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How long has it been since your kidney surgery? What stage were you? Any recurrences of cancer?

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

April 18, 2018

Hi:

1.  How long has it been since your kidney surgery?

     My husband's kidney removal was on Feb. 14, 2018.  So, around 2 months!

2.  What was your staging?  

     His was/is PT3.   (I never know if I say 'was' or 'is' when it comes to the staging)

     Tumor size: 5 cm.

3.  After you had your kidney removal surgery, did you go on chemotherapy or any other treatments?

      No

4.  Have you had any recurrances of cancer?  If so, what happened and how long after your kidney surgery?

     He hasn't been checked yet.

 

stub1969's picture
stub1969
Posts: 765
Joined: Jul 2016

1.  August 26, 2016

2.  Stage 1Tb  Chromophobe 5.3 cm greatest dimension

3.  No

4.  No

Stub

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

Excellent!  No recurrences for you!  

So lucky you caught it at Stage 1.

foroughsh's picture
foroughsh
Posts: 771
Joined: Oct 2014

1) August 2014

2)10 cm rcc, stage II

3)No

4)No

 

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

You are doing really well.  That's great news!

Wehavenotimeatall
Posts: 472
Joined: Aug 2017

1 Sept 2017 partial nephrectomy by Da Vinci.. four weeks after diagnosis right kidney

2 Stage 1b no grade Chromophobe RCC 4.4 cm greatest dimension ( I follow Stub in every thing I do)

3 No

4 No based on low risk screening done March 2018

6 six months on still struggling with fatigue and other wierd symptoms 

 

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

I'm glad you caught it early and no cancer returning.  One of the lucky ones!  

Hd67xlch's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

1.  How long has it been since your kidney surgery?

     2011

2.  What was your staging?  

     stage 1 grade 2

     Tumor size: 4.7cm

3.  After you had your kidney removal surgery, did you go on chemotherapy or any other treatments?

      no cancer drugs or any treatment

4.  Have you had any recurrances of cancer?  If so, what happened and how long after your kidney surgery?

     2016 right lung surgery lower lobe removal, 2017 left lung surgery to remove two mets in upper lobe, still no cancer drugs

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

Keep up the good work!   ...and here's to no more cancer!!!

Tapman63's picture
Tapman63
Posts: 134
Joined: Dec 2017

1.  How long has it been since your kidney surgery?

     Eight weeks - radical neph on 2/19/18

2.  What was your staging?  

    pT1a - tumor was 3.3 x3.4 cm

3.  After you had your kidney removal surgery, did you go on chemotherapy or any other treatments?

      no

4.  Have you had any recurrances of cancer?  If so, what happened and how long after your kidney surgery?

     Waiting on first scans and x-rays.  First chest x-ray is scheduled for the end of May

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

I'm hoping for all clear scans for you and no more cancer!

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

1. November 7, 2017

2. Stage 1 Grade 2 Clear Cell Renal Cell Carcenoma

3. No other treatment

4. Recently had 1st scans and all clear!

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

Excellent on the all clear scans!

cubsfan9
Posts: 66
Joined: Oct 2013

1.  Surgery:  November 2004

2.  Stage:  pT3b clear cell

3.  Treatment:  None until January 2013.  Began Sutent and have had a good response.  (Mostly stable!)

4.  Recurrances:  Large met to pancreas discovered in December 2012.  "Suspicious" lung nodes were never  biopsied, but presumed to be more mets as they responded to treatment.  Since then, enlarged messenteric lymph nodes which are also likely malignant. They have either remained stable or gotten smaller.  Scans tomorrow!!

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

I'm hoping for great results on your husband's scans tomorrow!

APny's picture
APny
Posts: 1902
Joined: Mar 2014

1. March 17, 2014

2. Stage 1 but grade 2-3

3. No treatment

4. So far so good. We're monitoring a couple of tiny lung nodules and I'm hoping they're nothing

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

I'm happy you are doing so well.  I hope for no more cancer in your future!

Deanie0916
Posts: 234
Joined: Nov 2016

Hi:

1.  How long has it been since your kidney surgery?

     My left kidney was removed on 8/30/2016 open nephrectomy.

