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New Here - Diagnosed Today - confused

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Hello. This is my first time here. The Urologist told me today that from my ct scan he is almost certain my tumor is cancer, but it looks like it has not spread. He said he can't be 100% sure until the post-op pathology report. It is about the size of a softball. The last two months have had my head spinning and some of it doesn't make sense. It started with my being sent to a Nephrologist because a couple of blood tests said my creatnine was a little high. The Nephrologist did more blood tests, urine tests, and ultrasound. He then says that the ultrasound shows both kidneys are a little smaller than normal and show signs of past disease, but didn't think anything was actively going on. Come back in 6 months. A couple of weeks later I start having severe pain on my left side and had trouble swallowing. The gastroenterologist does an endoscopy and ct scan, then calls me last week to say the ct scan showed a large tumor on my right kidney even though my pain is on my left side. So, I go to the Urologist who shows me the scans and how big it is. I ask how the ultrasound from 2 months before could have missed it. He didn't know. So my right kidney went from being too small to being huge in 2 months? The Urologist also says my creatnine looks good. He says my kidneys are functioning at around 60% which he says is ok for my age. But, a little later he says that after surgery, my one kidney will probably be at about 70%. I'm so confused. Fortunately the left side pain I have had for a few weeks has disappeared. Don't know what that was. I still can eat very little but the Urologist says I'm so small and the tumor is so big, it may be putting pressure on other organs so that may have something to do with it. I still can't get over the ultrasound/creatnine discrepancies. Who are you supposed to believe?

icemantoo's picture
icemantoo
Posts: 1558
Joined: Jan 2010

NewDay,

The utmost concern now is to get it out before it grows larger and spreads. I looked up the size of a soft ball and they start at 6 cm. and go up from there. A tumor 6 to 10 cm can still be cured by the surgery alone if you are lucky. Make sure you are referred to a knowledgable kidney cancer doctor for the surgery who could be a Urologist, surgeon or oncologist and get the surgery over as soon as possible. My surgery was almost 10 years ago and I am doing fine with only 1 kidney although I started out with less baggage. I even pose topless now. Keep us updated so we can help you get through the surgery which each of us on this board has had.

Icemantoo

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

I'm just a little worried whether it could have gotten that big in 2 months (8.5 cm). If so, waiting 2 weeks could be a big deal. Or did the tech doing the ultrasound make a mistake or did the radiologist reading it make a mistake or did the doctor make a mistake? So it hasn't spread as of last week. When is that magic day that the first cell escapes? Tomorrow? How big will it be in 2 weeks? Do I or don't I have kidney disease in which case my left kidney may have trouble carrying the load. I'll only be in the hospital one night and will be by myself at home. What if that kidney has trouble? How would I know? And I'm out in this little town with a rinky-dink hospital? He says I might be able to go back to work in one week. Really? I'm 59 years old and having a body part removed. So many questions and nobody to answer them. And now I have to go to work the next two weeks and focus on work like everything is normal. I appreciate all of you who have been through this. It is nice to have a place to vent all of this. I just wish one of you had written a manual to go by.

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

Is there a bigger hospital close enough that you could go and get a seocnd opinion and some answers to some of these many valid questions you have. Im confused too, If you are getting your kidney removed, I highly doubt you will be back to work in one week. I was off work for 7 weeks when I had my surgery done. (I am 56 yrs old)I feel pretty good now though, and so will you. Hang in there.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

No way did that tumor grow that big that fast ,that tumor has been there a while most likely a few years your uroligist will verify that it has been there a little while.The good news is kidney cancer is usually slow to grow and spread so it would not be unusual for you with the tumor size you have to be cured thru surgery ,good luck and keep us posted.

KJones1969
Posts: 158
Joined: Mar 2012

My husband's Renal Oncologist told him his tumor had been growing for approx. 5 years, said it starts out growing about 1cm a year then as it gets larger it grows faster. Get it out as soon as you can after seeing a Renal Oncologist, it could prevent it from spreading elsewhere as my husband's has.

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I agree with Ice.. get it out asap. I had a 7.5cm contained within my kidney and removed surgically about 2 months ago. I consider myself cancer free now. When they wanted to put off my surgery till they "had a spot" for me, my daughter requested the name of another hospital that we could go to.... They got me in within 4 days. You certainly have come to the right site. Everyone here is wonderful. They have helped ease my mind and provided me with much needed infomation. Please keep us posted so we can do the same for you.

icemantoo's picture
icemantoo
Posts: 1558
Joined: Jan 2010

NewDay,

Like you I was 59 when I started my journey. I never gave a second thought to kidney disease until about 2 years ago when I got gout and found out it was kidney related. Unfortunately our age and having ome kidney is going to put us into being classified as having kidney disease. However as my nephrologist states by age 70 half of us have mild kidney diseae anyway. The concern with kidney disease is more with your blood pressure and heart rather than kidney failure. Adopting some better eating habies and more aggressively watching your blood pressure should make this only a minor concern. As for getting back to work after your initiation a lot depends on your heath and type of job you have and if your recovery goes relatively well. Don't even think about going back to work, even part time for 3 or 4 weeks. Remember we are not young adults anymore.

