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pet scan vs cat scan

lindadanis
Posts: 267
Joined: Nov 2009

Ed is almost finishing his third round of chemo and his ordered will be ordering a pet scan. This will be his third pet scan, he never orders cat scans with the pet scan and I am wondering why? Don't most oncologist order both scan to compare or am I wrong? He had one cat scan way back in last october when first diagnosed and not ordered by this doctor.
any thoughts here?

thanks

Linda

lindadanis
Posts: 267
Joined: Nov 2009

Dear William, Diana and I have been very very busy with a flooded basement so the answer to your questions about getting out is "no", we have been pumping our basement out, we got over seven inches of water today, what an nightmare. I did ask the doctor in february about the cat scan and he said "no we are doing a pet scan", this doctor hates to be questioned and no, I do not like him nor do I have a great relationship with him, it's his way or no way but again, I will ask him before the next pet scan due end of april. Ed is in bed still most of the day, he went to the doctors yesterday for a checkup and they gave him 3 hours of iv fluids because he was dehydrated. They did this at the doctor's office and he has been in bed ever since we came home. He says he has diahrea alot and is taking immodium and lamotrol (hope I spelled them correctly), I do not know how bad it is because I am not on the second floor but I do not hear him getting up all day, I think he just wants to spend his time in bed as we talked about. he told the doctor yesterday his pain level is on 0 meaning 0-10, no pain, I cannot figure him out William, is he so sick he doesn't say so or is this totally psych issues? The oncolgist told me yesterday that xeloda and oxcyplain would not keep him in bed 23 hours a day, that it is "ed" keeping himself in bed all day, the doctor seems quite upset with Eddie about this and does not want to discuss it with him any further. He did say if the pet scan in April shows no improvement, that he will suggest going home on hospice, no more chemo. what do you think of that? he said his third/fourth choice drugs would be little or no use with this type of cancer, maybe pallative radiation. Any thoughts on this? Well, got to get back to my basement situation, thanks for sending me those outlines on cat/pet scans., they are very helpful.
Please keep me posted and your thoughts on Ed. By the way did I tell you that when Ed first got diagnosed back in october, he was diagnosed right away with stage four, cancer to the esphogeal, stomach, abdomen, pelvis and liver and when they repeated his pet in February after three rounds of chemo, his pet showed more activity in the same areas, the report said it was growing at a rapid rate.
I was not sure if I shared this information with you. Not good, hah?

Linda

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Dearest Linda,
From one caregiver to another, I feel for you. I feel your pain. Please know that you are doing everything possible for Ed. Sometimes the patient just wants and needs to be by themselves. That is the way they like to deal with it. It is not you. Did you ever suggest Ed writing in a journal? This helped my dad tremendously. It was hard for my dad to express his feelings openly, but on paper, it was much easier. I was glad to read that Ed did get rehydrated. That was real important. Hang in there. Time will tell what will come next.

Hope your flooded basement issue has improved. Keep your faith. Know that we are all here for you whenever you need to vent. Give Ed a hug from us, as well as yourself. Keep us posted.
Tina

lindadanis
Posts: 267
Joined: Nov 2009

To Tina and all, thank you so much for thinking about me and writing to me., I sincerely appreciate it., yes, the flooded basement is getting under control. Ed has a journal that my sister gave to him but he has never written in it, don't know if he ever will. He is basically in his room day and night, complains about have diahrea but I do not think it is much, just another excuse to stay up there. Things are really tough around here, he goes for his iv chemo next monday, then two weeks on xeloda then the dreaded pet scan around april 19th. This has been the most difficult time in my life and I am praying that this pet scan shows some improvement. thanks again and will keep you posted. Tina, how is your dad now and what stage is he, is he doing treatment?

lindadanis
Posts: 267
Joined: Nov 2009

Dear William, I certainly have alot to think about and I want to thank you deeply from my heart for sitting down and writing that long post to me. I agree with you totally and I mentioned to Ed today that maybe we should not do the third round of chemo Monday, lets ask for a pet scan to see if this treatment is doing anything., he said "he wants the doctor to make that decision". He cannot seem to make any decisions on his own, he needs fluids again and would not go today so I am making him go tomorrow. We do not see his doctor, we see the pa in that group, although his doctor is on tomorrow seeing other patients. Do you think we should request a pet scan for next week to see what is happening instead of doing the third treatment, he is in bed again all day, eating nothing, barely drinking and says he is exhaused. I do believe that he is too weak for more chemo, and that we should not do it monday morning. How much can a body take with this poisen and when it is not responding, then why do it William?

I will keep you posted and again, thank you for all your information about Hospice, etc.

Linda

lindadanis
Posts: 267
Joined: Nov 2009

William, we are heading off to the doctors this morning and I have already been told that Dr. O'Connor is way too busy to see us today, we were a fit in for fluids only, but I will talk to the Pa while is he getting the fluids. I am going to take your advice and get more direct with this doctor, we also have an appt with him on monday for the third session, I am going to talk with Ed today and see what he wants, yesterday he said he wants to finish the third round as the doctor planned and get a a pet scan. He is very adamant about this.
He told my daughter yesterday he stays in bed because whether or not he is a "good boy" he doesn't get what he wants, I believe he is referring to his motorcycle!!!!!!! Give me a break., so this is a decision that HE has made himself to stay in bed, he must be mad at us for not buying this bike, what a selfish man to do this to his wife and daughter., I am very angry after hearing this. He will never go to a facility I can tell you that and I do not think our insurance would cover it, but I will check into it. Ed is very stable in his mind about making decisions, believe me William, I know this, alot of this is a game. I am having my mother over for the weekend and believe me, he will get out of bed to visit with her., she came two weeks ago and he came downstairs and sat in the yard with her for a while, it kind of got me mad, he can come down for her but not for us., my mother is angry at him for the way he has been treating me, she even talked to him but got no where.
I will let you know how we make out.

Thanks again

Linda

Tbree
Posts: 1
Joined: Sep 2012

My dads Doctor refuses to do a pet scan when I asked why his reply was its a" personal preference" for the individual doctors the ones at his practice at UVA believe they are" too costly and give too many false positives" Hope that helps some

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