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Newly diagnosed and feeling rattled

Gloozkap's picture
Gloozkap
Posts: 11
Joined: Jun 2017

Hi there,
I am a 45 year old father of 2 boys, 4 and a half and 2 and a half. I received the news I was expecting from the CT scan. 3.9 cm Tumor RCC on the upper pole of left kidney. So far no sign of metastatic disease. Lymph nodes Normal, CT and ultrasound show nothing else noteworthy, chest X ray clean. It was caught incidentally. One thing more of note though  - To add to my worries the CT scan also found a lesion on my right kidney measuring 1.4 cm, but they think it may be a renal cyst I'm told cause the CT scan couldnt identify conclusively. Scheduled for follow up ultrasound and MRI to determine the nature of it. 

I was a complete wreck waiting for results of tests, but strangely calm after absorbing the news. I guess I am preparing for a fight and getting my mind right in the process. For my family there is only one choice, get better. I tend to be very philosophical about death and disease, in that I see all the years so far as a blessing as opposed to focusing on all the years I may not have access to. 

Has anyone ever dealt with or heard of RCC appearing as small tumors on both kidneys? I was prepared for the single kidney diagnosis but I am pretty concerned and hope that the second lesion is just a cyst. The prognosis would be infinitely better if that were the case.

Hi to all of you who are are and were in the same boat as me. Pretty rough seas out here in our little boat. I would love to hear from other voices in the "club"

Thanks all. Take good care

G

icemantoo's picture
icemantoo
Posts: 3304
Joined: Jan 2010

G,

 

While I could suggest ways that this could be dealt with each indididua case is different. Seek out a top Kidney Cancer facility or teaching hospital for an opinion or secobd opinion. It appears that the left kidney can easily be dealt with by surgery ad the cyst or whatever it is in the right Kidney because it is very small can be dealt with a less infasive procedure.

 

 

Icemantoo

stub1969's picture
stub1969
Posts: 876
Joined: Jul 2016

 

Let me just start by saying I know exactly what you are going through.  Here's a little about me--but you can read more about the procedures I went through by clicking on my "name"--47 year old male when diagnosed in July '16.  I have a wife of 24 years and three kids ranging in ages 11-21.  I feel I was/am pretty healthy...I was running most days averaging about 25 miles per week and lifting weights on my off days.  I eat right and don't smoke.  My tumor was found incidentally by my nephrologists checking to make sure my Medullary Sponge Kidneys were okay (If you look that up it basically means my filtration system is a little goofy and I produce stones).  Results from the CT were that my MSK was okay but a 5.8 cm lesion was found in my right kidney and a 2.4 cm spot was found in my left.  I was sent for an ultra sound and it was confirmed that the 5.8 cm lesion was probably (80%) cancer and the spot on my left was a simple cyst (these are very common).  Surgery within the month and checks every six months after.

I'm able to look back on my journey with a much clearer head now.  I was a mess emotionally.  I was so concerned about my family and my kids that I couldn't think straight.  I'm a "go-getter" by nature and I needed to be in control of this situation.  So, initially I did what I thought would help--I jumped on the internet and let Dr. Google diagnose me and determine my long-term survival.  Let me tell you--that was not the thing to do.  I soon learned that the numbers currently used in a lot of easily accessible literature is outdated and inaccurate.  I also learned (with the support and guidance of the members on this board) to let the doctors do their job and take one day at a time.  I know it's hard, but try to relax.  Understand that surgery is coming--probably a partial nephrectomy.  You'll be down for a couple days and recovery will take a few weeks.  You'll have regular scans for a few years then eventually move to annual scans. 

I know this is a shock to you right now.  Lean on us when you need to—we’ve all been through this.  Ask us questions and keep us updated.  We’re here to help.

Take care and God bless

Stub

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

Just echoing what Stub said. Your case sounds very similar to my wife's. It hits you like a runaway train. Don't let it consume you. Let your Dr.s do their thing and get that nasty mofo out and you will make a full recover. 

My wife is just over 12 weeks out of a partial neph and for all intents and purposes doing quite well. She has some days where she still feels kinda "blah" and we have discovered that certain foods don't set well with her anymore but we just jump off the bridges as we cross them. Lol

I encourage you to lean on the great people here and to ask any and all questions you may have. Chances are that someone has, as Iceman says....."Been there, done that."

Gloozkap's picture
Gloozkap
Posts: 11
Joined: Jun 2017

I appreciate the responses immensely. Thank you all. These diagnoses can hit like a thunderclap, and the loneliness of dealing with the internal struggle and all the unknowns are distressing. 

It helps to know I am not alone. 

Stay well all of you.

