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Kidney Cancer / Post Surgery

TomH22
Posts: 2
Joined: Mar 2003

I was diagnosed with Kidney Cancer and had 50% of my left Kidney removed on Janaury 15, 2003. I find myself still scared and confused. Doc says they are 70% sure all cancer was removed and my survival rate was put at 70% as well. I would appreciate any comments about when I will start to feel like the survivor they say I am. My first follow up CT and Chest xray is scheduled for May `03. Still scared!

aunti
Posts: 1
Joined: Mar 2003

i was diagnosed with kidney cancer back in june of 2002 in july i had surgery my left kidney was removed and half of my right kidney i have been on dialysis since my right kidney has not started working yet the doctor says it may or may not the surgeon removed all of the cancer so i am alive they feel very optimistic about my recovery as far as the cancer goes now i wait for a transplant hopefully i will get one i am a 44 year old mother of 2 teenage children who is trying very hard to live a normal life which unfortunately now is impossible on a daily basis if the cancer was removed and you have a 70% percent chance the cancer was completely removed and your not on dialysis it sounds like you will make it i am scared every day so i cant tell you not to be once this happens to us it seems like we can never really be sure even if we are told to be

dosbeagles
Posts: 1
Joined: Apr 2003

I can really relate to ALL of the people who replied so far. I had a radical nephrectomy of the right kidney in October, 1995, just two weeks after having a total hysterectomy. The doctor took out the kidney, the encapsiated tumor (as big as a plum, hanging by a thread), a rib, and all of the surrounding lymph nodes. I get tested every year and so far have come out clean. I still have a newspaper article about a state governor who had the same symptoms, diagnosis and operation as me, who was clean for five years, and was told not to continue the check-ups. He was fully metastasized 12 years later and died. I will not allow that to happen to me, or anyone else that tells me they had cancer. Always get your yearly check-ups (in my case CT's of the lungs and liver, x-rays of the breasts, MRI), keep copies of all of your results, and don't be afraid to stand up for yourself. It's unfortunate, but my HMO changes my doctors like I change my underwear, and I must bring out my battle guns (and paperwork) with a new doctor every year. PLEASE, to be a survivor, you must do more that get through the operation. You must maintain survivorship by fighting for your rights each year.

pattymooch
Posts: 3
Joined: Mar 2004

my momo had the kidney removed and a rib and her pain is still pretty bad 3 weeks later. do you remember if you felt horrible for weeks after surgery? She still has far to go, chemo starts next week and there are nodes in the lungs.

Slowhands
Posts: 3
Joined: Mar 2003

I had my right kidney and a tumor, that was bigger than the kidney, removed on Jan. 19 01. I was told by my surgeon and oncologist that they were confident they got all the cancer.
I am happy to say that to date they are right. There has been no sign of any cancer for 2yrs. now.
All I can say is if you had enough faith in your dr. when you let them cut on you, don't loose that faith now.
I am a V.A. out patient and by their yard stick it takes three years of no sign of cancer before they call you a survivor.
I must say though that every time I go in for tests or exams the thought of finding it again is always a very heavy possibility on my mind. I don't think that will ever change.
I can tell you that you will never forget it happened, but you will know when you feel comfortable calling yourself a "Cancer Survivor". I think that time is different for all of us that are lucky enough to say it.
But thats the word I always use when thinking or talking about my case "Lucky".

Ricky18
Posts: 1
Joined: May 2011

hey slowhands idk if you can help me but i wantt to know more about what happned about your kindney and your tumor please!!! if its not too late because i saty in virginia too please reply backk

Ricky18

con
Posts: 1
Joined: Apr 2003

Hi,
My mom had her kidney removed 20 years ago due to kidney cancer..it did come back 16 years later, which is extremely rare. They stopped monitoring her after 10 years and they belive the tumor started to grow around the 11th year. All I can tell you is to take aggressive stands with your Dr.s' about follow up...you must always be monitored on a consistent basis. I know how you are feeling as I have watched my mom and often wished it were me instead. Find out as much as you can, the more you know about your condition the better. Knowledge is power. It sounds like you have great odds and I'll pray for you. keep positive...

