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Urine test

Kathy1427's picture
Kathy1427
Posts: 6
Joined: Jul 2018

I am scheduled to have a partial nepherectomy at the end of the month for a stage 1, 3.7 cm tumor.  The tumor is located near the collection system but we are unsure if it is interfering with it.  I am experiencing painful swelling in my feet, hands and other joints.  My rheumatologist thinks the swelling is either Lupus or it’s my immune system responding to the cancer.  

I was fine with all of this until I met with an ob/gyn doctor last week.  He told me that he doesn’t understand why no one has tested my urine to see if I am passing cancer cells. He thinks this would tell us whether the cancer has metastasized into the collection system.  He is also concerned that I haven’t had any cardio work ups done to determine if the swelling is putting unnecessary pressure on my heart.  (My blood pressure was a bit high during my visit.) 

Are urine and heart testing a ”normal“ part of this that I somehow missed or is my doctor not as familiar with kidney cancer? 

icemantoo's picture
icemantoo
Posts: 3181
Joined: Jan 2010

Kathy,

 

Each doctor has theeir own specialty and experiences. Tey are still PRACTISING medicine. Until they get it right  each brings there own experience and perspective. The odds are against a 3.7 cm tumor spreading. Hopefully between the doctors they will do a full workup before the big day.

 

 

 

icemantoo

Kathy1427's picture
Kathy1427
Posts: 6
Joined: Jul 2018

The doctor said that he would not be in favor of a partial removal because there is a chance that the surgeon could leave behind cancer  cells unknowingly.  He said the risk is too high, so he’s not in favor of the partial.  He also thinks that a round of chemo may not be a bad thing in case there are cancer cell remaining.  This is what scared me.  

I admit that I am surprised that although I’ve had a lot of blood work, no one has tested the urine. 

Thanks for your response. 

icemantoo's picture
icemantoo
Posts: 3181
Joined: Jan 2010

Kathy,

 

In my day 16 years ago, partial  was not  an option. They just yanked the whole thing out. What type of doctor is giving you this advise? The dececion between the two should generally be made with your surgeon. It depends in part on the size and location of your tumor and the surgoens skill set. Sometimes the decision changes in the middle of the game. The risk of leaving behind cancer cells is always a possability and is weighed by the surgeon. A round of chemo sounds out of the box unless there appears to be some speading. Discus this with thesurgeon or Kidney Cancer specialist;

 

 

icemantoo

rdoyd2
Posts: 71
Joined: Aug 2016

I had all my joints aching all over. It was actually my joint pain that  caused me to switch docs and get diagnosed finaly. I had 11.7 cm chromophobe. I had head to tow bone scan all was clear. 9 months after my nepherctomy my jints stopped aching. My doc told me it was caused by my immune system attacking my joints due to the cancer. The cancer is sneaky and hides so the immune sytem cant find it but the immune system knows something is wrong and attacks your joints by mistake.I had high blood pressure before my neph and my bp has been below 120/80 since the day i had my neph. Partial nephrectomy is very common and safe now. I would seek another opinion. You want to save your kidney if you can.I only have one and a doing fine as are lots of people. Get a second opinion.

a_oaklee
Posts: 414
Joined: Nov 2013

Your rheumatologist and gynecologists are not the experts here.  Your urologist or urological oncologist have more knowledge and their opinion I believe is what you should be listening to.  Even then, you can get a second opinion from another urological surgeon.  In my opinion, if it's possible, always go with a partial removal.  You want to preserve as much healthy functioning kidney as possible.  During a surgery, a pathologist can check the margins of what is removed and let the surgeon know it is adequate.  It is also not uncommon to have some leg swelling.  My husband did also, and it went away after surgery.  Prior to surgery you should be having blood work and other tests to make sure you are healthy enough for surgery.  I have not heard of anyone having a urinalysis to check for tumor cells.  I have been reading posts for a long time and this is the first mention of it that I have seen.  You will find that there is antiquated thinking among some doctors regarding kidney cancer treatment and outcomes.  They may not be aware of how far we have come with new medications and treatments.  So just listen to the true specialists who know what they are talking about.  

Kathy1427's picture
Kathy1427
Posts: 6
Joined: Jul 2018

My joints swell, particularly in my feet.  My rheumatologist is hopeful that my immune system will reset itself once the cancer is removed so that it will stop attacking the joints.  I certainly hope so because the swollen joints make it difficult to perform daily functions.  

Thank you!

Kathy1427's picture
Kathy1427
Posts: 6
Joined: Jul 2018

You guys are awesome.  It is so nice to have a community to provide reassurance when this “process“ starts to get the best of us.   

Thank you! 

Bellafelice
Posts: 57
Joined: Sep 2008

Kathy, please check out Smart Patients-that group has given me immeasurable help in so many ways. The most important thing I learned from that group was the extreme necessity to consult with a kidney cancer specialist. If you check out Smart Patients and indicate what area you live in, people will give you recommendations as to the best kidney cancer specialists near you. I have heard the John Hopkins, MD ANDERSON, Mayo Clinic, Sloan Kettering, and Cleveland CLinic are all tops. But there are also other specialists in many other  hospitals people can refer you to.'

I cant agree more with the other posts encouraging you to get a second opinion to find out if there is a possibility of getting a partial nephrectomy. In terms of cells spreading even when the entire kidney is removed, cells can still spread(it happened to my husband).

Hope this infor helps and I wish you the very best of luck.

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