Results not so good - UPDATE

tyjsbtn

I just wanted to take a few minutes and send an update.  I met with the oncologist on Monday and he has scheduled a lung biopsy for Monday 8/31.  While he does handle renal cases they are not his speciality and he has referred me to Dr. Sosman at Vanderbilt Hosptial.  From what I understand he is a leading oncologist in renal cancer and does clinical trials.  My appt with him is 9/9.  I hope that he will be able to give me a good plan of attack.

 

Thank you everyone who took the time to respond.

 

 

Good Morning All, 

I know that I do not post on here very often but I do lurk and read others posts and often find encourgment.  I received my scan results.  My abdominal scans came back clean as did my blood work.  However, my chest x-ray showed a spot.  I had a ct done on my lungs and they found 3 spots on my right lung and 1 on my left.  The largest is about an 1 inch big.  Needless to say I have been freaking out a bit.  My urologist is recommending an oncologist but I don't have a clue what to ask the doctor.  My cancer was orginally discovered in my left kidney which I had removed last August. My tumor was 13 cm large and was stage 3 grade 4.

Can anyone please let me know what questions to ask?  I am at a complete loss.

How lucky am I that I was told about my reoccruance on the 1 year anniversary of the removal of my left kidney.

Thank you

Skagway Jack

First Question

Very sorry to hear your news.  Hang in there.  There are many here to hear your frustrations and help with their experiences.

I am waiting for my scans (2Yr).  I pondered my first question if the scans endend up showing mets.  My first question will be "where is the nearest RCC Oncologist specialist?"  I already have a Oncologist, but I will first meet with my urologist, and get the results of my scans from him.  The Onc that I have is not a RCC specialist but has good reputation overall.  Where I to go stage IV I would likely look for different Drs. and treatment centers than are available locally.  You need the best people you can get on your team.  As many on this board can attest you are your own best advocate.  

 

 

Allochka

Skagway Jack said:

First Question

Very sorry to hear your news.  Hang in there.  There are many here to hear your frustrations and help with their experiences.

I am waiting for my scans (2Yr).  I pondered my first question if the scans endend up showing mets.  My first question will be "where is the nearest RCC Oncologist specialist?"  I already have a Oncologist, but I will first meet with my urologist, and get the results of my scans from him.  The Onc that I have is not a RCC specialist but has good reputation overall.  Where I to go stage IV I would likely look for different Drs. and treatment centers than are available locally.  You need the best people you can get on your team.  As many on this board can attest you are your own best advocate.  

 

 

Sorry to hear about it.
As

Sorry to hear about it.

As Skagway Jack pointed out, search for good RCC oncologist in the first place. As you see on this board, there are many treatments avbl nowadays, and even metastasis do not mean death sentence. Look at Fox, Danbren, Donna Lee, others...

I ' m sure more experienced guys will join soon and advise on soecific questions to ask.

hold on!

tyjsbtn

Thank you

Unfortunately, I have not been able to locate ANY RCC oncologist in the area.  I have search out for 200 miles. I know that there are several good oncologists in the area just not one that specializes in RCC.  I am having my urologist recommend one to me.

I know that there are many new treatments that many people have had positive results with.  I am just at a loss as to what to even ask the oncologist.  Any input is appreciated.

 

Thank you

cubsfan9

tyjsbtn said:

Thank you

Unfortunately, I have not been able to locate ANY RCC oncologist in the area.  I have search out for 200 miles. I know that there are several good oncologists in the area just not one that specializes in RCC.  I am having my urologist recommend one to me.

I know that there are many new treatments that many people have had positive results with.  I am just at a loss as to what to even ask the oncologist.  Any input is appreciated.

 

Thank you

Good Morning!
I don't know

Good Morning!

I don't know where you are located, but suggest you register at smartpatients.com as they have lists of RCC spcialists in various parts of the country.  Someone there may be able to offer you a name/facility in your general area.

Do you know if your cancer is clear cell or is it one of the other types?  Also, is your lung nodule 1 inch or 1 cm?  You are right...there are a number of treatments available.  Which one is best for you will depend on several factors.  That is why you need to find a doctor with RCC experience who will be able to evaluate your situation, discuss the various options, and develop a treatment plan.  Note...many people travel a distance to the specialist who will then work with a local/general oncologist so that you do not have to travel as much.  Best wishes.