JoyESS
Posts: 1
Joined: Apr 2003

I was dx w renal cell carcinoma on my 44th birthday in 2000. It was stage 2 w a tumor on my R kidney larger than the kidney. I had the kidney removed laproscopically nevertheless though they had to link two small incisions into a big one in the end to get it out. I healed from surgery very fast and feel great. I do have urinary difficulties now possible due to scarring from having been cathederized. I go in for checkups every 6 mos. and have had a CT scan every year. They say 5 years is when I can officially say I am a survivor. The doctor gave me a 65% survival rate. I don't worry about it except when it is that time again. Right now is that time as I go for workup on the 21st. The doctor was not going to do a CT but I insisted. Mine was discovered by a fluke (no symptoms!) during an ultrasound for something else so I don't want to wait for symptoms next time. Thanks to whoever said to stay aggresive about follow-up. I have heard of too many people getting it back w/in the first 10 years. I have blessed faith that God will take care of me no matter what so though I don't want it back, I am not that afraid most of the time. Thanks for reading, Joy

gailsantangelo
Posts: 1
Joined: Apr 2003

I had a radical nephrectomy on Dec. 20, 2002. Although the Drs say they got it all I am still scared to death. I still feel very tired at times and get depressed. But I am glad that I have a second chance. I think you are going thru the natural prosses of grieving. It's a scary thing. But I look at it as being given a second chance. I go for my first check up in june and I too am a bit scared. I do see myself as a survivor even in this short period of time. Take a step back and look at life and live it. Live it to the fullest. We never know when the end will come. Whether it comes from cancer or by being hit by a bus. You just never know, but if you live everyday to the fullest then, when the time comes at least you can say you have lived. At least that's how I look at it. And how I can cope with the fear.

srv
Posts: 1
Joined: Apr 2003

I had my left kidney removed on 4/3/00. I'm still here. My first conversation about it was with God. I asked for his help. That made things a lot easier for me. I found myself in the position of having to take care of others feelings as much as my own. My mother is 83 years old and has survived cancer twice. She had cancer surgery for the first time in 1957 when cancer treatment was in it's infancy. She taught me how to survive long before I ever got cancer. You need to take care of yourself and those you love around you. Be brave and positive there are MANY people who have survived cancer and become better people in the process. Good things can come out of any tragedy. Just try and believe yourself and defy your fears. There are many of us out here who are praying and hoping for everyone facing disease, fear and death. We survivors are blessed with a new perspecive on life and the opportunities life offers. It is not so important how long we live but how we live. To live bravely and lovingly for a short time is better than just bouncing around this world endlessly. Remember that you must show those you love how much you care for them by being brave and strong. It will mean so much to them if they ever have to face the same challenge or even face your death. Love yourself, love your friends, love your enemies. Death is not as powerful as love. Pain is just information your body provides you about it's status. Accept it and do not be intimidated by it. You have a GOOD chance at living a long fruitful life and spreading value and meaning and love and courage as these words will. God does not guarantee us anything more that his love and a chance to serve him. Be brave and smile you can bring joy to those you love by your strength and courage. People love courage, it inspires them to do the things they fear. God bless you, you deserve it.

waipahu64
Posts: 3
Joined: Apr 2003

Aloha,
I had my right kidney removed because of cancer and this was done in 1993. I was also afraid of my first check up after surgery but to me it was something that I must do in order for me to survive the traumatic experience. I am cancer free today and in the 2000, I had portion of my right colon removed becaus of cancer. After intense testing, I am cancer free. I do follow up with Neprology every 6 months. I am doing great and I do enjoy life. Be happy and watch what you eat and walk.

