My Introduction
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Matt, my Teddy had an aborted Whipple and 3 weeks later the real deal. They removed the Duodenum, the head only of the Pancreas, the gall bladder and did a little rearranging. He had clear margins. Never had chemo as they said where the CC was located it would not help. Now that was 9 years ago and a lot has improved. Yes, it is true that the Whipple is the biggest surgery to the body but NOT life threatening, whereas Heart Surgery can be life threatening. I remember his Surgeon appearing after 8 hours and saying, “Stick me with a fork I am done”. Then the wonderful words “all clear”. The next day he was sitting up and the 3rd day walking. Yes, it takes some time to heal and there are possibilities of bumps in the road but always fixed and in the end it bought him 5 years. There were not life changing issues. He still went back to work, he golfed and what I noticed was that his eating habits changed. Like, he was a chocoholic and never wanted it again. Too sweet. He loved his glass of wine at night and lost the taste for that. Again, no regrets and would not have done anything different. In fact when he had his, there was only a handful of Surgeons doing it.
My thoughts are to not make any decision until the whole jury is in and then put together what all the pros say and make your decision. I just wanted to tell you that it may not be a walk in the park but we didn’t consider it a nightmare either. Best of luck on your appointment.The Whipple procedure involves removal of part of the stomach, gall bladder (mine is already gone), part or all of the pancreas, as well as the common bile duct.
There’s a good set of videos and other information at http://www.whipplewarriors.org/the-whipple
Lots of risk of leaks and infection as well as digestive and insulin related issues post-surgery with that procedure. They rank the complexity right up there with a heart transplant.
Yep – your thoughts echo mine… why knock me down with chemo first? A brief call with my soon to be local Oncologist made me start to agree with them.
If I were to need a Whipple, that’s major, life-altering stuff. So why subject myself to that if the cancer is just going to keep spreading? Recovery from that surgery would take months and I’d be unable to have chemo during that time, so then I’d be even worse off.
Best case scenario now which I am hoping for is:
1) The PET shows no other spread
2) I can find a surgical oncologist willing to cut out the new little tumor WITHOUT a Whipple
3) I do adjuvant chemo and keep it from coming backThe more-likely scenario is:
1) There may be spread elsewhere
2) I do chemo for a while
3) I do my best to get into a trial, perhaps joining Melinda’s success with NIH NCT01174121.It’s no fun being back on the roller coaster…!
well I am somewhat disappointed that they are just going off assumption and not known facts at this point. Are they going to wait and see what you PET says? What if there is no spread, would they still want you to do the chemo and then take out? And if that’s the case why can’t they take out if it could come out now and then do adjuvant chemo? I am sure these are all questions that you most likely have asked already. I am hopeful for you and I am not assuming the worst! I am the worst at staying positive for myself, but great at offering support and being optimistic and positive for others! You will be in my prayers. Take care.
PorterHi Porter – basically, yes. Mayo is assuming the worst.
I’m starting to see the logic. It makes sense to try Gem/Cis and see if that prevents growth and spread for 2-3 months, then if it has, look into resection. Based on where this new tumor is they think it might require a Whipple to remove it and that’s not a minor procedure…
Thanks for the note!
-Matt
Hi Matt I wish you luck on your next week appointments. Is Mayo just assuming that this has spread and that is why they won’t currently operate? And this is just based on an assumption rather than tests/images? I wish nothing but the best for you and please keep up posted on your latest updates. Blessings and take care.
PorterCatherine,
Thanks for note – I’ll be driving up Monday morning. The appointment isn’t until Noon on Monday so I’ll be fine, even with traffic. I won’t be staying over this time but will keep your hotel tip handy!
I appreciate the thoughts and tips very much!
-Matt
middlesister1 wrote:Matt. Not sure if you’re driving up Sunday or Monday. Traffic can be bad around dc and baltimore. I know the holiday inn near univ of md offers low rates(98) for patients. If you’re staying in Baltimore I would check with hopkins on hotel partnerships.Thinking of you
CatherineMatt. Not sure if you’re driving up Sunday or Monday. Traffic can be bad around dc and baltimore. I know the holiday inn near univ of md offers low rates(98) for patients. If you’re staying in Baltimore I would check with hopkins on hotel partnerships.
Thinking of you
CatherineHere’s a little update on my journey.
I’ve got an appointment with Dr. Pawlick at Hopkins next Monday to get his opinion on resecting the new tumor.
I’m being scheduled for a PET scan here at VCU/MCV next week to determine if there are other tumors or just the one.
Mayo will consider resection, but only after I go on chemo for 2-3 months first.
Matt,
I too am sorry you are dealing with this. Don’t have much to add to all the good advice you have already gotten, but want you to know that I too am thinking of you and hoping for the best for you. Please let us know how things are going when you can.
Darla
The only evidence of spread is this new small tumor, however, I have only had an abdominal scan recently, no full chest or elsewhere.
DukeNukem wrote:Is there any evidence from a CT scan that supports the spread of cancer?There are people who have had multiple resections and are doing fine. I’ve never been satisfied with, “well, it might make things worse” argument. But I can’t find an oncologist either locally or at Mayo who agrees with me. Maybe it’s a good thing I went into nuclear engineering (reactors are easy to understand and control) instead of medicine. Besides, I hate the sight of blood – just like Dr. Martin.
Duke
Is there any evidence from a CT scan that supports the spread of cancer?
There are people who have had multiple resections and are doing fine. I’ve never been satisfied with, “well, it might make things worse” argument. But I can’t find an oncologist either locally or at Mayo who agrees with me. Maybe it’s a good thing I went into nuclear engineering (reactors are easy to understand and control) instead of medicine. Besides, I hate the sight of blood – just like Dr. Martin.
Duke
Mayo’s logic for not operating to take out the new (small?) 1.2cm x 1.2cm x 0.2cm tumor is that the cancer must have spread so I should start a systemic treatment ASAP. Taking time to do surgery and recover would delay the chemo and I’d end up right back where I started.
I don’t like that line of thought.
Maybe it hasn’t spread, maybe it won’t if they remove this one bit, who can know…
I’ve got appointments with a GI doc, oncologist, and surgical oncologist locally in Richmond, VA at the VCU/MCV Massey Cancer center in the next two weeks.
I’m also going to reach out to Dr. Pawlick at Hopkins for another opinion on the surgical side.
Make sense? What else can/should I be doing while I feel perfectly normal?
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