G

 

lobbyist0724's picture
lobbyist0724
Posts: 436
Joined: Sep 2016

Hi Gloozkap, I am on the a similar boat with you too. I was 42 when diagnosisconfirmed a mass, my two daugthers were 5 and 2 years old. Worry everyday about what will happen to them without me. The worry and the stress of the uncertainty was so hard to describe, and then I found this forum :)

My 2 cents is to look at what will likely happen. With that size, no met, but likely malignant (so just assume it is, if it is not, it is a bonus), but not a big deal relateltively. Likely you will need surgery, I had an open surgery and I don't even need any pain med after 4 days from the surgery. The anticipatory anxiety was 100x worse than the surgery. Then, pretty much it is done.

Good luck and find a doctor you trust!

Carmen

Gloozkap's picture
Gloozkap
Posts: 11
Joined: Jun 2017

I appreciate your message Carmen. It comes at a good time. I have come to the realization that once the diagnosis is in, and the most important people are in the loop, and the ball is rolling in terms of tests and appointments then life returns to some relative normalcy, with scattered moments of despair. Come what may, the kids are always the primary concern and it is important to be positive.

Thank you so much. Take good care.

G

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

You can't get around the fear and worries after the diagnosis. If you have faith in your Medical professionals your care will be explained and detailed whats going to be done. There are many people here who helped me with the posts that are on this Forum. I would say that your caretakers will be more stressed than you and will need some help also. Sending Positive thoughts your way.

Gloozkap's picture
Gloozkap
Posts: 11
Joined: Jun 2017

Feeling the positive thoughts and thoroughly appreciating it. 

Thank you again.

G

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

Gloozcap, totally normal to feel blindsided.  I think most of us have "incidental findings" that led to the RCC diagnosis.  Im a parent too, have a 6yr old and 8yr old boys.  I went through so many different emotions: stunned, afraid, strangely positive, denial, and now post nephrectomy feeling exhausted!. Take it one step at a time.  I was told I have a cyst on Left kidney (apparently very common) and 11 cm tumor on the right kidney which warranted nephrectomy.  Your lession is relatively small which will most likely  be treated in a less invasive way.  Try to stay informed and positive. Sounds like you have a great support system...utilize it.  We are here for you!

Keep us posted.

-bee

Gloozkap's picture
Gloozkap
Posts: 11
Joined: Jun 2017

Hi bee,

I am very glad for this forum. And I truly hope you are recovering well. I will soon be in for surgery and it will be my first major one. One thing I am and one thing I notice all of you are, is strong. I have always recognized the inherent vulnerability in life and it has allowed me to drink the pure joy out of it. I have been lucky. And as fragile as we are, there is the power to heal and overcome - built into us from millenia past.

I see survivors here. I see life lovers here.

Take good care.

donna_lee's picture
donna_lee
Posts: 984
Joined: Feb 2009

Have a local acquaintance who had partial nephs on both kidneys about 7 years ago.  He's doing well.

I had full open neph on the right, but still have cysts in the left kidney that show on the regular CT's.

Gobsmacked, the floor fell away, and I thought it was my gall bladder.....incidental finding it was.  That was 11 years ago.

It's not something you plan for in a lifetime, but you learn to roll along with the latest news.  As with any upcoming major surgery, get you paperwork ducks in a row with your attorney  Click on my user name for my 'full" story.

Keep us in the loop and we can offer one or more answers to most questions.

Meanwhile enjoy the family and try to relax.

Hugs to all.

donna_lee

Gloozkap's picture
Gloozkap
Posts: 11
Joined: Jun 2017

I appreciate your candour donna_lee, and I read your story. You have a strength in you and that is clear as day. Thank you so much for reading and responding to my post and good luck in all your many days ahead.

Take good care.

G

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

Hi Gloozkap (what does that mean?),

Everyone here seems to have their own version of emotional roller coasting.  In my case I had some highs as well as lows, fear at times and even peaceful feelings at other times.

You'll probably have to wait some weeks for more tests and surgery so you'll have lots of time to settle down.

I didn't see my medical adventures as a fight. I think more in terms of acceptance, education, understanding and probably some intelligent lifestyle changes.

My Clear Cell RCC tumour was about the same size as yours but on my right kidney which was removed in early February. I recovered well and I am 100% OK now, as far as I know.  My first surveillance scan is tomorrow.

My case is very typical. I hope yours is even better.

Steve.

Gloozkap's picture
Gloozkap
Posts: 11
Joined: Jun 2017

Good question - Gloozkap by many spellings is a name known to my First Nations culture, Gloozkap is a mythical being, also known as "first man" or "man from nothing".

I hope your first surveillance scan goes well. I imagine you have some trepidation over that but somehow I see good things for you. For me this is the new reality and for changeable folk it is about rolling with the punches, even if they are massive gut punches. I appreciate you responding to my "cry" in the darkness. This forum is like a well lit way station on a dark stormy night. I am confident things will work out for me ( as best they can in these sotuations) and that is part and parcel to my positive attitude. 

