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Just Diagnosed

Sable2900's picture
Sable2900
Posts: 26
Joined: Mar 2013

I was just diagnosed with a mass on my left kidney and was told there is an 80% chance it is cancer.  Have been referred to a specialist on April 2nd for consultation.  I am a very large woman and my urologist said this would make things harder to handle.  Anyone out there in the same situation.  I am terrified.

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

So sorry you had to join us here.  We understand how a 'probable' diagnosis of cancer can rock your world.  Hopefully, you've read the posts of the many inspiring people on this site.  A kidney diagnosis isn't a death sentence.  Even if you do have a cancerous tumor remember there's still lots of hope and a good life ahead.  Look at all these Stage IV guys riding their bikes and RUNNING.  Goodness. 

They'll probably recommend surgery, which isn't great, but it's definitely doable.  Too bad you have to wait for that consultation appt.  The waiting is always the most difficult--maybe you can whine/sob on the phone and try to get your appt moved up.  Seriously, if you're like me I just wanted the mass OUT ASAP.

Hang in there and try to read/post often here as we understand what you're going through!

Linda

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

Sable, any indication of the size of the mass?  

bry4856's picture
bry4856
Posts: 14
Joined: Nov 2012

Sable, I know what you are going through. I had kidney cancer back in 2001 and still staying strong. My cancer was a 5cm mast. THe doctor at Mass General Hospital Boston removed the whole kidney with no chemo or radation needed. You can lead a very normal life with just one kidney. i have had reoccuring cancer but have also survided them. Saw my doctor today and received the happy news that my cancer cells in my stomack have all decreaded in size after 6 weeks of chemo pills.

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

Sable, any indication of the size of the mass?  

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Sable,

All of us on this board have been or are in the process of being diagnosed with Kidney Cancer. My diagnosis was almost 11 years ago and to be told that you have a 90% chance of the tumor being Kidney Cancer and that you have to have major surgery right out of the gate is enough to scare the sh.. out of any one.  It sure scared me. And to top it off the surgery was not fun.

The good news is that if the tumor is 4cm or less the surgery is usually a total cure. Unfortunately when the radiologist or other doctor says it is Cancer, it is the exception rather than the rule that it is not. We understand that the surgery is much less welcome when you are full size, but the alternative is that until the surgery, Kidney Cancer grows and than metasisises and over a period of time can cause a state where you no longer have to worry about it. 

As much as I do not want to say this, the surgery is necessary and sooner is better than later. Even those with tumors much larger than 4cm there are remarkable recoveries on this board.

There are exceptions to the surgical option and that is where you may have heart issues or you may be older AND where the tumor is very small. Lets hope your doctor tells you I am wrong.

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Sable, you say you're a very large woman and you've been told that that might make things more difficult. 

Whatever you're able to do to get as fit as you can before surgery will help in your recovery.  If you haven't had any advice already, can you see an expert to work out how you could do what you can to make it easier on yourself?

When it comes to the surgery, remember we all got through it and you're given plenty of pain relief, so that after a couple of days you get to feel steadily better each day.

There's not really a choice.  As iceman often says, it sure beats the alternative (and I take this opportunity to doff my hat to iceman for that brilliant tongue-in-cheek lawyer's circumlocution - that cancer "over a period of time can cause a state where you no longer have to worry about it").

Stick around here Sable, ask all the questions you want to, and we'll all help you get through this.

Sable2900's picture
Sable2900
Posts: 26
Joined: Mar 2013

Thank all of you for responding.  I think I am still in shock.  I have been in the hospital 5 times since last April - once for Pulmonary Embolisms, Hip Replacement and 3 times for cellulitis.  I feel like it just doesn't stop.  I am horrible with pain and just dread the surgery but pray they can.  Like I said I am very large and the doctor I went to said he would not operate on me and is sending me to someone else.  The mass is 4.5 cm in my left kidney. 

I was also told there are several types of surgery but that the robotic one thru the stomach probably woldn't work for me as to my size.  Has anyone had the proceedure where they freeze it?

