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2 months between diagnosis and surgery...too long?

Terry T
Posts: 42
Joined: Jun 2014

Hi all - My back doctor found a 3.9cm mass on my right kidney and the CT Scan suggested it was something to look into.  Received 2 very different opinions from the urologists - one said laparoscopic and the other said it could only be done open.  So I got a 3rd opinion and am going with the laparoscopic approach but now the surgeon can't fit me until the end of June - making it 2 months since the diagnosis.  I can't tell if it is "in my head" but I feel more pain now and am concerned about having to wait that long (though now it is just 2 weeks away).

Just wondering how long others have generally waited between diagnosis and surgery.  My stats from 2 oncologists and 3 urologists are:

 ~90% sure it is cancer; >95% sure it has not spread and almost 100% certain the whole kidney has to go b/c the tumor is right in the middle of the kidney.

 

Thoughts?  Thanks all.  

icemantoo's picture
icemantoo
Posts: 3217
Joined: Jan 2010

Terry,

 

One way to get to the head of the line is to have a more  serious diagnosis where mets are in play. On second thought let somebody else take cuts. Sounds like my situation and wait 12 yeas ago. So far your stats sound similar to mine and many others, No way to sugar coat the surgery, but it does beat the alternative. Read about the recoveries from those of is who preceeded you. So far the heavy stuff of mets, recurrance, medications and treatments remain unlikely.

 

 

Icemantoo

db8ne1's picture
db8ne1
Posts: 141
Joined: Feb 2013

I know...easier said than done!

My doc's have been watching a tumor on my left kidney for over a year.  My urologist initially told me that since it was small we could "wait and see" - since I had "bigger fish to fry" - that being I spent all of 2013 getting treatment and surgery for Stage 3 colorectal cancer. (Chemo/radiation Jan-Feb, then surgery in April, then follow up 6 months of FOLFOX chemo, May-Sept).

My last CT in early May showed the tumor on my kidney continuing to grow.  It's still relatively small (less than 4 cm), but since it has grown between each of my 3 CT's over more than a year, its time to come out.  My research show the average growth per year is anywhwere from 0.3 - 1.0 cms.  Mine's grown 1.0 in a year.

I asked my urologist what he would do in my situation, and he said, "I'd go to Mayo".  Since that's not happening, and since my urologist only does open procedures, he indicated I might want to check out the laparoscopic procedures offered at another major hospital.  So, I did.  I'm having a DaVinci robotic partial nephrectomey on 7/8. 

Stats show, given that your mass is under 4 cm, is that per the CT scan, its probably 95% chance of cancer, and little chance for mets at this stage.  Plus, the prognosis is really good that surgery alone will take care of the issue. Of course, this is medicine, everyone's different, and there are never any guarantees.  The good news is no chemo or any other treatment is usually needed for a kidney mass at this size/stage.

Best wishes for a successful operation - and a speedy recovery.

Keep us posted!

J

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I was diagnosed in October and had my kidney removed in December. My tumor was 13 cm, stage 3.....now I believe that was pushing it, but it all turned out great.

I know everyone panics....I kept having people ask me "why are they waiting so long?" I live in Canada, our patient:doctor ratio is not great. But I was lucky to have been referred to a super star doctor who was able to still remove it via laprascopy...part of the reason for the longer wait. Kidney cancer is a little different than other cancers...it usually stays contained in the kidney. Good luck and keep us posted!

Hugs

Jojo

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Terry, yes the waiting is the hardest part..  It will play with your mind.  The reality is not as bad as you think.  Seems like folks around here have had both Lap or Open for small tumors and both work just fine.  And sometimes a Lap ends up being an open, depending on location of the tumor.  As a hint, there is pain post surgery... as soon as you start to feel any slight pain, call for drugs..!  Do not wait.. or you will not be happy.  The pain can come on a lot faster than the drugs kick in..  Next, they will try to get you to walk ASAP, the sonner you get up and walk (shuffle your feet) the sooner you get to go home.  And of course the all important first bowel movement..  Trust us, it is not that bad, and you will feel relieved that bugger is gone..!

Holler back at us any time...

Ron

Terry T
Posts: 42
Joined: Jun 2014

...and all of you who have commented.  I am sure ai am just getting anxious.  Just would hate to be fiddling while Rome is burning but i am sure it would not have grown ...nor metastasized is 8 weeks’ time.  

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Are you still scheduled further out than you'd like? How are you doing?

I agree with what others have said, particularly Galrim. It may not be cancer, but they are pretty good at telling that from the CT in most cases. The biggest danger is if it's got invasion into the blood supply, which is more likely to happen if it's in the center of the kidney than in the far upper/lower poles. The other is if it's a particularly aggressive form. Most likely if it's the typical type of RCC (clear cell) and one of the less aggressive types, (1-3 even), then they are very slow growing and waiting a couple of months isn't going to matter much.

However, if you experience more pain or bleeding, you might get them to move it up by complaining about that. If you are having heavy bleeding or pain, you need to communicate with them regularly. My bleeding stopped and didn't return between my diagnosis and nephrectomy.

Hope all is well with you and hope that it will turn out to be something benign.

