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I, too, agree with your succinct and very clear post about what should be the standard of care for PC after the Whipple. There is no way any doctor right now could say all the microscopic cancer cells were eradicated by surgery. And, for any cancer, it is always best to be as aggressive as possible to prevent a recurrence, especially for a person who is as overly fit as the original poster.
Our close friend, like you, was in excellent shape when he was suddenly diagnosed with PC just three years ago and had the Whipple followed by chemo and radiation. He left the hospital in a week walking the halls the equivalent of a mile a day. And he did extremely well with chemo and radiation and has been working full-time for three years except for the first block of surgery and recuperation time.
Then, suddenly, like you Johnathan, on his most recent scan in October, one nodule of some that were known to be in his lungs seemed to have changed. The radiologist was going to watch and wait since there had been no change in 3 years, but he insisted on a needle biopsy. And, unfortunately, it showed PC cells in most likely both lungs. The point of this aspect is 'to always' be proactive in any and all follow-up.
He has just started chemo which given his overall very good health - gym every day with running and weights till relapse, he is now on most potent chemo which is every other week for 46 hours on a pump. I do not ask directly what chemo it is but I assume it is 5FU or Folirinox. My more immediate question to you is how have you found dealing with the chemo for the metastasis to the lungs. For dealing with it for two years, you seem to be active and enjoying life. So many are praying he will have this chance, too. Can it be assumed that progression to the lungs is a slower one than if it went to the liver? Although in the liver it seems like folks have been able to have tumors shrunk or taken out?
For the original poster, always be proactive and willing to get a second opinion on course of treatment for yourself and for your young family. We dealt with that with a daughter who had another serious kind of cancer several years ago, and also be sure to have a PCp who will listen to you for even small changes.
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