2.  What was your staging?  

     Stage 3a

     Tumor size - 20 cm partially into renal vein

3.  After you had your kidney removal surgery, did you go on chemotherapy or any other treatments?

      No

4.  Have you had any recurrances of cancer?  If so, what happened and how long after your kidney surgery?

     I've had 2 CT scans with contrast, 2 ultrasounds and chest Xrays. no recurrence. Keeping an eye on a small cyst on right kidney, had some very small lung nodules no change.

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

Your answers give me hope!

Here's to no cancer returning!

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

Thanks everyone for your replies so far.  They have been helpful.

Steph85's picture
Steph85
Posts: 157
Joined: Feb 2018

1) January 22, 2018

2.) no chemo or anything 

3.) nothing so far! I had a bone scan which was clear. First set of scans in June. Day before my birthday, so they better be NED! It would be the best birthday gift ever! Haha! 

 I forgot- size was 3.3 cm, stage 1 grade 2 clear cell RCC

Stephanie 

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

I hope for all good results for you and no more cancer!!!

rhominator's picture
rhominator
Posts: 230
Joined: Nov 2015

1.  How long has it been since your kidney surgery?

     Over four years. :-)

2.  What was your staging?  

     Stage IV, cT2a, cN0, cM1 (bone met). Cell mRCC. 7 cm.

3.  After you had your kidney removal surgery, did you go on chemotherapy or any other treatments?

     Yes. Radition. Votrient, then Opdivo. Plus Xgeva.

4.  Have you had any recurrances of cancer?  If so, what happened and how long after your kidney surgery?

     Yes. New bone mets three years later.

Babygirl05's picture
Babygirl05
Posts: 42
Joined: Oct 2017

1. September 5, 2017 Open partial

2. Stage 1 Grade 2 Clear Cell Renal Cell Carcenoma

3. No other treatment

4. I've been scanned twice now and no cancer is visable!  Yay!  I am having issues with recurrent UTI's now though.  Trying to get it figured out.

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

1.  How long has it been since your kidney surgery?

     Radical right nephrectomy December 9, 2012.

2.  What was your staging?  

     At that time, Stage 3 Grade 3 (Stage 1 prior to surger, after pathology came back, it was Stage 3).

     Tumor size: 6.8cm

3.  After you had your kidney removal surgery, did you go on chemotherapy or any other treatments?

      I did a 1 year drug trial for Everolimus, but it turned out I was on the placebo, which I found out after being unblinded when I had a recurrence.

4.  Have you had any recurrances of cancer?  If so, what happened and how long after your kidney surgery?

     Two years later, recurrence to right adrenal gland (the same one that had been attached to my kidney). Had adrenalectomy in February 2015. Refused a second drug trial for Votrient vs Placebo. Staging changed to Stage 4 as a result of the recurrence. So far cancer free 3 years. Followup CT scans every 3 months for chest/abdomen/pelvis and blood work.

Bay Area Guy's picture
Bay Area Guy
Posts: 376
Joined: Jun 2016

June, 2016

Stage 1.....1.7 cm.....chromophobe.

No chemo or any other treatment.

Sixmonth and one year x-rays/CT scans were NED, so doc put me on annual scans for now.

JoeyZ's picture
JoeyZ
Posts: 191
Joined: Mar 2018

1.  How long has it been since your kidney surgery?

Radical right nephrectomy on March 8th - 6 weeks ago today.

 2.  What was your staging?  

Papillary Renal Cell Carcinoma, Type 2, Grade 3

Tumor Size: 10 cm

3.  After you had your kidney removal surgery, did you go on chemotherapy or any other treatments?

Yes, on April 5 this year I started Oral Chemo - Cabometyx, 60 mgs. per day. Just starting my 3rd week on it today. (Apr. 19th) Side effects are beginning to increase, but we are managing them thus far. Bloodwork says liver is fine to continue with this strength treatment. Mostly doing this as they were not sure if they got everything out of the liver, and the CT Scan with no contrast does not show organs clearly. Going to ask the Nephrologist about this tomorrow, if I can have a scan with dye or contrast just to see.

4.  Have you had any recurrances of cancer?  If so, what happened and how long after your kidney surgery?

None so far. Just had a CT Scan a month after surgery. Still have a lot of swollen lymph nodes in the chest, but no new tumors visible. Everything is what they call "Stable."

