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Is 6 month CT scan correct protocol?

rn1774
Posts: 9
Joined: May 2018

Today, I went to see my oncologist Dr. Randall at UCSD for my 3 month post surgery CT scan and blood work. The result is NED and my blood work is great so therefore my oncologist set me for CT and blood work every 6 month instead of 3 month.
I told my Doctor that I am not comfortable to have 6 month CT scan because on my pathology report show sarcomatoid and necrosis feature and my cancer is very aggressive.
My doctor said base on the guideline of my age and the size of the tumor, 6 month CT scan correct protocol.
I am 39 year old, stage 1, clear cell, 4.6 cm with sarcomatoid and necrosis feature.
I supposedly assign to Dr.Mckay but unfortunately Dr.Mckay is on maternity leave so therefore I was assigne to Dr.Randall.
I am not sure if 6 month CT scan is the correct protocol?
Thank you for the feedback and advice!

icemantoo's picture
icemantoo
Posts: 3208
Joined: Jan 2010

m1774,

 

You can always get a second opinion. Six months is a fairlyagressive schedule for CT's. Oter factors to consyder, cumulative effects of too many CT's, the fact that it takes time for something to appear and insurance guidelises. Discus this further with your onc(s).

 

 

icemantoo

APny's picture
APny
Posts: 1934
Joined: Mar 2014

I would think 6 month protocol is fine for stage 1 after the first year. Given the aggressive nature of your RCC maybe for the first year you should keep to the every 3 months schedule. But yes, discuss this with your oncologist.

rn1774
Posts: 9
Joined: May 2018

I did discuss with my oncologist every 3 month scan giving the aggressive of my RCC but he insist 6 month is the best course for me

Optimisticgirl's picture
Optimisticgirl
Posts: 81
Joined: Aug 2017

My husband had nephrectomy one year ago in Sept. He has had 1 ct scan since surgery and Dr wants to increase length of time already to once a year with chest X-ray in between. Ccrcc Stage 1b, grade 3, some necrosis.  At some point you have to weight the negatives of all the tests and learn to trust the Drs knowledge.  

lobbyist0724's picture
lobbyist0724
Posts: 383
Joined: Sep 2016

I agree to the other to have a 2nd opinion. Also, you didn't mention the grade, which is a prognotic factor to determine the follow up schedule as well. Perhaps having an Ultrasound in-between if you are concern about it?

Bart1978
Posts: 25
Joined: Aug 2018

Hello and I hope you all are doing well.

On Monday, it was confirmed via CT abdomen that I have a 2cm RCC in the interpoar region of left kidney fully contained with no abdominal evidence of metastis. But, also a .3 cm pulmonary nodule that showed incidently in the right middle lobe.  Follow up chest CT said no definite pulmonary metasticsis and suggested the nodule to be most likely just inflammation but ordered attention on follow up. Uroligist, surgeon, and GP all support the inflammation statement.  They all tell me I am lucky for finding this as I did; with symptons which turned out to not be associated with this.  Groin pain led me to coax my GP into a US Scrotum and US kidney.  The groin showed nothing but a trace hydrocele, but the kidney showed a hump leading to the CT abdomen.  The kidney is the problem for sure but the nodule is what is driving me crazy.  Anyway, I have 2 more opinions/consults remaining but my options appear to be partial lephrectomy, (either lap robotically or open excsision), or cryoablation via lap.  To this point there is no opinion in favor of full nephectromy since the tumor is small and in a good place away from stuff and easy to reach. I'm 58 / don't smoke / grandfather on my dad's side died of KC back in the 50's / my dad is 89 and just develpoed non small cell LC.  He smoked for 40 years; quitting for the last 30.

Thanks for listening. I would be happy to share more or answer any questions. Just writing this was helpful to me.

 

icemantoo's picture
icemantoo
Posts: 3208
Joined: Jan 2010

Bart,

 

Start a new forum post. Also double check the size of your lung nodule.Your  reported follow up on that suggests 3mm not 3 cm.

 

 

icemantoo

Bart1978
Posts: 25
Joined: Aug 2018

My first post and I did this wrong.  I should have filed a different topic.  So sorry.

CRashster's picture
CRashster
Posts: 229
Joined: Mar 2017

I was T3a with a 10cm tumor. My scans were 6 months for 2 years, every time NED. I've discussed my treatment with my GP and an oncologist and every time it comes back to the same answer. I'm getting proper treatment for my situation. Sometimes, you have to trust the doc.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

If your doc is a medical oncologist with lots of RCC experience, I'd trust him/her on the followups. If it's a regular oncologist (no or very little RCC experience) or if it's a urologist or a urologic oncologist, not so much. I don't know your doc. The protocols have been accused of being too lax and err on the side of missing some recurrence.

6 months isn't horrible.

I was Stage 3 and Grade 3 with 3 month followups the first year, 6 months the second year. Then I had a recurrence and tumor removal and I have been on 3 months followups ever since.

Are you getting chest/abdomen/pelvis CT with contrast? That's the best IMO. Some docs are stopping at 5 years. This I absolutely don't agree with. I have a few friends with recurrences much further out. I would rather catch things early while it may be operable.

You have a mixed case for recurrence risk. Stage 1 has a low risk, but then you have other features that drastically increase your risk. Can you find an RCC medical oncologist for their opinion? If your doc is one, then I'd trust him. Second opinion definitely would not hurt at all. Get one if you feel uncomfortable. Try to get one unrelated to the first one (not a friend, coworker, or mentor).

Todd

Hoss79's picture
Hoss79
Posts: 78
Joined: Nov 2017

My Dr told me they were going to watch me for 10 years. Even after that I would still want to be scanned.

Hoss79's picture
Hoss79
Posts: 78
Joined: Nov 2017

I went 3 months after my radical neph. Got a CT of chest abdomen and pelvis. Thank the Lord it was all clear. That graduated me to 6 months. Just had those scans done last month. Again thankful for the NED. The Dr said I graduated to a year. While I agreed with him I’m going to go get a second opinion as I’m entitled to it. Am I over reacting? Maybe but we have to be our own advocate.

Rightasrein
Posts: 6
Joined: Mar 2019

hi 

i Had  unclassified mixed RCC grade 3 State 1. They are only doing a follow up in 6 months..

i am worried because it has been 3 ½ weeks and I still have pain burning and bloating after robotic partial nephrectomy 

 

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