Upset and scared *Update*
I called my ONC office to find out what time the scan was, and she informs me that my ONC didn't order one, I said that is not correct, because we specifically talked about continuing me with doing scans every 3 months, so now I am sitting here waiting for a call back to find out if they are going to order the scan or not, I am NOT going to go see him just to say hi, I want my CT scan done and then I will see him.
The lady on the phone said well haven't you been getting them for over a year now at 3 month intervals, and I said yes, then she started to tell me well usually after that amount of time you go to once a year, I said I am stage 4, and I get scans every 3 months, that I had just talked about it with my ONC, I was like thinking to myself, who the heck is she, she answers phones, and she is going to tell me how my check ups should go? I do not think so.... Sorry, now I am scared out of my mind, what if I do have scans next week, its almost like I am in a panic, like I didn't have time to worry enough, I sometimes think if the more I worry then it will be okay, now I am thinking I haven't worried enough so it will probably be back. OMG my mind, will it ever be normal....
Upset and scared
Beth
P.S. I am in the process of finding a new doctor, I just do not like this one at all, I do not feel comfortable with him or his staff. His office is like a cattle farm, just rushing cattle through instead of looking at us and treating us like Humans. I know he has a good heart and good intentions but I would like more than 2 minutes of his time when I see him. *pulling my hair out*
****Update***
Got a call from my ONC office this morning saying that a CT scan was supposed happen but it didnt get ordered, so they scheduled me for my CT scan on Thursday, so please keep me in your prayers for good results.
Thanks everyone for responding, you all are just the best!!
HUGS
Beth
Comments
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breathe
I'm sure you just got into a routine and something has thrown you off course and now you're letting your anxiety get the best of you. Take a deep breath and talk to yourself like you would your best friend and take your own advice as if you're giving it to your best friend. This chick at the office doesn't know what is going on with your "plan" or course of action and she is just shooting from the hip and talking about procedure. I would demand to talk to the ONC and clarify so you can rest easy with a plan instead of letting the unknown get the best of you. I'll keep you in my thoughts and prayers for continued strength and lessened anxiety. Hang in there!0 -
Scan
OK calm down - whew - now doesn't that feel better - yeah right. Some doctors after a certain amount of time and since you've been NED will start pushing out the scan date. Too many scans aren't good for you either. While realizing you feel more comfortable because of the every three months, even six months is a good amount. If they pushed it until no more then you should be really concerned. See what the oncologist says and then go from there. Your worry makes it hard to function sometimes, I've been there as well. I'll start worrying months before so you're not alone. Let us know what the doctor says. YOU will be fine - can feel it. Remember - breath
Hugs! Kim0 -
Calm down!
Dang Beth,you've been NED 2 years now and it is time to begin to "cut the umbilical", the testing becomes like a drug. I was very nervous doing it when my 2 years were up but decided it was a good thing and meant I was moving forward instead of just treading water. The first one was tough but the 6 months flew by and everything was fine. I now realize how important that first step was to me learning to live again and actually like myself and my life!
And remember every scan exposes you to loads of radiation which is not doing your body any good especially if it is not necessary. Between that and your worrying like you do, you are not helping yourself heal like you can. You might want to think about getting someone you can talk to about this so you will let yourself move on.
Sorry to be so blunt but girlfriend you are doing really well and need to figure out a way to celebrate and enjoy instead of the constant worrying. It's time to help yourself! We will talk much more about this in person @ CP9.
Lisa P.0 -
I agree, breathe!scouty said:Calm down!
Dang Beth,you've been NED 2 years now and it is time to begin to "cut the umbilical", the testing becomes like a drug. I was very nervous doing it when my 2 years were up but decided it was a good thing and meant I was moving forward instead of just treading water. The first one was tough but the 6 months flew by and everything was fine. I now realize how important that first step was to me learning to live again and actually like myself and my life!
And remember every scan exposes you to loads of radiation which is not doing your body any good especially if it is not necessary. Between that and your worrying like you do, you are not helping yourself heal like you can. You might want to think about getting someone you can talk to about this so you will let yourself move on.
Sorry to be so blunt but girlfriend you are doing really well and need to figure out a way to celebrate and enjoy instead of the constant worrying. It's time to help yourself! We will talk much more about this in person @ CP9.
Lisa P.
I was only a stage III, but my scans went to 6 months, and then a year and now, 5 years later....I don't have them at all...the insurance won't even pay unless there is some indication there is a new problem...
As my onc put it: "Kathi, imagine you are like the rest of the people who have not had cancer...except wiser...YOU will come at the first sign of trouble, because you now know what trouble is...but otherwise, well, there is no reason to keep this amount of radiation bombardment happening to you, just like the rest of the world".
BIG Dutch Hugs, Kathi0 -
Dear Beth
Glad to hear that you are working on getting a new doctor. Sounds like the one you have and his office staff are not as 'with it' as they should be in caring for their patients.
