Dazed and Confused

Nana4life · July 2015

Hello kidney friends,

As you know I have Chromophobe Renal cell carcinoma T3a. Had partial surgery June 8. Didn't have follow up scans with surgeon until August 26. So after hearing from some of you folks as well as another friend who had cancer. I decided to get an opinion with an medical oncologist who specializes in kidney cancer at a completley different hospital. I saw him today.

He was very kind and straight to the point. "Okay you are a stage 3 chromophobe, we need to do scan of the lungs, brain, bones, liver to make sure it has not gone into any other areas. If all clear we will scan you every 4 to 6 months for a couple of years and gradually spread it out over time. I asked alll the questions about chromophobe cell thinking it was a quiet none aggressive cancer. Nope doesn't matter "Yes it is rare but it is cancer and it is stage 3 meaning that it could have possibly spread. As soon as we have a clear platform we know where we stand." He arranged right there for me to have blood work and lung scan.

WOW! I was a bit shocked and yet appreciated his aggressive stand on making sure it is not anywhere else. I said... "Well what about the surgeon follow up CT scan etc.?" Doc.....No I'll take care of that. If you choose my services this is what I do. This is my specilaty this is all I do.

It is a super duper pain in the **** hospital to get to but their urology oncology is top notch.

Have any of you switched paths of recovery early on? I really feel that this guy is on top of it and will help me faster then just the surgeon at the hospital where I had surgery. The Urology department at the hospital I had surgery doesn't actually have a medical oncologist in the department of urology. It is a seperate oncology department.

I like the idea that this new hosptal is all in one department. Oh boy my head is spinning! They are both Teaching university hospitals and both have excellent doctors.

Dazed and confused!

Nana4life

Max57 · July 2015

well the urologist who

well the urologist who operate on my kidney and removed the tumor on April 14th she already setup an appointment for flowup with blood work and chest x-ray on the 27th of this month it means 3 months after the surgery and she said will setup other scanning after she see me... I think this is the way should be done.... any way its good you did not wait... but you know I would go back to the doctor and ask why? did you forget or you don't know!

jason.2835 · July 2015

The second knows best

Nana,

Urologic surgeons are surgeons first and oncologists second... I love my surgeon but I know his days are dominated by one thing.... SURGERY. Someone like the second doc who specializes in this field is invaluable. I would definitely stay with him. RCC of all types are not a type of cancer you a lot of experience in. I am sure the surgeon has your best interests at heart, too, but his job is to spend most of his time operating and the time left over in the time he spends following up. This guy is ALL follow up.

- Jay

APny · July 2015

jason.2835 said:
The second knows best
Nana,

Urologic surgeons are surgeons first and oncologists second... I love my surgeon but I know his days are dominated by one thing.... SURGERY. Someone like the second doc who specializes in this field is invaluable. I would definitely stay with him. RCC of all types are not a type of cancer you a lot of experience in. I am sure the surgeon has your best interests at heart, too, but his job is to spend most of his time operating and the time left over in the time he spends following up. This guy is ALL follow up.

- Jay

With stage 3 you did the

With stage 3 you did the smart thing. Stay with this oncologist and have him do all your follow ups. At stage 1 mine is perfecty adequate with six month scans and chest x-ray but with a stage 3 I would want more aggressive monitoring. Checking to make sure it has not spread is an excellent approach. I would say this doc is definitely a "keeper."

Yeric · July 2015

That Guy is the one!

I had my first surgery in 1999. Second in 2004. The first done by a urologist. We never talked about looking anywhere else. Being new to this hobby I did not know any better. And this was the same guy I called for the second. Except this time he had a new partner. This guy had certain... skills. And then I was Taken.

To surgery. I had a x-ray of the abdomen post surgery then returned to work. There was something there I needed to know about. We were working out of town and could not be contacted. When I got weak and afraid of being up high I called them. The x-ray caught some issues in the bottom of my lungs. The Doctor with skills ordered a ct scan. MRI and a bone scan. Set me up with a Doctor in Seattle. All the stuff that most likely should have been done after the first.

For me the outcome would not have been any different with an earier discovery. Surgery and radiation was all we had back then.

I do not regret the timing. The bone scan did find four spots. The MRI showed one on my pitutary gland. Both lungs were full of 2mm tumors and a few 4,5 and 6mm growths. Today it would be silly to not look. You did good. Don't look back.

Bobby

Jojo61 · July 2015

I am very happy to hear that

I am very happy to hear that you found such excellent care! Knowing that you are getting the best care can relieve you and give you so much more peace of mind!

Good for you!

Hugs

Jojo

Jan4you · July 2015

Jojo61 said:
I am very happy to hear that
I am very happy to hear that you found such excellent care! Knowing that you are getting the best care can relieve you and give you so much more peace of mind!

Good for you!

Hugs

Jojo

WOW, pays to be your own

WOW, pays to be your own advocate.

Glad you found out your course of follow up monitoring schedule.

Sounds good to me!

Now relax and trust this doctor to be in your best interest.

Let us know how things are going ok?

Warmly, Jan

mrou50 · July 2015

Good Thinking

When it comes to your life and cancer go with the specialists. After my kidney was removed the Urologist immediatly set up a meeting with an oncologist who specialized in RCC for me. I did not have to lift a finger. I was unsure what to do and I really liked the Urologist but he told me that he will handle my remaining kidney and blool pressure issues that were ure to arise and they did after starting treatment for stage 4 RCC but my oncologist handles all of the treatment issues. Great choice in taking care of your future.

Mark

sierra28 · July 2015

mrou50 said:
Good Thinking
When it comes to your life and cancer go with the specialists. After my kidney was removed the Urologist immediatly set up a meeting with an oncologist who specialized in RCC for me. I did not have to lift a finger. I was unsure what to do and I really liked the Urologist but he told me that he will handle my remaining kidney and blool pressure issues that were ure to arise and they did after starting treatment for stage 4 RCC but my oncologist handles all of the treatment issues. Great choice in taking care of your future.

Mark

Stage 4

Hi, what other organs did your cancer spread to in stage 4 Was it in you adrianal glad. Or in the tbe abouve you kidney. I go to the doctor tomorrow for a staging but I read that once it gets to stage 4 the out look is not good. I an so afraid,, Kathy

Footstomper · July 2015

sierra28 said:
Stage 4
Hi, what other organs did your cancer spread to in stage 4 Was it in you adrianal glad. Or in the tbe abouve you kidney. I go to the doctor tomorrow for a staging but I read that once it gets to stage 4 the out look is not good. I an so afraid,, Kathy

Stage 4

It aint as scarey as it is fear shaped. Worry about about stuff you can do something about.

Stage 4, the outlook is not good.. But the outlook is the same for every body. Try not to get too worried by it

Dazed and Confused

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