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

Terry T
Terry T Member Posts: 42

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.  

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    GETTING TO THE HEAD OF THE LINE

    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
    db8ne1 Member Posts: 142 Member
    Try not to worry

    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
    Jojo61 Member Posts: 1,309 Member
    db8ne1 said:

    Try not to worry

    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

    It is okay to wait a bit

    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
    GSRon Member Posts: 1,303 Member
    db8ne1 said:

    Try not to worry

    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

    Ah yes...

    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

  • Srashedb
    Srashedb Member Posts: 482 Member
    Waiting

    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
    APny Member Posts: 1,995 Member
    I had an open partial about 2

    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!

  • Terry T
    Terry T Member Posts: 42
    GSRon said:

    Ah yes...

    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

    thanks to GSRon...

    ...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.  

  • aamdsi
    aamdsi Member Posts: 284
    Waited

    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
    foxhd Member Posts: 3,181 Member
    aamdsi said:

    Waited

    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.

    Mine was

    diagnosed on a saturday. Open nephrectomy on tuesday.

  • Vivaldi
    Vivaldi Member Posts: 27
    90% is not 100%

    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
    Galrim Member Posts: 307
    At that size...

    ...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
    Ree_Maryland Member Posts: 161 Member
    surgery

    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
    aamdsi Member Posts: 284
    So glad

    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
    Rangerk Member Posts: 8
    It depends

    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
    NewDay Member Posts: 272
    Rangerk said:

    It depends

    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.

    Surgery

    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
    Rangerk Member Posts: 8
    NewDay said:

    Surgery

    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

    The Doctors name

    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

  • todd121
    todd121 Member Posts: 1,448 Member
    Terry T said:

    thanks to GSRon...

    ...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.  

    Any update?

    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

  • Terry T
    Terry T Member Posts: 42
    Rangerk said:

    The Doctors name

    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

    update on my situation

    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
    aamdsi Member Posts: 284
    Terry T said:

    update on my situation

    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.

    so glad!

    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