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New Kidney cancer diagnosis.....What now?

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Hi:

To everyone here,much continued health and happiness to you and your families.
Yesterday the Kidney Doctor told me that I have a 4cm tumor on my right kidney. His exact words were its a tumor, its malignant and its cancer..... Wow..
After that I just went numb. He said he only removes the entire kidney so I have been
referred to someone else in his office that does partial removal but not until next week.
Today I had a chest xray and a bone scan and I am completely petrified.
I have told my family but I still haven't wrapped myself around exactly what all this may mean to me or to them. Talking too much about it with them makes it worse as I am not anywhere near being able to get past my own thoughts and feelings about it.
And actually I don't really know what my feelings are yet if you can understand that.
Seeing it out in the open like this helps a bit gives me some hope that maybe it won't be as bad as I imagine it is or will be. Does this get easier to figure out ?

icemantoo's picture
icemantoo
Posts: 1604
Joined: Jan 2010

Dear Kat,

A little over 9 years ago that was me playing your role. A CT scan disclosed a 2,7 cm little rascal on my Kidney which measured 4.2 cm on the biopsy after surgery. My Nepherectomy was on 8/1/2002 after I had just turned 59. They were not doing partials then. Mine was laproscopic.

Eleven months later my family took me to club Med if Florida where I went water skiing. This past January I went River Tubing in Dominica. This December I am looking into ziplining and parasaling on my Caribbean Cruise. I also look forward to the weddings of each of my 5 grandchildren currently ages 15,14,13,12 and 10 before I leave the mother ship.

Assuming you have no complications with a 4cm little rascal you should be able to live a full and normal life without future medical intervention after the inital surgery. You will have regular CT scans etc, though.

The surgery is not fun, but it beats the a;ternative.

Best wishes,

Icemanto

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

To Iceman, Ej,Jamie, Minngirl and Donnalee

Thank you all so much for sharing all of your advice and experiences with me. I feel a little more at peace with the situation now and I cannot express how much it means to find this place. I read quite of few of your stories prior to joining and learned more in a half a day then I have been able to pry from the medical people I have dealt with the last few weeks. I just celebrated the 11 anniversary of my 39th birthday so I was hoping to live to see at least 90 to make sure my kids need to wipe my butt at least once before I head home to the land of milk and honey... :) I'm still pretty numb but all your comments have helped ease my mind tremendously.
My doctors appointment with the kidney surgeon next Monday had to be rescheduled as my job feels that a required training is more important than dealing with cancer... How funny is that irony seriously? LOL. Once again , thank you all for the support, I am so very grateful to have found you all.
My best
Kat

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

It's really a good thing that this tumor was caught while it is still small. (The largest one I've heard of was 33 cm.) The smaller tumors usually have the nephrectomy, partial nephrectomy, or cryoablation (freeze killing the tumor) as the cure. And, as Iceman mentioned, you can lead a perfectly normal life on one or one and a half kidney.

The surgery can be either an open surgery or a laproscopic surgery. It seems like the total nephrectomy (removing the entire kidney) is more likely to be done laproscopically. The partial must be harder because they tend to be open surgeries. Why does it matter? Recovering from laproscopic surgery tends to be easier. Cryoablation can be done either way.

You can expect to have a surgery date scheduled pretty quickly. You'll want to prepare your house for the first few weeks after surgery when you won't be feeling up to doing anything.

Ok, that's really what you need to know. Other stuff that may pop up on the internet invariably is talking about HUGE tumors that are in worse-case-scenario. Don't freak yourself out about that. Lots of us are living perfectly normal lives, after kidney cancer surgery.

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

No, not really. You can think of this experience as a journey. Every day you will learn a little more and asking the right questions of your doctor is important so be aware that you will have to do things that help you retain the information like writing down questions and answers to those questions when you are at the doctors office as the information can be technical. Your emotions are totally normal for what you have just been hit with and the first few weeks are terrifying.

The good news is that your tumor is relatively small. The results of your follow on CTs and bone scan will be important as this will determine if there is metastasis but given the size, I would not expect that to have happened so let's assume that for the moment...

The next step is to determine where the tumor is. Upper lobe tumors tend to not allow partial nephrectomies due to their proximity to major blood vessels. Lower and mid lobe tumors are more resectable via partial nephrectomy but make sure that you have a very skilled surgeon that you feel comfortable with. IF you have any doubts about your urologist, get another one!!! This is an area where you want the best of the best in the operating room. You will have to base your decision on research of their credentials and your gut feeling when you discuss with them the procedure. This is also where you need to have that list of questions so that you can probe your surgeon regarding the procedure to get that gut feeling.

