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Recently Diagnosed with Stage II Kidney Cancer - Very Scared of the Surgery

diana j chicago
Posts: 8
Joined: Jun 2009

I was recently diagnosed with Stage II Kidney Cancer. I have a tumor in the upper pole of my right kidney. I have seen two local urologists (in Northwest Suburbs, IL) and due to some varying opinion on additional tests needed to adequately plan for surgery, I have a third opinion scheduled for this Thursday (6/11) in Chicago at Northwestern.

Not only am I already overwhelmed with the research and just things to do and get organized before the surgery, but I'm scared of the actual surgery itself. I think that some of my fears come from the fact that my father died during a bypass operation when he was just 54.

I guess I'm looking for some encouragement as well as some insight on what to expect during the entire recovery period. So far, it seems most likely I will have an open radical nephrectomy. We will see if Northwestern concurs.

Diana

bangormom
Posts: 59
Joined: Dec 2008

Hi Diana,

Sorry you've had to join the club no one wants membership in. I want to give you a website that deals only in kidney cancer. Here it goes, kidney cancer association.org they have many people that have been there done that, and alot of excellent info on treatments and surgical options. And who are the best doctors in your area, you need to see a doctor who speacilizes in kidney cancer, remember this is a rare cancer as you will come to realize.

I had my left kidney, adreanal, gallbladder, and they had to clean out my IVC(large artery that returns blood to the heart from the lover half of the body). Yes, it was extremely scary, I thought I was going to back out right before it, but I didn't, I as you can see got through it. My recovery was long, but not bad for all that I had done. I was in the hospital for 10 days, but that's not the norm. I am strongly suggesting that you go to the website I recomended above, that is where I got most of my info from, and it really helped me to make some decissions that needed to make, like I said they have alot of great info and the people are freindly to.

I hope I was able to help you in some way, here's a little about me: I am 45 was dx'd at 44, it'll be a year in august. I am stage 4 furman grade 4, with multiple mets to other areas, lungs liver lymphnodes. I was already stage 4 when dx'd, my cell type is papillary type 2.

Oh, just to let you know you should get a copy of all your scans and tests, they are free, and they help when and if you need to see a different doctor, it's really good to keep records like that they have come in handy for me many times.

Maryann

imbkuz
Posts: 52
Joined: Apr 2009

Please please listen to Maryann. She is my angel. She guided me to www.kidneycancer.org site and they have a hot line where you can get names of specialists in your area. Again please listen to her about getting a surgeon and oncologist who only specialize in renal cell carcinoma (kidney cancer). It's a very unique cancer. I'm so sorry you have to join our family. I think you will feel more at ease after you visit the kidney cancer site as unsettling as things are. My husband had a radical nephrectomy Stage IV very recently at a top notch hospital. His tumor was 10.8 cm and the surgery took 2 hours. He was walking over a mile the next day and he went home after a 2 day stay. They did give a pain killer button to push for the pain after surgery. We are now in for a long haul since it metastasized in a couple of areas. Ugh. Wishing you the best.
imbkuz

bangormom
Posts: 59
Joined: Dec 2008

Hi Imbkuz,

Thank you for your kind coments, they lifted my spirits today!

Maryann

sailorguy
Posts: 1
Joined: Jun 2009

Hi! I just went through an operation to take out my right kidney. Cancerous growth indicated Stage 4 but the doctors feel they got all the tumor had. Also had some lymph nodes taken out and 1 was found to be cancerous. I will have to go on chemo shortly but just as a preventive measure. The tumor was a "nasty" canerous growth and that's why I'm on stage 4.

Don't be afraid of the operation. Do get a second/third opinion. My first direction was to a hospital that gave me 5 minutes of their time and that was it. I chose a teaching hospital 2 hrs down the road and it was the right choice. (Make sure you feel comfortable with the operation team which includes the doc performing the surgery and the oncologist for after care).

Yes, there will be some discomfort. Yes, there will be moments of pain and dispair. Do not get caught up in the negative aspects. Think positive and look at it as a first step to becoming a more healthy person.

My recoup time was to be 7 days and I was released in 4. My age and physical condition played an important role in this short period of recovery time after the operation. Take all the time you can to get over the operation itself and take each day as a new day in your path to a new you.

My situation is a bit different as my wife is a nurse and that helped quite a bit with the care and questions that needed to be asked towards the surgery team.

Don't worry too much about the operation. Go in with a positive attitude. Do what the doctor's say and ask questions until you are satisfied.