Ron

Aquagirl18
Posts: 45
Joined: Apr 2003

Hi,my name is caty and I am new here. I had neuroblastoma when i was 13 months old and I am a survivor. My cancer has been in remission a long time and I am very thankful I am able to reach out and help others today. My doctors, family and friends have really made an impact in my life. Music has been a huge impact as well and listening to music can help you escape for a while and forget what is going on. Music is one of the things that has helped me cope with life after cancer. I had surgery a long time ago that removed one of my kidneys because that is where one of my tumors was. I offer any support I can give right now. I wish you all the best.

marlyn
Posts: 1
Joined: May 2003

I had a radical nephrectomy on my right kidney back in July. I had been feeling so very lethargic for two years. At first it was "fibromyalgia", "allergies", etc.Then I had blood in my urine, severe pain and the emergency room doctor was very surprised when the kidney stones he thought I had turned out to be a 4" mass. My surgeon was very sure he got it all, I quote "all margins are clear". I got well pretty quickly, and only had to return to the nephrologist for a lung x-ray after 6 months. So far so good right? But then I had rectal bleeding...and wham! I had a carcinoid polyp. Now because both cancers were surgically removed I was told not to worry. So I got pretty upset and my primary care physician finally hooked me up with an oncologist. We are monitoring me closely. Up until the point I obtained an oncologist, however, I could not get my doctors to be concerned about two types of cancers within 8 months of each other. Thus far I have been blessed enough not to have had chemo or radiation, surgery has been enough and had I just had the kidney cancer I might have felt like a survivor already. I have never been told percentages like everyone else has. I was just told - we got it go on your way. I am so thankful I insisted that someone pay attention.Pay attention to your body, don't overlook anything out of the ordinary. And just like everyone else has said - insist on treatment and monitoring! d&d's mom

AuthorUnknown
Posts: 1560
Joined: May 2006

Hi, I have had two sugeries in a year's time. I had my right kidney removed for Transitional Cell Carcinoma in March of 2004 and the top lobe of my lung removed for Adenomacarcinoma in January of 2005. Nodes around the lung were clear. BUT nodes (two) from the center of the body where the lung tubes Y to each lung both showed spiral cell carcinoid. A Octreotide Scan showed nothing. I am not content with the "we will follow" technique. I would like to know where this is coming from.

Has anyone else had a similar experience? The information on the web makes me think it could come from numerous sites...so how does one begin to find the source before it is too late? It's already in the nodes...that means it's going on someplace....

Lotte

lgraham
Posts: 3
Joined: May 2003

I was diagnosed with Renal Cell Carcinoma 7 years ago at the age of 43. I had my left kidney removed. I am living proof kidney cancer can be beat. I too was scared until at least 1 year had past. I had regular chest xrays, ct scans, urinalysis and blood work every 3 months. I know exactly how you feel. It's hard to believe one can have such a thing and survive. Keep the faith, have regular check ups and know that there is hope for a long and prosperous life despite the cancer. Again, I am living proof one can survive kidny cancer.

br549
Posts: 2
Joined: Jul 2003

It has taken me 4 months to find you folks on the internet. How long did it take for you to recover from the surgery? I had my left kidney removed April 7th and I still can't seem to do much of anything. My insides hurt all the time. I was cut from front across my left side to almost the middle of my back. The insicion site has healed outside very well, but not internal. I swell inside after i am up and about for a couple of hours. I can't shop because I start hurting and have to sit or sometime lay down for a while. I'm almost 58 years old and was very run down due to other health problems when the cancer was found accidintely. My doctor pretty much dismissed me after 6 weeks. Did you have any of these problems?

urkabsd
Posts: 37
Joined: Jul 2005

hi, i noticed your e-mail was 2 years old and i wonder how you are doing? i also had the big surgery to remove my kidney, i am your age and it has taken me a very long time to recover. would love to hear how you are doing now!

Volusia
Posts: 1
Joined: Aug 2005

I have read that cures are in the 90% + range for early stage surgical removal. How are you doing?

darknight
Posts: 3
Joined: Feb 2013

Hi. I'm a 25 yr old male. I just went through surgery where I had half of my left kidney removed. How are you doing now after these years? Im nervous and scared. They say it has completely been removed. With a 99% chance of it never returning. I dont know what I am looking for on here, I guess just other people's life tract after it has been removed.

