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New. Waiting. Worried

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

I just received ultrasound results that show a 3.3cm mass on my left kidney.  I go in for a CT soon (it's trying to be scheduled now).  Of course, I'm anxious.  I know that my mass (as of now) appears to be one of the smaller ones.  Does that mean it's less likely to have spread?  Do they look ALL over your organs in a CT scan or just focus on the kidneys?

I've been researching and reading all I can about the surgery.  Thank you all for sharing your stories and making me feel somewhat better.  The thought of surgery really scares me more than the thought of the cancer.  

I've had off-and-on back pain for a while now .  I'd always assumed that a cancer pain would be sharp and defined, but mine isn't like that.  Silly question, but after the surgery recovery, that pain will go away for good, right?

I'm sure I'll have millions of questions for you all...thanks in advance for any advice, encouragement, etc. that you offer.

 

Jim

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

Most people in your situation have a very good outcome. Without more information there's not much more to be said.

Waiting for information, scans, reviews, procedures etc. is hard, but you will get used to it.

Asking those millions of questions here is a great way to pass the time.  Joining this forum was the best thing I did.

I had no pain at all, by the way. Even the aftermath of surgery was OK.  The only pain I had was the removal of some very sticky protective tape from a long stapled incision.  One of the nurses said 'you've basically just had a wax.'. Ouch!! Ouch!! Ouch!!

Steve.

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

Tapman,

 

At 3.3 cm you should be fine. Stay away from Kidney Pie during the holidays.

 

Icemantoo

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

The scans I had have been roughly from the sternum to the hips. They'll check everything there.

I had a scan two weeks ago. I looked at the report online and saw 'cholecystectomy noted'. I had to look that up. Apparently they removed my gall bladder at the same time they took my kidney, but nobody told me that.

Steve.

randyradiohill's picture
randyradiohill
Posts: 67
Joined: Aug 2017

It's good if they've found it early.  Mine was found totally by accident (2.7 cm) on the lower pole of the left kidney.  Unfortunately, it had broken containment which puts me at a higher risk and means I have to have to be in a higher scan protocol.  My surgeon was very optimitstic though, and shared a study which indicated I have about an 8% chance of reoccurance. You will have lots of questions, anxiety, and dark feelings you've probaby never experienced before.  This is a great place to share and ask questions.

stub1969's picture
stub1969
Posts: 917
Joined: Jul 2016

Anxiety?  That's part of the "fun" with this journey.  The true test is figuring out how to deal with it.  Once you do, this journey isn't as bumpy.  Like others have said, with a 3.3 mass the outlook for you is very bright.  Soon you'll get a surgery date then things really start to move along.  Kee us updated on how things are going and with any questions you have.  We'll do our best to help.

Take care,

Stub

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

I had severe back pain that led to an x ray, then an m r I because image showed mass on kidney. I had no pain or symptoms from the kidney mass and it was 11 c m. The cat scan images all the organs and are evaluated. Prepare now before the surgery. There's a lot of recent newbies like us here. Go through some posts.ask questions and they should get answered. The surgery isn't fun but not half as bad as your mind will make it. Positive thoughts your way.

Bay Area Guy's picture
Bay Area Guy
Posts: 514
Joined: Jun 2016

My CT scans have pretty much looked at everything from my aorta down to my tailbone.  And that's one of the reasons why I have not balked at having an annual CT.  There's a history in my father's family of aortal problems and I have had a few stomach issues that required surgery to correct, so getting some professional eyes on my innards on a regular basis is something I don't mind.

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

I guess one of my big fears is that the cancer started somewhere else and spread to the kidneys instead of vice versa.  Now every pain I have, I wonder if that's a new cancer spot....

 

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

Tapman,

From what I have read Kidney Cancer spreads from the Kidney rather than other cancers spreading to the Kidney. At 3.3 cm it is unlikely to spread.

 

Icemantoo

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

That makes me feel better.  Now, if I can get past the feeling that every ache and pain I have is a different kind of cancer I'll be good!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Hi. Mine was thought to be 3.6cm but was actually smaller when they took it out. Yours is small so sounds like they caught it early which is great!! For the past year I always felt like someone punched me in the kidney/back. It was a weird pinching feeling at times too. I had surgery 7 weeks ago and that feeling is completely gone!!! I do believe the CT scan shows other organs because it is an abdominal scan. Along with the tumor I was told I had cysts on my spleen and pancreas. So ,yep, I guess it does catch it all. Please know you are free to ask anything on here. Everyone is very helpful!!