Questions include:
Where will I be treated?
When will this be done?
Will this be open or laproscopic?
Partial or radical?
How long will I be in the hospital?
How will my pain be controlled?
What will I need to do at home afterwards?
What tests will I need to complete before/After?

Stuff like that..... You will be able to get a good feeling about the doctors capability, confidence and general demeanor. This is important for your peace of mind.

On the emotions side, you were just in a train wreck... Expect to be in shock for some time as you wade through this new world and try to figure it out while in shock. You will be exposed to new language and learn things about your body that you really didn't want to know. I explain that I was blessed with 45 years of denial about my body before I was diagnosed. Now, I could attend a seminar of kidney cancer doctors and understand probably 80% of what they talk about... IT SUCKS and is cool at the same time!!!

As you move through the initial diagnosis towards surgery, you will be in a state of suspension. Things will seem to take forever (Test results) yet you will be moved very rapidly towards your surgery. The preparation for surgery is both mechanical (hibbie cleanse, bowel prep...) as well as emotional (Crying, anger, depressing, anxiety and then back to crying). This is all very normal and you should expect it. Give yourself a break and spend the time you need to get used to it all. It you need to leave it alone for a while, leave it alone and go do something you enjoy. Allow yourself to be as normal as possible through this as it will lower your negative feelings. Cancer thrives on negativity so don't let it have what it likes. Starve it by working on positive thoughts. Guided imagery helps A LOT!!!

However, here is the good news... When you throw a boulder into a smooth pond, there is a lot of thrashing water for a while but eventually, the water gets smooth again. The same is true of your emotions. You will get used to the idea and become more calm as you move through this experience and though life will never be the same again, cancer does have gifts believe it or not. The main gift that I have received is a renewed appreciation for every single moment. When I catch myself getting pulled into life as usual, I take a moment to look around and take notice of my senses. Smells, sites, feelings... I realize that you are not there yet but trust me, you will be and having that brand new feeling again is really a great thing.

For the time being, realize that what you are feeling is TOTALLY NORMAL and that having your mortality shoved right up in your face is one of the biggest life challenges there are. You have already made the right decision by coming here. You might also look into local cancer support groups in your area. It helps to talk with others on the journey. Puts it into perspective... DO NOT believe everything you read on the internet. There are horror stories out there and these ARE NOT helpful. Get your information from reliable sources and make sure to check things out here. There is another great site at:

www.acor.org.

God Bless You!

John Neary

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Dear John :
I don't remember if I said thank you to you in any of my earlier responses but I wanted to make sure that I did. Thank you. When I saw my doctor I took your suggested list of questions with me to my appointment and I appreciate you!!!
Finding myself in this forum most days, I just wanted to ask how you were doing? Haven't seen any recents posts so just wondering if all is still well?
Prayers your way each day and wishing you and your family the best.
Again Thank you for your outlook and suggestions.

My Best
Kat

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Dear John :
I don't remember if I said thank you to you in any of my earlier responses but I wanted to make sure that I did. Thank you. When I saw my doctor I took your suggested list of questions with me to my appointment and I appreciate you!!!
Finding myself in this forum most days, I just wanted to ask how you were doing? Haven't seen any recents posts so just wondering if all is still well?
Prayers your way each day and wishing you and your family the best.
Again Thank you for your outlook and suggestions.

My Best
Kat

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

I am still well and living with stage IV cancer, thanks for asking. I spent a lot of time very depressed after the second CT came back "Mixed" again after the first round of IL-2 treatment. I was lost. But then, I started to look for ways to help myself instead of continuing to look at statistics that said that I was going to die before I am ready. In my search for people in the same situation as me, I stumbled across a book by Gerald White on fighting cancer titled "Three Months to Life". It has changed my life. I went from despair to hope and am back living my life again. I have moved away from spending every moment worrying about what will happen when I die and envisioning my own funeral to a system of prayer, guided imagery, diet and attitude changes. His program is full of hope and that is what I needed!!!

This change coupled with the comment from my doctor saying that "There is no cure for this disease, go live your life" has caused me to do just that. I pray in every moment that I have, listen to Gerald's guided imagery disk at least twice a day, have changed my diet to include LOTS of fresh fruit and veggies and have given up colas and have cut WAY back on refined sugar.

Sure, I can feel the mets in my lungs but I also feel that they are changing for the better. I have less congestion, the last CT came back with a drastic reduction in the pleural effusion and I actually took my wife on a date last weekend for a great meal and some live music and it was AWESOME!!!! I am working full time and am enjoying my work.

