Any thoughts or suggestions would be helpful
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Hi Johanna,
That sounds like a plan. Please let us know how you get on with calling Hopkins today.
Best wishes,
Gavin
Johanna,
I believe you know your body better than anyone else. I would seek a third opinion. My Mom had fluid that was called, “loculated” meaning it was in small pockets and not able to be drained. I think it caused her some pain everynow and again.
Hang in there and remember…..You are paying for a service from the health care people and you deserve to get your money’s worth!
If it’s bothering you….it needs to be addressed!
Hugs to you and my prayers…
Pam
Hello Marion, Gavin, Lainy, Wallsm1,
Thanks for all your comments and suggestions. I have had no surgery because my tumor is considered non-resectable (it is in the porta hepatis). I do not have a stent – my bilirubin is 1.5. My CA-19 is 109. I take no pain pills and the pain is twinges and does not bother me at night.
I think I am going to take Marion’s suggestion and wait until the MRI. I am going to call Hopkins tomorrow-they may want to see me earlier. I will have blood work again on 11/9. I thank you for all your support and ideas for this issue. Sincerely, JohannaJohanna….Has the CA 19-9 elevated also? Did you tell your HUP oncologist about the pain in your right side? Do you take pain pills?
I believe that the upcoming MRI will show a clearer picture of what is going on. And, that appointment is right around the corner. Hang in there and stay patient in this never ending game of appointment waits and diagnostic results.
I am rooting for you.
All my best wishes,
MarionHi Johanna,
Great to hear from you again. Do you have any swelling elsewhere, like in your feet or ankles? And I forget whether or not you have a stent inserted. My dad had a stent and he used to get some pain every so often in his right side around the area of the stent. Does the pain get worse at night if you are sleeping on your right side? A third opinion sounds like a good idea, especially so as you say you were not happy with the attitude of the first onc. And if that onc had been treating me then I would not be happy with that either! Hopefully others will have some other ideas as well.
Best wishes,
Gavin
Dear Johanna, this is a hard one. Right side pain could be so many things. I am thinking you should quickly get a 3rd opinion. One of yours says nothing is wrong the other says I don’t know. You are the best judge of your own body and if you feel something is wrong you will not rest easy until you know for sure.
Johanna,
I’m not really sure. I was assuming ascites until you said your US showed very little fluid. Have you had surgery in the past?
Take care!
SusieHello Everyone,
I have not written for a long time. Wednesday was my one year anniversary of being diagnosed with CC.
About 3 weeks ago I noticed my abdomen above my umbilicus (navel) bloated. I could not comfortably button my pants. I went to see my oncologist in Delaware who did not lay a hand on me say “pts. with CC usually don’t get swelling there. Your labs are stable.”
Well, I was not too happy. I am not blood work-I am a patient with a horrible cancer. I should be examined.
So, I went to my Hospital of the Unviversity oncologist (I will be transitioning to her when I move to NJ). Anyway, she felt my abdomen and believed I could have some fluid in it so more blood work and an ultrasound was ordered. Now I know an ultrasound is not the greatest test but what was explained to me is I have very little fluid in the abdomen and no huge tumor noticed. Yesterday, my HUP oncologist told me-she said something is going on but doesn’t know what. I did have a CEA 125 drawn and it has doubled in 2 weeks. Anybody have any ideas?
I will go to JH on 11/15 for another MRI. I have some pain on my right side which seems to get worse at night.
Any thoughts would be helpful. Thanks and I think of you all when I read your posts. Sincerely, Johanna
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