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Disappointed in my doc

cancerat46's picture
cancerat46
Posts: 52
Joined: Feb 2013

I'm 3 years post nephrectomy (stageT1b, grade 2) and all has been very well.  That being said, my urologist (same doc that performed by radical nephrectomy in Feb 2012) told me back in the beginning of this that my follow up would be CT scans in years 1, 3 and 5 and chest x-ray and labs only in years 2 & 4 I thought that sounded fine.  This month is my 3 year follow up and his office called and said he just wants chest x-ray and labs this year.  Though I get rather anxious about CTs (as do we all) I also WANT a CT to make sure everything is A-ok.  Getting just a chest x ray and no abdominal CT at all actually makes me more anxious.  I'm going to go ahead and do what he has ordered, but when I see him I'm planning to tell him I want my abdominal CT....for peace of mind if nothing else.  Am I being a hypochondriac?  Does it surpise anyone else that he is changing the plan?  Would it bother you like it is bothering me that he is not doing the better test?  Just need a sanity checkLaughing

icemantoo's picture
icemantoo
Posts: 3221
Joined: Jan 2010

Cancerat46,

Apparently your uro thinks you do not think you need as much follow up as he thought you needed 3 years ago. Maybe he changed his mind. Maybe there are insurance questions. Maybe he is relying on new guidelines or discussions with colleages. I am 12 and 1/2 years out. My uro sometimes has changed the test routine. You did not give the size of your little bugger for others to offer their view.

By all means question the uro as the reasons for his changes. If not happy with the answers seek another opinion. He may up the ante when he hears of your concern

 

 

Icemantoo

 

PS You are still sane, but maybe I don't know you that well

 

cancerat46's picture
cancerat46
Posts: 52
Joined: Feb 2013

My bugger was 5.5cm.  Yeah if you knew me you might not say I'm still sane- LOL

Billy's Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

In my opinion you are not only sane but very realistic and diligent!  Always go with your gut!  I too wuld be very upset if they changed course.  There might be a simple explanation like insurance or error but whatever the reason do not accept it and get that CT.  You need it and deserve peace of mind in the better safe than sorry world.  As Iceman stated if you do not like their reasons seek another opinion.  You are the customer and the doctor works for you.  If you are not happy find another doctor who shares your concern and understands how it would feel if he was the patient.  Stay diligent and sane--lol.

Arleen

cancerat46's picture
cancerat46
Posts: 52
Joined: Feb 2013

Arleen,

Sorry I'm a bit behind on my responses.  Thanks for validating how I feel about the change in plan!  Its weird, when my husband was very sick and going through treatment (systemic scleroderma), I was an absolute bulldog and had no quams about letting the docs know when I wasn't happy with the plan (or lack there of).  But when it is about me I feel like I'm blowing things out of proportion.  I need to be my own bulldog too, huh?  Thanks again!

Jmat23's picture
Jmat23
Posts: 23
Joined: Mar 2014

As Icemantoo advised, there are many reasons why your uro has changed the surveillance plan. Perhaps he is also concerned over radiation exposure via CT scans. My uro was which is why he changed his plan to a chest x ray and abdominal/pelvic ultrasound for my last scans last week (I had a 7.5cm, grade 3, Stage 2a lesion removed in October 2012).

It always pays to ask why the plan has changed and also seek another opinion if not happy. Perhaps a comprimise can be made and an ultrasound performed instead? I know they are not as senstive as a CT but they are an option which seems to be used quite regularly for surveillance in Europe, particularly for low/intermediate risk tumours. If anything suspicious shows up in the ultrasound a CT can then be ordered.

cancerat46's picture
cancerat46
Posts: 52
Joined: Feb 2013

I will ask about ultra sound if radiation is his concern.  I hadn't thought of that.  Great idea!  Thanks again!

a_c
Posts: 4
Joined: Mar 2015

Yes, I second Jmat23; a single CT scan subjects the body to 150 to 1100 times the radiation of a regular x-ray, so he might be trying to juggle the risk vs. reward.

jason.2835
Posts: 337
Joined: Nov 2014

This is also one of my biggest concerns, as well.  You want to make sure that your medical team is doing their utmost to give you the care that you think you need, but that doesn't always align. In my case I had a very small tumor (2.8 cm stage 1, grade 2) and everything I am reading is that the scans are very minimal and apparently I'm supposed to swallow that. I know that it will get easier with the passage of time. And I know imaging tests are expensive. I also know that those who are in more advanced stages of the disease need the resources far more than us Stage 1'ers.  

THAT BEING SAID, everyone has the right to question and request further tests. In your case, you already had a plan on the books and you can certainly pitch a fit if your doctor has decided to change that plan to give you inferior testing. It's hard to demand changes in medical care. You want to believe that they have your best interests at heart. But, at some point, it is easy for people to slip through the cracks.

If it were me, I wouldn't let that happen.

cancerat46's picture
cancerat46
Posts: 52
Joined: Feb 2013

So it turns out his scheduling staff made a mistake and he wants an abdominal CT after all. I'm so glad he wanted to go ahead with the CT.....just gives me peace of mind to have that look see. CT is scheduled for day after tomorrow. The chest x-ray was all clear and the blood work was perfect. He said my kidney function is better than a lot of people with 2 kidneys. He told me that after 3 yrs he expected some decline in function but it hasn't dropped at all. Go left kidney go!! Basically he thinks my right kidney (the cancerous one that was removed) was not working at all before removal. Good ridence to dead (and potentially deadly) weight! Ill let ya know how the CT goes......but I'm anticipating NED will be paying me a visit!

icemantoo's picture
icemantoo
Posts: 3221
Joined: Jan 2010

cancerat46,

 

I forgot to add scheduling mistake to my earlier comment.

 

 

Icemantoo

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