It could be that this disease will get the upper hand at some point but I am NOT going to sit around and expect it. I am fighting it with every resource that I have and most of it is my own immune system. I am also in a cancer support group every week at my local Cancer Support Community and have met some truly courageous people! These are ordinary people who were, as Gerald White puts it, were "Unwillingly drafted into the battle of cancer" and who take life threatening news almost constantly while working with a system that is overwhelmed with cancer patients on one side and accountants on the other... I am honored to know them and they are really wonderful people.

So, bottom line, fighting this disease means staying the F*&% away from the statistics and using every resource available to fight the beast. For me, these are:

http://cancersupportcommunity.org/Default.aspx

http://cancerwarsmaarsjourney.com/

http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=KIDNEY-ONC&t=&X=64EDC85368AD65D81A

Thanks!!!

John

jam66
Posts: 55
Joined: Jun 2011

Your posts are so inspirational and informative. Thanks you so much. This website has helped me so much in feeling connected, inspired and informed.

Another website I found is http://nutritionfacts.org/

There are short little videos, and so many are about which foods suppress cancer cell growth. A few videos discuss kidney cancer specifically.

Best to you, and all on this discussion board. You are all so very helpful!

Jennifer

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Dear John:

How does one respond when they ask how you are and you tell them truthfully how you really are? The classic I'm so sorry for what your going through thing? It just doesn't seem like the right thing to say . You are definately a very blessed soul John. Your willingness to talk to all of us about our own situations, offer insight and guidance and give your honest opinions about cancer while you battle your own war with the demon is appreciated more than you know.
I'm certainly glad that I was led to this website when I needed it the most. The internet is an amazing thing but it can lead a person down a very dark ugly road if you allow it to. Have you studied anything about the budwig program? I went to the website and its filled with a tremendous amount of info. The diet itself is something I want to try if for no other reason to help my body help me. As for the guided imagery thing, I dunno if I could remember where I'm going once I started the trip to do it successfully :)
I know that the human mind is something that can create and destroy depending on the attitude and aptitude of the human driving it, personal experience proves it for me . When I was 16 years old ( back in the cave man days lol) one of my teachers told my parents I needed to see an eye doctor . After a complete eye exam by a squirrelly little eye doctor , he told my mother that I had a lazy left eye and 20/40 vision in the other. I got a brand spanking new pair of coke bottle glasses . I completely and totally refused to wear those glasses because I did not believe for one moment that I had a problem with my vision. I could see , I could see whatever I wanted to see and that was all there was to it.
By my 18th birthday, my vision was 20/20 . No glasses REQUIRED........ So I think that what you think about and honestly believe beyond all else is where your truth will lie.... In any case, Thank you for being here . I appreciate you...... All my best to you and your family
My family and I send you all our love,light and strenght to continue on your journey to a full complete recovery.

Many Hugs
My best
Kat

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

Kat -

I'll just reinforce all the encouragement you've received so far. I know your head is reeling. In three months I've gone from being totally healthy to being diagnosed with cancer to being a cancer survivor. My hand assisted laproscopic surgery was four weeks ago today. The recovery isn't easy, but I'm sure glad that stinkin' cancer is out of me!!

You will get through this!

Amy

donna_lee's picture
donna_lee
Posts: 419
Joined: Feb 2009

I am reminded every year at this time of what you are going through. And I went thru it three times, once with the inital dx and twice with recurrences.
Yes, you will need to ask questions. But coming from a teaching background, I needed to get myself and my husband organized with a capital O.
I put together a 3 ring binder that I could take to all my appointments. Dividers and post its are the backbone or organizing it. This was pretty much before blackberrys and handheld computers.
-Dr's names, numbers, appointments, notes from the meetings
-results of all my tests, labs, etc. Maps of how to get there if needed.
-My own medical history, since every place you go will need it (previous surgeries, meds you're on, illnesses, hospitalizations, parents (alive/deceased, age, health, why he/she died) and siblings, allergies or sensitivities (latex?, milk?, drugs?). Pre-op, anesthesia, they all need this info.
-Printed material (dr's office, internet, etc.) about your type of cancer. How to interprete stage and grade. How to read labs and what they mean to your body.
-Closer to surgery date there is more organizing.
...A list of names and phone numbers for someone to call when you are out of surgery. Hopefully each call can be the start of a calling tree.
...What to pack for in hospital and the day to come home. My first surgery was at a regional teaching hospital, so I had travel and 2 days staying in my daughter's place before surgery, and then a night in a hotel after the hospital. You will beg to take a shower, but it's a no deal.
...Your house/home. Change the sheets before you go, get the laundry caught up, pay the bills.
...Who will help you out once you're home? Meals, and all the stuff in the previous list. You will not want to change the sheets yourself.
...I already had a hand held shower head and a shower stool. If you can get set up with both, you'll be glad you did. It will take energy just to stand for a while. And it feels sooooooo good to sit and just let the warm water run over your body
I work, and a lot of the calls came to the home. I got phone message pad to write info on when I played the answering machine back. That way I had a copy in the book when I tore off a memo and recorded a new phone number, Dr., or info in my binder.