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

My left side used to always hurt...a dull ache mainly.  During my normal yearly exams it was noted that my kidney function looked to be decreasing, so I was referred to a Nephrologist.  Mucho blood work - levels have gotten much better, but the ultrasound showed the mass.  Blood work showed a vitamin D deficiency, so I'm on suppliments for that.  I was also on a GERD medication that could affect the kidneys, so i'm on a different one (that's not working so well, btw).  As soon as I started the suppliment an quit the meds, that particular pain went away.  I still feel things on my left side...there's still a little pain...but it's not hard to get out of bed anymore.  Waiting for the CT scan to be scheduled.  Now every ache and pain I've had (like one under my left shoulder blade when I'm sleeping on that side) makes me wonder if there's more of the big C out there.

As an aside...I've had microscopic blood in my urine since I was in my early 20's.  I'm now 54.  In my 20's I had a bladder xray and nothing showed.  Doctor said some people "just have that"...and that's what I took to be true.  I can't imagine I've had cancer for 30 plus years.  I do have a very little hope that maybe it's some kind of scar tissue on my kidney instead of cancer.  I know there's only like a 20% or less chance of that...but I'm hoping.  

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

As a small mass on your kidneys, it is unlikely to be causing you any pain, but you never know.   The thing about kidney tumours is that they can usually grow very large before you are symptomatic in any way.  At under 4cm it is unlikely that it is causing any of your syptoms and that this is a serendipitous or incidental finding.  Meaning they are looking for 'stuff' and find something.   Lots of us present for back ache, side ache, womens problems and get a scan - often an ultrasoud - that idintifies a mass - that is usually followed up by a CAT scan with contrast.   You might see a reference to KUB on your scans that stands for Kidney, Urinary Tract and Bowels, they are looking at those areas.  IceMantoo is correct in that Kidney cancer usually is a primary that spreads not the other way around. 

Back to your scan, your CAT scan will be done with and without contrat most likely so they can see what shows up with the contrast, cysts (which 50% of us have) have thin walls and are fluid filled and empty inside, tumours are more complex. 

If it is a cyst there will be some follow up but unlikley surgery.  If it is tumour like, a referral to a urologist and most likely surgical removal.   The guys on the board here will answer your questions about surgeons and options.   At under 4cm most tumours are removed and the surgery is considered 'curative'.   Of course pathology will look at what kind of tunour it is, if there are clear margins and you will be advised if you need further scans to ensure no spread of the disease. 

At under 4cm you may be a candidae for nephron sparing surgery (partial nephrectomy) where only part of your kidney is removed, this is good, kidney left to ensure good kidney function.  Sometimes as litle as 10% is removed.  You can function very happily with one kidney.  Losing only a part of one makes almost no difference to your life assuming you had nornal renal function before.   It does depend on the location of the tumour and the surgeon as to what type of surgery you can have.   There are also radical nephrectomy - whole kidney removed, and the surgeries can be done 'open' one large incicision or 'laproscopically' several (4 - 5) small inicisions of varying sizes from 5mm to 5cm.  A surgery can be done by hand or by robot.  A name you will see is Da Vinci with regard to the robot. 

Recovery is 3 weeks partial - 6 weeks open from surgery before you will be up and about able to do a normal day depending if it is laproscopic or open. Although you will be up and waling within 24 hours usually.  Plenty of time to learn all about that. Everyone has a different story of recovery from surgery. 

 

I had a partial nephrectomy laproscopically on 9th November, today Christmas Day I am 100% my old self.  Completely and utterly forgot I have ever had the operation.  I recoverd well and had no complications at all and to top it off as AnnisaP posted, I was one that had a rare kind of tumour that mimicked a renal cell carcinoma, so I have no follow up scans to look forward to.  So it is possible, maybe a 10 - 20% chance. 

Please try to stop worrying, everything will happen in good time.  The guys here on the board are hugely supporting and helpful and hopefully your medical team will be too. 

 

 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Well recently there have been 2 ppl on here whose tumors ended up not being cancer. I hope that is the caae for you!

JimHarrison36502
Posts: 30
Joined: Dec 2017

Mine was found at 2.2cm .. Already had scans of my lungs downward and I'm scheduled for surgery on January 16th. My dad passed away from renal cell in 2013 . His wasn't found early. Stage four at the time of diagnosis. My doctor's gave me a pretty good prognosis but I'm still worried sick. The anxiety is crucial. But I'm dealing!! Got a great support cast and trying to be positive.. Glad I found this group! 

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

Jim,

 

Sorry you had to join. All of us felt like sh-- when we herd the diagnosis. Harder that you had a famoly history. For what its worth at 2.2cm it is very unlikely that the prognosis is not just good, but excellent. The anxiety will wear off. We have all been there and done that. That was me 15 1/2 years ago.

 

Icemantoo

JimHarrison36502
Posts: 30
Joined: Dec 2017

That makes me feel so much better!! 15 1/2 years is awesome!! I love reading the survivor stories. I'm 46 and in great shape.. Lifted weights my entire life always stayed in good shape.. But since Dad had renal cell... I'll admit... I've often worried!! 5 years have passed since Dad left us but he made it very clear that he wanted his boys to stay on top of this disease. I made sure I did all I could to catch it soon. 