Take time to discuss with others and do not keep all your feelings boxed up inside. Talk with your friends and family and let them be a part of your recovery.

Let us know how you make out with your 3rd opinion.

Sailorguy

tamralynn
Posts: 2
Joined: Jun 2009

My mom was diagnosed with renal cancer last November. She is stage 4 also. She is 62 years old and they removed her left kidney. She was in the hospital for 5 days I believe. They told her she is clear but because my Uncle is going thru the same thing, they are both on an experimental drug. She took the surgery pretty well considering her age. And recovery has been long, but she is doing well. Of a family of four. We have has prostrate (my dad) 5 years ago. Thyroid,(me) two years ago. And now mom. So get all the opinions you can and don't settle with anything you are uncomfortable with.

AMichael50
Posts: 18
Joined: Apr 2009

Hi Diana J. Please don't be afraid of the surgery. I was also apprehensive before mine, but I suspect we may all feel that way to some degree or another.
I'm new to this board but have been lurking around here for a couple of months now. Today is my first post. I have read between the lines of the posts and I read a lot of hope here. (thank you to all before me). I had my left kidney removed laproscopic on April 29th. The first couple of days after surgery I hurt some, but the pain meds took care of that, A month later I'm playing golf again.
7 cm tumor, Stage 3b Clear Cell Renal carcinoma. I guess they rated it stage 3 because it had grown into my renal Vien a small amount, how ever my Urologist was able to get clear margins. So far CT scans and MRI;s have showed no other signs of this disease. I'll get another CT scan in September.
My question to anyone who can answer is. How do they calculate my risk of re-occurrence?
God bless each and everyone of you.

bangormom
Posts: 59
Joined: Dec 2008

Hi Michael,

I believe they go by the furman grade, that also runs 1-4, it's different from regular stage of 3. Some people have reacurance and some don't. The higher the furman grade and the larger the tumor the more likely you are to have a reacurance. Rcc is a very tricky cancer and watching it on a regular basis is your best defense, if a met is caught early enough, then the outcome is better. Are you seeing an oncoligist? If not get one, a urologist are not as educated in this cancer as you would think. I hope this helps you to.

Maryann

diana j chicago
Posts: 8
Joined: Jun 2009

Thank you all for the replies. On the advice of a couple, I did contact the Kidney Cancer Association a couple days ago to ask about kidney cancer specialist in Chicago. Ten minutes after my appointment this morning they returned my call and gave me the name of the Dr. who I had just seen.

I liked this 3rd doctor and feel I've made my decision to go with him. I felt comfortable right from the start and felt he was extremely thorough in explaining things. I will be undergoing more tests before the surgery, but he explained his reasoning for all the them and I felt comfortable that all the right things are being done in advance to ensure the safest and best surgical outcome.

I never dreamed I would be a part of this little club and I am often still somewhat in disbelief about the whole thing. It's very strange at times - like it's some kind of dream.

To cope and also remember many of parts of this journey, I began my own Kidney Blog. It's at http://web.me.com/claywaterbuffalo/My_Kidney/Welcome.html. It helps me to vent and remember things and I hope it might help others as well.

So today I am a little less scared. Thank you all for the contributions.

Diana

HSacklow
Posts: 3
Joined: Sep 2009

Hi Diane, this is my first time here. When I signed on today, I expected to just stay in the background, read entries and build my confidence before I add my comments. But I read your post and could hear myself saying the say things. I'm 65 years old and in June went to my GP for a rountine visit. During the exam he felt that my spleen might be enlarged. Ultrasound and CT later, I was told it was not my spleen but a mass in my left kidney that looked very much like it was cancer. After doing my research, talking to others especially my husband I decided to have my left kidney removed. I did not want to wake up each morning and worry if the cancer had spread. 5 weeks ago they did "hand-assisted laproscopic surgery" to remove the kidney. It was stage 2 renal cancer but contained within the kidney. It had not penetrated the walls of the kidney or any cells around it. I was very lucky my doctor thought to check me out. I was in the hospital 4 days and within the week was able to zip up my jeans. I've been able to get out and do things almost from the day I got home. Of course my energy level was very low but has been increasing daily.

My hardest moment was when the surgeon gave me the lab results. "You had stage 2 cancer. Congratulations you're a cancer survivor." This has been very hard to absorb!

I just had my first set of bloods and my remaining kidney is functioning at 100%. I will be checked -- blood work, scans, lab tests etc. -- on a regular basis (every month right now) and watched for the next 5 years.