I assure you, you will get there. And tell the Dr.s, "Out damned spot."
All best wishes and keep us posted on your journey. You're already ahead of the curve by finding this on-line support group. If you can find an "in-person" group you can participate with, and especially if it is mixed types of cancers, you will do even better.

I did the resarch to found out where the info came from when I had to give a speech to a group of survivors at the Relay for Life. Statistically, individuals who belong to a support group have a 25% better survival rate than those who don't participate in a group. (Harvard Study) Another university study found that a person standing by him/herself at the bottom of a slope felt that getting to the top would be nearly impossible. But with a friend beside them, it was achievable. And laughter is a big key to surviving. More another time.
Donna

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

God bless the shower chair!

icemantoo's picture
icemantoo
Posts: 1604
Joined: Jan 2010

Kat,

The good news is that your tumor at 4cm was caught early and you should have a full and complete recovery. Do not get hung up on the Doctor telling you that it is malignant and is Cancer. Most diagnoses of a mass on a Kidney more than a cm or 2 do in fact turn out to be Cancer.So what. After the surgery you can tell people you had Cancer, not that you have it. Afer the Surgery you will feel better esch day and be back to normal activities in 6 to 8 weeks. Do not do as one recent poster did 3 months following surgery: ride a roller coaster. Wait until next summer for that. Kidney Cancer caught early is not a death sentance. Being told right out of the gate that you have Cancer and that you have to have surgery can scare the s== out of anybody, but is a mere bump in the road to the rest of your life. Stay positive.

Best wishes,

Icemantoo

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Kat,

I remember stumbling onto this site in the fall of 2009 and being overwhelmed by the support of so many club members that had been through it before me, you have come to the right place, these guys are great. Believe me, we are the lucky ones, no chemo, no radiation, just surgery and the associated recovery time. You seem to have a great sense of humor, laugh as much as possible with friends and family, you'll be amazed by its healing powers.

The iceman gave you a glimpse at his bucket list, mine includes hiking across the Grand Canyon later this month at age 60, I encourage you to start yours and think long term, you have a lot more birthdays to celebrate!

Good luck and keep us posted,

Gary

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Just wanted to say Hi and Thank you for responding. Hope your recovery is going well for you. I am still in the initial phase of this and don't really know much more than what I posted earlier. Have another doctors appt this coming Wednesday and kind of dreading it I think. Whatever this is I want it gone as well. My best
Kat

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Just wanted to say Hi and Thank you for responding. Hope your recovery is going well for you. I am still in the initial phase of this and don't really know much more than what I posted earlier. Have another doctors appt this coming Wednesday and kind of dreading it I think. Whatever this is I want it gone as well. My best
Kat

Katielynn
Posts: 61
Joined: Apr 2011

Dear Kat,
Welcome, you will find this site a lifesaver. You are not alone with the feelings you are having, we've all been there. Of course you're petrified, hearing those words sends a shock through your body and mind that are totally indescribable....I am two months and 2 days post surgery, my 3 cm. tumor was found accidentally, at first I was told I'd have a partial nephrectomy, but as it turned out my whole left kidney had to be removed. The doctors really can't give any definite answers until they get in there, and I was well aware of this from the get go. There is light at the end of the tunnel. In my case it was encapsulated and I'm told this is a good thing, so taking the kidney may have been my best option. I had robotic surgery, have 4 little scars and about a 3 inch scar as a reminder..I recovered quite quickly, followed doctors orders to a tee...didn't overdo, but didn't just lie around. In fact, post surgery, all I needed was 2 days of pain killers...My biggest problem was getting out of my Lazy Boy...thank God I have two fabulous daughters that were always around to help me...I did find sleeping in that chair the best possible option..Lying in bed was definitely not..I'd say right now I feel about 90% back to normal...I get a little twingey pain in my back yet, but swimming has helped a lot. I'm not going to sugar coat this, it's devastating, but, yours is small, I pray for the best for you. I totally understand your feelings about talking about this with your family, I was in the exact same frame of mind. Their positive, trying to cheer me up attitudes seemed to make matters worse. There's really nothing anyone can say to make matters better, and I had to really come to grips with it before I was able to talk openly about my feelings...When you're ready to talk about it you will..Everything has to be dealt with at an individual pace, no two people handle things the same way. As I first stated, this forum was a life saver for me. I got encouragement from people who really KNEW what I was going through....My advice to you is handle this situation in a way that is best for you, try to think positively (easier said than done, I know) and have faith...Visit frequently and never feel ashamed or afraid to ask questions...there is a wealth of knowledge here....Best of luck to you, and God bless

