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Help. New and so confused.

Lexleigh
Posts: 2
Joined: May 2018

Good afternoon. I am hoping for advice from some people who are/have been in the same boat. Approx a year ago during a CT scan for something else, a small tumor was found on the bottom of my left kidney.  I was placed on "active surveillance" without much explanation.  I switched doctors because I could not get into see the original MD--long story.  An ultrasound and a MRI were done showing : an "8 mm soft tissue mass with peripheral thick rim enhancement off the lower pole of the left kidney anteriorly".  (Most likely renal cell carcinoma).  My new MD gave me three options (I am a 51 year old relatively healthy female)--continue active surveillance with utrasounds and CT scans every 6 mos., cryosurgery to freeze the tumor, or a partial nephrectomy (laparoscopic).  My doctor told me that the cryosurgery (freezing) was being found to possibly be as successful as the partial nephrectomy.  I went home to think about it and messaged my doctor with a few questions ( which I know he received ) and received  no response .  I am in the process of searching for a second opinion.  I want to choose the most effective treatment and get on with my life.  Any suggestions? Thank you!

icemantoo's picture
icemantoo
Posts: 3208
Joined: Jan 2010

Lex,

8mm is extremely small as far as possible Kidney Cancer. Make sure you are seeing a Urologist as this is not something you should discus options with a family doctor who is going to get his info from a Uro. And no there is not 1 right or wrong answer betwween active surveillance, cyro or a partial neph at this point. Get that second opinion.

 

icemantoo

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

You are in a “lucky” situation where you do have a few options and time to plan

Your situation makes me so angry that everyone was not running around waving red flags

 

However:

1) You really need a up to Date CT if your last one was a year ago:

2) You need a discussion with a experienced Urologist.. I would be cautious of the ablation unless your tumour has not grown any... yes it might work and prob does in a lot of cases but there are too many unknowns 

3) The six month CT scan also needs to be carefully considered as you do receive a  high dose of radiation 

4) The partial is a cure for  almost  all masses of your size (I won’t say all as I don’t know).  the op is no walk in the park but it puts you in control as you have the pathology to work with.. 

Bay Area Guy was in the same situation as you as well as a few others here

If they don’t pop by you can email them direct... Bay Area Guy is super helpful 

Keep us posted and we are always here

Annie

 

 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

I'm not a doctor, don't play one on TV, didn't stay at a Holiday Inn Express last night, but based on my own experience, I would opt for the partial nephrectomy (laparoscopic).

It's a time-proven approach. It is the most direct, effective attack  on this (most likely) cancer.

msjax
Posts: 20
Joined: Dec 2017

Hi Lexleigh,

I too was told there was no hurry ... the mass was small--only 1.7 cm--considered T1NxMx, so I took my time and waited a few months for a partial nephrectomy.  To my surprise, the pathology report upgraded the mass after surgery to T3aNxMx because the cancer extended into the perinephric fat--and the excised mass increased to 2.3 cm.  I agree with Abunai, opt for the partial nephrectomy and have the mass removed -- it probably is the best and most effective way to approach RCC.

Hope all goes well for you ~ best of luck!

Bay Area Guy's picture
Bay Area Guy
Posts: 384
Joined: Jun 2016

When my lesion was discovered, it was estimated to be 15 mm (1.5cm).  I was referred to a urologic oncologist who advised me to go the active surveillance route, as lesions that size are often not malignant.  So I alternated between ultrasounds and CT scans for about 2-1/2 years before an ultrasound determined that the lesion had grown, very slightly, to 17mm.  My doc said it was time for it to come out.  Like yours, my doctor offered ablation (I'm not sure if Stanford does cryo or RF) or a robotic partial.  He quoted me success rates of roughly 90% - 95% on the ablation (success meaning no return of the cancer within five years.....and that's the standard I understand they use for success rates of all treatments) while the surgery had a success rate of 98% - 99%.  He recommended the surgery, mainly because it got the pffending tissue out completely, whereas ablation simply kills the tissue, but it doesn't remove it.  The surgery took about 3 hours and I was in the hospital from 12 noon to 1:30PM the following day.....25-1/2 hours.  I had little to no post-op pain, other than a little pulling sensation at the incision sites.  But I also have a very high pain tolerance, so my experience may not be indicative of the norm.

But most defintely get yourself to a urologic oncologist, preferrably at a major university hospital as they seem to have all the latest and greatest gadgets for checking things out.

Lexleigh
Posts: 2
Joined: May 2018

Thank you all for your advice, you have actually been more helpful than my physician (he is a urologic oncologist).  I am in the process of getting a copy of my records and testing to take to another MD for a second opinion.  I am lucky in the fact I live in Cleveland, OH and there are two major teaching hospitals.  Unfortunately the one where my MD is (who I also worked for) has gotten so big and busy it is almost impossible to get timely appointments, and, again, as far as communications with your medical team it has become dismal.  I will be going to another major university hospital and if the same choices are given I am going to opt for the robotic partial.  Thank you all again for your help and support, I hold all of you in my thoughts and prayers.

Angiebby75's picture
Angiebby75
Posts: 190
Joined: Aug 2017

Yes, there is much support on this site. Make sure you comfortable with your doc is my best advice. Best wishes.

Allochka's picture
Allochka
Posts: 859
Joined: Nov 2014

Hi,

 

I'd choose partial nephrectomy also because it would give a chance to do proper pathology on removed tumor.

Good luck!

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