I guess there will be another scan in 3 months, as this is quite an aggressive cancer. Happy to be NED!! But we have to watch the lymphs carefully.

daisybud's picture
daisybud
Posts: 445
Joined: Jan 2016

1. Partial right robotic nephrectomy 2/2016

2. Stage 1 ,  grade 2

3.no

4.no

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

1. Radical left robotic nephrectomy Dec 5, 2017

2. Stage T2B (13.3 cm tumor) Grade 3

3. No other treatment waiting on ablation for new primary tumor 1.5 cm on remaining kidney

4. No metastases but new primary in right kidney. After ablation I will be NED

 

Cin

BoondockSaint's picture
BoondockSaint
Posts: 238
Joined: Mar 2017

Wife had partial neph in March of 2017

Stage 1 @ 3.5cm RCC

No additional drugs or treatment 

6 mo. Scan - NED

1yr Scan - NED

 

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

I'm really feeling down about it all.  I can't stop thinking about it.

My husband is such a good person.  I keep all my worrying to myself because I just want my husband to remain happy and positive.  I don't want to bring him down.

I think I've gone on too many sites and the information I read has just been so bad and it has really affected me.

The good comments above have helped.

rhominator's picture
rhominator
Posts: 230
Joined: Nov 2015

To boost your spirits, consider posting another survey/questionaire, something like, asking members what have they accomplished, done or enjoyed since their cancer diagnosis.

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

Smile

Arknut's picture
Arknut
Posts: 5
Joined: Mar 2018

1. Left partial neph March 22, 2018

2. Originally told stage 1-  tumor was 2.8- blessedly benign oncocytoma!

3/4. Just had another CT scan 4/18/2018 to check arteries- all clear! No additional followup needed. My surgeon was positive this was cancer. Just goes to show we are not in charge. Keep the faith, good news does happen!

 

schmadj18
Posts: 2
Joined: Apr 2018

1.  How long has it been since your kidney surgery?

     Robotic partial nephrectomy January 5 2018

2.  What was your staging?  

     Stage 1 Grade 3

     Tumor size: 4cm

3.  After you had your kidney removal surgery, did you go on chemotherapy or any other treatments?

      No

4.  Have you had any recurrances of cancer?  If so, what happened and how long after your kidney surgery?

       No   Follow up in May        

 

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

Surgery: 03/20/2017

Stage: 3 - 16.9cm chRCC

Other treatment: None so far

Recurrences: None so far

CRashster's picture
CRashster
Posts: 226
Joined: Mar 2017

May 2016

 

T3A

 

Nope

 

Nope.

lobbyist0724's picture
lobbyist0724
Posts: 376
Joined: Sep 2016

1. Sept 2, 2016 Open partial

2. Stage 1: pT1aNxMx 3.2 cm partially solid, partially cyst mass grade 2

3. No

4. No

jazzgirl's picture
jazzgirl
Posts: 125
Joined: Nov 2017

1.  July 27, 2016     Open partial nephrectomy right side (born with only right kidney)

2.  Staging:  pT1b   Renal cell carcinoma, clear cell type, ISUP grade 3; 4.7 cm

3.  No chemo or other treatments

4.  No recurrences.  Dec 2016 CT scan showed a weird cyst or something on the left side - In CT a month later nothing appeared.  It seems to fill and empty where the left kidney should have been.  A little primordial kidney?  I'm curious to see what they find (or not) this June.  One year scan NED.  Recent lab tests good; major scans coming up in June.

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

1.  How long has it been since your kidney surgery?

     March 29, 2018- laparoscopic right Hand assist (2 port holes, one 5-6 inch incision right lower abdomen)

2.  What was your staging?  

     T1b Papillary RCC Type 2

     Tumor size: 4.5 cm by 3.5 Right lower lobe- completely contained, no renal vein or artery involvement. Clear margins. No perinephric fat involvement.

3.  After you had your kidney removal surgery, did you go on chemotherapy or any other treatments?

      No

4.  Have you had any recurrances of cancer?  If so, what happened and how long after your kidney surgery?

no- Will be establishing with an oncologist next week for my future follow up

 

 

EK75
Posts: 6
Joined: Mar 2018

1. Robotic partial sept 2016

2. Stage 1A, Grade 2

3. No

4. No

icemantoo's picture
icemantoo
Posts: 3180
Joined: Jan 2010

1. Nephed, 8.01.02

2, 4,2 cm

3 and 4, NO

 

 

icemantoo

Trucker1's picture
Trucker1
Posts: 82
Joined: Sep 2017

PT1A- surgery Nov-14th/17-open left partial-12 inch strait scar

Grade 2- 1.9 cm- ccrcc

40 years old- My first and only Kidney stone so far led us to it!

