What to expect / Questions to ask

If all they need to do is take out your Kidney, it sucks, but at least you have a second.  My tumor was 21 cm (size of a football), I was 36 when they found it.  They moved fast and took it out with surgery and no treatment.  You should bring your wife with you to you appointment...you sound like me and my "laid back" way with my wife the one who worries.  I just found out mine is back and my wife will come to all of my appointments so she can ask enough questions to feel better.  I tend to just do what they say...I'm no doctor so I deflect to the experts.  Good luck and hope it turns out well. 

Gaines,

With 2, 4 cm masses on the same (luckily) kidney the doctor will probably focus on upcoming surgery. Make sure the doctor is a Urologist or other surgeon focusing on Kidney Cancer. Depending on the results of the scans the doctor will discus the type of surgery, ie open or laproscopixc, partial or complete removal of kidney. My spare has lasted 16 years so far so don't add  to your worries about a donor for your spare. Not fun being told all this, but things will get better. Not sure the effect of 2 vs 1 tumor in the same kidney other than increasing the chance of a full rather than partial nepherectomy.

icemantoo

Welcome.  You are on the young side to have this diagnosis.  It may be wise to not assume removal of your entire kidney, even with 2 tumors.  There seems to be an attitude of having a spare kidney, so WTH with some doctors.  If it was possible to resect both tumors by doing a partial that is what I would do.  Please join smart patients also.  I encourage this because you are young and with multiple tumors on one kidney.  Kinda makes you special.  You are going to be okay, but you definitely may want a second opinion from a renal specialist at a major university teaching hospital.  Try not to read any old information on the internet.  We have come a long way in a short time.  Best wishes.

Welcome, Gaines.  I want to ask you to reach out to Ryan with the username: LMCRJB13.  You can reach out to him through a private message (email option by clicking on his username).  Ryan was in the same situation as you with two tumors.  He'lll be able to give you a good perspective on the type of surgery he had along with questions his team worked through.  

The best of luck to you!

Stub

In a nutshell, my story is I had 1 tumor in my right kidney it was almost 7cm. Had that removed. Turned out to be Stage 3 Grade 3 clear cell RCC.

Here are some of the things I wish I'd been told at the beginning.

1. Know your specialties and what they are. A "urologist" is a *surgeon" that treats things by cutting them out. They specialize in urologic surgery (kidneys, bladder, etc.). A "urologic oncologist" is a *surgeon" that treats things by cutting them out (and maybe using RF or heat to destroy them in place). The difference is the latter has extra special training in kidney masses and the different ways of treating them and probably more specialized training in robotic surgery/laparascopy. Neither of these doctors will treat you if your cancer ever spreads or has spread. They will pass you off to a "medical oncologist". A medical oncologist is an *internist* that specializes in treating systemic cancer using chemotherapy and/or managing other tumors by passing you to surgeons, radiologists, etc. Their training is in internal medicine with more training in hematology (blood) and oncology (tumors and chemo).

2. Not everybody that will offer to treat you will have specialized training or experience in kidney cancer. For initial diagnosis and treatment, this is probably ok. The thing that bothered me is my urologist wanted to follow me after the surgery and I don't think they are very good at this (in my opinion) because they don't normally treat systemic cancer. I'm not saying you need to see an oncologist now, but I would see one soon. Someone (it could be your urologist) should at least do a CT of chest/abdomen and pelvis to make sure the cancer hasn't spread yet. Later an oncologist might want to do a brain MRI and a bone scan just to make sure it hasn't spread and you are really NED (no evidence of disease).

3. Until they remove those tumors and put them under a microscope, you will not know for sure what they are. This is called a pathology report. They can't tell from imaging exactly what this is. They can only guess. Your pathology report will tell what they are and if they are cancer, what type and what grade. This will give you an accurate prognosis and will help you know what your followup plans need to be. A prognosis based on imaging is a *guess*. Don't depend on it too much.

Great idea to take someone with you to the appointments. Make a list of questions and take the list with you. Ask all your questions. Take notes while you are asking questions. You'll feel better if you get all your questions answered.

If you aren't comfortable with the answers you are getting, get another opinion.

I went with a urologic oncologist for my surgery. I think these specialists are a little better than a regular urologist. If you see a medical oncologist later, I would suggest seeing someone that has a lot of experience with RCC (if that's what it turns out to be). These specialists can be found at cancer centers and university research centers and large hospitals. If you can, of course.

Stay calm. Try not to worry about stuff that hasn't happened yet. You're going to be fine. There's a lot of treatment options now.

Best to you!

Todd

I'll defer to the information from previous posts. I would add, be your own patient advocate. If your uncomfortable with the plan that is proposed and you think you want a 2nd opinion get it. You have to believe in the plan. Good luck on the appointment. Positive thoughts to you and your loved ones.

todd121 said:

Experts - Specialties

In a nutshell, my story is I had 1 tumor in my right kidney it was almost 7cm. Had that removed. Turned out to be Stage 3 Grade 3 clear cell RCC.

Here are some of the things I wish I'd been told at the beginning.

