1st Urology appointment tomorrow

Darron said:

The C word

i hate that you have that long of a wait for results. Please remember that the C word is not a death sentence. We were all scared when we heard it for the 1st time. If you come prepared with questions and you are prepared to start the fight, there will not be any room for anything but determination. I will be brief and I am sure others will add tiny list of comments.

1) how big is it

2) is there any apparent spread to other areas. if cancer, get cheat and abdominal CT to check for other spread)

3) who is the best and most experienced surgeon to get it out?

4) who is the best kidney cancer oncologist in the area (go to a kidney specialist, not just an oncologist)

5) do not go to the internet for statistics!!!! The data you read is based on stuff from 5 years ago...the treatment landscape has changed dramatically in 5 years.

6) get a copy if your scan on disc invade you want another opinion. get a hard cooy of the radiology report.

those are some general things. Write down any questions before and being your questions with you. write downte responses as well. Whatever the outcome, you willbe emotional and will not remember.

Best of luck, hope it is a false alarm. If not, you already have a wealth of experience to tap into with the members of this group.

Best of luck, keep us posted.

 

Karen,

All of us on this board have heard the C word. That and major surgery can scare the s--t out of anyone. It sure did scare me 12 years ago.

 That being said at 1.9 cm it is probably Cancer ad probably will have to come out by surgery. Occasionally even after a Cancer diagnosis it turns out benign after a post surgical pathology.

The important thing is that the probable tumor was caught early and your prognosis for living another 40  or 50 years is excellent.

I wish I cound sugar coat the surgery or the C word but I can not.

Keep us posted. You wil be fine.

Icemantoo

Darron's pointers are excellent. I hope you are taking someone with you? It's very good practice to have someone with you to get a second set of ears. Write your questions down and don't rush getting them all addressed. Take notes if you want to.

I was a weird case, being all alone in a city far from home (I was on a business trip in an ER when I found out). However, after that I found having someone else with me at my appointments was a good practice. In fact, I had 3 people on one of my most important, pre-surgery appointments and I found it was really great to have the support. The doctor will have perhaps 1-2 people present, and having 3 others there with me helped me stay focused and get all my questions covered and not be pressured into letting them leave the room too quickly.

My partner is a non-native English speaker, so I hadn't planned to have him in the consultation with me. I'd planned to have my best friend and my son (who is 28), because I didn't expect my partner to catch everything with all the special medical terminology being thrown around. Then when they called us to go in to the exam room, all 3 got up to go with me and I realized I hadn't told him he wasn't invited. The nurse said it was ok, so all 4 of us went in. They had to put us in a special room because there were 4 of us. I had my list of questions which I had gone over with my son and best friend to make sure I got them all answered.

It was pretty funny, because my urologist is head of the department, and always travels with an entourage of medical students. By they time he and his students entered, there were 7-8 of us in the room. He came in and answered all of my questions. I felt like he spent extra time and attention because he had more than just me across from him (he had an audience, after all, on my side of the room and that really seemed to slow him down).

After he left, I was trying to remember the answer to his questions. I asked my friend what he said, and he couldn't remember. Then my partner says "Why don't we just listen to the recording!" and he pulls out his phone. It turned out because his native language wasn't English, he'd thought ahead to turn his phone on and record the whole thing. I thought that was so great and I was caught off guard by his helpfulness in being there. I was able to listen to the whole conversation again and really got all my questions answered.

So, write your questions down. Take someone with you. Go over your questions with whoever your take with you so they know what you're trying to find out.

I know it's scary. I was absolutely scared. You'll get through it. There's a lot of unknown at this point, but there are great possiblities that you caught it early (or that it's nothing), so stay positive.

And best of luck to you.

Todd

When the urologist told me it was probably cancer  I opted for a biopsy to know for sure.  I did howeer cry once I got in the car.  After that I realized it was out of my hands and I had to go with the flow.  The biopsy report came back positive and it didn't phase me and even going into the operating room I was calm which is not what I thought would happen when the first time the C word was mentioned.  

In 5 days I will be 2 months post surgery and I feel fine all though everytime I get another medical bill I think I could have a heart attack. I am greatful that the cancer was found before it could spread and I have more years with my children.

Cindy

foxhd said:

Karen, look at things diffeerrently. Tell yourself that you are excited that you are going to do the best things that you could possibly do for yourself and your family. Look forward to facing this challenge head on. Tell yourself that you are going to kick butt. Be excited that you have the chance to deal with this with good medical care and supervision. Not everyone gets your opportunity. Those with positive attitudes have better chances with success in all we deal with. Now go get'em.

Karen, I was the same way when first told in December that it’s most likely cancer, and I too was dreading the chest x-ray, especially because I am a former smoker. But Fox is right; the alternative to all this is that they never found anything and it could be spreading all over the place now instead of being found and taken care of. The surgery was not nearly as bad as I built it up in my mind, and neither was the recovery.  

Welcome Karen, glad you found this site! There are amazing folks here who have been to hell and back that can offer you the best information AND support! Please stay, if you like.

When I went to meet the Urologist I was not scared at all, know why? Because I was on this site first. Someone here sent me to a very informative link that explained so much AND even showed the type of surgeries to expect. That's me, I like to be fully informed.

But I am lucky with a small, stage I tumor but because of where its located it was recommended to remove the whole kidney. The ONLY thing no one told me was that I could no longer taking NSAIDS (lbruprofin/motrin type) and I was on a daily use for another condition. But still... felt lucky to have a wonderful, skillful Urologist/surgeon.

ONE thing I may recommend is to stay focused on TODAY!! Thinking ahead, worrying about the "what-ifs" will use up much needed energy necessary for health and well being. Your family will pick up on that tension too.

Not sure what your faith/belief system is, but USE it if you are a believer. You will be guided, so listen to that "inner voice" and you'll get through.

Now it is natural and normal to panic, be in shock or even in denial etc. Our emotions are not right or wrong so however you adjust to them, its okay.

Know that we'll walk this journey along side you if you want us to.

Warm hugs, Jan

Karen0074 said:

Update

Saw urologist Tuesday, who thinks from looking at C T lump is likely to be cancerous as it's grown and has its own blood supply. I will have a partial nephrectomy in 6-8 weeks. I have to have a ct chest in 2 weeks that I am dreading more than the op. I thought I was coping well but spent yesterday morning crying at my Drs office. I'm sure it will get easier I need to get a grip!  Hope you are all doing good.

 

Karen

It is nice to hear that they scheduled you for a chest CT. It provides a good baseline for future scans, and ais a good check that there isn't any spread. Nezt step is to find a good RCC oncologist. I assume you are with a urologist/ surgeon. Of you do have a recurrence after surgery, it is good to already be comfortable with an oncologist that specializes inRCC.

Hope the chest comes back clear, keep us posted.