My advise is to do your research, ask questions, ask questions again and make sure you have confidence in your doctors and surgeons. The support of family and friends are very important.

Hope this helps!

diana j chicago
Posts: 8
Joined: Jun 2009

Thank you for the post of encouragement. I can relate to much of what you have posted.

"You have a mass on your kidney"

Seeing the words "Renal Cell Carcinoma" written on a Doctor's report.

Going from one doctor to the next for opinions.

It was all so very surreal. At times I felt I was lost in a Salvidor Dali painting, and those melting clocks were all ticking!

I am now just over 2 months post op. I had my surgery on 7/21. I was in the hospital for 7 days. Unlike the approach they took for your surgery, mine left me with a beautiful gorgeous 12 inch long scar. And I'm not kidding when I call it beautiful. I show it to everyone and it doesn't bother me at all. I call it my "new life scar". In addition to the radical "big slice" nephrectomy, I had a rib resected and my lung collapsed (on purpose) during the surgery. This made things even more painful and the recovery process even longer.

My medical leave ended/first day back to work was just Monday 9/21. I was out for exactly 2 months to recover. My surgery took a lot longer to be able to zip up some jeans! In fact, I could not even wear normal slacks or jeans for some time. My mid-section is still swollen inside now and numb and I still endure pain on my thigh from collateral nerve damage from pressure on my thigh during the surgery.

BUT....

It's great to be alive and to have hope that this is behind me now. Yes, we have to wait out the recurrence thing, but my attitude was "I'm going to kick this cancer in it's ass" and I hope that I've done that.

There were some long days, but for anyone reading this, please know that those of us with kidney cancer and who require a nephrectomy may have very different surgical approaches and our healing times may differ.

If I can say anything to anyone to help... ASK a TON of QUESTIONS. KNOW YOU HAVE OPTIONS. SEEK SUPPORT FROM FAMILY AND FRIENDS. And FIND an OUTLET FOR WHAT YOU ARE GOING THROUGH.

My outlet was a blog, you can link to it from my profile within this site or by going directly to http://web.me.com/claywaterbuffalo/My_Kidney/Welcome.html

My love and best wishes to everyone out there going through this.

KICK SOME CANCER ASS!!!

Diana

nicolek
Posts: 1
Joined: May 2010

Hi Diane,
My mom was just diagnosed with kidney cancer and we are meeting with an Oncologist on Wednesday. I want to make sure she is seeing top doctors and we live in Northwest suburbs of Chicago and are willing to travel. It looks like you also live in this same area, can you tell me the names of the doctors that you ended up going to? It looks like you did extensive research on this.

Thank you!

Nicole

diana j chicago
Posts: 8
Joined: Jun 2009

Another thing I'm scared of... tests with Gadolinium dye. Has anyone had these? Have you had any side effects?

Diana

bangormom
Posts: 59
Joined: Dec 2008

Hi Diana,

I don't know the names of the dyes they use for ct or mri, but I do know that the ct contrast that they inject is harmful if you have a high creatine, or gfr levels, in other words, if your remaing kidney is not functioning properly, they wont use it. Best thing to do after and before scans is to drink alot of water, that helps flush the kidneys, and helps to preserve their function. Hope this helps.

Maryann

bellaboosnicks
Posts: 1
Joined: Jul 2009

Hi Diana

I understand what you are going through. I was a 36 yr old healthy female. and was diagnosed with stage 1 renal cell carcenoma in May. Right kidney upper pole also. I just had surgery in DC on 7/7 amd went back for check-up yesterday and they got it all. I was more worried about being knocked out than anything but all went well. Good Luck

Kelly

golleedolly63
Posts: 11
Joined: May 2010

I feel for you very much. My 41 yr old son was just told he has kidney cancer. It is very is a very diffcult time. It is very confusing as to what to do next. It is scary & it is a lot to handle all at once. The cancer society sent out a booklet that was very imformative. They have stated that they are having good results with several procedures & surgery. Sometimes they do not have to take out the intire kidney. An operation is a frightening thing to face. We have been praying for my son & reseaching as much information as possible. He has three children & a wife. The doctors do the surgeris all the time & have good success with them. Put your faith in GOD to be with you & the guide the doctor during your surgery. It needs to be taken care of before it spreads to other organs. Know god will be with you & we will pray for you. Best of luck & be with GOD. golleedolly63

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