011 I had my yearly physical and by some sort of fluke in an unrelated test it was found that I had a spot on my liver. After numerous ultra sounds, CT Scans and MRI's (luckily I live in Canada and I am over 65) and 2 biopsies(which showed absolutely nothing) my surgeon decided that he must open me up to see what the mass was in my liver. First operation was Nov. 23/11 .... he took out 60 % of my liver along with my gall bladder and while I was open he felt another mass of some sort at the other end of my liver. Since he didn't want to remove any more of the liver at this time he used a microwave embilation probe (I am guessing at the spelling) to treat this other unknown mass. The results from the testing found that I had a neuro endocrine carcinoma in my liver. Good news and bad news....he totally removed the large mass with the 60 % of the liver...but...this type of carcinoma does not normally start in the liver! During the next three months of my recovery I had more blood tests and an Octreotide CT Scan to try to find the primary source of the cancer. They found it on the tail of my Pancreas. WE decided to go in again and get the source so on Valentines Day Feb. 14/12 I had my second operation...they removed 40% of my pancreas and also my spleen along with some lymph nodes. Another 3 month recovery and I was pronounced "cancer free" and they would do some more test in another 3 months. After another Octreotide CT Scan and numerous other tests they found a few more spots in my liver...likely leftover from the last minute work of the first operation. The single best part of the overall diagnosis by my surgeon has been that he considers the neuro endocrine carcinoma to be THE type of cancer to get if you have to get it because he says that it is very rare and very slow growing....this information has helped me tremendously to get through this situation as I believe that above all you need to keep a positive attitude.
At this point my Oncologist and my surgeon have agreed to put me on a monthly shot of Sandostatin...very costly drug with amazing results from what I have been hearing and reading....again...luckily I live in Canada and am over 65. I have now taken the first two shots....I was fine with no side effects for the first 3 weeks but in the past 2 weeks I have had symptoms very similar to the flu 4 times lasting 2 days at a time after which I get possible 3 good days before it hits me again...right now I have been OK for about 4-5 days so hopefully my body has adjusted to it. I am not sure if anyone else has had this problem with this drug but it is not pleasant to have your system totally cleaned out about 4 times in 2 wks.
Luckily for me I have not had to have any radiation or chemo with this type of carcinoma. I am now getting ready for my next CT Scan to see if the newly found spots on my liver have changed at all and then the Surgeon and the Oncologist will decide what to do next...my hope is that there is no change or the spots have reduced...either way I think their next move will be to use the microwave ambilation (or whatever it is called) to go in and zap the spots that are left and I will just will require an overnight in the hospital and it will be over. I can only hope!

I almost forgot to mention that prior to my original yearly physical, I had NO symptoms whatsoever, nor do I at this point...I am not sure if this is because the doctors have caught this problem early or possibly this could give some of you some type of hope that this particular type of cancer is ... maybe.... not as dangerous as some of the other types and as such not as life threatening as a lot of people might think. All three of my doctors have kept me quite at ease with the way they talk about it and now it is just something that I have and I put up with...it does not really worry me but I must tell you that when I first was told of it my original thought was the "BIG C" and my days are numbered...I have since found out that it is not necessarily so!
My philosophy is...keep your head up...roll with the punches...do what you are told...keep a sense of humour...and ALWAYS look for the positive!!!!!!! YOU CAN BEAT THIS !!!!!!!
If there is anyone out there with any input regarding my situation I would really appreciate hearing from you.

Richol

Posts: 1
Joined: Thu Sep 06, 2012 8:02 pm
Cancer Diagnosis: Neuro-endocrine carcinoma
Relationship To Patient: Self
Richol
 
Posts: 2
Joined: Thu Sep 06, 2012 6:02 pm
Cancer Diagnosis: Neuro-endocrine carcinoma
Relationship To Patient: Self

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