 

Brock1969
Posts: 80
Joined: Jan 2018

I think it's absolutely wonderful that after all these years you keep up with this board and provide comfort to those who need it. That's awesome 

 

-Brock

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

Hi Jim! Glad you found us. We're to support, inform and encouage you best we can, as you already see!

I too have a pain in my back which the Urologist/surgeon and his PA stated its not related to my diagnosis. 

My Neurologist, for another disorder, said it WAS related to tumor.

BUT my primary doc said, well we'll see if its there after surgery. It went away! It was referred pain from tumor/cancer.

My surgery went very well, litle over 4cm tumor and nearly 4 years NED=No Evidence of Disease.

So hang in there. TRUST your doctor. 

BTW: they monitor you with this blood test that tells them if cancer cells are increasing or not. Plus you will have scans/chest xray and such as they monitor you for 5 years.

Here for you all the way! Sending you healing hugs with HOPE!

Jan

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

BTW, Jim people forget to tell you about the GAS that is used to raise your abdomen so the surgeon can SEE around your organs.Have you ever had any surgeries? Well, this gas gets trapped in weird areas, mostly around the shoulder. i have had 4 abdominal surgeries and the gas being trapped was my worst pain! Once I knew it was ONLY gas, I stopped worrying about the pain. Instead I moved my ar, around in circles to get the gas to move.

Also, I used ice packs around the incision. I had to beg for it while inpatient. To me, it reduces the edema/swelling and helped reduce pain much more strategically than just using pain pills. 

What was most helpful to me, besides the ice packs (do not use ice cubes.. too messy) was wearing my lumbar, velcro wrap. It holds and supports those aching, sore muscles. My surgeon said it was ok. It helped me get UP from sitting or laying down. I used it 24/7 for awhile. 

Also helps to WALK. Cannot lift certain amt of weight (surgeon will tell you) or exercise for 30 days. 

Just remember 1st week is a challenge and adjustment. But I started to feel so much better after 5 days, then after a couple of weeks, that I sent home my caretaker in less than a week. 

Again, we're here for you.

Ask any questions. I know it helped me to be so prepared before and after surgery.

Good to know that bugger was OUT!

Hugs, Jan

JimHarrison36502
Posts: 30
Joined: Dec 2017

Thanks guys!! Really great to get positive information.. Yes,,I feel so so blessed to have been diagnosed early. My radiologist happens to be my best friend.. We went to middle School together and on thru high school and joined the Marine Corps together. We've remained friends all these years and by him knowing my dad and actually he read my dad's original scans. . When I was positive for blood in my urine on a recent round of yearly labs at my family doctor. . He immediately got me to UAB in Birmingham, Al for scans on my kidneys. He found my tumor and came out with tears in his eyes.. I knew immediately it was bad news.  He said... Bro... It isn't as bad as you think... We've found it very early... But I want to scan your lungs just to be sure. So my lung scans came back clear and we were able to come up with a plan for surgery and really good prognosis. I do have some pain and have had some for the past few months. I feel really hot... And this has been going on for about the same time frame. Other than that.. No symptoms. I will keep everyone informed as time moves forward as I'm sure to have plenty of questions. My dad's prognosis was much worse.. but thankfully his situation kept me alert to me possibly having to deal with this some day. I was told at 50 years of age to start having scans. I made it to 46. I want to thank each of you for your kind words of encouragement and if I can help anyone in the future I'd be more than happy. Tell your friends.. I've got everyone I know wanting to get scanned. This thing is a silent killer and getting scanned is a life saver!! Merry Christmas to everyone!!

 

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

Jim,

 

Very impressed with the Medical School at UAB which I visited in 1978 and 1979.

 

 

Icemantoo

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

Okay - so the rubber is about to hit the road.  CT Scan tomorrow.  I've taken my first dose of what tastes like sewer in a tube (and get to again tonight and twice tomorrow.  Good times).  I had really calmed down some - I have some out of town friends here and that's helped keep my mind off of things...but with the scan knocking on the door, the obsession has returned.   I keep telling myself "3.3 cm...it's small...prognosis should be okay for no spreading..." but I can't get that spreading fear out of my head.  I guess that's normal.  I'm so glad this board is here so I can vent my fears to people that REALLY get it and understand.  Thanks!

 

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

The scan  prep is a joy. The test itself is nothing. After the test take a breath you have done all you can control. If it comes back you need some type of procedure you're given a game plan and that's what you concentrate on. I know how hard it is to keep your mind from running down every scenario that can bring you down. Try and focus on the positives. Sending positive thoughts for you and your family tomorrow.

 

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