niprut
Posts: 23
Joined: Jul 2011

Hi Kat,

News like this is such a shock. Sometimes you will want to talk sometimes you wont. Sometimes you will feel okay, sometimes you will be overwhelmed. Hold the hands of those closest to you when you need it the most, and just get through each day as best you can however you need to. Don't worry about everyone else for a while, just concentrate on getting though the hurdles in front you, one step at a time.

This forum and the people in it are wonderful, they are such a source of strength,inspiration and knowledge. Touch base in here when you need to.

Twelve months on and I still have not "figured it out", but I take comfort in knowing I am not alone and there are people who do understand exactly how I feel.

Take care and go gently.

Jo

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

I honestly don't know how I have managed to make it through the past couple of weeks.
Between the new job I have, my grown children living with me , this recent health development blah blah blah, I gotta tell you I am completely exhausted. Bone tired , brain dead exhausted. My kidney surgery is set for September 13th 2011. The surgeon is using the robot gizmo thingey to get it out. Thanks to all for all the great advice and good thoughts cause I needed it. With my prepared list of 60 questions the doctor helped me to understand what will happen and when so I feel a bit more relaxed about the situation. I know it is what it is, but I am beginning to realize that its a one day at a time thing right now. Many nightly prayers to all of you and yours.
My best
Kat :)

BG
Posts: 85
Joined: Jun 2011

Hi Kat,

I had a pratial neprectomy 3 weeks ago, it was laproscopic with the robot, for a 3.9 cm tumor, Chromophobe grade 2. I am getting around pretty good, with an occasional pain pill, trying to keep up with my 3 and 6 year old.

The surgery is tough, I was in the hospital 3 nights, but I am healing well. The incision sites, largest being 1.5 inches, other maybe 0.5 inches have healed, and the pain is kidney pain which is sporadic. Bottom line, I am glad the tumor is gone, and each day I get better.

Your original post indicates you were referred to another doctor, is that one able to do a partial nephrectomy?

I wish you well, I had to wait 1 month from finding out till surgery, so I know the wait is tough. I used that time to try to educate myself as much as possible. I have scheduled an appointment with a RCC oncologist the 29th of this month to establish a relationship and get additional information.

My prayers are with you, hang in there.

BGH

icemantoo's picture
icemantoo
Posts: 1604
Joined: Jan 2010

Katfrom Florida.

I posted this earlier, but it again reminds me of the month waiting and waiting to go under the knife. Four weeks before my surgery my wife took me to a Bed and Breakfast on the Canadian side of Lake Huron to relax. We went to the niceest restaurant in town, sort of British if you know what I mean. They brought out all of the meals on a cart for you to see them. I could have done without the Kidney Pie being on the cart.

A few years from now you can laugh and joke about the upcoming experience. For now you probably feel as I did then. Get the little bugger out as soon as possible.

Best wishes,

Icemantoo

ams123
Posts: 71
Joined: Aug 2011

Hi Kat - just wanted to say I in somewhat the same situation. I found out last month that I have a 3cm tumor in my left kidney and my surgery is 9/9, four days before yours. Maybe we can recover together, through the internet. I am having robotic laparoscopic surgery, well that is the plan now, it might change. I am having an MRI today so the surgeon can get a better look at how the tumor is in relation to the major artery and vein that are in there. I am hoping he can save part of my kidney. Are you having a partial?

For some reason I haven't been scared throughout this whole process. Everyone says I am either in shock or denial, but I feel lucky. My doctor sent me for an ultrasound and that is how it was found. It was caught very early, and I can live fine with one kidney, and I am healthy otherwise, so I will recover from surgery in a month or two, and then that is it! Maybe I am in shock or denial, or maybe I am just confident in what people are telling me. Who knows?

How are you doing emotionally now that it has sunk in a bit?

