CSN Login
Members Online: 2

You are here

Feel Like I am Going Crazy

sandy23
Posts: 143
Joined: Jan 2017

I know this has been posted many times but I really need support from you guys right now.

My husband found out that he has a 6cm mass on his right kidney on Wednesday.  He went to the urologist on Thursday and he told him he definitely thinks it's cancer (I can barely type the word) and needs the kidney removed.  They are going to use a type of robot to do it.  He had a chest x-ray and a ct scan with contrast yesterday.  He will have another test at the urologist's office on Monday morning and we will find out the results of yesterday's tests then.

We have two kids to raise together.  We can't make it without him.  

How do you guys bare the uncertainty?  The waiting?

icemantoo's picture
icemantoo
Posts: 3279
Joined: Jan 2010

Sandy,

Sorry you had to join our group. You describe a common feeling we all had in the begining. At 6 cm it is very possible that the surgery will be a total cure. The surgery is not fun,  but if I can do it anybody can. May your future be filed with a full recovery and long lives going forward. These feelings you are going thru take a little while to process.  All of us on this board have been thru what you are going thru.

 

Icemantoo

sandy23
Posts: 143
Joined: Jan 2017

This forum is the first bright spot that I have found.  The last few days have been filled with non-stop google searches and those are terrifying.

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Dr Google is not your friend. STOP LOOKING. Stop looking NOW! Cancer research is proceeding so fast everything on google/yahoo is out of date, stressful and depressing. If its not out of date its just downright crazy: Lizards, leeches and snake oil.

This is a good site. Another good site, of a more technical bent, is Smart patients. As for the rest, leave Dr Google to the Lizard people!

Bay Area Guy's picture
Bay Area Guy
Posts: 449
Joined: Jun 2016

For most of us, I think it's safe to say we all went through the exact same emotions you and your husband are going through right now.  You're fortunate that you found this website while searching the internet for information.  I think the people here are amazing and do just as much as they can to help settle your mind down.  I was going to say put your mind at ease, but, truthfully, your mind won't be completely at ease until it's all done and the tumor is out.  But just to know that there are a lot of people out there that have gone through the same thing that you and your husband are going through, and are still posting their experiences is very comforting.  Be aware of one thing.  Treatment for kidney cancer has advanced immeasurably over the years.  Most times, it can be completely cured through surgery and, when it can't be, it can be managed by drugs and those drug treatments are improving seemingly every day.

I didn't find this site until after my surgery.  I had been going to another support site, not one associated with cancer, but with chronic diseases.  So, there weren't a lot of people there that shared my background.  What I have found is that everyone here shares at least a part of my background.  I was fortunate, if you can use such a word in relation to cancer.  My lesion was very, very small when it was dicovered accidentally in late 2013,  It was 1.5cm, barely visible on a CT scan.  My primary care doctor immediately referred me to a urologist and gave me my choice of one associated with a smaller, local hospital, or one associated with Stanford Hospital and Clinics.  I don't think the word Stanford even got out of his mouth before I said I preferred there.  The urologist I was assigned was amazing, and he took just as good care of me mentally as he did phsyically.  Because my lesion was so small, he recommended monitoring it to see if it grew.  Well, we monitored it for 2-1/2 years until an April, 2016 ultrasound showed it had grown to 1.8cm, still very, very small, but since it had grown, he recommended we get it taken out.  He referred me to an excellent surgeon and on June 22, 2016, I had a robotic assisted laparoscopic partial nephrectomy.  In my case, the operation started at 3PM and I was released from the hospital the next day at 1:30PM.  I just had my first post-op scan and meeting with the surgeon and he said there's absolutely no evidence of any spread or any recurrence.  We'll do the scan again in six months and if it's also clean, then we'll swtich to annual scans.

Way back when, when my dad was going to have an operation, his doctor told him, oh don't worry it's an easy operation.  My dad had an immortal retort to that.  The only simple operation is on someone else.  No operation is easy, but the fact that your husband will have a robotic assisted procedure should make it a little easier on him.

