Scan Day

Shecka1121 · January 2016

Hi All, I can't believe it has been six months since my partial. I have done my best to live normally and try not to think of cancer too much. Some days are fine and other days it is still a mental struggle. I go in today at 11 am for my MRI. I get the results on the 25th. in the doc office.

I had a question for you all. I am stage 1, mass 1.2 cm, grade 2. I am 44 years old. I am at UCSF Cancer Center so one of the best hospitals. My urologist/oncologist is strong willed on me not getting CT scans but MRIs because of my age, 44. She is concerned about the radiation. I am concerned that a MRI does not pick up lung activity.

Does anyone out there have any thoughts for Stage 1, very early stage 1 MRI vs CT.

My scan schedule is every 6 months for three years and then annual for the rest of my life.

Many thanks

APny · January 2016

Wishing you the very best

Wishing you the very best test results. The follow up protocols are different for different stages and grades. I'm being treated at Sloan Kettering and don't get CT scans, just ultrasound every six months and chest x-rays. I believe it's because I too was a stage 1. I know many on the forum say US is not as precise as a CT but perhaps that depends on the equipment itself and the skill of the radiologist because mine picked up two sub-centimeter cysts on each kidney during my last two scans. So obviously they can detect small growths. And I do have faith that oncologists at MSK know what they're doing. If you don't feel comfortable with an MRI say so. I thought MRI is not often used for follow ups and they either use CT or US but of course I'm not a physician.

foxhd · January 2016

APny said:
Wishing you the very best
Wishing you the very best test results. The follow up protocols are different for different stages and grades. I'm being treated at Sloan Kettering and don't get CT scans, just ultrasound every six months and chest x-rays. I believe it's because I too was a stage 1. I know many on the forum say US is not as precise as a CT but perhaps that depends on the equipment itself and the skill of the radiologist because mine picked up two sub-centimeter cysts on each kidney during my last two scans. So obviously they can detect small growths. And I do have faith that oncologists at MSK know what they're doing. If you don't feel comfortable with an MRI say so. I thought MRI is not often used for follow ups and they either use CT or US but of course I'm not a physician.

I used to

tell my dentist to skip yearly x-rays to avoid radiation. At this point if radiation was money, all you guys would have a few pennies in your pockets. I'd be lighting cigars with thousand dollar bills. If problems were to develope it wold take decades. Lost hair, missing teeth, hip fracture. Sounds like old age to me. Something you'll never experience if your ultrasounds miss the tumors. Use of US and not ct scans are why I'm in this situation now. I wish no one ever has to follow my footsteps. I almost guarentee the only reason ultrasounds are ever ordered is because they cost less.

Shecka1121 · January 2016

foxhd said:
I used to
tell my dentist to skip yearly x-rays to avoid radiation. At this point if radiation was money, all you guys would have a few pennies in your pockets. I'd be lighting cigars with thousand dollar bills. If problems were to develope it wold take decades. Lost hair, missing teeth, hip fracture. Sounds like old age to me. Something you'll never experience if your ultrasounds miss the tumors. Use of US and not ct scans are why I'm in this situation now. I wish no one ever has to follow my footsteps. I almost guarentee the only reason ultrasounds are ever ordered is because they cost less.

Fox, are you just refering to

Fox, are you just refering to US or MRI as well? I am sorry your initial situation was not detected

foxhd · January 2016

Shecka1121 said:
Fox, are you just refering to
Fox, are you just refering to US or MRI as well? I am sorry your initial situation was not detected

just US

I don't know the cost but US is a very old technology. It was probably the '30s when Us was being used to vibrate welds in bridges and aircraft to test for failure. Now it is used for the same thing, visualizing the rebounding sound patterns for diagnostics, and for heating tissue to promote healing ,pain relief, and softening of scar tissue. For diagnostics,it's only as good as the spot it is aimed at. Like a hand held backyard metal detector. An mri again only gets images of what the target is. But when knowing where to look, an mri gives very accurate images. The ct scans image much larger areas. It doesn't need to aim at a target. Most of us get a ctscan of chest, abdomen, and pelvis when we get scans. Tumors can't go hiding and if present, they light up. Knowing where they are and being able to measure them is more important than a perfect image. If avoiding radiation is of concern, then you rule out ct scan and us is the first choice. If something is found, then a follow up mri may be indicated. It all makes sense after a while. Medical/insurance provider can usually argue for or against any one of those tests by cost, accuracy, experience of tester, etc. So it helps to be able to validate the test you want and getting its approval is more likely.

