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1st Urology appointment tomorrow

Karen0074
Posts: 64
Joined: Apr 2014

Hi everyone, I have my appointment tomorrow morning and I am terrified of what they are going to tell me is on my CT scan. How do you get past the fear of that word  - cancer. The two week wait for this appointment has been pure torture. I have been looking at my children and trying not to burst into tears. What will happen at the first appointment, anyone know?  

Darron's picture
Darron
Posts: 303
Joined: Jun 2013

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.

 

icemantoo's picture
icemantoo
Posts: 3220
Joined: Jan 2010

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

Cate1273's picture
Cate1273
Posts: 35
Joined: Feb 2014

Karen,

 

  Darron gave you great advice. The only thing I would add, is have someone with you who can take notes if possible, because as you are gettiong answers to the questions you have prepared more pop up, It is a scary time, and hopefully you will get good news!! Prayers are with you!!! Best of luck!!

Cate

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

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

pamstayner's picture
pamstayner
Posts: 111
Joined: Apr 2014

Karen... at my very first appointment, my husband came with me.  I am part of the University of Davis Medical Hospital and Comprehensive Cancer Center in Sacramento, Ca.

It was just a meeting of the Doctor and the gaggle of his residents... no exam or anything like that.  They showed me the CT scan, and let me know what the verdict was.  In my case, we then set a surgery date.. I filled out a lot of papers, signed lots of permissions slips to let them have my kidney for research projects. I had three groups wanting parts of my tumor... the Doctor told them all to wait... there was plenty of it to go around.

I understand your worries. And the sadness about what if.  what if it's bad news.  what if it's cancer..  I practiced saying that word in my head so I would stop being scared.  Lots of people have cancer and it is treatable, manageable, and not always the big death sentence we fear.  Lots of members on this board have been here for a long time. (as in years and years)

So please know, many of us will have you in mind all day when you see your Urologist... and hope that you will not have bad news.  Please let us know your results... we can walk this path with you if you need... and will rejoice with you if your news is good.

Pam 

cjhawk38's picture
cjhawk38
Posts: 44
Joined: Dec 2013

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

Karen0074
Posts: 64
Joined: Apr 2014

Thank you all for the lovely replys and advice. I have written down Darrons questions to ask today. I know you have all been through this 1st part and have come out the other side And that helps so much. My husband will be coming with me today so I will have someone there. Will update later. thanks again for your support x

Karen0074
Posts: 64
Joined: Apr 2014

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

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

APny's picture
APny
Posts: 1948
Joined: Mar 2014

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.  

 

Karen0074
Posts: 64
Joined: Apr 2014

Thanks Fox, that is exactly how I intend to deal with this. I wish I had half your optimism but I am feeling better today.

Srashedb
Posts: 482
Joined: Dec 2013

Karen:

my husband's mass was seen on an MRI and confirmed with CT scan in June, 2013. He had the chest, brain and body scans. He had 2 spinal mets.

For several reasons, the nephrectomy was not done until Sept, 2013 and I was terrified at its possible growth in those 3 months.

it didn't grow in the interim; he has scans every 3 months and believe me, I totally get the anxiety. He is scheduled for his 3d set post nephrectomy in 2 weeks and already, I am stressed.

Hang in there! Look at your upcoming scans as vehicles to eliminate mets.

Sarah

Darron's picture
Darron
Posts: 303
Joined: Jun 2013

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.

cubsfan9
Posts: 66
Joined: Oct 2013

Good Mornng, Karen!

I truly understand your emotion right now.  When my husband had his recurrance (after 8 years) I was a basket case and cried over everything.  I am not usually that emotional, but...

You are on the right path, and your doctor will be able to give you more information after the surgery.  The fact that you have found this site and its unique support system is a big plus!  You might also want to visit SmartPatients.com as there are a number of members with great wisdom and information about treatments, trials, etc.  I don't know where you are located, but encourage you to have an oncologist experienced with RCC.  Good luck and keep us posted of your progress.                         ~Sharon

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

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
Posts: 64
Joined: Apr 2014

Thanks for all your responses I am feeling positive today. I know it's best to cover all bases by getting scanned sooner rather than later so feeling better about that. Hope you are all having a lovely day, the sun is shining here. Thanks for the hugs Jan4you, just what I needed yesterday. also much thanks to icemantoo who really cheered me up. Onwards and upwards eh!

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