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New diagnosis, lots of questions

Kathy1427's picture
Kathy1427
Posts: 6
Joined: Jul 2018

Hi,

I was diagnosed with Lupus in June and through the bloodwork, it was found that there was a lesion on the liver.  An Ultrasound and MRI revealed that the liver lesion wasn't an issue, but they found a tumor on the kidney that is a problem.  They belive it is RCC and measures 3.4cm by 3cm.  My gastro is referring me to a nephrologist who is local.  The gastro expects that I will be quickly scheduled for surgery (big surgery, not laproscopic).   I live in central PA. 

My questions are:

Is the nephrologist the right place to go if they think it's cancer?  Shouldn't an oncologist be involved?  Who wil actually perform the surgery?

Should I get a second opinion?  If so, where?  Phiily and John Hopkins (Maryland) are do-able, as is PennState Hershey.  Any recommendations?

I don't know at this point where the tumor is located in the left kidney, so I don't know if we'll be talking partial or full removal.  Any thoughts?

Should I do a biopsy or go directly to surgery?

Does anyone else have the lupus element that they're trying to deal with?  How have the 2 diagnosis been?  Is there a specialist who deals with both? 

Anything else I should be aware of at this point?

 

Thank you in advance for any feedback you can provide.  I know of no one who has had kidney cancer or lupus so I have many, many more questions than I do answers at this point.  

 

Bay Area Guy's picture
Bay Area Guy
Posts: 377
Joined: Jun 2016

A urologic oncologist is a better specialist to see.  Regarding biopsy, I suggest against it.  There are too many reports of false negatives.  My suggestion is to see the urologic oncologist and then take stock of what to do

icemantoo's picture
icemantoo
Posts: 3198
Joined: Jan 2010

Kathy,

 

I can only address the Kidney part of your story. First you need to see a Urologist who has a specialty in Kidney Cancer for a FIRST real opinion. A nNephrologist is a good consult for Kidney disease issues, but most don't do Kidney Cancer surgery although they do address Kidney function issues mostly after Kidney Cancer surgery.  At 3.4 cm it is normally fully cured with surgery, but with longterm follow up scans.  It is a relatively small tumor, but beyond the point of watch a wait. Bounce all your Kiney Cancer questions off the Urologist. 

If you have acess to a Urologist at a teaching hospital go for it. I understand Hershey (the park near the hospital) is under water this week).

Sending good Karma on this jourrney.

 

icemantoo

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Don't be afraid to get a 2nd opinion. Mine was large and had to go at first image. My surgeon was a urologist who had done over a hundred surgeries. We we're comfortable right away. He did offer a 2nd Dr for another opinion if we wanted. If your not comfortable get another opinion. Sending positive thoughts your way.

APny's picture
APny
Posts: 1915
Joined: Mar 2014

I agree that you should see a urologic onconlogist. Once he or she tells you what kind of surgery you should have, partial or full, open or laproscopic, then I would seek a second opinion to see how to proceed with surgery. Biopsy is not usually done and even if it was benign it should come out at that size. Partial, if possible due to location, is preferable to full as saving as much kidney as possible is always a good idea. Mine was roughly the size of yours and I had an open partial done by a urologic oncologist surgeon. Mine was open surgery but judging by eveyone's report, not much different from laproscopic as my hospital stay and recovery were very comparable. All the best to you!

stub1969's picture
stub1969
Posts: 776
Joined: Jul 2016

My nephrologist is the one the found my tumor while running a CT for kidney stones.  After telling me about the mass he told me that he was referring me to a urologist.  I quickly looked for a second opinion at Mayo and was under the care of a urologist.  If my cancer ever does spread then I'd see a urologic oncologist at Mayo.

You've gotten some good advice from our members.  Sounds like you definiately need to search out a university hospital or research institution that does have a department that specializes in RCC.  

Luck is on your side as the size of your tumor is relatively small.  More than likely, you should be finished with this RCC stuff after surgery.

Keep us updated.

Stub

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

Stub, urologic oncologists are surgeons that treat kidney masses and masses in the urinary tract/reproductive organs. They don't treat metastastic disease nor manage the treatement of metastatic disease. You'd normally see a medical oncologist (an internist) if your cancer spreads. Medical oncologists use drugs to treat metastatic disease and also manage the care of Stage 4 cancer by referring you to surgeons and radiologists as needed to treat/manage tumors. Medical oncologists come from an internal medicine background and often also have specialties in hematology in addition to oncology.

This is one of my pet peeves that the word "oncologist" shows up in the specialty of urologists. I think it's very confusing and deceptive even. They don't treat systemic cancer.

Maybe there are cases where I'm wrong? I'd love to hear about it if I am so I stop spreading incorrect information.

If you have kidney cancer or think you do, I think it's very important to understand the differences between these three specialties: urologist, urologic oncologist, (medical) oncologist.

Best to you,

Todd

stub1969's picture
stub1969
Posts: 776
Joined: Jul 2016

Todd--I just reread that bio of the oncologist that works with many of the RCC patients at Mayo and you are correct, he is a MEDICAL oncologist.  I stand corrected.  When I was first diagnosed I read a lot of the research from many of the doctors at Mayo and I had urologic oncologist in my head.  It's always good to reread and proof-read prior to posting.  Thanks for the input!

Stub

APny's picture
APny
Posts: 1915
Joined: Mar 2014

What the heck is that above and how do I delete it, lol?

What I wrote was:

Urologic oncologists specialize in the treatment of cancer of the urinary tract, bladder, kidneys, prostate, etc. No, they do not treat metastatic disease or deal with other cancers like medical oncologists do. But they’re still oncologists since they specialized in urinary oncology so IMO it’s not misleading or deceptive to say they’re urologic oncologists. It differentiates them from urologists who don’t necessarily deal with or treat cancer
Kathy1427's picture
Kathy1427
Posts: 6
Joined: Jul 2018

A brief update...

I was able to see a Urology Oncologist last week.  She also believes that it is cancer.  She’s sending me for CT scans that focus on the kidney (not the liver) and the lungs to make sure it hasn’t spread. If it hasn’t, she is suggesting a partial, non-robotic removal based upon the location.  I really liked her and I was impressed with the cancer institute.  

You all said exactly what she told me.  Thank you all very much for taking the time to reply. I feel much more comfortable going into this with such a great support community. 

Kathy

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Glad you found a Dr your comfortable with. That helps a lot. With the information from the scans and tests hopefully you'll have the information to make the decision that's right for you. Sending more positive thoughts your way.

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