Pandabear1011 · January 2016

MRI vs CT...

Hi, Shecka...I also had a Stage 1 tumor. Although it was 6cm. I am a MD Anderson patient and on my first visit before my surgery they did a CT Scan and a MRI. The MRI was just as accurate as the CT Scan. I just had scans on January 13th and I am still cancer-free after 20 months. You are very lucky that your tumor was only 1.2cm. That is catching it very early!

hardo718 · January 2016

Can only share my experience

I'm blessed to say, if I specifically request a certain test be done, we have a discussion about it and they usually will order whatever I request. It does put my mind at ease. Things can definitely be missed with Ultrasound, like anything else, ultimately depends a lot on the technician, and then the physician interpreting.

medic1971 · January 2016

My Follow Up

I had two masses on my right kidney: 2.2cm and 0.8cm. Both were Stage I,Chromophobe, Grade: N/A (MD Anderson no longer grades Chromophobe tumors)

I am 44 years old too and my doctors only wants me to have yearly CT scans. He is more concerned about radiation safety than reoccurrence and I am okay with that. Radiation exposure is a real concern. When you have a CT scan with and without contrast you have two scans done at the same time only a few minutes apart.

For this procedure:	* An adult’s approximate effective radiation dose is:	Comparable to natural background radiation for:	** Estimated lifetime risk of fatal cancer from examination:
ABDOMINAL REGION:
Computed Tomography (CT)-Abdomen and Pelvis	10 mSv	3 years	Low
Computed Tomography (CT)-Abdomen and Pelvis, repeated with and without contrast material	20 mSv	7 years	Moderate
Computed Tomography (CT)-Colonography	10 mSv	3 years	Low
Intravenous Pyelogram (IVP)	3 mSv	1 year	Low
Radiography (X-ray)-Lower GI Tract	8 mSv	3 years	Low
Radiography (X-ray)-Upper GI Tract	6 mSv	2 years	Low
BONE:
Radiography (X-ray)-Spine	1.5 mSv	6 months	Very Low
Radiography (X-ray)-Extremity	0.001 mSv	3 hours	Negligible

mrou50 · January 2016

Shecka

I am stage IV so I get scanned every three months, and now that I am in the Opdivo phase IV trial they are going to bump that up to every two months. I do prefer CAT scans becuase they tend to show more, but like you and everyone else I am worried about the radiation exposure, but it is a necessary part of the beast. Six month scans are bad that is what I used to have just hang in there, and if you feel that you are not getting what you want to talk to your doc's and tell them what your concerns, if they don't listen or they give you the run around, remind them they work for you and if that does not work get new doctors.

Mark

foxhd · January 2016

mrou50 said:
Shecka
I am stage IV so I get scanned every three months, and now that I am in the Opdivo phase IV trial they are going to bump that up to every two months. I do prefer CAT scans becuase they tend to show more, but like you and everyone else I am worried about the radiation exposure, but it is a necessary part of the beast. Six month scans are bad that is what I used to have just hang in there, and if you feel that you are not getting what you want to talk to your doc's and tell them what your concerns, if they don't listen or they give you the run around, remind them they work for you and if that does not work get new doctors.

Mark

Everyone seems afraid of radiation

Understandable. But is it necessary? After 45 years in health care I have NEVER been aware of any person suffering from post radiation problems. I've asked around, and no one has ever seen issues. I will ask the radiation oncologist as soon as I see him. I think most stories are from WWII and Hiroshima.

Besides, try being stage 4 for several years with near zero life expectancy. Radiation is as worrysome as having a hair out of place in a group photo.

hardo718 · January 2016

foxhd said:
Everyone seems afraid of radiation
Understandable. But is it necessary? After 45 years in health care I have NEVER been aware of any person suffering from post radiation problems. I've asked around, and no one has ever seen issues. I will ask the radiation oncologist as soon as I see him. I think most stories are from WWII and Hiroshima.

Besides, try being stage 4 for several years with near zero life expectancy. Radiation is as worrysome as having a hair out of place in a group photo.

Foxhd, you crack me up...

.....thanx for putting things in perspective, as only you can do. So true (having a hair out of place....) We need to pick & choose wisely about the things to worry over.

Kind of like my first road trip, a friend and I were driving south in my VW Beetle (back in 1973), my mother was so worried.....not because the trunk was in front that was nearly empty, but that the doors were only a couple of inches thick. Luckily, my dad set her straight about worrying unnecessarily and we were on the road.