 

Any info would be great. Thanks.

icemantoo's picture
icemantoo
Posts: 3353
Joined: Jan 2010

Darknight,

 

Your reply was to an old post active about 10 years ago. You should have started a new topic. That being said losing half your kidney and a suggested 99% chance of no recurrance suggests that your tumor was fairly small (under 4 cm.) and with those small tumors the 99% chance of no recurrance is as good as it gets. At 25 years old who wouldn't be scared of having had Kidney Cancer especially at such a young age. Give us some more details about your tumor size and pathology and others should chime in with equally optomistic feelings. Mine was 10 and 1/2 years ago and I will be 70 this summer. My neighbor across the street is at 18 years and she is only 82.

Kidney Cancer caught early is most often completely cured by surgery.

Down the road watch your diet and keep your bkood pressure in check so that you do not adversey effect the remaining Kidney plus.

Icemantoo

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

Hi Darknight,

I had my whole kidney removed 6 weeks ago and I am doing ok so far.  I just get a little tired in the afternoons but hopefully that will get better.  How are you now?

Eims

canadiancruiser's picture
canadiancruiser
Posts: 14
Joined: Apr 2013

HELLO

i HAD PART OF MY RIGHT KIDNEY ON SEPT 13,2012. HAD MY 6 MONTH CHECK UP AND ALL IS GOOD SO FAR.IT HAS TAKEN SOME TIME TO GET BACK TO DOING NORMAL THINGS AS I WAS IDLE FOR OVER 6 WEEKS AND WAS WEAK.IT TAKES TIME TO GET THINGS WORKING AND ONE BIG ONE IS YOUR MIND.. ALOT OF CRAZY THINGS GO THUR IT AND PEOPLE DO NOT UNDERSTAND UNLESS THEY HERE THE WORDS YOU HAVE CANCER.GLAD PEOPLE ARE DOING GOOD AND LIVING LONGER AS I PLAN ON IT..  GOOD LUCK EVERYONE 

 

 

 

icemantoo's picture
icemantoo
Posts: 3353
Joined: Jan 2010

Welcome Canadian cruiser. Hope you are doing well.  I was downtown yesterday and looked due South across the river and you guessed it Oh Canada.

 

Icemantoo

beemurguia's picture
beemurguia
Posts: 57
Joined: Mar 2017

Well looks like I have been hit with the "C" word! which led to my Urologist to candidly tell me that my right kidney has to go! The tumor practically the size of the kidney itself.  He is optimistic that by removing the kidney that no chemo or radiation needed.  He of course then overwhelmed me with a great description of the anatomy and my images which I think is great but at the moment I could not come up with questions.  Now Im researching and wanted to touch base with any one who has gone through anything similar to this.  Im concerned about the staging...and the likelyhood that it has spread although chest xray so far looks clear...but im thinking more on a microscopic level....i mean the cancerous cells may be floating around right? and then eventually grow into a mass elsewhere? A lot to take in right now...

icemantoo's picture
icemantoo
Posts: 3353
Joined: Jan 2010

bee,

 

Welcome to the club which no one in their right mind would volunteer to join. The doctor suggesting you will be cured by surgey alone suggests you have a small tumor. A tumor almost the size of your kidney depends on whether the doctor is referring to the length, width or thickness of your kidney. A clear chest xray means their are no lung nodules larger than 8mm. Smaller lung nodules many of which are unrelated to Kidney Cancer can show up on a chest CT. In order for those  of us to respond to your post appropriately (without being too optomistic or pessimistic) it would be helpful if you gave the size of the suspected tumor in  cm., fill in yoour my CSN space and start a new forum post. All of us have gone thru what you are going thru now. I was nephed almost 15 years ago.

 

 

icemantoo

Jesuit1234
Posts: 6
Joined: Jan 2021

Hi,

I am petrified to go and get my left kidney removed.   I have seen 3 surgeons so far.

Surgeon #1 --- Insisted that the kidney must be removed.  "No partial".  Not much explanation.

