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Continued Pain and Infections 1 year Partial Nephrectomy

rbirdie
Posts: 12
Joined: Jan 2014

Hello,

I am really hoping that someone can please offer any assistance. I had a partial nephrectomy (laproscopic) almost a year ago for clear renal cell  in my left kidney. I had a 3cm tumor. I have had pain ever since the surgery. It is a constant dull ache in my side and back. I have also had 3 kidney infections where the pain is intense. They have all come back as Strep b infections. The first one was 3 weeks after my surgery. I have one now - it is 11 months after surgery. I have had huge bruise marks where my kidney is located when I get the infections. This past infection, I was showing large amounts of blood in my urine and a white count thru the roof. you could not even touch my kidney because of the pain. I went to the hospital they put me on IV antibiotics. 

My surgeon chalks it up to "a simple uti" he tends to lean on the kidney cancer is a simple cancer that is not such a big deal. He told me I didnt need an oncologist , I didnt need bloodwork follow up, and that I only need an ultrasound at my 6 month and then annual ckup because it has a low reoccurance rate. Meanwhile I have constant pain, infections, and feel sick all the time.

I am trying to get into another dr, but it is not easy to get another dr to pick up where one surgeon left off. 

My question is - does anyone else have pain and infections like this??? 

 

 

icemantoo's picture
icemantoo
Posts: 3336
Joined: Jan 2010

rbirdie,

It sounds like your surgeon's only focus is on the Kidney Cancer and the Kidney Cancer is probably not the issue. I would suggest you also consult with another Urologist, not necessatily a kidney cancer specialist, a nephrologist or at least a GP. The symptoms you descibe are not typical of Kidney Cancer after such a long period of time nor of the surgery. Although you may be tender at the incision site a year later the pain you describe is something more than that. These are my thoughts and should NOT in any way be taken as a substitute for you seeking a medical opinion.

 

Icemantoo

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Birdie, 

I can't imagine what you are going through, with reoccurring infections the kidney will be struggling to heal properly. I am surprised your surgeon regards this as a simple UTI, as the infection seems ongoing, it would appear the antibiotics are not effective enough to completely address the problem. If I were you I would definately push to see an Oncologist anyway, one that specialises in Kidney Cancer. I learned to my cost not to to be swayed on that one. I was constantly told I didn't need an Oncologist, when the exact opposite was found to be true. 

In any event if I were in your shoes I would definately seek a second opinion. My cancer was considered run of the mill but things can become more complex in a heartbeat. This may not be a big deal to the Surgeon, but remember when things go wrong they are left with a fleeting look of surprise, you are left with the long term consequences.

I sincerely hope you can find help with this so you can heal well, and be in the comfort you so deserve. You have been through enough trauma already.

 

Djinnie x

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

You do not say where you are.. but if it were me, I would run to a different doctor.  Partials can be tricky and perhaps there is an unresolved issue.  This is going on far too long to pass off...

Good Luck..

Ron

rbirdie
Posts: 12
Joined: Jan 2014

Thank you all for you replies. I am in CT. I have been to my GP regarding the issues. She too is frustrated with my Urologist/Surgeon. We are working to try and get me into another DR. I cannot believe that this is normal. I am frustrated having this pain all the time. I understand my body needs to heal, but I really feel something is not right. 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Birdie,

You can't believe this is normal because it is not! When your gut tells you something it is right to trust it. I am so glad to hear your GP is working with you to find another Doctor. Let us know how you get on, and don't despair once you have the right Doctor on board things will look much better.

 

Djinnie x

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

If you have read any of my posts from 3 years ago, you will find that I consider Yale to be a very special place. Several other oncologists and facilities told me I was going to die. Yale/New Haven/Smilow cancer hospital saved my life. It would be worth the trip. IMHO.

rbirdie
Posts: 12
Joined: Jan 2014

It was not Yale that I have been going to for my follow up. I didn't go there for my surgery either (Norwalk). The doctor I wanted to go to within Yale was booked for months, because they are that good.

The doctor I am currently working to get into works with Yale/Bridgeport hospitals. They are all connected now. They are part of Smilow also. Thank you for the heads up though!!!

 

I am finding that a good doctor is hard to come by. 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

rbirdie, if it is not too far for you to travel, consider Dr. Paul Russo at Memorial Sloan Kettering in NYC.  I had an open partial nephrectomy performed by Dr. Russo in July of this year, and he is superb.  And MSKCC is superb too.  APny on this forum also went to him, and I think she will agree with me. 

rbirdie
Posts: 12
Joined: Jan 2014

Thank you for the heads up. I will look into them - I am hoping to find some answers soon. I really appreciate the support everyone!!!!!

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Totally agree with Dr. Russo. I would definitely contact him and set up an appointment. Wishing you the best, rbirdie!

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

You need another opinion. It should come from someone unrelated to your first urologist and hopefully someone with some guts to take a good look at what's been done without shying away from finding a problem with what was done.

I have a friend that had a partial that had an ongoing problem with it for a year. His first urologist was unwilling to admit there was a problem. He found another urologist that took care of the problem. Partials are tricky.

I don't think you should be having these problems this far out. Hope you can find another good urologist to give you an opinion. I'd even see a third if you continue to have problems and neither one is helping you. Try and get the opinions from unrelated docs if you can. (2 of my opinions when I was researching getting adjuvant therapy in a study were from doctors where one had trained the other one. Fortunately, they disagreed with each other, so I didn't worry about them being so closely related.)

It might help to get the appointment by not stating you think there's a problem with what was done by the first doc. Instead phrase it in terms of your ongoing problem and that it's not getting solved. Docs can be touchy about patients that quickly point the finger at the doc. I'm not suggesting you lie, just that you stick to your issue of what's wrong. If they ask why you aren't seeing your other doctor, then you can say you've seen him X times and the problem isn't getting resolved. Leave it at that. Let the other doctor do the blaming (or not). The important thing is not blaming the first doctor, the important thing is getting you fixed! Keep that in mind. I think if your focus is that way, it will help you get it taken care of.

Best wishes to you.

Todd

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Be careful to pick someone with good experience with partials. You want someone better than the first doctor (or at least as good) with regards to doing partial nephrectomies. I say this because there are quite a few urologists out there that don't do partials at all. It would probably not do you much good to see one of those docs. You want someone experienced with the possible problems associated with partials.

Todd

rbirdie
Posts: 12
Joined: Jan 2014

I did see another doctor. 

First I have an ongoing kidney infection that Ihave been on antibiotics for 7 weeks now. 

Second, apparantly there were things in my pathology report that were not gone over with me. I have postive margins and the location of my tumor was not in a great place. there is a great concern that there is still cancer. We are planning a ct scan after I finish antibiotics. 

Very mad at myself and prior doctor.

Thank you for advice. 

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