Positive_Mental_Attitude · January 2016

APny said:
Wishing you the very best
Wishing you the very best test results. The follow up protocols are different for different stages and grades. I'm being treated at Sloan Kettering and don't get CT scans, just ultrasound every six months and chest x-rays. I believe it's because I too was a stage 1. I know many on the forum say US is not as precise as a CT but perhaps that depends on the equipment itself and the skill of the radiologist because mine picked up two sub-centimeter cysts on each kidney during my last two scans. So obviously they can detect small growths. And I do have faith that oncologists at MSK know what they're doing. If you don't feel comfortable with an MRI say so. I thought MRI is not often used for follow ups and they either use CT or US but of course I'm not a physician.

I go to the same hospital and

I go to the same hospital and urologist-oncologist as APNy. US and Chest X-ray every six-months for me. I just had my 1.5 year US and chest x-ray on Monday, and I get my results Friday. After my 1 year visit, they originally scheduled me for the next visit 24 months past my surgery. When I inquired about getting scanned at 1.5 years, they scheduled me for 1.5 years. Wondering what the normal protocol is for pT1 tumor only 2.9 cm in diameter.

I looked up a 2009 article and found this chart, which suggests, my frequency of scans will go to annual:

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

Shecka1121 · January 2016

hardo718 said:
Foxhd, you crack me up...
.....thanx for putting things in perspective, as only you can do. So true (having a hair out of place....) We need to pick & choose wisely about the things to worry over.

Kind of like my first road trip, a friend and I were driving south in my VW Beetle (back in 1973), my mother was so worried.....not because the trunk was in front that was nearly empty, but that the doors were only a couple of inches thick. Luckily, my dad set her straight about worrying unnecessarily and we were on the road.

Thanks Everyone for the

Thanks Everyone for the replies. I appreciate it. I will see doctor on Monday and ask for a CT scan that includes lungs and ab area at the next scan. I got blood test back and all is good. I recieved scan report via the electronic system and I believe it is to be NED. It has so many words that it is hard to understand but all organs are unremarkable and it states No focal soft tissue mass, restricted diffusion, or abnormal enhancement to suggest residual or recurrent disease in kidney.

There is some other talk which I do not understand and will need clarity on when I speak withthe doctore. I wil believe at this point all is ok and I hope that is confirmed on Monday.

I appreciate this group so much. I remember 6 months ago you all helped me with mentail anguish.

Allochka · January 2016

Shecka1121 said:
Thanks Everyone for the
Thanks Everyone for the replies. I appreciate it. I will see doctor on Monday and ask for a CT scan that includes lungs and ab area at the next scan. I got blood test back and all is good. I recieved scan report via the electronic system and I believe it is to be NED. It has so many words that it is hard to understand but all organs are unremarkable and it states No focal soft tissue mass, restricted diffusion, or abnormal enhancement to suggest residual or recurrent disease in kidney.

There is some other talk which I do not understand and will need clarity on when I speak withthe doctore. I wil believe at this point all is ok and I hope that is confirmed on Monday.

I appreciate this group so much. I remember 6 months ago you all helped me with mentail anguish.

Your report sounds like NED,

Your report sounds like NED, which is fabulous! Congrats!

My partner was also Stage 1, Grade 1 (very lucky). He gets US and chest X-ray every 6 months now. US is very operator-dependent method. Bad doc could miss a lot, good doc picks up the smallest things. And equipment also differs, good machines are more or less ok. Of course CT is better, but US with good doc and good equipment, knowing exactly what to look for would be OK for Stage 1 with low grade.

Congrats once again!

Alla

foxhd · January 2016

Allochka said:
Your report sounds like NED,
Your report sounds like NED, which is fabulous! Congrats!

My partner was also Stage 1, Grade 1 (very lucky). He gets US and chest X-ray every 6 months now. US is very operator-dependent method. Bad doc could miss a lot, good doc picks up the smallest things. And equipment also differs, good machines are more or less ok. Of course CT is better, but US with good doc and good equipment, knowing exactly what to look for would be OK for Stage 1 with low grade.

Congrats once again!

Alla

Precisely Alla

"knowing exactly what to look for"

foroughsh · January 2016

Congratulations for upcoming

Congratulations for upcoming NED.

Thanks everyone for good info you shared.

Forough

Scan Day

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