Darron

tyjsbtn said:

Thank you

Unfortunately, I have not been able to locate ANY RCC oncologist in the area.  I have search out for 200 miles. I know that there are several good oncologists in the area just not one that specializes in RCC.  I am having my urologist recommend one to me.

I know that there are many new treatments that many people have had positive results with.  I am just at a loss as to what to even ask the oncologist.  Any input is appreciated.

 

Thank you

Where are you

Tell us where you live, lots of people here have great oncologists. I will share my example where my urologist didn't want to refer me to my current oncologist because he was a immunotherapy specialist, not a kidney specialist. Little did my urologist know that my oncologist is a leading researcher in kidney cancer immunotherapy. Not only that, they were in the same network....you see my point?

You must be your own advocate and not rely on a single person for your care.

Feel free to read my bio, I had lung mets and adrenal tumor....more details there.

mrou50

tyjsbtn said:

Thank you

Unfortunately, I have not been able to locate ANY RCC oncologist in the area.  I have search out for 200 miles. I know that there are several good oncologists in the area just not one that specializes in RCC.  I am having my urologist recommend one to me.

I know that there are many new treatments that many people have had positive results with.  I am just at a loss as to what to even ask the oncologist.  Any input is appreciated.

 

Thank you

Oncologists

I know how you feel there are no good oncologists who live out where I do in rural Oregon so I travel 3.5 hours to Portland each month for appointments it is worth it however to get good care.  I too had my left kidney removed and 1.5 years later I had six nodules found on my lungs, just like you I did not know what to ask I waited until the next appointment and brought in a big list of questions treatments, what usually happens etc.  Next I asked are they sure it is cancer and that was confirmed two weeks later with a lung biopsy, now I am on Votrient and several other drugs to counter the effects.  I can tell you this there is no one answer for every one my ONC reminds me all the time  that each case is different and to remain positive and keep fighting.Wishing you the best.

 

Mark

tyjsbtn

Thank you for all your

Thank you for all your suggestions.  I am in East Tennessee.  In a very rural part of the state.  I am meeting with Dr. Foust on Monday.  He does have experience with Renal cancer and I have spoken to several people in a cancer survivors support group and he came highly recommended.  One of the things that I will be discussing with him is regarding the clinical trial that I was not eligible before but I think that I may be now since it has spread.  The largest of the mets that was found was between 1/2 to 1 inch.  My cancer last year was Renal Clear Cell with sarcomidid features stage 3 grade 4. 

Jan4you

tyjsbtn said:

Thank you for all your

Thank you for all your suggestions.  I am in East Tennessee.  In a very rural part of the state.  I am meeting with Dr. Foust on Monday.  He does have experience with Renal cancer and I have spoken to several people in a cancer survivors support group and he came highly recommended.  One of the things that I will be discussing with him is regarding the clinical trial that I was not eligible before but I think that I may be now since it has spread.  The largest of the mets that was found was between 1/2 to 1 inch.  My cancer last year was Renal Clear Cell with sarcomidid features stage 3 grade 4. 

Just wanted to welcome you !
Just wanted to welcome you ! Glad you found a Oncologist familiar with RCC.

Between us, and SmartPatients.com you'll be ok good hands for support and information.

Wanted to send you a healing hug with HOPE!

Warmly, Jan

tyjsbtn

Jan4you said:

Just wanted to welcome you !
Just wanted to welcome you ! Glad you found a Oncologist familiar with RCC.

Between us, and SmartPatients.com you'll be ok good hands for support and information.

Wanted to send you a healing hug with HOPE!

Warmly, Jan

Thank you so much.  All hugs

Thank you so much.  All hugs a welcome.  

I have started my list of questionsl and will add to it as I think of them.  My brain in just overwhelmed.

rebapicc

tyjsbtn said:

Thank you for all your

Thank you for all your suggestions.  I am in East Tennessee.  In a very rural part of the state.  I am meeting with Dr. Foust on Monday.  He does have experience with Renal cancer and I have spoken to several people in a cancer survivors support group and he came highly recommended.  One of the things that I will be discussing with him is regarding the clinical trial that I was not eligible before but I think that I may be now since it has spread.  The largest of the mets that was found was between 1/2 to 1 inch.  My cancer last year was Renal Clear Cell with sarcomidid features stage 3 grade 4. 

RCC Doctor at Vanderbuilt

Dr. Puzanov is the Clincial Director for Renal Cancer at Vanderbuilt Hospital.  Excellent doctor.