1. Know your specialties and what they are. A "urologist" is a *surgeon" that treats things by cutting them out. They specialize in urologic surgery (kidneys, bladder, etc.). A "urologic oncologist" is a *surgeon" that treats things by cutting them out (and maybe using RF or heat to destroy them in place). The difference is the latter has extra special training in kidney masses and the different ways of treating them and probably more specialized training in robotic surgery/laparascopy. Neither of these doctors will treat you if your cancer ever spreads or has spread. They will pass you off to a "medical oncologist". A medical oncologist is an *internist* that specializes in treating systemic cancer using chemotherapy and/or managing other tumors by passing you to surgeons, radiologists, etc. Their training is in internal medicine with more training in hematology (blood) and oncology (tumors and chemo).

2. Not everybody that will offer to treat you will have specialized training or experience in kidney cancer. For initial diagnosis and treatment, this is probably ok. The thing that bothered me is my urologist wanted to follow me after the surgery and I don't think they are very good at this (in my opinion) because they don't normally treat systemic cancer. I'm not saying you need to see an oncologist now, but I would see one soon. Someone (it could be your urologist) should at least do a CT of chest/abdomen and pelvis to make sure the cancer hasn't spread yet. Later an oncologist might want to do a brain MRI and a bone scan just to make sure it hasn't spread and you are really NED (no evidence of disease).

3. Until they remove those tumors and put them under a microscope, you will not know for sure what they are. This is called a pathology report. They can't tell from imaging exactly what this is. They can only guess. Your pathology report will tell what they are and if they are cancer, what type and what grade. This will give you an accurate prognosis and will help you know what your followup plans need to be. A prognosis based on imaging is a *guess*. Don't depend on it too much.

Great idea to take someone with you to the appointments. Make a list of questions and take the list with you. Ask all your questions. Take notes while you are asking questions. You'll feel better if you get all your questions answered.

If you aren't comfortable with the answers you are getting, get another opinion.

I went with a urologic oncologist for my surgery. I think these specialists are a little better than a regular urologist. If you see a medical oncologist later, I would suggest seeing someone that has a lot of experience with RCC (if that's what it turns out to be). These specialists can be found at cancer centers and university research centers and large hospitals. If you can, of course.

Stay calm. Try not to worry about stuff that hasn't happened yet. You're going to be fine. There's a lot of treatment options now.

Best to you!

Todd

Expanding a little on the information I added. I had a metastasis to my adrenal gland 2 years after my kidney was removed and had to have another surgery.

The reason you want at least a CT of chest/abdomen/pelvis to make sure the cancer hasn't spread before the surgery, is because treatment for metastatic disease is different than for local disease. You want to know if you have other tumors before the surgery. Your surgeon may assume it doesn't matter that your kidney needs to be removed anyway (or at least part of it). It's not terribly likely you have other tumors, but having 2 primary tumors is rare and I don't know what that means for your prognosis. It might be a better call made by an RCC medical oncologist.

I'm glad you're checking with NIH. Multiple kidney tumors in a younger person could be an indication of genetic RCC. This type of RCC is the most researched type of RCC and the NIH doctors know a lot about this illness. I've heard that they don't always do surgery anymore for this type of illness. A regular urologist or urologic oncologist may not be aware of this. It's worth looking into it.

A local cancer center or research university often have genetic testing counselors that can help with this type of testing too. I got mine done at Cedars Sinai in Los Angeles. If you have a family history of cancer, this type of testing is usually covered by health insurance. Even if it's not, it's not terribly expensive.

Please keep us posted. Sounds like you're developing a great plan.

Best wishes,

Todd

P.S. If you're having trouble finding RCC specialists in your area, one of the best ways to do this is to look for RCC studies on the national websites and find their local contacts for these studies. These are almost always doctors or nurses that are involved with RCC research and can lead you to local specialists that are well educated in RCC. (You may not know you have RCC until you have surgery and get the pathology results back. Might be worth a consultation, though, since you have 2 tumors. This is rare.) I got 3 opinions in most cases, almost always I got 2. Unless I was really confident in the doctor. My first doctor was a terrific urologic oncologist at University of California Irvine Medical Center. I was happy with him. But I was also happy I transferred to City of Hope (a US cancer center) after the surgery for followups with a medical oncologist specializing in kidney cancer.

I'm glad to hear that you are coping well with all of this.  I have a couple brief comments.

Smart patients has a really great group of supportive caregiver wives.  Your wife may want to join that site also.

Always get copies of your own test results.  It's amazing to me how often things are not related to the patient.  You want to read them yourself and ask whatever questions you have.

Lastly.....and please forgive me for this....I mean well.  So here goes:  A cancer diagnosis and treatment are costly.  There has been alot of conversation on SP about trying to buy life insurance for your financial planning for your family.  After a cancer diagnosis you cant get covered by insurance.  So just in case, if you think it's something you want, hurry up and take care of it prior to that biopsy.

Once again...I'm sorry if I have upset you.  I'm only trying to help.  One of our regrets is not taking care of this.