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Chromie Testing

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

i am due my first six month scan after my LPN in Sept 17

i have been put on a low risk regime which means first scan will be a US

panicking:

1) they find something

2) how much will a US really see

3) will it detect lymph nodes if swollen

I will be demanding more tests after this... the fear is off the scale

Annie

 

stub1969's picture
stub1969
Posts: 815
Joined: Jul 2016

Hi, fellow chromie!!

Honestly, I'm surprised that your doctor you getting only an US on your first scan---even with the size of tumor you had and the varient of Chromophobe RCC.  I'd encourage you to search recommended follow-up procedures for stage 1 RCC to guide you.  If it were me, I'd push for CT scan.  

Please keep us updated.  

Stub

rdoyd2
Posts: 79
Joined: Aug 2016

I was diagnosed with stage 2 , 11.7 cmchromophobe on11/12/13. I have had a whole body bone  bone scan, and had a Ct scan 3 months after neph and then had 4 more every six months, after that I went to yearly at year three. at year four I had X-ray and us. Next year I will have chest abdomen pelvis Ct scan. I will now be alternating between X-ray us every other year for o quess the rest of my life. I also have kidney function tests and blood work once a year when I have my yearly checkup . I think you should have chest abdomen pelvis Ct scanevery six months for the first three years at least . You should seek another doc if needed. It is rare for chromophobe to return but it does happen.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

Thank you both I’m so happy to see that you are both doing extremely well. That  gives me so much hope for the future.

 Well I am back and I will admit that was very stressful.Radiologist said that it looked all clear on both kidneys

 She said she could not even see any scarring on my right kidney and she would send the full report to my consultant.

 However are you agree with your both. She might as well have been looking for the man on the moon just because she didn’t find him doesn’t mean he’s not there;

I asked about llymph nodes  but the US will not pick them up unless they are very enlarged

 I love my consultant and he is always there for me..  he is very thorough and leaves little  to chancE

 The problem is my hospital is following the European renal cancer follow-up guidelines .

But the decision on the follow-up is not made solely by the consultant but by the multi disciplinary team that my case is under

I am seeing my consultant in two weeks time and I will demand  a ct scan. He did give me an ultrasound at three months outside of the guidelines And he did arrange to see me every two months to ensure that I am okay As he understands my issues around  losing my husband to cancer

 But there is no way I am going to go through this again 

I am home and have no real sense of comfort as I am I unsure what they may have missed

Of course they are following the data which says that my size rarely spreads and rarely recurrs

But I ain’t about to be the  one that upsets the norm  especially as over the past 48 hours I have had a very weird burning sensation in my pelvis area

 It seems to be going away what does that mean ???   

 I thought things might of got a little easier after the operation turns out no they don’t 

 The other problem is that they plan discharge of the five years but I told him I’m not going anywhere and he laughed and agreed to that one 

I think it was Mayo that reported recently at all Low risk renal  cancers should be followed up for a period of 15 years But  that does not appear to have filtered over to Europe yet

But I willbe very kindly and firmly 

assuring them that that is what I am going to get

 NOW  where is that GIN

 

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