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Numero Uno Scan post Operative.

Skagway Jack's picture
Skagway Jack
Posts: 68
Joined: Oct 2013

So tomorrow I go in for my first post operative scan.  Barium sulfate cocktail at 10 pm followed by another in the morning.  Chest and abdomen.  Now the concerning part besides the obvious is that this appointment had been set up since November.  I returned from a business trip this week, and I had not heard anything about prepping for a scan.  I had assumed that the scan would occur on Tuesday when the Dr. appointment was scheduled.   For whatever reason my antenna went up and I decided to call and verify things prior to the Tuesday appointment.  I called the cancer center and they verified the Dr. appointment, but said they saw nothing about a scan?  My question was simple enough,  "I was under the impression I was due my 6 month scan when does that occurr?"  They said they would call back.  They did call back about an hour later and asked if I could come in for a quick blood test.  They scheduled me for the scan on Monday.  

Is this normal, or would it be reasonable to assume that the cancer center would be tracking when I would need a scan and call and set that up?  What exactly would I be discussing with the oncologist if I had not had a scan?  Admittedly I am a bit anxious even though I feel mostly healthy.  I swim bike and run 4- 5 days a week and am working 10- 14 hours a day.  All comments welcome.

sblairc's picture
sblairc
Posts: 77
Joined: Feb 2014

It was left up to my husband to set up his first set of post op scans. After his consult with an onc, they gave him a number to call. I wouldn't ever leave it up the the doctors to make sure you are followed up.  I have learned, in this short amount of time, that it's important to advocate for yourself and keep track of everything, get copies of test and ask lots of questions because sometimes doctors are wrong and mistakes can happen. One example: if we hadn't gotten an oncology consultation after the neph,  my husband would have only gone for a scan at 1 year which turned out to be incorrect.  Luckily, we got a consult with an oncologist and now he's going in April for 6 month scans. 

foxhd's picture
foxhd
Posts: 1873
Joined: Oct 2011

Yep. Jack you are. If there is one good lesson to learn from reading this forum, it is to be your own advocate. Good catch.

Skagway Jack's picture
Skagway Jack
Posts: 68
Joined: Oct 2013

Fox,  Yep I know we have to be our own best advocate, and that is why I called to verify things and push for the testing.  I just find it a little disappointing that they were not more on the ball about it at the cancer center.  I look forward to my first offical NED.  I will continue to assume they are not tracking for future test as well. 

 

Srashedb
Posts: 167
Joined: Dec 2013

you sound like my husband expecting a call to set up scans and follow-up. Not even about best advocate but unless the oncologists have no other patients, how did you guys think the appointments happen?

don't mean to give you a hard time, Jack

Sarah

foxhd's picture
foxhd
Posts: 1873
Joined: Oct 2011

I went to Dana Farber for a consult. I had a pet scan and they never contacted me again. I knew then and there that I wasn't going to be treated there. But if they had contacted me, I might have stayed with them and never been lucky enough to go to Yale. The consult was for a trial for votrient. Glad it all never happened. But when something doesn't feel right, you have to take action.

Skagway Jack's picture
Skagway Jack
Posts: 68
Joined: Oct 2013

Sarah,  This isnt my first appointment with the oncologist, so I falsely assumed since we discussed the 6 month scan that his office would order it when they made my appointment for the check up with the Dr.  I think most doctor offices will order these test but perhaps I am wrong.  Fox may be right that I may need to reevaluate my patronage.  If they miss the managing the details of small things who knows what else they might miss? I don want to seem too critical, but my Urologist office was always clear on where and when test were scheduled/expected I expected no less from a "cancer center".

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

I would have expected the same thing. They should be on top of that. But it definitely is one more example of how we need to question things and act on them. Beause of your post I am going to call my oncologst and inquire about blood work and chest xray. I was given a scan appointment and follow up appointment, but no bloodwork or xray requisition.

Good luck with yours!

Jojo

Srashedb
Posts: 167
Joined: Dec 2013

joJo, bloodwork needs to be done before any scans since the creatinine level will determine whether contrast can be used.

My husband's chart after November said "scans and follow up appointment in 3 months, May 25, 2014". 

So, it was up to us to set up an appointment and they asked if we wanted to set up scans (which would be choosing specific date) or have them schedule.

This is a large university department so maybe smaller, private practice is different.

Bottom line: we need the information for our lives.

Sarah

Skagway Jack's picture
Skagway Jack
Posts: 68
Joined: Oct 2013

Ok, so I went to the Oncologist this morning.  The good news first....Chest CT  NED.  The abdominal CT howver was not so definitive.  To quote "8mm low attenuation lesion in the posterior cortex of the lower pole of the left kidney, not visualized on previous study. No evidence for recurrent mass in right renal bed. A loop of small bowel agruably descending the duodenum apperars to be adhesed into the postoperative the right renal bed, an area which was not adequately studied on the comparison CT scan of the chest."

The Doc says no need to worry, but he bumped up my scan to three months versus 6 months.  He also asked when I was scheduled to see my urologist again and was pleased when I said that appointment was next month.  with regard to the above discussion about scheduling of the scans etc....this time they scheduled the whole package in one swoop with me prior to leaving the office.

So I have CT's from prior to my surgery and they should be able to look at the left kidney to see if there were lesions on the previous scans, but this office had only done a chest CT previously which just caught the top of the kidney.  I dont recall this having been noted on my previous scans from the urologist.  Impression from the radiologist "8mm low attenuation lesion anterior aspect interpolar left renal cortex. Lesion is indeterminate."  This is not the NED I was looking for, but it may be no biggie.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

8mm is really tiny (0.3 inches), likely too small for them to even hazard a guess. Moving the next scan up just means lets watch it and if there are any changes work on a better diagnosis then. From what I understand small anomalies in our kidneys are pretty common and nothing to worry about unless they grow. Just keep an eye on it.

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Well, Jadk, let's look at it as a NEd. It is kind of a let down, because we would all rather hear the "all clear" words coming out of the doctor's mouth. But after reading what garym had to say, I would tend to believe that all is good. Try and enjoy the good news!

Hug

Jojo

Skagway Jack's picture
Skagway Jack
Posts: 68
Joined: Oct 2013

Jojo,  Thanks, you are right I should dwell on the good news and not get alarmed too easily.  I did ask if my urologist could review the scans and compare to previous.  He was kind enough to call me back and say he would have a look.  I am no xray tech, but i know enough to run the software and compare side by side.  To me it looks the same between the CT taken in Sept (when they identified my RCC) and now, minus one kidney of course.  The report from the radiologist in Sept specifically said the left kidney was unremarkable.  I am going to leave it to the experts for now, and not give it more concern. 

My daughter has asked about doing a triathlon with me in May so I will put my effort there.   It will take some effort since I am so much slower than I used to be.  Thanks.

 

 

 

Skagway Jack's picture
Skagway Jack
Posts: 68
Joined: Oct 2013

All I want to know is that whatever is showing on the left kidney is not new....or any larger than before.   It appears that i will have to wait to the 17th to get that answer.  No matter how much I call the Dr's officer I cant seem to get an answer.  I did my blood test again today.  If this mass is new i can deal with it....but the waiting is a pain in the kiester!!!!

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