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What to expect / Questions to ask

Gaines721's picture
Gaines721
Posts: 6
Joined: Sep 2018

Good afternoon!  I've spent a bit of time reading some of the topics and felt I might benfit by asking a few questions.

 

I'm a 37 and was found (incidentally) to have a mass on my left kidney on 9/3.  Follow up ultrasound showed it appeared to be solid and the docotor scheduled a CT w/ contrast.  I recieved those results yesterday evening and they show not one but two masses both on the left kidney.  The first is 4 x 3.6 x 3.2 cm and the second is 4.1 x 4.5 x 4.8 cm.  The impression is two left renal masses worrisome for renal cell carcinoma.  My appointment with the doctor is Friday morning.

 

I'm mainly wondering what to expect and if there may be any questions I should be asking at my appointment. I'm very much a "go with the flow" type guy and can be "laid back" to a fault but my wife is neither of these.  I want to make sure I ask alot of questions, and the right questions, to hopefully help ease her mind.  I'm currently feeling that they'll want to remove the kidney and I'm good with that if it needs to be done.  My wife is already wanting to line up people to test for possible matches if somthing should happen to my other kidney. Any guidance would be greatly appreciated!  Hope y'all are having a good one! 

cboone75's picture
cboone75
Posts: 43
Joined: Feb 2012

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. 

Gaines721's picture
Gaines721
Posts: 6
Joined: Sep 2018

A football?! I guess I'm greatfull I just have two litlle golfballs.  Hate to hear that yours is back and hope it all goes well.  My wife is sending a proxy because she is already planning on taking time off after the surgery that we aren't even sure I'm having yet lol.  Good luck to you too.

icemantoo's picture
icemantoo
Posts: 3230
Joined: Jan 2010

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

JoeyZ's picture
JoeyZ
Posts: 205
Joined: Mar 2018

Agree with what the others have said here. I wish you all the best. Hopefully, it has not spread too far and is well contained. Both tumors! 

Take a lot of deep breaths. Ask a lot of questions, both here and at the Doc's office!

Read people's profiles here. I learned A LOT doing that in the early days.

I had a 12 cm monster and had it out just 6 months ago now. So far, so good. 

Just take good care of yourself and do what they ask you to do! We're all always here for you, too.

Gaines721's picture
Gaines721
Posts: 6
Joined: Sep 2018

Thank you both! My urologist is well spoken of and specializes in laparoscopy.  That sounds preferable to open surgery thats where things go.  So far I really haven’t felt much stress or worry. Maybe I’m being strong for the wife.  I will definitely be reading more and encourage my wife to do the same.  Just browsing this forum today has been great to gain a little knowledge and comfort knowing things can go great. Appreciate y’all!

Hoss79's picture
Hoss79
Posts: 78
Joined: Nov 2017

I too was 37 last year when I got the dreaded words. This group has helped a ton!! I wouldn’t make the same mistake I did and read the internet about RCC. This group and smart patients are where I turn to get info because it’s poeple just like me going through the same issues. From the time of my ct showing my mass on my kidney to surgery was 3 weeks. Had my right one removed via robotic. I was out of the hospital in 22 hrs and back to work in 3 weeks. The first few days weren’t fun, but I kept walking. I hope you have a comfy recliner because it will be the most comfortable thing you will find. Good luck and keep us posted.

a_oaklee
Posts: 447
Joined: Nov 2013

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.

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

Echoing what others have said, don’t search Google for information.  Some amazing advancements in treatments have been made in recent years that may or may not be reflected on websites you visit.  I made the mistake of searching after my initial CT scan and before I saw my urologic oncologist at Stanford and I scared myself silly as a result.

Gaines721's picture
Gaines721
Posts: 6
Joined: Sep 2018

Thank you all for the responses!  I've tried to limit the amount of searching I've done and have hopefully stuck to fairly reputable sources.  Still feeling good, and stress free, but ready for my appointment Friday.

TeeBizzle's picture
TeeBizzle
Posts: 17
Joined: Sep 2018

Depending on the locations you may want to find an expert in partials otherwise they may just go in scoop out the kidney and cash out. I just recently had mine done a few weeks ago by Dr Russo at Sloan in NYC. He's a big proponent of saving as much kidney as possible. I was lucky that it was small and early. 

I didn't want to bring my wife- she's a bucket of stress tears, but it was good having a rational head next to you taking notes. If you're going to line up anything find a second surgeon who handles this procedure and get their opinion.

I always ask for first surgery appointment of the day. the suspense is murder, plus fasting all day. 

Make sure they cover everything you put in your body- medicine, supplements, teas with antioxidants. Make a list they'll tell you what to stop taking before surgery.

Best of luck.

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

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

a_oaklee
Posts: 447
Joined: Nov 2013

The best source for current knowledgable information is Smart Patients.com

I've been at this for 6 1/2 years plus.  

Csn also has a vast amount of knowledge but smart patients has more stage 4 patients with vast experience.  Both sites, SP and CSN, are friendly and supportive.  Quite a number of people belong to both groups as they are both highly beneficial.  

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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.

Gaines721's picture
Gaines721
Posts: 6
Joined: Sep 2018

Again, a big thank you to everyone that has responded.  The advice, information and stories I've gained from here and smart patients has been fantastic.  The wife still has her moments but has calmed down over that last couple of days (mostly because of the info I've gleaned from y'all).  I'm really not too concerned at the moment and feel that I'll still feel the same after the appointment tomorrow.  It is what it is and I'll handle it to the best of my ability.

My parents will be coming to the appointment with me.  My wife would prefer to have another day to take off after a surgery if that is where this leads.  I think between the three off us we can ask enough questions, and take enough notes, to make sure she'll be well informed afterwards. 

I've emailed the NIH for advice on genetic testing and have been looking at options for a possible second opinion.  All in all, I'm looking forward to getting this ball rolling tomorrow.

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

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.

JoeyZ's picture
JoeyZ
Posts: 205
Joined: Mar 2018

All the best to you and please keep us posted on what they tell you. We're always here for you.

Gaines721's picture
Gaines721
Posts: 6
Joined: Sep 2018

My appointment went well.  Asked plenty of questions and my docotor answered them all.  I'm waiting for a call from interventional radiology to schedule the biopsy and will follow up with the doctor in three weeks.

Thanks again for everything and hope everyone is having a great Friday!

a_oaklee
Posts: 447
Joined: Nov 2013

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.

 

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