Icemantoo

foxhd's picture
foxhd
Posts: 1921
Joined: Oct 2011

Was another 59 yo when cancer struck. Doesn't bother me about having body parts removed. But I also wondered about that "day" when the first cell escaped. I think a common theme is that the urologist tells most of us that they got it all. Too much false hope. But it was worth the lowered anxiety for a few months.

love4life
Posts: 33
Joined: May 2010

Did your dr. say if he was going to do an open surgery? Even laproscopic would require approximately 4 days in the hospital You are dealing with your life so you have to be your own advocate and get as much info as you can. Even if you have to drive a few hours to get to a major hospital I would recommend it. My mom was diagnosed with kideny cancer 2 years ago and had her left kidney removed. Her tumor was about the size of a football when they took it out. She was originally scheduled for an open surgery but we drove 2½ hours south to go to a major hospital and the dr. managed to still do the surgery laproscopic. They see so much more of that type of stuff at the larger hospitals and seem to be up on all of the newest treatments etc. You have to take care of you and make sure you get the best treatment available.

matchframe
Posts: 58
Joined: May 2012

I agree with the others here, get a second opinion and get it out as soon as possible. I am 53 years old and found my tumor by accident. My Dr. wanted to wait and see. I then went to a urologist and he also wanted to wait six months for another CT Scan. Fortunately, I have a good friend who is an Anesthesiologist at MD Anderson in Houston who I shared this with. He told me that the biggest mistake they see at MDA is mis-management at first diagnosis. He said that if people would have the tumor taken out immediately rather than wait, then the cancer would be contained. Needless to say, I immediately went to MDA and two weeks later I had my surgery. My tumor was about 2.5 cm and they were able to remove all of it with good margins.

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Sorry I wasn't clear. I am seeing a urologist with a big hospital, but it is about a 90 minute drive from home, so, if I had to call an ambulance after I go home, I don't think they are going to drive me there. Talked to my boss today. She has been battling breast cancer. She talked me into getting a 2nd opinion at the cancer center she used where the doctors and other professionals meet as a team to decide treatment on each patient. Sounds better than putting my life in the hands of this one doctor not knowing if he is good or not. The cancer center is still about a 90 minute drive, but I'm going to have to go that far to get to any big hospital. I think that he thinks 2 weeks is enough because it is robotic surgery. I got a copy of the original ultrasound today and all it says about the right kidney is "slight lobular contour is noted. This may reflect fetal lobulation." I looked that up and it is a fairly common birth defect. He says the entire kidney measures 9.2cm, but my CT scan says the tumor alone measures 8.6. Maybe I will feel better after I get the 2nd opinion. I have no doubt that cancer or no cancer, it has to come out. Just worried about the other kidney and when this kind of thing happens and you want to hurry and get it out, you could make hasty decisions you regret later. I'll update you after I get the 2nd opinon. Thanks everybody.

KJones1969
Posts: 158
Joined: Mar 2012

We found out in February my husband has Stage IV Clear Cell RCC that has metastasized to this lungs with 5 spots. We were immediately referred to a Renal Oncologist which is what I would suggest for you. Once we saw the Renal Oncologist that scheduled a consult with a kidney surgeon and within 2 weeks my husbands kidney and tumor were out. We live in a small town and the nearest Renal Oncologist was 2 hours away but it is well worth the drive considering the depth of information they know and share compared with a regular medical oncologist.

Good luck and I'll be praying for you.

icemantoo's picture
icemantoo
Posts: 1558
Joined: Jan 2010

NewDay,

A nephrectomy is major abdominal surgery and as bad as breast cancer is, RCC is much more intrusive surgery. No way should you be thinking about going back to work in 2 weeks.
I also assume the surgery will be open rather than Laproscopic because of the size of the tumor. As far as whether it is Malignant or not the odds are very small that it is not. Look at the bright side you have Cancer and you are going to get rid of it with the surgery. I have been there and done that. Look at my smile.