I can't wait until April 2nd for my appt. with doctor but in the same breath I want to run away and hide. 

Thanks all!

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Sable,

I wish I could sugar coat the surgery, but than I woukd lose all credability. Not fun, but necessary and having it while the tumor is fairly small your chances for a full recovery without any Cancer issues down the road are very, very good. Follow Tex's advise and try to be more fit and maybe lose a few pounds

As far as the Cyber (freezing)  procedure first I must explain to the newbies that it was not named after me. Both my father and grandfather were in the retail ice business and therefore I am an Iceman too. My understanding is that it is done on much smaller tumors, but there is no harm in asking the Doctor if it is appropriate for you. I do know for a fact though that neither ice tongs or ice picks are currently  used in RCC surgery.

Unfortunately the surgery is something you have to do to get rid of that little bugger. We all went thru the not so fun pain at the time.

Icemantoo

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

In my case the fear of the sugery was worse than the reality...  Heck I slept through it all..!  OK, sure I was in pain when I finally woke up, but they quickly helped me through it all...  I was up and standing on the 2nd  day... walked a little bit on the third day.. and never looked back...  And I had a very complicated surgery...  Yours should be a lot easier...

Good Luck..!

Ron

mrou50
Posts: 7
Joined: Mar 2013

Sable I was diagnosed seven weeks ago and I had the surgery 24 ours later.  Like everyone said it is frightning but once you get in the operating room you will be fine.  I would reccomend you do some walking over the next couple of weeks to help your body.  I know you are scared don't that is normal, I am still scared but I can tell you there are a lot of good people on this site and they have given me confidence and inspired me stay in touch with us and know you will be fine.

 

Mark

mrou50
Posts: 7
Joined: Mar 2013

Sable I was diagnosed seven weeks ago and I had the surgery 24 ours later.  Like everyone said it is frightning but once you get in the operating room you will be fine.  I would reccomend you do some walking over the next couple of weeks to help your body.  I know you are scared don't that is normal, I am still scared but I can tell you there are a lot of good people on this site and they have given me confidence and inspired me stay in touch with us and know you will be fine.

 

Mark

Sable2900's picture
Sable2900
Posts: 26
Joined: Mar 2013

I can't get over how nice you all are for answering my posts.  Your responses make me feel a little more calm about the proceedure.  I just keep remembering when I came out of hip surgery in the recovery room the pain was so horrible - I never, ever believed there could be pain like that.  However once they got me comfortable the next two days are completely gone from my memory.  I wonder if they will take out the mass or the entire kidney and if so what happens if I get it in the other one?  I am a total worry wart.  Thanks for putting up with me.

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

Hi Sable,  

First of all let me tell you everyone here knows exactly how you are feeling.  I was you almost 3 months ago now.  The guys on here really helped me more than they will ever know and I am sooooooo glad you found them too!!!

What can I say but I had a 4cm mass on my left kidney like you and they decided to do open surgery as they thought they could do a partial nephrectomy but they changed their mind because of the roots of my tumor.  The hardest thing for me was the wait and I wanted it done like yesterday......BUT.....you can take the wait as a positive to prepare yourself for the big day.  Eat as healthy as you can and trust me it will help in the recovery phase.  Go out and have nice walks and plenty of fresh air....it really does help I promise you even just for some head space!!!  Just try to concentrate on getting through this and you can you know.

I can honestly say I never really suffered pain because I had plenty of painkillers.  I would have preferred the epidural pain relief but they couldn't get one in so I had the morphine.  Discuss pain relief with your doctor and he/she will put your mind at rest. 

 

I totally agree with icemantoo......and his comment is sooooo true.  I know its difficult at the moment because of the shock but you are one of the lucky ones in te grand scheme of things.....i say that to myself all the time!!  Remember we are all here for you across many time zones!!!  You mind yourself and stay strong.

Eims x

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Sable,

 

The chance you will have Cancer in the other Kidney is very low, like 2% or less. One of the reasons for scans after the surgery is to nip Kidney Cancer in the other Kidney in the bud.