Just had 6 months scan-CT of pelvis and abdominal area-NED

Xray of lungs- all look good..

No treatmention at this time.

Next scans September! !

 

 

Hoss79's picture
Hoss79
Posts: 78
Joined: Nov 2017

1. 11/6/17

2. PT1b, grade 3, 5.6 cm.

3. No.

4. No. Thank God!!

Rob57's picture
Rob57
Posts: 25
Joined: Aug 2016

1. May 2012

2. Stage 2 (7.1 cm) Grade 2-3

3. No treatment for the first 2 years. Tumor found in lymph node in my chest in June 2014. Biopsy was negative, however assumed it to be cancerous. Radiation in October 2014 to treat tumor.Tumor shrank significantly after treatment and has not had any activity since. Have been on Votrient since February 2015.

4. No change for the last  3 1/2 years. Full body (from pelvis to chest) CT scan last January showed nothing of concern. Colonoscopy last month showed clean, no problems.

donna_lee's picture
donna_lee
Posts: 883
Joined: Feb 2009

1. 11 years, 10 months...but who's counting, since the original surgery.

2. T2, N1, M1.  Tumor in Kidney was 12 1/2x 8 1/2 x 10 1/2; set of paracaval nodes behind it were positive for 2 of 11; left lobe of liver removed-positive mets; several wedge biopsied from right lobe that were negative; gongenitally defective bile duct and gall bladder removed at same time.

3. No treatment, as there was no suspected site that could be monitored.  (Mostly experimental or trial drugs only, avail. in 2006)  Just monitor with every 3 mo. CT's

4. Recurrences, Yes, 2.  Enlarging node found in CT in May of 2007; needle biopsy positive, remove on 7/3/2007.  And another node enlarging discovered in Late April 2008, positive on PET scan, and surgically removed in June of 2008.

5. Continue follow ups with CT's, finally stretched out to 6 mo and then yearly.  A couple of scares with thyroid enlargements, esophageal thickening, etc. and went back yo 6 mo CT's and am finally at yearly CT's with intervening 6 month visits and labs.

Click on user name for more Bio info.

Good luck and hugs....we all want this to be a very long lifetime experince.

donna_lee

Brock1969
Posts: 80
Joined: Jan 2018

Feb 26th....partial nec with robot

 

2 cm

 

No

 

Will have 6 month in September 

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

Thanks again everyone.  I read each and every comment.

I really appreciate all the responses.   They are helpful.

STC55's picture
STC55
Posts: 2
Joined: May 2018

1.  How long has it been since your kidney surgery?

April 16th, 2018 since my left kidney radical nephrectomy at City of Hope in Duarte CA

2.  What was your staging?  

 pT3A, N0, M0 - Pathology confirmed RCC, Clear Cell

 Tumor size: 10cm.

3.  After you had your kidney removal surgery, did you go on chemotherapy or any other treatments?

No, only one post surgery follow up so far with my doctor, he recommended potential immuno therapy consideration (if I'm eligible), going to 1st consult about that next week.

4.  Have you had any recurrances of cancer?  If so, what happened and how long after your kidney surgery?

No, too soon, however post surgery blood tests showed my Creatinine level back to normal (was very high) and GFR >60 (was 41)...so good indications so far.  Now researching about the immuno-therapy and post nephrectomy surveillance studies and recommendations.  Good information out there.  Keeping a journal of my findings. 

Manufred's picture
Manufred
Posts: 215
Joined: May 2017

Replying to STC55, I hope you have already found the Checkmate 214 trail which was recently published in the New England Journal of Medicine.  Check my profile on this site for details of my experience.

Fred

Bryn1108's picture
Bryn1108
Posts: 74
Joined: Jul 2017

1.  July 6, 2016. My left kidney radical nephrectomy 

2.  Tumor size-9 cm

3.  No

4.  No-  Praise the Lord 

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