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Advice NEEDED

Katielynn
Posts: 61
Joined: Apr 2011

I desparately need some advice from others who've had a nephrectomy. As a lot of you already know, my nephrectomy was done 6/2/2011. At my 2 wk. follow-up with my urologist, I was told, "see you in a year". My nodes were good, and he said I shouldn't worry, as the whole kidney was removed. My primary care doctor has been following up on bloodwork, urinalysis....He wants me to have a CT without contrast (so it will be easier on my reamining kidney) I mentioned a few weeks ago I was changing urologists. I made the apt, which was supposed to be this Monday. Well, Fri afternoon I get a call from the new DR's office telling me he's not accepting new pts. who've already had surgery!!!!!!!!! I said it's nice to tell me this 3 days before my apt. I guess I just mainly have a problem with my original urologist's bedside manner. He's extremely cold and I just don't like his personality. My family differs with me in saying he performed surgery well, I recovered well, and basically they feel he did a good job. Ugh, I am just wondering how soon everyone else had a scan to check up on things. They did say there was a cyst on my right kidney, well, that's what they called the "mass" on the left that ended up being removed. I also have an apt. in Dec with a nephrologist. I'd love some feedback on what others have had done post neph. and I guess a timeline as to when they were done. Thanks in advance for all your help and info.... God Bless

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Katielynn,

I'm 12 days shy of two years post op. and my experience with doctors through it all has been very positive. That said, if I had ever felt or if I ever feel uncomfortable with a doctor for any reason I would not hesitate to change. A doctor's bedside manner can help build or destroy the positive attitude we require in this fight, you can't be left to feel like its no big deal. Its just my opinion but if I had a cyst or any question mark I would want at least a ct every 6 mos., I've seen posts here from people that have them every 3 mos. I had chest x-ray and ct (with contrast) at 6 mos. and one year, all clear. Following my first annual tests my Dr. suggested switching to annual checkups which he indicated was not the normal (every 6 mos. for 5 yrs) process. He said that because my pathology report had been very good and there was absolutely no evidence of anything else going on, that the additional effects of radiation and contrast were not warranted. My second annual is early next month and I've had no anxiety the past 11 mos. mostly because my Dr. has such a positive attitude and I trust him. I'd keep looking until I found a Dr. I liked.

My 2 cents,

Gary

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Katie,
My radical nephrectomy was Aug. 19, 2010. I was Stage T1A. I've since had two 6-month follow-ups visits with my urologist. I had the usual blood work, urinalysis and lung x-rays for each visit. (I also have been seeing a nephrologist every three months since last April who also orders blood tests and urinalysis and after my first visit, an ultrasound of my remaining kidney). During my last visit to the urologist he told me to come back in a year. On my first 6-month visit he had told me that the time would come when I would have to have a CT scan (with contrast) of my remaining kidney. He didn't feel it was necessary for me to see an oncologist although he offered a referral if I wanted one. I also had a bone scan done soon after surgery for another reason.
I thought my urologist was a bit cold at first, but I've come to like and trust him.
Best wishes for good health,
Mike

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hi KatieLynn

When I first met my Doctor, I wasn't 100% sure about him. But, he certainly has grown on me. I wouldn't hesitate to pick up
The phone if I had a question. I do challenge him, and I ask LOTS of questions. He is a very confident person, and that can sometimes
be taken the wrong way. I do not agree with you being followed up in a year, that is too long! For two years I've had appts every 3-4 months. CT Scan. Chest xray/labs, CT Scan, chest xray/ labs. I've had one MRI one year after my surgery. I've graduated to every 6 month now. I believe he said this will go on until I reach the 5 year mark. Then it's annual exams. Please find another Doctor, or at least will your primary Doctor order the CT Scan? I believe the Radiologist reads the report, so he could just give it to your primary.

Be your own advocate! You deserve nothing but the best.
Take Care
Valerie

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

Katielynn -

For what it's worth, I am not seeing a urologist for my follow-up care, but an oncologist. I'm 43 and had my surgery in July. I had a 2.5cm T1a tumor, Fuhrman grade 3. My urologist who did the surgery was wonderful. He maintains follow-up for a lot of his kidney cancer patients, but in my case (youth + aggressive cells) he wanted an oncologist in charge going forward. He told me he's a plumber and now I need an electrician. :)

So, the oncologist has me doing a contrast CT and labs every 3 months for the first year. My first scan is next week. At least for now, I would rather err on the side of caution. If I ever do have a recurrence, I want it to be found as early as possible. Of course, they will adjust contrast, etc to be gentle on my kidney.

Good luck and keep us posted!

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