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Question about Size

MMondi1
Posts: 11
Joined: Jun 2013

Hello Everyone.  38 yo Male and a member of the club with a question about size. Seems my tumor was small 2.5 (Ct scan said 3.9). The pathology also said Stage 3a with renal sinus invasion and grade 3 (with the majority being grade 2.)

My doctors seem to be giving me conflicting information.  One is telling me that due to the size that my probability of return is low and that most Stage 3 tumors are much bigger, however my other doctor said I would be considered high risk and that the size doesnt really matter vs stage.  

  Also they are giving me conflicting folllow up schedules.  One is telling me every 3 months then 4 or 6 months  while the other is saying every 6 months for a year and then yearly.  Does Anyone have any thoughts on this?  Thanks 

 

 

 

icemantoo's picture
icemantoo
Posts: 1549
Joined: Jan 2010

Size and stage both matter although most emphasis is on size. As far as follow up there is nothing automatic or otherwise we would have a nurse order the follow up. Assuming both doctors are famikiar with Kidney Cancer the doctors rely on their experience and training and the new cases and studies which are constantly being debated. Drs. consult among their colleges as differenent or unusual cases come up. Doctors have honest differences of opinion among themselves/ You have to choose the Dr, to follow. You may want to ask about their experience and why they feel there approach is better, Sometimes the 2 doctors discussing your case between them may result in a consencious. As I said there are differences of opinion.

 

Icemantoo

 

Icemantoo

MMondi1
Posts: 11
Joined: Jun 2013

Thanks Icemantoo

 

I really think one is going off size while the other is going on stage. Obviously I would love to go with the one who is spacing these scans out and telling me Im at minimal risk but I also dont want to do anything I'll regret. 

growler9
Posts: 42
Joined: Oct 2011

Hi - MMondi1  Welcome. This may help you with staging. A 2.5 cm tumor by itself would be T1a, with renal sinus involvement it jumps to T3a. With renal vein involvement there is a chance that RCC cells have gotten into the blood system. Most likely not from a 2.5 cm tumor though. I had bi-lateral RCC, left kidney was 5.5 cm T3a Grade 3 and right kidney was 4.8 cm T1b Grade 2.

I had open partials 6/11 and 8/11. I had follow up CT's at 6 and 12 months and annually since. I am satisfied with that interval.

I should think that your cured but it's nice to get checked out occasionally!  Best wishes. Alan

MMondi1
Posts: 11
Joined: Jun 2013

Thanks growler.

Im still trying ot get my arms around everything.I went from celebrating the birth of my second son to dealing with this in 3 months. I want to be aggressive but dont want to create unwanted scanxiety if not needed.

GSRon's picture
GSRon
Posts: 1247
Joined: Jan 2013

Sometimes it is better to scan at 90 days..  I can't tell you which scheduile to use....  But, it is safer to scan at 90 days.. and it is especially good to get a scan soon as a baseline.  That makes it easier to spot anything.. or nothing.   Scans are darn painless, so why not..?   Besides you get good piece of mind when they come back all clear.!

Be Well

Ron

djc2
Posts: 17
Joined: Nov 2011

Like you, my initial CT scan result showed the tumor as larger than it was found to be.  I believe this happens frequently.  As Iceman has pointed out, size, stage and grade---and a lot of other things--- all matter and enter into the thinking about how to proceed after surgery.  My lab report said---1.8 CM, stage 1a, but grade 4 with 50% sarcomatoid.  I am told this is unusual, but everyone's case is unique.  I have been on 3 month CT scan checks for 1.5 years and am now going to a 6 month ultrasound, followed by a 6 month CT scan (iassuming the US shows no speard or reoccurance) since my doctor judges the threats from too much scanning to be greater now that I've had so many scans and the concommitant threat of reoccurance to be lower.  When questioned about my surveillance program, my doctor acknowledged there is no set program and that he is making his best judgement.  He went on to explain his thinking.  I explained some concerns I had about possible spread to my luings and we added a chest x-ray to the mix.    Questioning your doctor is good and understanding his thinking useful, not only to making the best decision for your physical health, but for for your peace of mind, as well, whcih is also important in maintaining your health.  It will also help you determine what you can do to help yourself.  Congratulations on a successful surgey and best wishes for continued success in maintaining your health! 

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

In my case there were different scan schedules proposed by my urologist and my oncologist.  My tumor which was removed on October 5, 2012 was 11 CM grade 3 Clear Cell with sinus and vascular invasion.  My Urologist ordered a chest scan for November 29th which was clear.  I had abdomen and pelvic scans on January 11th which were clear. My urologist ordered full scans for May 10th with and without contrast.  My Oncologist did not agree and proposed rescheduling the full scans for July 10th and if clear on 6 month intervals.  The oncologist’s reasons were essentially as follows.   1. The contrast dye is dangerous to the kidney of which I now only have one.  2.  Two months don’t matter that much.  3.  CT scans give you a huge dose a radiation.  The oncologist ordered more frequent blood tests to check on calcium levels and other markers.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

In my case my tumor was 4.5 cm (clear cell, T1b, Grade 3) in the lower lobe of the right kidney.  I had a radical nephrectomy (lap, hand assist) on May 14 this year. My follow-up regimen was, "Yeah, we got it all, and you are likely cured, but. . . we want to see you every three months with a chest x-ray and full blood work, and a CT scan every year."

Could you call that a mixed message?

She explained that based on my history of radiation (asinine radiation therapy in the 1950's for ringworm and my habit of playing with flouroscopes in shoe shops back in the early 50's-EVERYBODY did it LOL) CT scans would be used, but sparingly so not to risk causing leukemia.

In my case, I'm dancing with the one who brought me to the dance, but I'm keeping a weather eye for another partner if things start getting freaky.

I don't know if there's any wisdom in that, but thats how I'm handling it.  I am focusinmg on staying healthy, eating right, drinking lots, including water Wink, getting moderate exercise and laughing at every opportunity.  I do my best ot minimize strife and irritation, with limited success sometimes.  Decide who you're going to dance with and make it a happy relationship til it gets freaky.  You have to trust somebody!  Pax!

Michael

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