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Posted 8/24/2018 9:34 PM (GMT 0)
All this has just developed over the past month, and I've mentioned a few bits and pieces here but didn't really have much solid information until today when I saw a surgeon about doing a biopsy. But I had posted some background on that other forum a couple weeks ago.

My GP ordered a CT scan in early August because my pancreatic enzymes were off. The scan revealed a golf ball sized mass in my small bowel mesentary, which is the structure that supplies blood to the small intestine. My GI stated that these types of mass are usually carcenoid.

Today the surgeon said that because of the location of the tumor, the only way to biopsy it will be to remove it, rather than a radiologist trying to approach it for a needle biopsy. Fortunately, removal is also the primary form of treatment. He said there's a 2 in 3 probability that he would be able to do it laproscopically, but he may have to switch to an open approach during the procedure.

The big question is when I will be off prednisone. I am down to 20mg/day now, and I see the neuro-ophthalmologist on Monday to try to get a timeline. I've already had to cancel the nasopharangeal surgery that was originally scheduled for three weeks from now. The surgeon emphasized that I need to act in weeks not months.

Right now I have no idea where this is going. There don't seem to be any online forums for this type of cancer.
Posted 8/24/2018 9:39 PM (GMT 0)
Very sorry to hear. We're here for support as best we can.
Posted 8/24/2018 9:41 PM (GMT 0)
Wow. Thanks for letting us know what’s going on, Rob. Hang in there.
Posted 8/24/2018 9:43 PM (GMT 0)
Rob, all i can think to say, is oh, crap. It's been a horrible few years for you, and you seem to have handled it all with grace. I will pray that all this gets worked out and you get a favorable outcome. Having met you in real life, i can say, that i know you are not only strong, but also one of the good guys. Nobody deserves this string of luck, but least of all, you. Hang in there.
I'll be thinking about you, i really mean it.
Posted 8/24/2018 9:43 PM (GMT 0)
That's not good.

Hopefully the surgery will get it all.

Andrew
Posted 8/24/2018 10:09 PM (GMT 0)
that stinks buddy. i'm pulling for you.
Posted 8/24/2018 10:15 PM (GMT 0)
RobLee, you are a true fighter. Feel really bad about this news. All the best for your surgery. Just like RALP, this phase will be over before you know it and you will be motivating all of us here like you have in the past.
Posted 8/24/2018 10:25 PM (GMT 0)
Rob Lee,

Sorry to hear this news. The good thing is the skills you learned for coping with PCa can help you through this. Take it one step at a time Brother.
Posted 8/24/2018 10:54 PM (GMT 0)
I hate this for you RobLee.
Posted 8/24/2018 11:29 PM (GMT 0)
RobLee I'm so sorry to hear this. You've had much more than your share of this crud. But I've never once heard you complain or sulk. Wishing you all the best with this!
Posted 8/24/2018 11:31 PM (GMT 0)
Good luck friend
Posted 8/24/2018 11:41 PM (GMT 0)
I may be a sissy but rob I am a prayer and I will pray for you and your wife .....you are truly a good man ...on other site back when you did warn me of the effects of radiation .....I appreciate that very much .....god bless you ....wish I would have listened thank u fir all your wisdom

Post Edited (Stan1961) : 8/24/2018 6:54:43 PM (GMT-6)

Posted 8/25/2018 2:24 AM (GMT 0)
I wish you all the best Rob.
Posted 8/25/2018 2:38 AM (GMT 0)
Rob, sorry for the bad news. You will be in my thoughts and prayers. Just another bump in the road brother! Keep strong and keep fighting! Good luck!
Posted 8/25/2018 8:02 PM (GMT 0)
Rob, I'm really sorry to hear about this new development. Praying for you to end up with a good outcome!
Posted 8/26/2018 6:35 PM (GMT 0)
Good grief...sorry to hear of this!!
Posted 8/26/2018 7:29 PM (GMT 0)
Rob it's been 2 steps forward and 3 back for you the last couple of years but now things are going to change for you get the surgery done and no looking back!!! Looking forward to many more yrs chatting on HW

Larry
Posted 8/27/2018 2:47 PM (GMT 0)
My wife had a similar growth in her small intestine but it was due to chrons and she was lucky to have it out laproscopically .

The one thing I suggest is that you ask your surgeon if he will have a pathologist in the OR at the time of the surgery to check samples so as he starts removing intestines so he knows in real time if he gets everything and doesn't take more then needed.

During my wife's surgery the doc took out section of 7 cm of intestine where the growth was and then proceeded to take out small sections on either side and gave them to the pathologist in real time asking if he sees any chrons in the sample. Finally when the pathologist said , he saw no more chrons, the surgeon connected the intestines .

If there is no pathologist, some surgeons try to play safe by taking too much intestine out and then you are left with bowl movement problems and possible D or soft stools for the rest of your life. Other more conservative surgeons might not take enough out and then you get a reoccurrence in a few years.

Just as suggestion from experience. My wife had her surgery 7 years ago and there is no more signs or symptoms of her chrons .
Posted 8/27/2018 4:09 PM (GMT 0)
Just getting caught up Rob.....screw cancer! If anyone is prepared to handle it with grace and patience, it's you.

Finding a knowledgeable and experienced gastroenterologist/surgeon is mandatory! They are rare birds!!

As always, rooting and praying for you, my friend. yeah
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