If it does happen with a very small tumor they can use the cyber or RFA procedure.

 

As it stands now at 4.5 cm you are very lucky and the surgery alone should result in no Kidney Cancer issues in your future. Mine was 4.2 cm. Do not overdue it after the surgery. One young mother went on a roller coaster 90 days after surgery. She should have waited longer. One member went to Vegas 2 weeks after and regretted not reading my post before hand that that was pushing it. I went water skiing 11 months after for my 60 th birthday and that turned ou to be OK.

 

Icemantoo

cran1's picture
cran1
Posts: 129
Joined: Mar 2013

Same here healthy 35 male with a wiff and 2 great kids. Thought i was a tough guy and then they found a 1.6 by 1.6 renal mass on my left kidney. Not so tough anymore haha. I love my kids and wanna see em grow also dont wanna be a burden on my wife. Have an appt on April 5th with the surgeon...Not scared about the surgery just scared for my kids i guess.....

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

Just so you guys all know, Us experienced survivors have been here awhile. But we speak the truth. Making up stories would be way too hard to remember what we have said. So......having a chance to hear EIMS take on things is "fresh" and encouraging and accurate. It is all NTI. Nothing to it! Absorb all you can from our posts. It is gonna help. Good luck!

By the way, BEAUTIFUL picture Eims. Stay well for your family.

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

Ah Fox you old charmer!!

Eims x

lconno
Posts: 1
Joined: Mar 2013

I too was just diagnosed with kidney cancer, mine was found by accident thank god, I am scheduled for a kidney removal on April 30th, I am overweight also, but my drs seem to think all will be fine.   Good Luck to you!!!  Any comments are appreciated!!!  I had a hysterectomy on Feb 26th, after two weeks I was experiencing some pain that I thought was unusual, called the Dr after hours and was told to go to the ER.  Upon going to the ER a ct scan was ordered to check for infection from the hysterectomy, it was there that they found a 2.8 cm mass on my left kidney, I had a biopsy 2 days later, and was told I had renal clear cell carcinoma.  I then went to our local Karmanos cancer center, where I was given the utmost caring and kind treatment, blood work was done and my options were given to me, I was told the cancer I have does not respond to chemo or radiation, so the only option was surgical removal, I am a lil bit scared as the Dr informed me that the tumor even though it is small it is laying on top of the main artery to my kidney, so he wont know until he gets in there how much they will have to remove.  Any suggestions or opinions are greatly appreciated.  Thank you

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

Well, the kidney cancer you have does not respond to chemo or radiation in the conventional sense. So yes, get it out. But it is considered small. Having pain from it is unusual. Don't concern yourself one bit about how much has to be removed. Once removed, most of us would bet that you have amazing odds at remaining cancer free. If not, there are many new drugs, clinical trials and procedures available to keep you well. Try to get some good exercise and trim down a little. It makes tolerating the procedure and your recovery easier. Good luck.

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

Hi Iconno

I was scheduled for a partial too but they decided to take the whole kidney.  My doc originally said the worst cast scnario is losing the kidney so to be honest if you prepare for a radical nephrectomy anything else is a bonus!!  You will be fine and you will get through it...the alternative is not an option!!  Remember on this journey you will meet some wonderful people and some of them are here ;-)

Eims x

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Iconno,

Like Garym and myself we are all from Michigan. Good to hear like Gary M and myself that your tumor is xmall and a complete recovery from the surgery alone is in the cards, Sorry you had to go thru that other stuff, but I can't help you there. As for how much they remone, partials were not none in the early years of the Century when mine was done. I understand that it is sometimes a game day decision.

