Some relief and good news

For those of you in this forum . . . and in all the other groups who have responded to me, with support, whether or not in the form of "reactions" or comments and posts . . . I wanted to let you know that, for once, my husband found care here at the local level that he/we can trust for the monitoring he will need that we were hoping for with regard to his pancreas and the other cysts they've found incidentally in his abdomen that appear to be non-cancerous at this point. The doctor he saw yesterday, he said, was one he thinks we can work with who seems extremely proactive (not REactive like the others we've had to deal with here). I don't think that would have been the case if we hadn't had the opinions we've received from traveling to MAYO for care. So, we are so very grateful for the care he receives at MAYO and for their exemplary opinions.

Traveling to Rochester (a 3-hour trip each way) is one we would have made for the yearly scans (in addition to seeing his nephrologist at MAYO); but he said the pancreas specialist he saw yesterday agreed to do the yearly MRCP scans here. So, if our video appointment goes well this coming Wednesday with the MAYO kidney specialist . . . we should be looking at "only" having to travel to MAYO now and again for his MGN kidney disease; hopefully "only" once a year OR by video visits until (God forbid) the physical need arises to see her THERE. SO, IF we can find a MAYO lab closer to us to run the tests she usually wants done before she consults with us, we are hoping she will be agreeable to having us do things that way, instead of having us beg them to collect the samples here, as has been the case in the past with the labs who have only caused us problems in collecting samples and mailing them to MAYO for processing. That way we wouldn't have to fight with anyone to collect them and we wouldn't have to travel 3 hours away to have them run in Rochester. This way, we would only need to see her in person if his kidney problems got worse, unless she feels it would be necessary. Video visits, we're hoping, after reading the results she needs would be sufficient unless he starts having kidney issues again. That way, "all" he would have to do is have those yearly scans done here and do blood/urine tests at whatever lab we're hoping to find who won't put up a fuss and visit with his kidney specialist at MAYO when she needs to see him in person OR by video visits when she feels it would be necessary.

My private messaging still won't allow me to send private messages so I decided to just post a general message to let those who have contacted me and knew that my husband had an appointment yesterday with the Pancreatic Cancer Prevention clinic, what he was told. I didn't go for the reasons I posted earlier. BUT, he said it went very well. He met with one of their surgical oncologists who told him that she met with the rest of their "Board" and they all agreed that my husband's scans did not show any signs of cancer this year; so . . . YAY!!!!

He also said that they agreed he should continue to go in for yearly scans and that when/if the IPMN on his pancreas reaches 2 cm., they will do a biopsy here at the local level. It's measured right now at 1.5 x 1.7 cm., so along with the yearly MRCP scans they are planning on running here, the doctor ordered a Ca 19-9 pancreatic cancer marker blood test yesterday and wants to repeat that test every 6 months. It was in the normal range, at a "5" out of a 0 to 37 range, which means it was negative for that pancreatic cancer marker. She also told him that with his cancer history and with his family's history of cancer, they want him to complete genetic testing. So, once he turns in the paperwork, they will be running that for us. We have two daughters and one grandchild; so, largely for his sake but also for the sake of our kids . . . they want that done.

All in all . . . a good visit. We/they will be doing everything that can be done at this point to monitor things the best that they/we can.

Whewwww! Cross that off our wish list. Looks like, too, that if/when that stupid cyst reaches 3 cm., they will remove it. So, it appears everyone will be watching him for abdominal cancer, and monitor those issues here, without having to beg them for it. We're confident that everything, with regard to THOSE issues, will be done here at the local level that CAN be done. We all know pancreatic cancer is nothing to mess with. No cancer is for that matter but since we've had one too many ridiculous things told to us in the past . . . it's been reason to pound the pavement for adequate care somewhere else. So, for us, this was great news.

I guess that's it for now.

Just wanted to send the latest info out there to everyone who has offered me so much of the support I was longing for. I still plan on sharing my thoughts and fears with everyone as our journey through the halls of "watching and waiting" many of us travel, as well as offering my tips from our past experiences with everyone whenever I recall something. Please feel free to ask me ANYTHING or share your experiences with me too. I'm so glad I decided to join this forum. I hope I've helped you as much as you've supported me and tolerating all my blah, blah, blahs.

Thanks for caring!
Dawn