 

Pandabear1011
Posts: 123
Joined: Jun 2014

Hi Sandy, I was diagnosed with a 6cm X 4.5cm X 3.5cm grade 2 kidney tumor back in May 2014. I had my right kidney removed at MD Anderson here in Texas. My doctor said my prognosis was excellent and so far so good! Its been almost 3 years and no recurrence. A 6cm tumor is considered Stage 1.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

A 6 cm tumor that hasn't grown outside the kidney in any way NOR grown into any of the veins or arteries in the kidney is Stage 1 (in other words, fully contained). Also, it assumes no other tumors anywhere in the body (it's the only tumor).

You don't really know the stage until 1) that tumor has been to pathology so they can stage it and 2) you've had thorough workup to make sure no other tumors are present. This workup should include a CT with contrast if possible of the chest/abdomen and pelvis, and possibly a nuclear bone scan and a brain MRI. This is what they do when you go into a drug trial to make sure of your staging.

Also, the stage is not the only information that is important. Very important is the type of RCC and what grade it is. You don't know this until after pathology either.

I keep posting about this, because I was completely shocked when I was told I was Stage 1, and I came on here and everybody (inlcluding my surgeon) said I was probably cured only to find out that I was Stage 3, Grade 3 and had a very high probability of it returning.

Given all of this, remember that a prognosis is not really helpful information. Nobody can tell you what will happen to you. There's no glass ball for reading the future. So try not to worry about it too much.

Best wishes,

Todd

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

I know exactly what you are going through.  The description of your story brings those strong memories of when I was diagnosed.  After I met with the doctor I spent a lot of time searching the internet trying to get a clear understanding of what I was up against.  Problem was, the more I searched the more gloom and doom my outlook semmed.  But, I stumbled on this site and posted my story.  Several of our members jumped right in and provided some really good advice.  Number 1: STOP searching the internet.  The information is old and outdated.  Number 2: make sure you are in a hospital that have doctors experienced with RCC.  Number 3: They reminded me that my tumor (about the same as your husbands) has a good prognosis.  Number 4:  Your worst enemy right now is your imagination.

All of this helped--and I hope it helps you.  I do understand your fear and what you are going through.  All I can say is try to stay positive and try not to jump to conclusions.  Let the doctors do their work and visit here with your questions.  We'll try to help as much as we can.  You guys can do this!

Blessings, Stub

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

I had a 4.2 cm tumor. It was removed last month with robotic assisted surgery. I still get a little tired, have to be careful with lifting and twisting (So yoga class and grooving to Chubby Checker will have to wait), but I'm driving and well on my way to doing almost everything. My recovery restrictions are based on the incisions still healing, not on anything the kidney mass did or didn't do.

You can easily work yourself into even more of a state than hearing the c-word already did, so for starters stay away from Dr Google. I hung a spatula on the wall for those times I'd need to scrape myself or someone else off the ceiling. Mostly it's a silly reminder for me to breathe and chill, which is some days easier said than done.

They don't know what exactly a kidney mass is until it's removed and the pathologist looks at it, but kidney cancer (1) isn't a death sentence, and (2) any statistics you've seen about survivor rates for 5 or 10 years are based on people who were treated more than 5 and 10 years before those particular statistics were first published, so to are out of date. Treatment has improved so much and continues to do so. 

Earlier this month on my birthday, my daughter said she was so glad I was still here. I told her I was still planning on being around for next year's, too, and she told me she hoped I stuck around for several more as well. Yup. I don't plan on going anywhere any time soon, except maybe vacation and the usual places. 

Hang in there and keep us posted. 

All the best,

Jerzy

sandy23
Posts: 143
Joined: Jan 2017

I can't tell you how much I appreciate everything you guys have said.  Just the fact that you took so much time to type your responses means the world.  Thank you.

Do any of you know about blood in the urine?  My husband has that and I read that means that it is already in the advanced stages and prognosis is not good.  I'm sorry to be so personal but did any of you have that?

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Means that you've got blood in your urine. It means many things Gallstones, cancer. For me it was cancer on May1st 2013. It is no indicator of anything apart from something wrong somewhere. It is no indicator of stage or progress in cancer.

Stop consulting Dr Google! He is either out of date or crazy. Perhaps Lizard monsters are taking over out innards, but I doubt it.