 

Icemantoo

augello55
Posts: 12
Joined: Mar 2013

I too had some bleeding about 5 weeks after hysterectomy....ultrasound found complex cyst ...which turned out RCC    I have had several differnt types of surgeries over the years...i must say this may have been the least painful but most uncomfortable if that can possibly make any sense.   althougth the first 2 weeks were def the toughest  day 6,7,and 8 I had awful muscle spasms...keep on top of your pain meds, they will help tremendously.  my tumor was 4cm  Dr has said no need for chemo or radiation...all tissue around tumor was normal.  My dr recommened the open surgery...he could actually get in and see how my kidney looked...as he put it anything strange the whole kidney is coming out....just the upper pole was removed.   I wish you the best of luck...don't be afraid to ask for help...take it easy and rest...stay up on your pain meds     but get up ASAP and walk walk walk  it truly will make you feel better...even after I was home i would walk around my kitchen in living room several times a  day....my dog thinks i'm nuts....LOL

Sable2900's picture
Sable2900
Posts: 26
Joined: Mar 2013

Thought of another question I would appreciate your answering -- after surgery do you go to Intensive Care?  Oh more questions - do you have something going through your nose?  I understand you only get ice chips for a few days - don't care but just heard that.  Anything you can tell me about after the surgery will be appreciated.

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

Hi Sable,

It is not going to be as bad as your imagination makes iy seem, the waiting is worse than the procedure.  They'll wheel you into the OR, probably ask you a couple questions like "Date of birth? and Do you know why you're here?" then its lights out.  Afterwards (seems like no time has passed and you remember nothing) you'll be in a recovery room and they will already be working on pain management, I barely remember being there.  The first clear memory I have following surgery is waking up in my room with my wife at my side telling me everything went very well, I was up and walking the next day.  No tubes in the nose, only a cathetor for a day or so.  Its important to walk as soon as you can and as much as you can and remember to drink plenty of water, both help speed the recovery process along.  You'll be fine.

Good luck and Godspeed,

Gary

todd121
Posts: 641
Joined: Dec 2012

My surgery was around noon on a Monday. Mine was a radical right nephrectomy. I woke up Monday night in a regular room around 7-8pm. I don't remember much of that first evening. I had some vomiting that evening, but that was because they didn't really hear me when I told them that morphine makes me sick. No tube in the nose. Only a tube somewhere else! (Catheter). The next morning they encouraged me to walk and my son helped me. I only made it to the door and back, but that was about 8 am Tuesday morning. They removed my catheter that morning. I started eating that morning (liquid diet), but was on a regular diet at lunch time. By afternoon I was walking down the hall a bit and the next day in the morning (Wednesday) I was walking around the ward. I went home on Wednesday afternoon. Because I didn't do well on morphine, they took it me off it right away and gave me tramodol instead. It worked great for me.

The biggest pain (besides in my side) from that first week was that my bowels didn't start working until Friday night. I recommend a mild stool softener/laxative (emphasis on mild) that first week. I used an over-the-counter one called Senna Plus (which I think is a natural one). The pain meds can be constipating and it takes a few days for the bowels to recover.

You will do great!

Todd

mickf
Posts: 15
Joined: Aug 2012

Hi Sable,  Like yourself and a great many others on this site, I too was petrified about the surgery. I had a total nephrectomy for the right kidney in November 2012. I was in surgery for about 4 - 5 hours then in recovery for a further 3. No intensive care, straight onto the general ward. No tubes in the nose, only a catheter, a drainage tube from the kidney area and an epidural. I felt only minimal pain for the first few days. They had me out of bed the second day and walking a little on the third day. The rest they say is history. My diagnosis now? the specialist has told me that he is not worried about anything at this stage,and I have my next scan in May. I managed to get through this ordeal with the help of all the good people on this site. Between them all, there is no aspect of this condition that they have not encountered and their advice is sooooo valuable. Please take heart from what is said on here and good luck on your journey. 

cralleycat's picture
cralleycat
Posts: 7
Joined: Mar 2013

Sable, I was also just diagnosed.(3/10/13.... thirteen thirteen!).i have a 2.5 cm tumor on my right kidney that was an incidental finding on a cat scan and confirmed with an MRI. I too am overweight, 51 yrs old and unfortunately have diabetes and a cardiac history..(2 heart attacks in the last year and 4 stents since 2001) The surgeon says I'm considered high risk for surgery so they would prefer to do the radiofrequency ablation on the tumor instead.the decision they said is mine and they would do the robotic partial nephrectomy if i choose. I'm still reeling from the diagnosis and i really want the cancer out of my body but am scared to have a surgery..but i'm afraid that if i have the ablation now and the cancer comes back that i may be in worse health later and surgery would not even be an option...the tumor was a 6mm cyst on an ultrasound in june 2009. Has anyone had the rfa treatment? 

