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New to treatment, are so many tests necessary?

moremocha082017
Posts: 1
Joined: Aug 2019

I was diagnosed with colorectal cancer 2 months ago stage IIA. I have had surgery to remove the tumor and so far, they are fairly certain I do not need chemo. I saw my oncologist yesterday for the first time and all of a sudden, he recommended a LOT of further testing and I feel overwhelmed with all the things I need to do. He ordered a PET scan, some more blood tests, genetic testing (I'm 39 with no family history), another CT scan in 6 months. This is all brand-new territory to me. Is that much post-surgery testing normal?  I trust my doctor, but I'm also familiar with doctors ordering things 'just in case' and I don't want to make more appointments than necessary. I figured I'd just be going to see him every few months and maybe have some blood draws to monitor. Does this sound familiar?

beaumontdave's picture
beaumontdave
Posts: 978
Joined: Aug 2013

Hi and welcome. I always feel that way about my onc. and his ultra-careful approach to my body. It especially annoys me when I hear other doctors ending treatment and declaring others safe, cured, or finished, and I never am. However I've heard and known of several 2A's who turned into stage 4's, and it's better to be safe then sorry. In my latest moment of pique the onc. said my CBC and plasma were low so he ordered scoping both ways, a year earlier than my scheduled colonoscopy. I was really annoyed, as I'm 5 years out NED in Sep. Anyway, I do as I'm told, and they find three polyps, first ones I've had since diagnosis 12 years ago. One was the kind that go bad and it was 1.5 cm's, big for a polyp. Suddenly I'm grateful he bumped the scope up a year, and it also focussed my attention on the fact that I've been near-anemic for quite a while, and maybe that's a reason I don't feel so energetic these days. So now I'm supplimenting iron in my diet, and sure enough, some pep is back. Have patience with the testing, you never know what it might catch..........................................Dave

SandiaBuddy's picture
SandiaBuddy
Posts: 858
Joined: Apr 2017

It seems quite standard.  If it does not make sense, you might want to insist your oncologist explain why. You, of course, are the one who decides what tests may be done and when, but if I were in your lucky shoes I would want to stay ahead of the possibility of a reoccurence.

Annabelle41415's picture
Annabelle41415
Posts: 6153
Joined: Feb 2009

I'm so sorry that you have to be here, but also want to welcome you to the boards.  We are a great group that can help you answer almost any question that you have.  Yes, having a lot of tests is necessary for a proper diagnosis.  I've never had a PET scan, but usually a CT scan is done every 6 months for the first 3 years, if no activity, and then 1 year for the next 2 years.  There is usually blood tests done either bi-weekly or monthly during treatment.  It can be that the doctor just wants to make sure that there is no spread of cancer cells after surgery.  Surgery can sometimes release cancer cells into the blood stream during removal of the tumor and that is how it becomes stage 3/4.  I'm not trying to scare you, but that is the reason a lot of doctors do "mop up" chemo just to "capture" those cells that might have escaped.  Wishing you the best and if you need further questions answered, we are here to help.

Kim

cinda
Posts: 14
Joined: Jul 2019

 

 
 
Don't feel to bad I haven't even had surgery and its been 10 months of test after test.  24 raditation treatments with chemo..2 petscans 2 ct scans ,2 utrasounds.5 rectal examies. Last test showed tumor the same with radition damage. so nothing acomplised. So sometime I guess thats the way it is. Most test aren't that bad so its doable. good luck with everything.
 
    
LSU2001
Posts: 22
Joined: Dec 2017

Hello and Welcome to the fourm,

What you described seems pretty standard and common to me.  In 2016 at the ripe old age of 48, I was diagnosed Stage IV Rectal Cancer with all my mets in the liver.  I had over 20 tumors/lesions on my liver so I was initially deemed inoperable.  I had 6 weeks of pelvic radiation that effectivelly destroyed/killed the primary tumor in my rectum.   I had many tests including PET scans, MRIs, CT scans, colonoscopies, sigmoidoscopes,  genetic testing, etc.  One of the genetic tests they did on my cancer was on no use to me, but it is designed to help determine the risk to my children so it was worth it.  

I eventually was able to have a two stage Liver resection with the surgeon removing all the tumors on my left lobe, 3 weeks later I had a portal vein embolization to force the left lobe to grow bigger than usual and then six weeks after the first surgery I had a second resection to remove the total right lobe of my liver as well as my gall bladder simply because it was attached to the right lobe.  I still go to MD Anderson every 3 months for bloodwork, CT scans and any other tests the docs deem necessary.  

Unfortunately, about 6 months after my resections, the cancer reoccured in my liver along the margins of where the original surgery was done so it appears that I will be on chemo for the rest of my life and with that comes constant testing both by my Oncologist and to other specialists he referred me to so that they can be on top of any potential problems caused by the chemo. In addition to my Oncologist, I see a cardiologist, a gastroentrologist, a rectal surgeon, an internist, along with my primary care doctor. my docs are also real quick to order new tests if I have any new symptoms or if they get worse. I prefer the close watch approach my doc is taking but I will admit keeping up with all the doc appts. is tough and can be overwhelming when first starting this battle.

I wish you all the luck in the world and if I can offer any advice it would be to try and ringelax and let everything flow as it should. For me, I had to just let go of some of my control and just do whatever was next on the agenda. worring about every test, every new symptom or anything else was pretty useless for me and it only made everything worse by worring and not resting and making sure my treatments were on course and how effective they have been.

so in the words of Bobby Mcferrin, Don't Worry, Be Happy!!

https://www.youtube.com/watch?v=d-diB65scQU

hope my rambling helps at least a little.

Tim

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