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protocols for follow up testing

adman's picture
adman
Posts: 257
Joined: Jul 2012

I've recently been looking for another Dr to handle my follow up testing. The Dr that did the surgery has only ordered an ultrasound and chest xray, which seems like a light follow up.
My Full-Neph was 07/17/12

Stage 1 5.0 cm - right kidney
Grade 1
Clear Margins
NX

I have been speaking with Urology/ Oncology dept's in a few institutions and it's funny how some think I need a CT w xray, bloodwork, etc every 3 months, and others follow some protocol for a T1b tumor that say a CT every 12 months.

How can these be so different?

adman's picture
adman
Posts: 257
Joined: Jul 2012

FYI....shared from another board I'm on...

Follow-up guidelines after radical or partial nephrectomy for localized and locally advanced renal cell carcinoma [2009]:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2645874/

Surveillance Strategies for Renal Cell Carcinoma Patients Following Nephrectomy [2006]:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1471767/

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

The first person I'd look to for thoughts on this subject is Robin Martinez. You couldn't go far wrong if you follow her advice.

Thanks for the links. The papers you quote are interesting but remember it's not valid to extrapolate from statistical studies to your own case.

adman's picture
adman
Posts: 257
Joined: Jul 2012

Not sure I get your last point, but thanks anyway.

does anyone else have anything to add to this discussion? I figured I would hear from all of the site 'experts' on this one....

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

This applies to any stastics, but I'll use a medical case as an example.

If you are a doctor and a 70-year old male patient who smokes and is overweight comes into your office, you probably know of stastics that apply to such a patient and even the probablility of outcomes.

However it is considered wrong, immoral even, to apply these stastics to the individual who walks into your office because you have no idea where on the bell curve he falls. It is your duty to find out. Barring that, if you have to assume something, assume he is not the mean but could be the extremely fortunate end of the spectrum.

adman's picture
adman
Posts: 257
Joined: Jul 2012

Doesn't seem aggressive enough. Thoughts?

@1 and 6 month: lab of complete metabolic panel (CMP) and no xrays.

@ 1 year: lab of CMP and a chest xray (CXR)

@2 years: CMP and CXR and CT scan

@ 3 years: CMP and CXR

@4 years: CMP and CXR and CT scan

@5 years: CMP and CXR

nyc_girl
Posts: 26
Joined: Apr 2012

Keep in mind that CT scans expose the patient to a great deal of radiation, which can lead to new problems down the road. I think (and hope) that doctors consider stage and grade when ordering follow-up testing - and weigh the risks and benefits of the various screening techniques. I'm sure cost is also a factor.

Stage 1, Grade 3
6mos. - Blood work, Ultrasound, and Chest x-ray
1 yr. - Blood work, CT scan (chest & abdomen)
After 1 year, if all goes well, most likely blood work, ultrasound + chest x-ray every 6 months.

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

As we compare each others follow ups we are comparing apples and oranges or at the very least different kinds of apples and different kinds of oranges. Each doctor has their own tweaks and these change as they see other cases, talk to other doctors, read and take part in studies and still have honest differences amongst themselves. Add to that Insurance and managed care guidelines. If there were not these considerations the nurse could check off your symtoms on a chart and order the tests. While it may be helpful to get an idea about protocol from other members, don't take it as gospel only as general guidelines.

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

A very useful observation, iceman, that I think we should all try to remember in future.

dl650a
Posts: 31
Joined: Feb 2012

In my case, my Doc's protocol (for me) is follow-up chest x-ray and blood work every 6-months for 2 years, then annually until 5 years. In addition there is a CT scan at 2 years and 5 years. My tumor was a T2a and I'm 58 years old.

His comment was that kidney cancers are slow growing and that he feels the radiation exposure from CT scans isn't warranted for regular CT scans.

Everyone's case is individual.