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

With your health history, if I were you, I would risk the surgery. You already identified the risk for future complications. The goal is to live being well in the future not compromized. If the will do the surgery, you know that they will be prepared for complications. You will be safe. That's my take.

Sable2900's picture
Sable2900
Posts: 26
Joined: Mar 2013

Cralleycat,  I don't know what to tell you - I'm so new to all of this.  I just hope when I go to the doctor April 2nd he just tells me what has to be done and I don't have to make a decision.  I am terrified.  I just had a new right hip this past November and thought that was a big deal - ha - piece of cake compared to this!  I wish you the very best and let us know how things go for you.

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

Cralleycay,  I might be looking at this differently because of my own illness, but you have multiple medical issues....the goal of the kidney cancer treatment may be to make sure you do not die of kidney cancer.  So look at the risks from the different procedures, compare that to your overall health.  If you where healthy, you would be looking at a nominal 30 year life span.  

I would think RFA will have the lowest risk, and probably ensure you do not die of kidney cancer.

Djinnie's picture
Djinnie
Posts: 914
Joined: Apr 2013

Hi Cralleycat,

I just wanted to give you the benefit of my experience with kidney cancer. I was first diagnosed in 2003, I lived in Dallas at the time. A tumor a 3.5cm was discovered on my right kidney. South Western Medical Centre offered me Radiofrequency treatment to burn the tumor. I had the treatment and obviously regular check ups, all appeared to be fine.

Fast forward 10yrs and by then living in France. I had a CT scan in 2009, it indicated a scar on my right kidney, which was assumed to be from the previous surgery. I recently had an MRI which in fact showed clearly the regrowth of a tumor, pretty much the same size as the original. I was advised that Radiofrequency was not the treatment of choice, only being used for cyst sized tumors.

I am now 8 days post op from a partial Nephrectomy robotic surgery and all the cancer was successfully removed. My surgeon informed me that had I gone this route the first time I probably would not have faced a second operation. Which was also more difficult because of adhesions from the previous surgery. I do not know if the type of treatment I had on the first occasion had any bearing on the reoccurrence of the cancer! But I am pleased to know that it has all gone now.

I hope this helps you in some way to make an informed decision and wish you all the best.

Djinnie

finatic1354
Posts: 2
Joined: Mar 2013

Diagnosed about 3 weeks ago. got a 20cm mass on the left kidney. They started me 50mg of sutent daily for 6 weeks. i was told that surgery has to be done after 6 weeks at this point. Im only 41 and have 2 small children 8 and 10 and a loving wife. I have never been so confused about anything in my life... Cant get over this pain in the chest and back....... almost unbearable. Anyone ever go thru a similar situation? 

alice124's picture
alice124
Posts: 882
Joined: Mar 2012

Finatic,

Back pain, particularly in the flank area of the back, is a common symptom of kidney cancer. With a  20 cm tumor, I'm certainly not surprised there's pain. Did your doctor start you on Sutent to hopefully prevent further growth between now and surgery? Did he tell you anything else such as what type of kidney cancer -- clear cell? chromophobe?  papillary?  A 20 cm tumor is a large tumor, and I would hope its excision in six weeks will alleviate much of the pain. If you can provide more information regarding your diagnosis, perhaps others can chime in on relevant experience.

I understand it's a frightening time for you, particularly with two young children. But kidney cancer advances have been made in recent years, months, weeks, and the outlook is not nearly as bleak as it was just a few years ago. But work on developing and charging the cancer with a positive and I CAN DO attitude; it's one of the most valuable tools you'll have in your fight.  And know that we're here to help.

