End of treatment and anxiety!

[_Jelen90]

Hello everyone!

My husband is finishing his last cycle of chemo on Wednesday. We are super lucky as he literally sailed through it. No major side effects. It has been almost a year since his diagnosis. Our little family went through a lot..we had our second baby only a week after his surgery.

So far his oncologist is very optimistic. His last CEA was 1.2. He is scheduled for his CT scan on December 6. I don't know how I will wait until then! It's really hard not to be anxious.

Do you get the CT scan results on the same day usually ? He sees his doctor a few hours after. How do you guys survive this crazy anxiety each time before a scan ?

[DarknessEmbraced]

I hope he gets clear scans!*hugs* I have to wait 7 to 10 days for results. I only hear something of my results are abnormal. There is a doctor shortage here so everything is slow. It's hard waiting for results!*hugs* I try to distract myself by doing things I enjoy.

[Mohrfamily]

How do you guys survive this crazy anxiety each time before a scan ?

Well, thats a good question. I've been on this ride with my DH for over a year and a half now and he just had surgery 6 days ago. Lots of scans, lots of differing opinions, lots of medical mumbo jumbo that almost makes you feel like a med student.

Truth is with all things related you roll with it, you have to or it will drive you to the funny farm. The first few months of DHs diagnosis I was in a constant state of despair, desperation, and a whole bunch of other things not to be dwelled on. Fact is this is the "new normal" if I flip out waiting for every scan I would be in a padded room by now, because there's been a lot of them by now. It's amazing how I can talk about a hepatic arterial pump (HAI) and people look at me funny, then you realize you have you dumb it down.

I like to think it takes strong people.

[NHMike]

I can read the scan results in he online hospital portal. So make sure that you are set up with that. If the pathology report is read locally, then you should be able to see the results the same or next day.

Sometimes reports are embargoed. That is you can’t see the results unless the doctor releases them.

[Punky44]

It’s awful waiting for scan results and I still haven’t figured out a way to not totally drive myself crazy, so I’m no help there, but just wanted to send you good vibes for your upcoming scan.

[Siti]

For the private hospital in Singapore we got the results just a few hours after and for public hospital in Amsterdam 1 week later.

The wait can be totally awful but we try not to view anything on the hospital web portal prior to seeing the oncologist cause it would cause more anxiety if the results weren’t good.

My husband always tell me, worrying ain’t going to change the outcome so we just hope for the best!

Wishing your husband NED forever

[Rock_Robster]

The results from my scans are usually “available” the following day. However after a few poorly managed results rounds early on, my approach now is to book both the scan and a follow-up session with doctor afterwards, and then I know exactly when I’m getting the results. This could be the following day, or up to a week later depending on their schedule. But it means the scan itself is actually irrelevant to me (just something else on the to-do list that day), and also that I always have an expert to explain the results to me and answer my questions.

This avoids all the issues of:
- reading my own results online and freaking myself out or misinterpreting something (happened)
- Waiting for a call for results and not knowing when it’s coming, hence spending several days anxious and with my phone (happened)
- Getting sick of waiting and calling myself, only to be told that he wanted to take my results to their board review first - freaking me out much more! (happened)

Best of luck with it,
Rob

[Gravelyguy]

At my local hospital, scans would take several days to get the results. At Mayo, i have the scans in the morning and results with the Oncologist in the afternoon...I much prefer the Mayo method.

Dave

[Jacques]

From your original post it appears that DH will soon be transitioning from active treatment into the 5-year surveillance period. In this case, the most urgent task is to insure that DH has been given a "Survivorship Care Plan" to follow over the next five years.

What DH should be concerned about in the next week or so is not so much whether the scans or scan results are being done quickly but whether the doctor is working on DH's Survivorship Care Plan. Do they have a plan for him? If not, when could they generate one?

This is important because your meeting with the doctor now will probably be the last meeting until whenever the next followup exam is scheduled. But now is the time when the patient's one-page Treatment Summary should be generated and when the patient's 5-year Survivorship Care Plan should be finalized.

In my opinion, that is the main thing that you and DH should be worried about right now.

• Survivorship Care Planning - M.D. Anderson Cancer Center
  https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/survivorship/survivorship-rectal-web-algorithm.pdf
  
  https://cms.mdanderson.org/access/content/group/Colorectal%20Cancer%20Survivorship/content/courselist.html
  .
• Treatment Summaries and Survivorship Care Plans (TS/SCPs)
  https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59801&p=475292#p475292

...The bloodwork next week is important because it represents the baseline for your 5-year surveillance program. For this reason, it makes sense to have a comprehensive blood test, including all of the major blood panels, plus certain key additional tests, even if you have to pay for some of these tests yourself.

Member rp1954 has written about this many times. Here are some examples of his posts on the value of having good, comprehensive baseline data to work with during the 5-year surveillance period:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=55285&p=438646#p438646

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52840&p=416346#p416346

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50038&p=380871#p380871

= = = = = = = = = =- = =

... How do you guys survive this crazy anxiety each time before a scan ?

As for advice for surviving anxiety, here is a link that advises "staying busy" doing anything ... anything except thinking about anxiety.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=12304&p=92813#p92813

And here's another link on scanxiety:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=11940&p=89776#p89776

If you need more tips than that, you can search the Internet for keywords CONTROL ANXIETY and you will find a lot of options to explore.

[_Jelen90]

From your original post it appears that DH will soon be transitioning from active treatment into the 5-year surveillance period. In this case, the most urgent task is to insure that DH has been given a "Survivorship Care Plan" to follow over the next five years.

He had a phone consult with his oncologist and everything is set up for the next 5 years. He was part of a clinical trial for the use of Statins during chemoradiation so he will be seen more often for that reason and he will not only have follow ups with his oncologist but with his radiation oncologist as well, which is a huge plus I guess. If anything happens we will catch it on time.

Thank you Jacques for your reply and for those very useful links .

[horizon]

How do you guys survive this crazy anxiety each time before a scan ?

It really sucks but it got better from me the further I got from the end of my treatment. When I was where you're at the wait was unbearable.