Ed

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

First the good news is that your cancer was caught very early.Probably completely eliminated with surgery. As for exposure from ct scans, I bet I have had at least 15 since last October. Probably another half dozen before the end of the year. I would gladly have settled for only a few. So, I wouldn't be concerned. Wonder what medscanmans take is?

NewDay's picture
NewDay
Posts: 166
Joined: May 2012

My doctor told me that mine was very fast growing, so I don't know that you can make a blanket statement that kidney cancer is slow growing. However, I think that adman's being grade 1 does indicate that his is slow growing, so his followup plan would not need to be as aggressive as someone else's. I think there are so many factors that go into analyzing the cancer's aggressivness(stage, grade, necrosis, histological subtype, sarcomatoid, etc.), as Iceman said, it is hard to compare our plans. I, too, am interested in what medscanman thinks.

Kathy

adman's picture
adman
Posts: 257
Joined: Jul 2012

Does Stage 1 always indicate a slow growing tumor?

Mine was Clear Cell RCC - Grade 1 as well
5.0 cm.
All margins were clear as well.

Digger95
Posts: 59
Joined: Jun 2010

I had the exact same diagnosis as you (same size and everything) and at the time (July, 2000) my nephrologist told me that it had likely taken two years or more for my tumor to reach that size, and therefore was 'slow growing'. For all I know he could have been talking out his arse, but that's what he told me nonetheless... that RCC is generally slow growing.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

We're all amateurs here (a few exceptions like Fox and MedScanMan) so this is just speculation but I think Stage indicates age of tumour and Grade bears more on aggressiveness and hence current rate of growth. Digger's nephrologist was correct in saying that RCC is 'generally slow growing' but as regards his quantification, Digger has accurately identified the orifice from which the pronouncement issued. That's not entirely surprising since nephrologists are specialists on kidneys, not on cancer and RCC will not usually be their focus in the way it is for onco-urologists. Adman's and Diggers tumours probably took around 15 years to reach that size at the typical rate of around 1/3 cm/year. At 9 cm, but of the slower growing chromophobe type (average more like 1/4 cm/year) mine had probably been with me for 30 years or more.

Grade reflects the cellular characteristics (rather than the macro issues of size, location and spread that classify the Stage). A higher grade indicates greater aggressiveness of growth, culminating in the most aggressive, sarcomatoid histology. Since grade tends to change as stage advances, it follows that larger, older tumours will see an accelerating rate of growth. This is of more than pasing interest for some of us and is why I'm having an emergency PET/CT scan in 14 hours time. After maybe 30 years of developing undetected, my primary tumour went from chromophobe to mainly sarcomatoid and put on a great turn of speed. The 2 recurrences I've had, so far, this year, have each gone from a standing start (too small to see) to 2.5 cm in not many weeks. My primary tumour on dx scan was esimated at 8cm and was fully contained. A few weeks later, at nephrectomy, it was 9cm. and had burst out of my kidney (right through Gerota's fascia) at several points, giving me the problems I now have.

So much in RCC is still a work in progress. The estimates of rate of growth are very crude and based on many dodgy assumptions. They're expressed in linear terms but of course tumours are 3-dimensional and, in any case, their characters change with, e.g. vascularisation, calcification and necrosis, to name but a few parameters. Accordingly one can't afford to be dogmatic about these matters but I hope I've given a couple of pointers in roughly the right direction.

adman's picture
adman
Posts: 257
Joined: Jul 2012

Always an interesting perspective. Wishing you well with your tests. God Bless!!

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

After my nephrectomy all I had was semi-annual ultrasounds. I was told that the most likey places to metastisize are the spleen (if I recall), the lungs, perhaps the liver and not the other kidney (thank God).

When the metastisis was found, it was at the very top corner of the ultrasound and they ordered a CT scan to see what it was. They found a lot. I always wondered what would have happened if that lesion was just a little further north.

My concern is, what area does the ultrasound cover? Is it enough?

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