Surgeon #2 --- Said that she could do a partial with "No problem".  She decided not to reveal to me how many years or procedures that she has done and then declined the surgery.

Surgeon #3 --- Fully explained that even if he wanted to do a partial there would only be remnants left of my kidney.  He looked me straight in the eye and was very intelligent.  I decided on the spot that he was the correct surgeon for the job.  I was originally diagnosed by chance with a solid enhancing mass in the lower left pole of hte left kidney measuring 5.9 cm x 6.1 cm x 7.1 cm by a CT scan of the abdomen.  A subsequent MRI showed the same thing showing a smaller measurement of apx 1 cm for the mass.

I also understand that it has not spread to anywhere else in my body and is  encapsulated in the kidney.

Additionally I went for testing and was informed that my left kidney is functioning at 47% and my right kidney is functioning at 52%.  After discussing this with a kidney Doctor and the Urologist surgeon both of them concluded that I will not need dialysis.

I understand that there is a possibility for this to be benign.

Is there any other technology that exists to determine if this is benign or cancerous ?  I understand that the surgeons do not want to do a biopsy because of the risk of "seeding".

Is there any other technology or treatment available to shrink the tumor without having any surgery ?

Any comments or professional opionions would be greatly appreciated.  

My surgery is scheduled for February 04, 2021.

Thank you,

Andrew

 

 

Deanie0916
Posts: 422
Joined: Nov 2016

Sorry you have this news and have to make these decisions. It would be good if you start a new post. But for what it's worth there are so many people on here (including me) that are living good lives with one kidney. My thoughts and prayers are with you. Please keep us updated!

Bay Area Guy's picture
Bay Area Guy
Posts: 516
Joined: Jun 2016

Hi Andrew.  Sorry you had to join us.  This is a great, supportive group.

I'm familiar with only three procedures.  First is surgery.  I had a partial, but for a much smaller lesion.  Surgery is still the gold standard for treatment.  Second is biopsy.  My sister is a nurse practitioner and, like the surgeons you spoke with, she recommended against the biopsy for the same reason.....seeding.  The third is ablation, either cryo (freezing) or radio frequency ("cooking).  My surgery was almost five years ago, so things on the ablation front may have changed.  At the time, I seem to recall that ablation was only used for tumors 4cm and under.  Ablation, also at the time, had a success rate in the mid-90% range while surgery was, for all intents and purposes, curative for lesions my size.  Again, I doubt ablation would even be practical for your situation.

There are some other drug based therapies that others in this group are far, far more knowledgeable about, as my knowledge is limited to the fact that the treatments exist, and that's it.

In terms of selecting your surgeon, comfort and confidence in your choice is an extremely important factor.  It sounds like you have found one that fits that description, so you can be pleased about that.

Others will likely chime in with additional thoughts.  Hopes and prayers that you have a successful treatment.

eug91's picture
eug91
Posts: 330
Joined: Jan 2019

Sorry you had to join us, but this is a great forum here. Ask us anything and we'll try to help. We've been through what you're going through, so we know you're going to do great, too. 

Adding to the terrific info above-

As for your question about shrinking the tumor without surgery, in most cases, surgery is the prefered way to go. In some cases before surgery, they'll use immunotherapy to attempt to shrink the tumor - if the tumor is in a bad spot or if there are other circumstances like poor health. This path isn't common, though - since there could be side-effects for the treatment, there's no guarantee that it will shrink the tumor, and because it might be better to get the tumor out of you while it's still encapsulated in one spot. But you could always bring this up with your doctor and ask. 

Good luck! We're here for you! 

 

icemantoo's picture
icemantoo
Posts: 3353
Joined: Jan 2010

At 7.1 cm. get it out. Not likely to be benigm at that size.Mine was a little smaller back in 2002.

 

 

 

ocemantoo

Jesuit1234
Posts: 6
Joined: Jan 2021

Hi,

Thank you for responding.

So no re occurance of any cancer on your other kidney ?

