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I thought all the cancer was removed during the surgery....wrong!! Apparently it is in 6 lymph nodes. I am crushed!!! My heart is broken. From what I've read that's pretty bad. We haven't talked to the doc yet. I read the pathology report on his portal. Doc hasn't even seen it yet. (according to his nurse) Why would they do that? Communication has not been very good from the start and I've had to make sure things are done. We are in TN and have excellent cancer centers.
I really need to find some support........
Replies to "I thought all the cancer was removed during the surgery....wrong!! Apparently it is in 6 lymph..."
It would be my honor and I would be happy to support you. Just before the holidays, on this website was an article about teaming support survivors with current patients geographically near each other. I am in Allentown, PA, about 600 miles away, but support is support, near or far.
I cannot and will not give medical advice, just support, insight, and can very much relate to what your are facing.
Our moderator, Ms. Young, hopefully sees this and is able to forward our emails to each other. Our conversations will be private and may become tense at times and are not for everyone to see and chime in. As you might have already noticed, my views are quite contrarian and some readers may find them offensive. If the moderator has any requirements for me to complete, I will make every effort to do so. I have supported two friends this past year, and while neither survived, you will be helping me with my grief while I help you with this most difficult journey.
Good luck and Stay Strong,
Kevin Kear
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Getting results ahead of your appointment can be a blessing and a curse. You ask "why would they do that?"
In 2016 the Cures Act went into effect, but the part that pertained to access to patient records wasn’t effective until April 2021. The Dept of Health and Human Services began enforcing the rule which declared that a hospital or doctor must allow access to a person’s health information.
You can read more from other members about tips to using the patient portal and navigating the sometimes scary world of see results before the doctor in this discussion:
- The Patient Portal—Help or Hindrance? https://connect.mayoclinic.org/discussion/the-patient-portal-help-or-hindrance/
Please join the discussions in the Pancreatic Cancer Support Group https://connect.mayoclinic.org/group/pancreatic-cancer/