Everyone is giving such good advice that I doubt I can add any. Try not to panic. Your imagination will imagine the worst. Be aware that that is what is happening. I have never met a cancer patient who found that the reality lived up to their imaginings, so try not to panic.

izzycohen's picture
izzycohen
Posts: 75
Joined: Aug 2013

The blood in urine was my intial tipoff that something was wrong.  As others have pointed out it can be a sympton of a number of things.  Most of us on this board experienced the same thing.  Years later, here we are.  Someone else wisely suggested you stay away from Dr. Google.  good advice.

 

mlph4021's picture
mlph4021
Posts: 76
Joined: Dec 2016

Is how my tumor was found. Mine was almost 11cm in every direction, had my right kidney removed Dec. 3rd and I am doing well now. I was totally crazy when I came here, ask anyone, terrified of every little thing. Time will help. The surgery will be rough, get all the extra help you can to assist with his recovery and give yourself some alone time. I was able to make my hubby go golf a few times to give him a break. I think he needed that. 

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I've never heard that that has anything to do with "advanced stages" of RCC. It is a symptom. There are other types of cancer that cause this and many are very treatable. There are even other types of cancer in the kidney that cause this and some are very treatable.

So don't take that to mean anything scary.

Todd

icemantoo's picture
icemantoo
Posts: 3279
Joined: Jan 2010

Sandy,

 

 

Been there did that in April 2002.. False news that this means bad prognosis.

 

Icemantoo

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi Sandy,

My first ct scan was in mid October. I also have a mass on my right kidney. Mine is 4 to 5 cm and it is being removed on January 31st.  I won't know what it is until it has been removed but it is most likely cancer.

It is also most likely that it will be completely gone after my surgery and never return.

This is also the most likely outcome for your husband.

I don't like the waiting and wondering but it has had one positive effect.  It has given me time to calm down.  I am nervous about the surgery but not afraid for the future.

I thought I was calm when I first got the news but on one of my daily walks I stopped and realised I had been pacing up and down the side of the road for 5 or 10 minutes.

This forum has been very, very helpful for me.  I have no questions left for the doctors.

Steve.

 

donna_lee's picture
donna_lee
Posts: 963
Joined: Feb 2009

eading comments on the web or some sites can be informative, or make you go bonkers if you believe even half of it.

My annual physical with a UA (urinalysis) came back with blood; but the Ultrasound (US) for maybe kidney stones,knocked me for a loop.  The mass in my R. kidney seemed to have spawned a mass or two in the left lobe of my liver.  And oh, by the way, most people D'xd at this stage (IV) only live 5-7 months unless surgery is possible.  This was in May 2006, 10 1/2 years ago.  You can refer to my bio page by clicking on my user name for all the details.

But being told you have kidney cancer may take everyones' breaths away, but it is not a death sentence.  This is when you put on your work clothes and dig in your heels.  Read, learn, ask,  Does your clinic have a Patient Navigator?  What are the resources in your community?  Is it a small area with one cancer support group; or large enough to have groups by type of cancer.  Dr's cannot reveal who else has been treated for Kidney cancer (HIPPA) regs, but sometimes asking new friends in the waiting room if they know of anyone just starting out like you are.

I cried -Normal- off and on the first couple of days.  But woke one morning and realized I was breathing, was still alive, and needed to do a lot of living before I was even told I might be able to have surgery.

I have been soooooo lucky. 

Hugs and good wishes...you'll get thru this.

donna_lee

 

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

I had a 10 cm tumor back in August 2014, almost two and a half years ago, so far si good. A 6 cm is usually stage 1 with great prognosis

You won't have to raise your children alone, stay positive and vigilant. A surgery is all he probably needs

Forough

sandy23
Posts: 143
Joined: Jan 2017

I can't tell you how much I appreciate all of you.

Today, we are on high worry over tomorrow morning's results from Friday's tests.  The urologist said that on the CT scan that his liver looked good and he didn't see any lymph nodes.  Would that show on a CT scan without contrast?  Also, he is doing a cystoscopy.  Is that unusual?  Did he see something that he didn't tell us?

icemantoo's picture
icemantoo
Posts: 3279
Joined: Jan 2010

sandy,

 

The cystoscopy is to rule out bladder cancer. None of us guys has fond memories of it. It is a routine test.

 

Icemantoo

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Did they knock you out for that?

