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Update Janae

janaes
Posts: 751
Joined: May 2016

I dont come post about me too often any more but wanted to today.  I had a follow up appointment today. Its been almost two years since i finished treatment. Every thing looks good according to the physician assistant ho did my appointment. I have no new symtoms. About a year and a few months ago i had a cat scan that was clear. I was a little shocked to here the physician assistant say that we might want to do a cat scan.  Well she talked to the other PA that ussually sees me and both decided for me to get one because of the MMMt type cancer that was mixed with the cancer.  I dont know how i feel about it. They always told me in the passed that they will only do cat scans if i had symtoms.  I had that im my mind all this time and had prepared myself to not know the little things.  I guess i will be doing it though. I just might have to prepare myself.

Janae

Armywife's picture
Armywife
Posts: 276
Joined: Feb 2018

I really think it's a thing!  Of course it's unnverving to approach a scan - as long as you don't have a scan, you don't reeallly know for sure, right?  And your mind can go places - for example the scan I had last week, the rectal contrast spilled out, and I don't think they got a good look at the lower abdomen and I'm going to worry about that all the way til next year when I can ask for another scan.  It's just what we do.  You're not alone - let us know how it goes!

derMaus's picture
derMaus
Posts: 555
Joined: Nov 2016

I think we all hate scans and the anxiety they bring. BUT, even worse, I'd hate for something to go on long enough until it caused symptoms, which would mean that the horse is out of the barn yet again. I know the 'no scans unless symptoms' is a common approach, but I've never been able to get a clear definition of what symptoms they're looking for. For example, my mets were to my retroperitoneal lymph nodes along my spine and up toward my kidneys. I wonder how large/extensive they would have had to be for me to have symptoms from them; pretty big is my guess. So overall I was happy they did a scan, found 'em when they were small, and were able to CyberKnife them out of existence. As a result, I've become a reluctant fan of scans (no pun intended).

Soup52's picture
Soup52
Posts: 900
Joined: Jan 2016

i too am two years out from end of treatment. It’s been about a year from last scan. I will see thePA in Dec and my original oncologist has moved away. Like some of the rest of you I wonder about symptoms, too. I’ve continued to have intestinal issues and have seen gastro PA, but I still wonder, will the cancer go there?? I’m really hoping they will give me a scan. Mine was clear cell grade 3 and  stage 3 C. I’m not a pessimist, but I often wonder how could I be this lucky for it not to come back?....

Denise66
Posts: 56
Joined: Aug 2018

Hey Soup52,

 

My cousin had clear cell in 2008.  She never had a reoccurance.  

 

MAbound
Posts: 847
Joined: Jun 2016

Post treatment anxiety about recurrence is a reality I think we all have to live with. Anxiety goes up before each follow-up exam. We worry if a test is going to show something. We worry if we don't get testing that would catch something early. After all that we have survived, it's just hard to believe that maybe we're going to be ok. The only way to live with it is to only think about it when you absolutely have to which is usually when those follow-up exams and tests or lack thereof start to loom large. It's part of our new reality and how our lives have changed from what they used to be.

CheeseQueen57's picture
CheeseQueen57
Posts: 791
Joined: Feb 2016

If I hadn’t had a scan, we wouldn’t have found my reoccurrence. Now they’ve been extended to 6monthsbit I was getting them every 3 months. And my doc is fairly conservative. Stage 3C, Grade 3

cmb's picture
cmb
Posts: 349
Joined: Jan 2018

My doctor also told me that he doesn't routinely order a CT-scan unless I have symptoms, which I found worrisome as I had no symptoms other than vaginal bleeding when I was first diagnosed. But he did order a scan in June because I had one isolated incident of bleeding in the spring. At that time he also commented that he may order another scan in a year.

Assuming I don’t have another reason to have a scan before then, I'm definately going to push for another one next year.

janaes
Posts: 751
Joined: May 2016

Thanks my friends. I remember the first scan i got i accually requested it because no one would do one. Ijuat felt i wanted to know if the chemo got it all. All i had to go off was my CA 125 and it was low but the problem was i never tested when the cancer was in me so i wasnt sure if the CA 125 told me any thing.  I guess i do have the scaxiety this time knowing they can find little things that might be nothing but just give me the axiety that it might be cancer.  Its just been so easy to just leave the doctors office in the past believing that sinceci have no symtoms i just get to move on with my life.  And i did too. Except for my skin cancer hicup last year.that only took a monrh to resolve.   You guys are great here. We are never alone.

EZLiving66's picture
EZLiving66
Posts: 1330
Joined: Oct 2015

I had x-rays and a scan of my pelvis last July because I was having a chronic backache. After looking at my medical history they wouldn't even try any treatment until they were sure the cancer hadn't come back in my bones/pelvis. They found nothing but.....they did not do a complete body scan either. What if the cancer had moved into my brain? my neck? my legs/feet? my arms/hands?  So, even though they checked out the symptoms, they didn't check my whole body and told me, unless there are symptoms, they won't. By the way, they told me I had spinal cord compression in my lower back which, they said, was common in anyone over 60. And, it's the reason I went from 5'9" in high school to 5'6" at 66. At this rate, I'll be two feet tall by the time I'm 90!!  LOL

Love,

Eldri

Kaleena's picture
Kaleena
Posts: 1935
Joined: Nov 2009

Scanxiety. 

It doesn’t matter whether you get scans or you don’t.  At one time or another you will get anxiety.   Every time I get a scan I get it.  I may not say anything or act like I do but I get it.   Once I went through a time when I had different insurance and said I didn’t need scans And I didn’t have a scan for over a year.   Guess what. I got anxiety because I wasn’t getting scans!   I had an MRI in July And before that a CT and MRI in Februar.  My next scan is Nov 1.   We are here with you.  Concentrate on the positive.  Congratulations on being two years out from treatment!

Hugs!

Kathy

janaes
Posts: 751
Joined: May 2016

Yea Edri now that i think about it i was a little disapointed with my first scan because they only did my abdomen. I did worry just a bit that my cancer had spred. 

Good advice Kathy. I am goingvto try to remember how great it is to almost be two years out.  Woo hoo! It wasnt to long ago i was doing all the treatments. It does feel good.  So far so good. Im going to take what i have and enjoy it.

wolfera
Posts: 46
Joined: Sep 2018

Hey Janaes - did you get your scan?

janaes
Posts: 751
Joined: May 2016

I wii try to chime in when i get it done.

wolfera
Posts: 46
Joined: Sep 2018

Sounds good! Best of luck!

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