Icemantoo

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

My nephrectomy was supposed to be 6/20, but I could not get an appt with my nephrologist or 2nd opinion urologist in time to keep that date. The earliest they can now do it is 7/11. I'm glad I decided to see my Nephrologist. He put me at ease that my kidney disease in the left kidney is not significant enough to worry about, that he thinks it will be able to take over ok. But, he has me more worried about the cancer than I was. I told him I wanted him to shoot straight with me and give me the facts. Be careful what you ask for. Because the ultrasound report from March did not at all suggest anything that might be a tumor, he took my CT scan CD to radiology and looked at it along with the ultrasound. He says the tumor should have been detected on the ultrasound and he has made waves now since it was not. He does say though that he thinks finding it 2 months sooner would probably not have made a difference. He says my weight loss is most likely from the cancer while I was hoping it was a gastro problem. The gastro symptoms is why I had a CT scan in the first place. He says he is very concernced about the fact that I said it feels like my left ribcage is digging into me. He says that could indicate it has spread to the bones. He wrote orders for them to schedule me for a bone scan "NOW". It turns out that now means Friday. There were just a lot of things he said that have me worried. Also, I told him I was supposed to have robotic surgery. He says that it is very good in many cases and does mean a shorter recovery, but that open surgery gives the surgeon more control. I think that was the word he used, but I might be wrong. I think was trying to say sometimes its wiser to do the open surgery. After all of the conflicting test results and conflicting information I have gotten from different doctors, today, when seeing a new primary care doc for the first time and having explained everything to her tells me I should try going off of my blood pressure medicine for a while because she thinks my weight loss may have solved that problem. I have kidney issues and she wants me to go off my blood pressure med? I swear one of these docs is going to kill me before the cancer has a chance to. I'll update you when I know the bone scan results.

NewDay

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

1. I've seen on some posts where people started out with robotic or laparscopic surgery, but the surgeon had to switch to open surgery. Can you tell me why they had to do that?
2. My surgeon said he doesn't think the cancer has invaded the adrenal glad or liver, but can't be sure until he does surgery because the tumor is right up against them. I understand he might have to take out the adrenal gland out which is ok if I have another one. But what would he do if he goes in and finds it has invaded the liver? I know he can't remove the liver. I have a call into his office, but just wondered if anyone here knows?
3. If you are referred to a young surgeon who specializes in robotic surgery and he says he can do it robotically, should I assume that is the way I should go? I could see where someone who specializes in that type of surgery might be biased about the best way to go. Something my nephrologist said makes me think robotic is not always the way to go in some situations but didn't think at the time to ask him what he meant.

icemantoo's picture
icemantoo
Posts: 1558
Joined: Jan 2010

New Day,

1. Mine was laproscopic which means with a smaller opening. After mine they developed robotic allowing more to be done with a smaller opening. Open is used either because of the size of the tumor, difficulties which may arise or a futher examination of more organs is necessary. Going from laproscopic to open is often a game time decision.

2. I will leave this for the doctor to answer.

3. It is mostly the younger surgeons and Urologists who are trained in the new procedurs (laproscopic and robotic) which procedures were not around 15 years ago. In my doctors Urology practice only 2 or 3 of the 20 plus doctors do these surgerys and except for 1 they are the younger ones. I had the same discussion with one of the Urologists my age (over 65) in the largest Maryland practise and he advises that it is only the young guys in his practise doing this also.

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I just found this site which is really good at explaining everything that goes on when you have a robotic radical nephrectomy.. Its really good.. be sure to scoll past the diagrams and read all the way to the bottom

http://urology.ufl.edu/MIS/robotic_radical_nephrectomy/radical_nephrectomy.pdf

Hope it helps

~Judy~

D109
Posts: 10
Joined: Jun 2012

NewDay,

I am not a doctor, but about a month ahead of you in this process. I am by no means an expert, but here is my experience. I did not figure out from your posts if they are planning on taking out the whole kidney, or just part.

1. Doc told me that laparoscopic is preferred, because it is easier on the body, but he may have to switch to open due to my body type / size (I am a big boy.) His point was, that at least at my age (45), if he can't get at the tumor - a open partial is preferable to a laparoscopic radical. I think it all comes down to how much room he has to work, and a longer recovery time is better than losing kidney function.

2. I don't know about this, but I am sure the doctor will discuss it again before your surgery.

3. A surgeon doing robotic can still switch to open if needed.

I eased back into work after two weeks. My surgery was three weeks ago today. I say get the second opinion, drive to a bigger hospital, don't be afraid of the young docs coming out of school with the latest training and technology. And lastly keep yourself busy with other things. There is no point in stressing out about this now. I did too much research for my own good before hand and got my self a little more riled up than I should have.

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