My 'telescope' procedure was a pyeloscopy and I was pleasantly unconscious while it was happening.  It still stung for a couple of days afterwards, though.

Steve.

gregslovey
Posts: 33
Joined: Oct 2016

my husband had a 10cm mass on his left kidney almost six years ago.  they took out the tumor and his kidney...it did not invade any other organs. I was like you, though...i researched and cried for the two weeks between dx and "cure". if there are any liver lesions they would have shown up even without the contrast.  it certainly takes your breath away when you hear the "C"word, but breathe deep and try to just take it as it comes.

good luck to you both

izzycohen's picture
izzycohen
Posts: 75
Joined: Aug 2013

Sandy,

Like Iceman said, many of us have been where your husband is now.  For me it was 3 1/2 years ago.  The tumor dimensions were similar to your husband's.  My surgery was with the DaVinci robot.  It went well.  Medicine has a history of success with this situation.  While there are no guarantees, the success rate is very good.  There is a chance that, after surgery, your husband will not have to do chemo or radiation therapy.  I didn't and am cancer free 3 years later.
Dealing with the emotional shock is difficult.  Be strong.  Focus on what is important in life.  The odds are with you.

Prayers,

Izzy

APny's picture
APny
Posts: 1987
Joined: Mar 2014

I'm so sorry you have to be here. Blood in the urine is how they found mine. It was stage 1, and under 4 cm. It doesn't mean it's advanced at all. It all depends on where the tumor is located. Mine was close to the collecting duct and that's why it bled. Which was a blessing or they would never have found it. Wishing your husband and you the very best. There's a very good chance the surgery will be the end of it. Hang in there!

sandy23
Posts: 143
Joined: Jan 2017

We are back from his appointment and the chest x-ray was clear and so was the CT scan with contrast.  He did say that since it is on the right side though, that it isn't possible to see in between the liver and kidney but he doesn't anticipate it being in the liver (now I am worried that it is there and they just can't see it).  The cystoscopy was clear and looked good.  He will have his first appointment with the doctor actually doing the surgery on February 2nd and surgery will be scheduled at that time.

I am probably going to really need you guys a lot during that time.  If I become annoying, just tell me.

mlph4021's picture
mlph4021
Posts: 76
Joined: Dec 2016

And over 4 cm bigger than his. My liver was folded over my tumor, really strange sight to see and it still didn't get into my liver or anything else. Please listen to the doctor and don't let your own fears get in the way. If he doesn't think it is in the liver, trust in that, he does this all the time. This is what I had to keep telling myself and eventually it calmed me down. From time to time I start "what-iffing" but I shut that down, my doctor tells me it was contained and the margins clear. Unless I eventually find out otherwise, I consider myself to be cancer free! 

Bay Area Guy's picture
Bay Area Guy
Posts: 449
Joined: Jun 2016

My tumor was also on the right side, but much, much smaller than any of the ones mentioned by others (1.5cm at diagnosis, 1.7-1.8 cm on removal).  All of my CT's (and I think I had a total of 5 over the 30 months between diagnosis and removal) were able to see the liver just fine and no other part of my abdomen had anything odd other than my intestines, which had the evidence of two previous non-cancer related surgeries.  A chest x-ray from one month ago, which was six months post-surgery, showed nothing unusual.

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

My tumor was growing on the lower pole of my right kidney--but still encapsulated within the kidney.  The encapsulation part is the most important.  This means it hasn't come out of the kidney lining and grown into other organs.  I'm surprised the doctor said this especially since you had the CT with contrast.  They would surely see any type of metastic activity in the liver with this type of scan.  The surgical team where I am being cared for (Mayo in Rochester, Mn) didn't mention anything like your doctor did in my pre-op scans.  They told me that it appeared to be contained and that pathology would confirm it after it was taken out.  Since your doctor said that the scans were clear, I'd breathe a sigh of relief and focus on the positive.  It appears that surgery should take care of this for your husband.

Just a quick reminder for you--we've all been where you are and we all remember the emotions that we felt.  Your questions and reaction to the diagnosis is absolutely normal.  Please ask any and all questions that you have.  We're here to help.

Keep us posted.

Stub

Subscribe to Comments for "Feel Like I am Going Crazy"