And it will be 20 years which is extremely encouraging. 

 

 

AliceB1950's picture
AliceB1950
Posts: 123
Joined: Jun 2019

My unwelcome passenger was 7 cm x about 6 cm - about the size of an extra large egg. I had a total laparoscopic nephrectomy in September of 2018, and went home the next day. What is it that scares you most about the surgery?  It hurts for a while, but I've had I think 9 surgeries and this was nothing compared to my hip replacement and a knee repair. With a nephrectomy, they get you up and walking the same day or next morning, and walking is what gets you back to normal - plus drinking lots of water. A surgeon I was seeing the same year for a different issue had served on a kidney transplant team for one of her residencies, and she reminded me that it's basically the same surgery the donors go through. Do you watch American Ninja Warrior? One of the top contenders the last few seasons is a kidney donor.

Jesuit1234
Posts: 6
Joined: Jan 2021

HI,

I am afraid of even getting surgery.  Being put under and the possibility of complications.

Also I am concerned because my GFR is 60 for the right kidney which puts it on the absolute low end of normal.  Now it is going to be taxed to do the job of the kidney that is being removed also.  

I really thought that since it is 2021 that there could be a sure fire way to determine if it is cancerous or not.  There is no history of this type or any type of cancer in my family.  I am 61.  

 

Bay Area Guy's picture
Bay Area Guy
Posts: 516
Joined: Jun 2016

Surgery is never fun.  I've had fhere in my lifetime.  The first two were all abdominal surgeries to take care of intestines which had twisted and shut down my digestive tract.  As both were emergency surgeries, and I was on pain meds both times, I had no knowledge of the surgery until I woke up in the recovery room.  I found out I needed the kidney surgery in mid-April and the operation wasn't scheduled until mid-June, so I had two months to stew over that one.  Like you, I was scared, but having gone through the other two, I found it easier to control my emotions.  A couple of suggestions:

1.  Try to get in as good a physical condition as possible.  I'm a gym rat, and I kept it up until the day before the surgery.  Being in better physical condition helps your recovery a lot.

2.  If you're underseight, try to eat more so you gain to a healthy weight.  I'm normally about 170.  I ate more in those two months to get up to 180.  Why?  You're going to lose weight in the time you're in the hospital.  Having a little bit to give up means you'll be in a better state for your recovery after the surgery.

 

AliceB1950's picture
AliceB1950
Posts: 123
Joined: Jun 2019

You have a big piece of crap on one kidney, which is a major reason why your GFR is low. My numbers since surgery (anywhere from 30s through 50s) on my remaining kidney put me at stage 3 kidney disease, which kind of freaked me out until I saw a nephrologist, who explained that my numbers are just fine for running on one kidney and what they look for is consistency in the numbers. Your best bet is to have one healthy kidney rather than a cancerous one dragging them both down. Every one of us here has had either a total or partial nephrectomy (there may be a tiny percentage who went for ablation, but it doesn't sound like you're a good candidate for that). Although Bay Area Guy's advice is probably good, I was a flabby 68-year-old when I had my surgery, and like I told you before, I went home the next morning. I walked around the house that week, and the next week I was hiking (okay, a little slowly) in the woods and following it up by going out to dinner (pre-Covid days). The best advice I got for a different surgery that year: You don't have to be brave, you just have to show up.

Kreynolds1968
Posts: 3
Joined: Jan 2021

The CT finding indicates indeterminate nodule in middle of adrenal gland with findings of small rcc metastisis vs scar tissue from nephrectomy last November.  The nodule was only 14mm. My follow up CT with contrast is tomorrow.  Has anyone else had scar tissue appear as nodule in the adrenal gland?

AliceB1950's picture
AliceB1950
Posts: 123
Joined: Jun 2019

I think you'll get more responses if you start your own thread. I had a PET scan in 2019, about seven months after my nephrectomy. The adrenal gland lit up, so a biopsy was scheduled. It was just scar tissue. But my urologist gives subsequent scans a good hard look to make sure the size hasn't increased, just to be on the safe side.

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