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PET/CT update - bad news?

sallyjoy
Posts: 102
Joined: Apr 2004

I just called about hubbys scan results. The dr's secretary would only tell me that something showed up and the docotr would have to call me as she is not a medical professional. The dr is on his way out of town so I may not here from him today or tomorrow - that means I've got to sit here and freak out. I do know his CEA went from 1.8 to 3.9 so now I just don't know what to do. Why did she even tell me anything... now I'm just in tears and panicing. She wouldnt even tel me where "something" showed up! If it was the liver I would not be so worried, as we already know there is a met there, so now what am I supposed to do?? PLEASE PRAY FOR MY HUBBY.

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

you and your hubby are included in my prayers, as
are all survivors on this site..chances are nothing could happen in 2 days to change anything, but I do know how difficult the waiting
is, but you need to be strong for him and not freak..your panic will just make things worse for both of you. Is the DR youspeak of the Oncologist or the Radiologist? Possiblly you could talk with the Radiologist? Bud

Chrisswife
Posts: 50
Joined: May 2003

I will include you both in my families daily prayers.
Waiting is excruciating but I will tell you that when we called to get my husbands PET results, the office person also said that they found something, it was in Chris's left neck and the doctor would have to discuss it with us. We waited for 36 hours and of course we feared the worst - how could we not? It turned out to be absolutey nothing. A swollen gland brought on by a toothache. PET scans pick many many things many of which are NOT CANCER.
Chris has been in remission for nearly a year now. I know how hard it is but please try to relax and take care of yourself. Do things to keep your mind off of it and squawk and make noise if you have to to get a medical professional on the phone to get some answers. Good luck to you both.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Shame on that receptionist for telling you that! I had a similar experience when I was first diagnosed. The receptionist told me that the results of my colonoscopy were in but that I should bring my husband w/ me to the doctors appointment, so that we would all be on the "same page" - then she would not tell me what in the hell she was talking about. I knew though, that it was BAD.....but I had to wait till the next Monday or so to hear it from the doctor. Make sure to tell your doctor what happened when you do see him, that is so unprofessional, I am sorry you had to go through that! I have to tell you though that there is unfortunately alot of waiting and guessing involved when you are dealing w/ cancer. I was diagnosed in March 2002, then 2 months after my first round of chemo they found a met on my liver which was successfully removed. I finished my 2nd round of chemo last August but in Feb. I had quite a scare to say the least! They saw 2 small "spots" on my CT scan on my lung, which were not there before. I then had a PET scan which was inconclusive. I had to wait THREE MONTHS to find out that they were benign granulomas (aka scar tissue!) Talk about nerve wracking. I cannot tell you what a relief it was to find out that they were not cancer. I pray that you get good news too. So see, don't get all freaked out prematurely. There is enough to worry about in life w/o making premature assumptions. Just go for a long walk and keep positive.
Will be keeping my fingers crossed for you, Susan

sallyjoy
Posts: 102
Joined: Apr 2004

just a small bit of news today. I called back to Hopkins and had the lady send the results to hubby's onc. dr. His nurse there did not understand a lot of the report but told us that what she did understand was that it appears as if the chemo (FOLFOX & Avastin) are not working. She doesn't see anything suggesting any new cancer anywhere else, just the liver, but it has not shrunk any... so the Hopkins DR. is supposed to call us on Mon. and tell us in more detail what all this means or if it has grown any larger. That is some relief - at least they dont think it has spread anywhere else. I am furious though at the lady who disclossed to us that something showed up - she should not have said anything or just said the dr would be in on monday and would review results then instead of getting me all crazy thinking it had spread. To top it off we got news last night that hubbys father's liver met (Colon cancer) has stopped responding to his chemo and is growing. He had port placed yesterday and we are waiting to find out what chemo drugs he'll be put on now. He was on 5Fu/Luek. and they had added Camptosar and Avastin, but now it is progressing and we are woorried that he won't do so good if they try FOLFOX - had no effect on hubbys liver met and the side effects arent too great... What other chemo drugs are there. I guess I worry that his dad got sick and lost his hair on Camtosar, so why would it work for my hubby.... and vice versa...if hubbys chemo didnt work - why would it work for his dad. I know everyone is different but i kept my hopes up because his dad did so well and cleared up mets in his pancreas and lungs just on the 5Fu. I hate this hurry up and wait game. i hate this disease all the losses our family may incur because of it. I know I am rambling, but I just needed to vent. I have to keep my spirits up, I know, but sometimes I just get so mad at this whole thing! Thanks for all your support and I will keep you all in my prayers and update you when I know more. God Bless and ythanks again...

PS - I think I will be talking to patient advocacy at Hopkins so they are aware of the situation. That lady should not be saying anything like that if she is not qualified....

pjenks57's picture
pjenks57
Posts: 112
Joined: Nov 2003

Bless your heart. You are in my prayers. I know exactly what you are going thru and it isn't easy but you have to take it one step at a time and as everyone else said TRY to stay together for hubby's sake. I did a pretty good job. I worked and would lose it on the way to work and at work sometimes but not around hubby. BUT it is okay for the two of you to have a good cry together once in a while!
I agree with you that the waiting is horrific. In today's world you would think we could get some well worded news within a few hours. Don't have to get specific until the dr.'s appt but something would be nice.
Oh geeze, I am rambling too! well that is a good thing that this board is for and I use it from time to time. By the way my hubby was dx in Sept 2003 and was on Xeloda w/ oxilaplatin for the 1st 6 treatments. CEA dropped from 634 to 39 and then he began on just the Xeloda and now after about 13 more he is at a 2.9! He is a stage iv with mets to liver and lung and 6 of 14 nodes. Dr's all said it is 100% chance that it will return sometime somewhere. We figure maybe in about 50 years would be nice (he's 60!)
ANYWAY sorry to go on and on. God bless you and your hubby. By the by... Remember to do something for yourself!

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Sally--yup--gotta agree with you--so many times this happens and we are all put under stress 'cos of it.The best suggestion to me is for them to say "nothing"--the results will wait a coupla days and even tho we know that waiting for results is a pain--most of us would prefer to wait rather than be told--"found something, but!"
I had to wait after the doc. found lumps in my testicles--ok guys--have a laugh!!!!!!
Not made up humour you understand Sally--but truly--I even abstained from sex--now thats gotta be one for the books!
Luckily it was found to be caused by my chemo--fluid retention.Seems funny now as you can imagine but at the time it was a real fear--I was worried my colon cancer had met. to become testicular cancer!
Hey Sally--am sure your hubby knows of your fears--Jen and I both cried many times--together--love has that effect.
I think if you were able to compare everyones treatments here on this board we would see many different results.
Our prayers and love--kanga n Jen

taunya's picture
taunya
Posts: 392
Joined: Jul 2002

Sally,
You have quite a lot on your mind. I am praying for you and your family. Try not to get too overwhelmed, this is a long process and there are so many twists in the path. I am the number 1 worrier so if I am saying that .... My thoughts are out to you and your family.
Taunya

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