Linda

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Dear Ams:

Sorry to hear that you too are joining our little group but honestly , this is a wonderful place to learn and find support. The people here are incredible and amazing.
After the initial shock of learning about my cancer, I went online and read some really horrible stories about it and THANK GOD I found this spot.
It took me a couple of weeks to work through the initial shock, then with the support I have received here I have found some peace. It is what it is. Right now with the surgery still a few weeks away, I have moments where I wonder what the future holds but overall I think that I am pretty calm about all of it. Reading up on the disease and hearing how others have dealt with it is truly a godsend.
The really scary part for me right now is not knowing what kind of cancer and what stage it is until after the surgery. All of that is assumed until the surgery is completed and the tests are finalized. The pain that sent me to the doctor initially is still there and I am taking pain medication for that until the surgery is done.
When they did my first ct scan the results said my spleen was enlarged and my gallbladder distended but no gallstones and that my liver had some fatty deposits. I'm not sure what any of that means and still have pain in the upper part of my stomach area around my liver so I was really shocked that it was due to a tumor on my kidney. Is it related? I don't know. My family doctor doesn't seem to feel its due to something else but they never tell you all of what they think anyway. :) It would be great if you wish to correspond during recovery , I am here pretty regularly these days. I wish you much love and success with your surgery and know you are in my prayers as well.
Many Hugs
My Best
Kat

BG
Posts: 85
Joined: Jun 2011

Hi Kat, I went in for a liver scan due to elevated liver enzymes, and they found the same thing with me, fatty deposits in my liver, oh, and also the kidney tumor. When my doctor called and told me about the tumor, he also mentioned the fattly liver thing, I totally blocked it out and said I'm not worried about that, whats this about the tumor.

I'm 4 weeks post partial nephrectomy, and the next thing to adress is the liver thing, I think it has to do with me loosing some weight, reducing sugar intake and keeping the sugar level stable, and also eating better. I take cholesterol medicine and know that can cause elevated liver enzymes, thats the next chapter though.

I wish you all well.

Brent

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Hi , Thanks so much for your response. I too have been takin cholesterol meds for some time as its a hereditary thing in my family and I need to lose some weight myself.
The diet hasn't been all healthy either, I lost a long term banking job in 2009 and was off work for 2 years until this past April. So ....I was feeling pretty sorry for myself
ate a lot of junk and gained 10 plus lbs.
I guess this was and is my wake up call as its the only body I get,so its probably a good idea to start taking a lot better care of it now. Its really a pretty good body overall so I guess I will keep it for a while longer :) My surgery is next month but I am cutting out the junk and adding some healthy food to the menu. Hey its a start right? LOL. I hope your health improves each day and please feel free to email me anytime... Cdromda@cfl.rr.com

Hugs and many prayers
My Best
Kat

ams123
Posts: 71
Joined: Aug 2011

Kat - I think it took me a while to work through the shock, although I am still in some disbelief that this is happening. I never imagined I would be diagnosed with kidney cancer! I agree that lots of reading and getting support from forums is helpful. I am also on a kidney cancer mailing list, but many of those people have very bad cases of cancer and are on a lot of trial drugs. That list is a bit scary for me, and I am pretty confident that since my tumor was caught early I won't have to deal with that later on.

I hope your doctors figure out what is going on with the spleen and gallbladder and liver issues. With me there was a question of whether I have kidney disease as well as kidney cancer, but tests this week show that my kidney function is normal. That was a relief.

I'll be thinking of you!

Linda

LFocus
Posts: 12
Joined: Aug 2011

Hi I was told the same thing with my Dr. and I'm going to see another Dr. to find out why can't I get the da vinci surgery or a partial nephrectomy. The 1st Dr wants to take the entire kidney out the size is 3.7cm reading from the CT scan. I feel for you! cause I haven't had the change to stop to think how in the world has this cancer come upon me and not know it was there. The kidney cancer was found accidently looking ulcer?? I'm glad it was found early..As with you let's not let cancer beat us down..We will make it!! We are in God's hand and He is in control of all things..Prayer will be our answer..I pray that you get all the answers you need and that whatever your choices are they will make you a winner!!! God Bless..

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Usually, the doctor thinks a radical nephrectomy is best if the tumor, no matter how small, is sitting on or blocking something important, like the renal artery or renal vein. In that case, you might as well take the entire kidney if the surgery is going to eliminate the blood flow to that kidney.

But if that's not the case, then he or she should not have to do a radical nephrectomy. It may be the easiest surgery for the surgeon, but it's not necessarily the best. Small tumors typically have many more options.

Be sure you are given a valid reason for the surgical decision, or get a second opinion.