You ask...OMG my mind, will it ever be normal...
Well I have to tell you that I would be more worried about your mind if you weren't concerned. Not one thing wrong with your mind. We all have little rituals which we practice looking for anything which can give us an edge in the hope and luck departments.
Just think that all of us will be worrying for you until it is done, so that should catch you up... we have got you covered.
Hugs,
Marie who loves kitties0 -
Not easyKathiM said:I agree, breathe!
I was only a stage III, but my scans went to 6 months, and then a year and now, 5 years later....I don't have them at all...the insurance won't even pay unless there is some indication there is a new problem...
As my onc put it: "Kathi, imagine you are like the rest of the people who have not had cancer...except wiser...YOU will come at the first sign of trouble, because you now know what trouble is...but otherwise, well, there is no reason to keep this amount of radiation bombardment happening to you, just like the rest of the world".
BIG Dutch Hugs, Kathi
Dear Beth,
It was not easy the first time that I had to transition from every 3 months to every 6 month. My onc knew that it was difficult for me...so that first time he let me wait 4 months...then go to the 6. It gets easier to "live between office visits" as time goes by but it sure was hard in the beginning. It will be 4 years since my Stage 4 diagnosis (right before cp-9 October 11th)and I imagine that soon they will want to go to once a year scans. That will be another transition as well.
As others have said, it is true that we need to be somewhat guarded about the amount of radiation we expose ourselves to.
Im sorry that you are struggling right now....I hope as more time passes between scans you will not be as anxious and can start by living between office visits to just plain living!
Smiles,
Dawn0 -
Beth....I have always been up front with everyoneLovekitties said:Dear Beth
Glad to hear that you are working on getting a new doctor. Sounds like the one you have and his office staff are not as 'with it' as they should be in caring for their patients.
You ask...OMG my mind, will it ever be normal...
Well I have to tell you that I would be more worried about your mind if you weren't concerned. Not one thing wrong with your mind. We all have little rituals which we practice looking for anything which can give us an edge in the hope and luck departments.
Just think that all of us will be worrying for you until it is done, so that should catch you up... we have got you covered.
Hugs,
Marie who loves kitties
and I am the same with you....Forget it...you are NED now so act like it...We have enough to get through without worrying about uncontrollable issues...You are at your optimum health now and after what you went through to get there do not let this keep you down...There is nothing to worry about until there is something to worry about...Live large and dance naked at every opportunity and enjoy every moment. When I get NED again and I will then you can bet your azz that I will never slow down.....C'Mon buddy Celebrate Life !!! Go out and eat a fine meal and start a new day tomorrow with nothing on your mind but fun and freedom from worry....do it for us and most of all for you......Love to ya..and I will be seeing you soon.......buzz0 -
hey girlBuzzard said:Beth....I have always been up front with everyone
and I am the same with you....Forget it...you are NED now so act like it...We have enough to get through without worrying about uncontrollable issues...You are at your optimum health now and after what you went through to get there do not let this keep you down...There is nothing to worry about until there is something to worry about...Live large and dance naked at every opportunity and enjoy every moment. When I get NED again and I will then you can bet your azz that I will never slow down.....C'Mon buddy Celebrate Life !!! Go out and eat a fine meal and start a new day tomorrow with nothing on your mind but fun and freedom from worry....do it for us and most of all for you......Love to ya..and I will be seeing you soon.......buzz
i am so sorry you are stressing.you sound like me lately i have been stressing over everything.but you do have a right to fight.please if you feel like you need to change oncs then do it.if it will take some of that stress off of you,take care...Godbless....johnnybegood0 -
no scan
First, as others have said, relax-be calm. You have had a bad experience with a poorly trained receptionist. If your ONC doesn't give you the time and answers you need you may have to shop around for a dfferent onc. Some docs need a little help from the patient, like a list of questions to help make sure you get all you can from them.
Be as demanding in the onc offce as you are here on the boards.
My onc wasn't going to show me my scan last April, but I asked if I could see it, which he was willing to do. I asked questions about what I was looking at and found that I had a clean looking scan, a gall stone (his advice don't stand on your head) and calcification in the arteries in my legs ( probably caused by cholesterol).
My onc plans no scans unless the CEA test shows a change in my baseline numbers, 1.2/1.3
I was only 3c, but I would be upset, like you, if the onc tried to move my tests out from every three months.
September 22nd will be only my third test.
I am not worried about the first two or three years. It is after the possible (40% Chance) little survivors, micro-tumors, have had a chance to rally that I am worried about.
I have been lucky that the nurses at the Everett Clinic/Providence Cancer center have been so well trained in making the patient, customer if you will, feel like your needs and concerns are important to them.
