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Confused by CT scan result: How can I get it explained?
Pancreatic Cancer | Last Active: Oct 29, 2023 | Replies (28)Comment receiving replies
No offense, but not everyone has a medical background to review results/treatments and discuss/argue with doctors providing their treatment. Nor do they have easy access to pancreatic cancer centers. The closest one to me is 5 hours away and fortunately I have the funds to make occasional trips. I do not know if I have funds to actually complete treatments if they differ from what is recommended locally. I always reach out to the Pancreatic cancer centers to ask for second opinions before changing treatments or asking for additional treatments. After much research, I found out that the hospitals listed as "high volume centers" with PanCan are NOT necessarily pancreatic cancer centers nor are they comprehensive cancer centers. PanCan can not give more info than the "large volume" sites which to them is 20+ surgeries per year. I was initially seen at Cleveland Clinic and was very disappointed in their attitude and lack of explanations-other than "get your life in order". Felt I was passed off to local oncologists to receive what is considered "standard treatment". I have had research everything on my own and send questions to my local oncologist, then send questions to the nearest Pancreatic Cancer Centers where I went for a second opinion early on. I agree with you that we need to advocate for ourselves, but I wish I felt like at least one of my doctors was fighting for me at least half as hard as I have to!
Replies to "No offense, but not everyone has a medical background to review results/treatments and discuss/argue with doctors..."
Oh my gosh, I just happened to come across what you wrote above. This is exactly what I’m always trying to explain. I’m a 62 yr old female who has an oncologist 2hrs away. Everyone keeps saying you have to advocate for yourself! I have no idea what I’m looking for, I’ve only seen the oncologist on my 1st visit. It seems every time I get chemo something bad happens. Allergic to that F drug and sent to ER. Blood clot and embolism to lung next treatment, etc. I’m going for my 3rd gem/abraxine rx Monday.
I don’t understand centers for excellence. Went to John’s Hopkins when I was 1st diagnosed in March but they said I’d have to move to the area and someone would have to move there too to get me to appts, chemo, etc because I’d be too sick and needed someone there. Who’s going to quit their job to do that? So I just gave up and came back home. I feel like I’ve signed my death warrant because I don’t understand all this. Can’t drive anymore because of all the meds. How does everyone get to work? I’m so depressed and constantly having panic attacks I just stay inside my 4 walls and in bed most of the time. If you don’t believe in whatever the centers for excellence are, how would you go about trying to find somewhere that cares if you live or die? What do you do if you’re older and all alone like I am? I just can’t understand how you go on living even halfway normal lives. I’m sorry for going on and on but when I read what you wrote I thought maybe this person can explain.
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Wishing you all the best in continuing your advocacy for yourself. I am hoping that my local oncologist, who I like very much, will be responsive to the advice of my team at MSKCC. Even though they are within 2 hours ground transportation away, it would be difficult to transfer care. I am hoping that my doctor will follow the lead of world class experts. I am glad you second opinion team continues to be responsive to your questions.