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Well the big day is coming up a week from this Tuesday and I think its beginning to make me a little more nervous. I had to go to my primary physician this week for a release for surgery and they want me to see a cardiologist first due to a heart murmur I have had forever. Why do they wait until the last minute to do all this crap?
I just want this cancer to be gone and its proving to be a very winding road. The emotional roller coaster has been rough but if it wasn't for my job right now I think I would really go looney. Everyone continues to tell me how lucky I am and how much worse it could be but its still major surgery and it still scares the heck out of me so do they give you something to calm you down before they put you under? I hope so otherwise I'm afraid they will need a really big male nurse to hold me down just to keep me there lol.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Kat,
I had to wait six weeks for my surgery. When the big day came, I was pretending to be relaxed and calm but inside I was a wreck. I was laying down in the pre-op room. A nurse and her assistant stopped in and said they were going to inject something into the intravenous in my arm to relax me. She did and they started to wheel me out to get prepped. I remember passing my wife in the hallway. The next thing I remember is waking up after the surgery. I had pictured myself in the operating room with the team around me and then getting my anesthesia. I don't know what they gave me in pre-op but it sure made things easier. I had my gall bladder removed also. Both were laproscopic so I was only in the hospital from Thursday morning to Saturday afternoon. Recuperation wasn't as bad as I had expected. The walking was the hardest part but I knew I had to do it. Three weeks after surgery I was driving and walking with little to no pain. Six weeks after surgery I was almost back to "normal." Well, as normal as could be expected. Good luck.
Mike

BG
Posts: 85
Joined: Jun 2011

Hi Kat,

On my day of surgery, I told the first nurse that came to get me that I am very sensitive (I am, pass out at blood draws so need to lay down) and that I needed something to calm me down before they put the IV in or anything.

They gave me 2 valium and a tiny sip of water (you need to fast before the surgery), and that helped imensly.

The nest thing I remember, is being in the recovery room with my wife.

BG

ams123
Posts: 71
Joined: Aug 2011

My surgery is Friday - three days from now. Everyone tells me they know someone who had this surgery and it is no big deal. Not sure if they are minimizing what I am going through, or trying to make me feel better. At my pre-op visit on Friday the nurse told me to take some of my own klonopin the morning of the surgery, but I know I can ask for something if I need it that morning at the hospital. I'll let you know how mine goes.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Ams,
Any major surgery is a "big deal." I'm sure your friends are not trying to minimize what you are going through. They just don't understand. It's easy to have a nonchalant attitude when they are not the ones going through it. Everything will go well for you. Best wishes,
Mike

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hello.

I would agree, the surgery is a big deal. Go into it knowing that you will have a
recovering period, the days will get better. The only advice I have for you is don't over eat at one time. Instead eat small, more often. Over eating caused me big stomach pains. Take Care, and I will be thinking about you.
Valerie

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Valerie,
Good advice. A year later, I still get stomach pains if I overeat. Annoying but tolerable. I get them on both sides of my stomach -- the former kidney side and the side where my gall bladder used to be. My primary care doc suggests that it could be that chunks of food sometimes irritate the sensitive scar tissue. Seems like a good guess to me but sometimes I think the surgical clips are the pain culprit. I didn't know there were surgical clips still inside me until I saw an X-ray report indicating them. (I thought something was accidentally left inside, like the stereotypical sponge.) When I asked the surgeon who removed the gall bladder why she didn't tell me to expect that, she became a little testy and told me that they are part of the normal procedure and she didn't feel she had to explain every detail of the surgery to the patient. It's a good thing I only had one gall bladder because she wouldn't get to remove the second one.
Mike

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Wow, they actually left clips inside your body? You must be a very calm man:) I am not very tolerant with those people in life, who because of title or education feel that they do not need to explain or justify actions for anything they do. Since you in fact paid your insurance premiums and your deductibles etc and she did the job you paid her to do, just stands to reason that if you require or desire a full complete explanation of why they leave parts inside your body and exactly what she did to you while you were unavailable to comment then she should danged well explain in step by step instructions what she did and why huh? I'd want pictures too...lol..
Bedside manner just isn't like it used to be... If half of these doctors ever had to be patients maybe they would get it... I dunno...
Your imput is appreciated and thanks so much...