Todd

Srashedb
Posts: 482
Joined: Dec 2013

my husband was dx with stage 4 on July 2 and had laproscopic nephrectomy on 9/20.

he had laminectomy and radiation, both adjuvant for the laminectomy and cyber for the second lesion Before the nephrectomy.

he spent 16 days and lost 25 pounds with intestinal obstruction courtesy of the strong narcotics.

i was freaking out about the delay but the primary and second lesion did not grow in the interim. His renal tumour was in the upper pole and 10 cm; it was done in under 90 minutes. This procedure is more about the surgeon's comfort and location of the tumor. He also had adrenal gland removed and there was no cancer there. All 3 scans for the last 9 months have been clean.

Sarah

APny's picture
APny
Posts: 1946
Joined: Mar 2014

I had an open partial about 2 months after diagnosis. My surgeon only does open, and while the tumor was midpole, his expertise is in partial nephrectomy so that's what I had. They had me out of bed and walking the night of the surgery and while it was no picknic, it wasn't as painful or horrible as I had feared either. I went home two days later and had what I consider a fairly easy recovery. I took pain killers every 4 hours for about 7 days, then one every 6 hours for 3 more. After 10 days I didn't need anything stronger than a Tylanol. Good luck to you and try to get up and walkin as soon as possible and drink a lot of water!

aamdsi
Posts: 284
Joined: Apr 2014

About 6 weeks from diagnosis to surgery. I had a open partial in March.  Was up and "moving" the next morning (had mine early afternoon) and although spent 5 days in hospital, was off all meds on the 6th day.  It was the reaction to the heavy meds that kept me in there - once they finally beleived me and took them away - life was good. 

And now 3.5 months post-op, life has returned to "normal" for the most part. 

So, now you are 2 weeks out.  Start buying some books, get your TV/netfliks shows in order, and try to think of something else.  Soon you'll be on the "otherside" of it and can start "living" again.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

diagnosed on a saturday. Open nephrectomy on tuesday.

Vivaldi
Posts: 27
Joined: Jun 2013

I still read this site and respond occasionally.  Your docs are ninety percent certain it is cancer.  So were mine and my urologist is a superstar who specializes in oncology and a professor too.  I waited four months from diagnosis to surgery for his schedule just because he is the best.  i even have a family history of kidney cancer, my dad and my grandad. My tumour was an oncocytoma.  So keep that possibility in mind, it does happen.  I was so stunned when the pathology came in, from finding it to getting the results it was six months total.  This site kept me sane, so whatever it turns out to be, and I am hoping for oncocytoma for you too, the kindness of this family will carry you through.

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

...waiting a bit most likely wont influence your future prognosis (assuming it IS RCC).

The only risk in increased waiting time with that tumor size is if its a particular agressive subtype or grade. One other thing that could argue for a speedy surgtery is if theres macroscopic renal vein invasion, or it close to happening (your descrition about the central kidney location made me consider this). But if that was the case your onc/urologist would/should have informed you about it.

/G

Ree_Maryland's picture
Ree_Maryland
Posts: 157
Joined: May 2014

2014-07-06 I found out I had kidney cancer on March 4th , had surgery on April 21st .laposcopic right kidney ,the tumor was in the middle so the kidney was removed . so far so good . Next ct August 8th . 

aamdsi
Posts: 284
Joined: Apr 2014

You're doing well.  Everyday will be a bit better than the one before 8-). Just keep moving.

Now enjoy your summer - you've earned it. 

Laurie

Rangerk's picture
Rangerk
Posts: 8
Joined: Jul 2014

One of the issues with scheduling my surgery was how busy the Atlanta area urologists are. My pain mangement issues moved surgery up after a 06/01 diagnosis to 06/24 instead of Mid-July.

i would be more concerned finding the right surgeon and not rushing it. I rolled a lucky pair of medical provider dice as the the opening in the group of urologists was a doctor who had a plan of action, top notch nursing staff and had the skill to perform everything fronm a radical nephrectomy to the Da Vinci robotic surgery I had.

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Rangerk,

Who are you having do your surgery?  I've already had mine.  I'm just curioius.  I live in Athens and work in Atlanta.

Kathy

Rangerk's picture
Rangerk
Posts: 8
Joined: Jul 2014

Dr. Froylan Gonzalez with the a Georgia Urology Group did my surgery. His speciality isrobotic surgery. The surgery lasted 4 and 1/2 hours on June 24th, saving 70% of my left kidney and also involved removal of my left adrenal gland.

 

How has your recovery been going?

 

Thanks, Rangerk

Terry T
Posts: 42
Joined: Jun 2014

Hi all -

Thanks for all your notes.  I had my right kidney removed on 30 June (they could not spare it) and, 3 weeks out, I am back to work 1/2 time and walking about 6 - 7,000 steps a day.  Results were a Stage 1; grade 2 tumor and I will find out the scan schedule on Wednesday when i meet with the surgeon.  Overall, I get tired very easy, still have a moderate amount of pain (but no more pain meds!) and am feeling positive!  With the laparscopic approach, the incisions were minimal and recovery is so much faster.

aamdsi
Posts: 284
Joined: Apr 2014

That all went well and that you are up and moving forward.

Am sorry they couldn't save the kidney, but you are on the mend that's what counts 8-)  YAY on getting off the pain meds too. 

Everything esle will come back with time, just take it easy and work toward the endurance and stregthening part slowly. 

Now go enjoy your summer!  You have earned it

 

Laurie

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