 

 

finatic1354
Posts: 2
Joined: Mar 2013

Yes im on a 50mg daily dose of Sutent. Started a few days ago. Im sure I was told what type it was and I want to say "clear cell". There is just so much information going back and forth it hard to keep track of everything. This is all just so sudden..... Its a large mass and the complication is that its crushing the pancreas at this time. They want to try to shrink it a bit before going in for surgery.  

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

WE are all different, so to speak.  I had a triple whammy (No not a Denny's breakfast either).  My tumor was big 14 cm, and I had Renal Vein invasion, plus my other Kidney is less than 100% already.  I had lights out around 10 am, and woke up around 2 am the next morning..  I did not ask before how long.. glad I didn't..  I was in the ICU for 10 days..!  This was due to the Renal Vein procedure that almost took out my remaining Kidney.  I had a tube down my throat and the Catheter.  Both tubes were put in AFTER I was out..!   Now, forget all the TV shows.. the breathing tube came out easily.. on the first day I think. No sore throat, etc.  But again due to the Renal Vein procedure the Catheter was in for most of the ICU time.  They wanted to monitor every drop that came out of me..  I won't go in to more detail there... but even that was removed easily, no pain at all..!!   I was regular the day after surgery.. and was walking on day two.  Yes I still had pain...  and a lot of fatigue.  Oh on day 12 I went home..!!  It was not bad at all... if not for the fear and the initial pain, the experince was actually pleasant, if that makes any sense.   I had a smile on my face, even when I hurt.. I made pals of the Doctors and Nurses, remember they are the ones that can bring you goodies..!  The Doctors and Nurses were so nice..  OK, so I got ice chips at first... then I asked about orange juice, nice... then one of the Nurses asked me if I wanted a Popsickle..  OH yes..!!  Popsickles are heaven..!  I was able to get a Popsickle even at 2 am..!   Then I got food...  I never went overly hungry.. and the menu had lots of healty food on it.  After like day 5, I really was ready to go home...  but as my Kidney was still in danger or failing, they kept me a long time..  Finally the numbers got in line and I never looked back..!

I hope it goes even easier for you..

Ron

Eliezer2
Posts: 58
Joined: Aug 2012

One of the common side effects from any meds you might be given afterwards is reduced appetite, I think this is common for all of them.  I agree this is not the ideal way to drop some weight, and no one would choose cancer as an effective diet tool.  But you mention you are "large" so hey at least enjoy and take advantage of the fact that the meds you get ar elikely to turn you into a hot babe!  I lost about 25 pounds after starting Sutent, and would not exactly claim to be hot but at least I am now an old geezer with somewhat normal weight.  I had to change all my wardrobe cause my old clothes did not fit.

 

Gotta enjoy the little good things we can in this fight!

 

You will come out of surgey a little groggy but clearheaded.   When my wife was allowed in to the post-Op room I turned to her and said Not Tonight Dear I Have a Headache, she laughed and knew I was back to being me and cogent.  You will be in the hospital for observation for about a week after surgery.  Of this, the first couple of days could be in intensive care, which just means you have more nurses watching you and whom you can nag.   You will be sore but make the most of it.  Eat stuff you like!  Complain!  And get home as fast as you can.

 

I think the best post-surgery joke was in an old movie with Walter Matthau.  As he wakes up, he is asked "Are you comfortabe?" and replies, "I guess I mak a living ok."

Sable2900's picture
Sable2900
Posts: 26
Joined: Mar 2013

Just back from the surgeon's office and got some good news I think.  I will have Laprascopic Partial Nephrectomy (Robotic Surgery) on either April 8th or 11th depending on when the anesthesioligist (spelling) okay's me for surgery.  I have a 70% chance of this surgery working - if not they will do an open partial radical nephrectomy right then.  I only have a 10% chance of the entire kidney being taken out. 

I can live with this news.  Will be in surgery from 3 to 4 hours.  Was told if only the robotic I will come home the next day. 

I feel sooooooooo much better!

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

Awesome! Good news! God be with you! Smile

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