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First two consultations with urological surgeon

thingone
Posts: 24
Joined: Feb 2019

 

 

I had consultation individually with two urological surgeons in past week on treatment for a mass in size 10x4x15mm at my left kidney. Both surgeons recomended three options as the same as what was recommended by another urological surgeon when I was with Kaiser, but I insisted to have a robotic partial nephrectomy to get the mass out of my body.  Before I make final decision whom I will go with for the surgery, I would like to ask a couple of questions here for help. One surgeon recommended a CT scan before the treatment as the last CT and MRI were done six month ago, but other surgeon did not recommend it. I am not fully understand a necessity for the CT scan and would like to ask if anyone else has similar experience. I was also told I would follow up quit often with the doctor whoever cuts the mass. I am wondering how often I should normally follow up with doctor in next six month, one year, two year,  and five years after surgery based on your case. I really appreciate your time and response in advance. Good luck to and best wishes for everyone here!             

icemantoo's picture
icemantoo
Posts: 3198
Joined: Jan 2010

There is no one right or wrong answer about wgether there should be a rescan after 6 months of active surveillance. Perhaps the rescan will show a change one way or the other. As far as scans after the doctor will give you a recommendation after the pathology. Given how small the mass is there is very little chance of it spreading. However by reason of having RCC in one kidney there is like a 2%  chance of it developing in the other kidney according to my surgeon. I am still running with a full spare almost 17 years after the big day.

 

 

 

icemantoo

thingone
Posts: 24
Joined: Feb 2019

Thank you for your advise to trust instincts without knowing why. I am expecting to have a surgery after this summer heat peak , probably on September Timeframe. Actuall, one  of surgeons told me a similar fact that recurranc for a small mass is quite rare after surgery. 

jroco's picture
jroco
Posts: 16
Joined: Mar 2019

 

thinggone, my situation was similar but different as i was on active surveillance for a 1.3 CM tumor for 8 months. I had a follow up CT and it showed a growth of only 2mm. I had decided regardless of growth or results it was coming out. I’m of the understanding that even benign tumors will grow. It took 4 months from follow up CT until surgery because of 1 cancellation and avalability of machine. He says 85 % chance cancer so thats good enough for me. I just had mine taken out via robtic parital neph and i will say no big deal at all. Note, im 51 resonably healthy. Were is your tumor located? Mine was located in my lower left lobe posterior. My surgeon was able to do a robotic retroperitoneal partial neph because of its size and location. So apparently this procedure is above and beyond more complicated than what most surgeons would do which is a robotic transperitoneal partial neph. In my case no moving of organs to get to mass, less muscle involvment meaning less complications ect. I was up walking the hall within 6 hours. No pain meds given once in the room, only Tylenol. Walked out to the car with the wife the next day. I will say I had some muscle cramping all over for a day once I got home which they said was from a kind of anesthesia they gave me to relax muscles. Still only Tylenol once home.  Five days out I was mowing the lawn and 10 days out today im going camping. To play on the safe side I do have people help me lift stuff. Today just some itching.  I find out this Tuesday what I have. I can send you pics of my scars if your curious. Good luck on your procedure.

 

thingone
Posts: 24
Joined: Feb 2019

Hello Jroco, Thank you very much for your time sharing and helping me out. Basically I was diagnosed with a solid-appearing enhancing left renal mass and a simple cyst nearby in CT and MRI on end of last year. The reported renal mass size is 10x4 mm located, and what I measured is 10x4x15 mm. The mass is peripheral and locates at upper midpole with most part exophytic ( about 75% of the mass appears to be outside of the kidney). One of urology oncologists told me it has 80% chance to be cancer, but another one said 50% chance benign. Anyway only pathology report after surgery can tell the truth. Thank you for telling me that you got robotic retroperitoneal partial neph because of its size and location without moving of organs and too much muscle involvement to get to mass. I may check with my surgeon what technology could be applicable to me, robotic retroperitoneal or transperitoneal partial neph. I am so impressed by your post-surgery recovery, which gives me a lot hope, although I can not expect the same outcome on my case. By the way, I am curious on the picture of scars. How many puncture holes? and what are their sizes? Thank you for offering. I hope each new day brings you closer to a full and speedy recovery!

jroco's picture
jroco
Posts: 16
Joined: Mar 2019

I was kind of wondering the same thing that you are because I am 4 months out from my last CT and a year out from a chest x-ray. He told me that my next one would be 6 months from now. I guess that could change if I have a high-grade tumor

mukhopadhyay.arka01
Posts: 32
Joined: May 2019

Too much tests are bad for your health! People keep on telling you -- but I have always find being cautious helps you to find stuff when you are not expecting them

in my case when i was diagnosed with a small tumour of 2 cm approx, I had brain scan,whole body bone scan and abdominal scan to rule out any metastatis!

Then I had my left radical nephrectomy and after that I was checked 3 months later with blood test and another scan in abdomen

My yearly checks followed --which included abdominal MRI and sometimes a chest x ray

Sometimes I panicked and had a Bone scan which was not needed at all

 

After 5 years the abdominal scan was reduced to 2 years -- but they found a mass in my right kidney now and awaiting Doctors advice on how to go ahead with that

 

thingone
Posts: 24
Joined: Feb 2019

I am very sorry that there is a new mass found in your right kidney after 5 years, but it alway has 20% chance to be gentle. I am curious what your pathology result was for the first mass in your left kidney? My doctor told me that the my small kidney mass could be caused by many risk factors including radiation, but it must started a few years ago. I hope things go well for you today and down the road.

 

Yes. I agree with you that too much tests are bad for your health, especially for CT. I understand that the CT scan before surgery can provide some meaningful information. But I am wondering if or not there is any chance that this scan may change my mind. May it have any positive impact to the coming survery and the procedure of the follow-ups?

mukhopadhyay.arka01
Posts: 32
Joined: May 2019

The mass is back now after almost 8 years but I think it started growing after 6 years itself and was not diagnosed

I had less than 2.5 cm right kidney tumour and the pathological reports were great--clear cell carcinoma but reports suggested Fuhrman grade 1 and also cells have not transformed much also

The doctors said this is the best of the best you can have --but here I am!! :(

 

thingone
Posts: 24
Joined: Feb 2019

Here is an update on my follow up scan and a surprise I got from a recent ultrasound scan.

I decided to keep my ultrasound appointment that was ordered 4 months agao but not go through CT/MRI before the anticipaed surgery on September. My doctor said he did not think a repeat CT/MRI scan was mandatory as these tumors grow slowly and even a small amount of interval growth would not change the approach.

I got the ultrasound scan this Monday and was surprised by the ultrasound sonographer who was struggling to identify a solid renal mass that was identified at a size of 10x4x15 mm by CT/MRI seven months ago. The sonographer  was so nice and diligent. She tried many times and even went out to double check the CT/MRI images. She finally told me the US images were so blurred and she was not sure on what she saw. The final report indicates, “7 mm left midpole exophytic solid renal lesion, likely corresponds to the finding on recent MRI. Follow-up is recommended”. I understand US is not as accurate as CT/MRI but never know US may not be adequate as a technology to follow up some renal masses like mine. Did anyone here have similar experience like this?  Thanks.

 

daisybud's picture
daisybud
Posts: 452
Joined: Jan 2016

On US either.  I am leery about them but don't have a choice. Had US first due to pain, nothing seen.  Pain continued had ct because thought it was a bad gallbladder.  Nothing wrong with gallbladder but found the tumor. So, I'm not sold on ultrasounds. 

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