Mad & Confused

I am 36 yrs old and had part of my right Kidney removed in April 06 due to Stage 2 Clear Cell RCC. It was found accidently. Was told that I should never have another problem with this again. I was not given any treatment nor told to see an oncologist. I have had 3 CT's done since then and all have been normal, they thought!!! In October of this year, I was having chest pain and was in the hospital for 2 days and found nothing and was told it was stress. The next week was back in ER but at different hospital. They did a CT of my chest to check for blood clot and discovered 3 noduels in my lungs and emphasema. Had follow up with lung doctor about emphasema and noduels and he said they are so tiny that there is nothing to worry about. He went back and checked my past scans and found the noduels have been there since day one.

Am I crazy for being upset that no one said anything about the noduels until now and was not sent to see an oncologist? Dr wants another scan in 6 months but that has me scarred to wait that long. Any one in the same boat?

BrianMack

hello,

in my case, i have my surgery March 2007 and removed my right kidney for stage 3 RCC and was referred to an oncologist and was prescribe for 50 mg Sutent in which until now still on but on lower does cause my body can't take it too strong. I have my CTSCAN and MRI before starting the Sutent and found nothing, second CTSCAN was done Aug. 2007 and still nothing. My oncologist explained that even though the CTSCAN and the MRI cannot determine that there is or there are no nodules ,she just want to make sure that there will be no microscopic nodules that cannot be seen on CTSCAN/MRI present, by doing  so taking on Sutent the growth on those nodules will be inhibited.

my suggestion for you is, see another Doctor and oncologist. Don't wait for another six month, even for a month is too long for me , growth on cancer cells multiply every day.   

 

 

On 12/3/2007 Julib wrote:

hello,

in my case, i have my surgery March 2007 and removed my right kidney for stage 3 RCC and was referred to an oncologist and was prescribe for 50 mg Sutent in which until now still on but on lower does cause my body can't take it too strong. I have my CTSCAN and MRI before starting the Sutent and found nothing, second CTSCAN was done Aug. 2007 and still nothing. My oncologist explained that even though the CTSCAN and the MRI cannot determine that there is or there are no nodules ,she just want to make sure that there will be no microscopic nodules that cannot be seen on CTSCAN/MRI present, by doing  so taking on Sutent the growth on those nodules will be inhibited.

my suggestion for you is, see another Doctor and oncologist. Don't wait for another six month, even for a month is too long for me , growth on cancer cells multiply every day.   

 

Thanks for your response. I am going to make an appt. with an oncologist. I am having a hard time believing that the noduels have been there the whole time. In the past two weeks I have been having pain around left kidney!! Not looking forward to going back to the doctor.

BrianMack

Julib,

Thanks

Hi Brian, 

I was diagnosed with neck cancer two years ago. When I had my 1st CT it showed 4 small nodules on my lungs and one larger one. The large one was calcified so they said that was OK. I was told that the others were too small to biopsy. They didn't light up on my subsequent PET so my doctors told me to have them rechecked in 6 months. As it was explained to me, the modern diagnostic tools (CT, PET, MRI...) are so precise that they will show up things that probably don't mean anything. They said that it was a good probability that nearly everybody that's been exposed to smoke and things like that have these nodules but will never know unless they are having a CT for something else. I've had them checked every 6 months since then and they haven't changed at all. I was just told in November that they no longer need any follow up. I get checked regularly for everything else but these particular nodules are apparently not a problem. It's always good to be cautious and I know how scary it is when they mention anything on your lungs but your doctors may be right. The nodules may be nothing at all as was the case for me. I hope for the best with you also.

Good luck!

Joe 

Dear Brian,

My dad had kidney cancer in '91, was removed and didn't have any methastasis so he did not need any tretman. It became methastatic in 2004!!! This means that it has waited somewhere for 13 years to come back, and he had check ups every year. What I would sugest you to find a good radiologist to get second opinion on this noduls in lungs. This is your right as pacient and you owe it to your self. Not everione is good in reading the ct scan. Maybe it's nothing but what if??? This is a battle you can not afored to lose, so ask for another opinion. My dad's methastasis showed after 13 years and it the mean time he was in perfect health, and the first of them came on lungs. I don't write this to scare you, just to make a little more efort.6 month's is long period for waiting with this suspect, so just do it!

 Best luck, ana

Another thing, there is one machine called PET scan. It is very precise, that is more precise that a CT, the only thing is that cost so much, but this is not a problem when dealing with this sort of cancer. It will give you a precise location of all cells that are not normal. Do it!!! You are still in time if the methastasis are there and they are opreable! ana

Go to a kidney cancer specialist immediately-it is not a generic oncologist specialty. Yes be mad but that doesn't get you anywhere. Make a pact with yourself to rely on no one other than yourself to be informed and decide treatment until you meet and get to know your kidney onc. You need to find out if you have a different type of cancer oor if this is kidney cancer metastiasized-sounds strange but it could be either and the difference in the treatment could mean your life-best of luck...tagml

I have had Stg 3b Metastatic RCC since 10/05.  I have had 15 CT scans in the past two years.  I have found the radiologists to be almost unprofessional in the inconsistency of the CT scans. Lymphnods mentioned one month are not even mentioned the next month. Sometimes they give a measurement for my tume (on the remaining adrenal gland) and other times they don't.

 I'm with you... very angry with the inconsistent and unprofessional treatment I receive from the radiologists.  Luckily, I have an outstanding oncologist.  Search for the best oncologist you can get, and do it quick.

D. J.