My Best
Kat

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hi Mike

Oh my goodness....surgical clips left inside, that sounds just plain wrong. :)
It's been almost 2 years since I had my kidney removed. I have to say that I still
don't feel the greatest when I overeat. I can't even compare it to the normal feeling of overeating, it's almost like I have something "stuck" in there. My doc felt for a hernia, which I guess sometimes happens. So, do the surgical clips eventually dissolve?
Valerie

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Valerie,
No, they stay forever. Standard operating procedure (excuse the pun), I was told. The clips are actually metal of some kind. But not to worry, she said, they won't go off at the airport, which was like the least of my worries since I haven't flown since 1974. Like your doc, she did the same -- felt around for a hernia. I guess they both read the same manual. She also told me she had problems getting the badly infected gall bladder out, that its outer layer got stuck on my liver and she was afraid to prod around too much and cause injury to the liver. So she left the layer stuck there. It'll disintegrate eventually, she said. At least she told me about that one. She's a general surgeon. I was in the military for four years and knew a few generals I'd like to see her operate on. Actually, I haven't had any problems and it has been a year. I guess she did a good job. My urologist certainly did.
Mike

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Kat,

Tomorrow is just another day, very soon it will be yesterday. Here's hoping you have another 10,000 or more tomorrows coming your way!!

Thinking of you on the day before,

Gary

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Just wanted to take a minute and say thanks for the kind words... I have been waiting it seems forever and at 5:30 am tomorrow I go in. Today my stomach is in knots and I gotta tell you I am pretty nervous about all of this. I know I shouldn't be but still I can't help it...... at

Hope to talk to you again soon

My Best
K

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Kat,
Just about everyone here knows exactly how you feel and we are all in your corner, wishing you a speedy recovery.
Regards,
Mike

DarrylPe's picture
DarrylPe
Posts: 75
Joined: Mar 2011

Hi Kat best wishes. I be praying for you but I'm sure all will go well. Post as soon as you can let us know how your doing :)

Darryl

barbarbei
Posts: 9
Joined: Sep 2011

Hi Kat, although I am not the one who got it, but I went through all with my boyfriend. And today he had the surgery. Best wishes.

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

There are alot of people who have had this or gone through this. This is a great place to lay it all out and receive support and guidance. I wish you the best.

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

I can't believe its over..... OMG the first day I was out of it, I remember nothing much...
I just got released tonight and I am very very sore. Didn't eat anything for the entire three days...... My body looks like it went through a war, bruises on both arms ,around my left wrist... 6 holes in my belly and all the doc said was it was golf ball size and no other info yet... Thanks so much for all the prayers I really needed them...... Much love to all , my best
Kat :)

ams123
Posts: 71
Joined: Aug 2011

I don't remember much of anything from my two days in the hospital either, I'm on day 6 post op and still a little sore, but I've been taking walks and even had my hair done last night. I didn't eat anything in the hospital, but still gained 6 pounds! I also have bruises on both hands, and one arm, two veins were infiltrated when they were trying to put in my iv's. I also have 6 incisions, plus another one where the drain was. Did you have a drain? Is your abdomen really swollen? Mine was, but it has gone down a lot, still has a ways to go though.

I see my doctor for follow up tomorrow and to find out what the pathology report says.

Was yours a partial?

Linda

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

I feel better today than last night, it was nice getting a decent night sleep even if it was in a chair lol. I didn't eat anything in the hospital either and my clothes were so tight yesterday I thought I was gonna explode. Nurse told me its because of all the fluid they give you..... and the gas pain OMGGGGGGG...... its still buggin me today . Yes, I had a drain as well, and that was really disturbing when they took that out yesterday..... Wow... the very very worst part of all of it was when they took out the foley...... The adhesive they stick to your leg .... It felt like they were using a razor blade to detach it from my leg and now the whole area is black..... My belly is pretty swollen and I spent a half hour in the shower under the hot water which was heavenly.... They gave me a nice icepack to use for the swelling and it helps alot..... I go back to my doctor in a week and yes mine was also a partial....... I am so glad your ok.... and thanks to everyone here for your unending support and kindness..... I love you all...
My best
Kat

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

I can't believe its over..... OMG the first day I was out of it, I remember nothing much...
I just got released tonight and I am very very sore. Didn't eat anything for the entire three days...... My body looks like it went through a war, bruises on both arms ,around my left wrist... 6 holes in my belly and all the doc said was it was golf ball size and no other info yet... Thanks so much for all the prayers I really needed them...... Much love to all , my best
Kat :)

BG
Posts: 85
Joined: Jun 2011

Kat, I am wishing you well and hoping you get better each day. I remember my IV arm and wrist hurt for some time, and 6 weeks post op my muscles in my back still hurt.

I am happy for you, as the iceman would say "now that wasn't so bad was it", ha. Hang in there, and iceman, sorry to steal your thunder.

BG

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Welcome back Kat,

Surprised to hear from you so soon after, wow. You are officially a warrior with all the battle scars to prove it, wear them proudly!! Relax for a few weeks and let nature take its course, you'll be your ole-self before you know it.

Godspeed,

Gary

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