They have your picture on file. This leads me to believe the receptionists are trained to review your photo so they will reconize you when you come in for your scheduled appointments. They always remember me no matter how long between appointments.0 -
Beth
Beth,
Looking for a new doc sounds like a good idea. I agree with the group that it is reasonable to spread scans out a bit maybe 6 months. I think docs try to find a balance between being vigilant and not exposing you to too much radiation.
I'm sending you a big hug my friend.
Aloha,
Kathleen0 -
trust your gut after you have calmed down
dear beth,
you'll be fine. i hope you stay 3 monthly.
thats what i have been promised for the next 5 years.
bloods every 3 months cat scans every 6 months, colonoscopies every year.
hugs,
pete0 -
Beth
Being cut loose is scary, my onc said I could come in within 4 weeks not 3 weeks, and I'm like, wow, that seems a long time. I think we just get scared because we're always afraid of cancer growth, or what will the new cancer be mindset, etc., that we sometimes get in.
And if you don't like your onc, find one that you do like dear, trusting your onc makes it easier to be cut loose and liking them helps your progress or so I believe.
So as others said, breathe slowly, it'll be okay.
Thinking of you.
Winter Marie0 -
Thanks everyone
I am sorry for freaking out, what everyone has said is right on and I know it, I just have a hard time, I am scared, scared it will come back and even knowing I dont or cant control that I am scared. Yes its been over 2 years but it seems like just yesterday I went through all the treatments. This journey has left me with some big scars I almost relate it to Post Traumatic stress, to me I did fight in a war, a war for my life. I literally have flashbacks when I smell something that reminds me of the chemo room.
But like many of you have said I do need to start living, to try and enjoy my life, and believe me I want it but getting there seems like I am in a marathon that never ends. Am I a survivor? I dont feel like one, I feel more like a prisoner in my own body and mind. I am not sure if anyone else can relate but I am being totally honest here.
moving the scan dates is like taking away my security blanket, and again it scares me, but I do know the time will come when I will have to do just that, its just I wasnt expecting this time, when I know for a fact that my ONC and I spoke specifically about this last time, so it was a shock and it sent me into a panic attack. So I am sorry.
Its saturday now, going to try and relax and enjoy the day with Wendy.
Thanks again everyone for posting..
Love to all
HUGS
Beth0 -
Hugs Bethdorookie said:Thanks everyone
I am sorry for freaking out, what everyone has said is right on and I know it, I just have a hard time, I am scared, scared it will come back and even knowing I dont or cant control that I am scared. Yes its been over 2 years but it seems like just yesterday I went through all the treatments. This journey has left me with some big scars I almost relate it to Post Traumatic stress, to me I did fight in a war, a war for my life. I literally have flashbacks when I smell something that reminds me of the chemo room.
But like many of you have said I do need to start living, to try and enjoy my life, and believe me I want it but getting there seems like I am in a marathon that never ends. Am I a survivor? I dont feel like one, I feel more like a prisoner in my own body and mind. I am not sure if anyone else can relate but I am being totally honest here.
moving the scan dates is like taking away my security blanket, and again it scares me, but I do know the time will come when I will have to do just that, its just I wasnt expecting this time, when I know for a fact that my ONC and I spoke specifically about this last time, so it was a shock and it sent me into a panic attack. So I am sorry.
Its saturday now, going to try and relax and enjoy the day with Wendy.
Thanks again everyone for posting..
Love to all
HUGS
Beth
Totally understand how you feel, I'm sure most of us have symptoms of PTSD fighters and survivors alike. Try and live your life, but this damn c always at the back of your mind, and crops up maybe a couple of times during the week, urghhhh did I mention I HATE CANCER!!!!!!!
With you girl, but you know you have us to lean on sending hugs again your way0 -
Thanks SonyaSonia32 said:Hugs Beth
Totally understand how you feel, I'm sure most of us have symptoms of PTSD fighters and survivors alike. Try and live your life, but this damn c always at the back of your mind, and crops up maybe a couple of times during the week, urghhhh did I mention I HATE CANCER!!!!!!!
With you girl, but you know you have us to lean on sending hugs again your way
I appreciate your post and everyone elses too.
I got a call from my ONC office just a bit ago, saying that the CT scan was not ordered but was supposed to be, so I was right!!!!! So they are going to call me back with the date of the CT scan, and well I am trying to take it a bit easier, after this one and all is clear, then maybe we can look at going out a bit further than 3 months, I will keep you posted.
And i agree i hate cancer so so so so so so so much...
HUGS
Beth0 -
You, like me, are not a quick change artist :-)
I also do not adjust well to sudden, unexpected changes in plan. Cancer treatment is bad enough when you are on top of the schedule of what scan, what hospitalization and what scan or chemo happens when.
Like last week I went for chemo and stayed 4 or 5 hours without getting any and very slow to even get details of an explanation as to why. Could have handled that better if I had been informed the day before or morning of and didn't even have to show to the clinic for all day for nothing.
Hang in there! At least you got a few days notice and can worry ahead of time if you must.
K10
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