I already have an adapted lifestyle which will help in the healing process post surgery. I Dont smoke, dont drink, eat healthy, exercise. One has to do all these things to keep up with 2 young boys. Something my Dr told me when I turned 40 and my wife was pregnant with our first. "get out there and get fit and get ahead of the game or you will be feeling like a truck hit you every day" And that was just with one boy! Now I have 2 and being a leaner, cleaner version of my former self has helped greatly.

Good luck Steve and take good care.

G

 

 

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

Hi again Gloozkap,

My surname 'Adam' also relates to the first man.

Have you heard the old joke that god made Adam and Eve, not Adam and Steve.

Not sure what that means for me... :)

Steve.

Gloozkap's picture
Gloozkap
Posts: 11
Joined: Jun 2017

I appreciate the laugh Steve. Im surprised I didnt pick up on your name and incorporate it into a joke of my own. 

A little slow on the uptake yesterday id guess

Stay frosty

Geoff

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Hey "G" I can appreciate the anxiety. Not knowing and waiting is horrible. BUT sounds like your mass on left kidney will probably be taken care of by surgery. The size seems to be Stage I. I had mass on left kidney and a cyst on right kidney. My urologist/surgeon showed me the different in the margins and how bright the cyst is with smooth margins, compared to the irregular margins and darker mass on Left kidney. 

He was right. The left kidney had to be removed ONLY because of it being near a blood supply making surgery a little more risky. 

Sounds like too, you will be fine, Stage I and nothing spread. So please do not use up all your energy worrying. I know, I know, easier said than done. Have you ever had any surgery before? I can help you with this part. 

Keep us posted. You'll look back and be glad they caught that and with surgery its gone. 

Do not let "it" run over you now.

Sending you calm, healing hugs,

Jan

 

Gloozkap's picture
Gloozkap
Posts: 11
Joined: Jun 2017

I should know better, spent all day on Dr Google when my Urologist appt is just around the corner. I did spend some time reading some of the stories here. There is something inspiring to me about people from all walks of life coming together to share initmate details of personal struggles and triumphs with the same illness. The human condition laid bare before us. It can be painful and ugly, but the human spirit is a thing of inimitable beauty!

I appreciate your response and your sage advice. My amazing wife booked us a resort weekend to take my mind off my mass and my eyes off the internet. She may have to steal my phone away though - but I think it will be nice to spend some real qaulity time with my boys and my wife. They will be my lighthouse should seas get stormy and dark. Im hoping for tranquility though - 

It will be my first major surgery, and to be honest I always expected it at some point. This is my new reality, and as a highly adaptable creature it is likely I will accept the fact that I will be losing a piece of my plumbing one way or the other.

Without us, who will keep these specialists and surgeons in all that scratch!

Thanks again and take good care.

G

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

Hello Gloozkap,

Sorry we had had to meet like this, but I am glad you found us.

I was 44 when it was discovered and I also have a 7-year-old daughter so I know what you are feeling right now.

So, I had two tumors, but they were both on the same kidney.  Mine were 2.2cm and 0.8cm.  I can only assume that they occurred at different times due to their size difference.  One was on the north pole and the other was on the south pole.  I also, and still do, have a simple cyst in that kidney as well.  The cyst is anywhere from 4cm to 2.7cm, but no one seems worried about it.  

I went to MD Anderson for treatment, they removed two tumors from my right kidney and I got to keep more than 95% of kidney.  Surgery wasn't too bad.  I spent a couple of days in the hospital, four days in a hotel, and then I flew home.    That was back in 2015 and so far, nothing has come back and I plan to keep it that way.  

 

When you get some time watch this video.  It was a video just like this one that gave me a lot of hope and reassured me.  The doctor giving the presentation is a urologist at MD Anderson.  It's about 30 minutes and has very valuable information:

https://www.youtube.com/watch?v=493RFA_tA1I

I am going to echo what others here have said, find a urologist who specializes in kidney tumors.  I know this may sound odd, but you have time to find a specialist.  There is a good chance you've had this for several years and I am glad they found it now and not 5 or 10 years from now.  

Keep us posted and please feel free to reach out to me or post any questions you might have.  This is a very good group of folks here.  

Gloozkap's picture
Gloozkap
Posts: 11
Joined: Jun 2017

Hi Medic

I didn't even think to check YouTube. It was a great source of information - thank you. I am pleased that you are doing well and your follow up has been positive. Our kids need us so much when they are young and your daughter will have you around through all her milestones. You say there is a very good group of folks here. I cannot agree more. Even the people on this thread that took the time out of their days to lend me a hand have been a godsend. I will not ever forget it.

I was on the bus yesterday feeling despondent and looking at all the faces young and old. I thought to myself. "I may never get to grow old, how lucky these people are to be so carefree - planning their days and their lives" But the truth is I do not know what their stories are, what they have had to overcome in life, whether they are actually battling an illness. We all have our crosses to bear. 

I will take your words to heart. Hopefully, I will get ahead of this very soon and be another voice to lend to those reaching out for some comfort.

Thank you again and take good care.

Geoff

 

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