kidney cancer follow up

luke · New User Joined: 02 Jul 2005 Posts: 1

I was diagnosed with stage II kidney cancer. The tumor was a stage 3 on the furman scale. I had my kidney removed in Sept. 2004. Since then I have had no tests or x-rays. The doctor is sure that I am cured and have no need of any tests. I do see him from time to time because of prostate infection that I have not been able to get under control since the surgery. I have recently developed some pain on the surgery side that is different than the recovery type pain since the surgery. My doctor thinks it might be related to the prostate. He wants to do a PSA test as soon as the prostate swelling goes down. Do I need further tests or x-rays relating to the kidney cancer? If so, how often should I undergo testing and what kind of tests should I be requesting?

Bizzione · New User Joined: 21 Jul 2005 Posts: 8

Please, have not only PSA done but general blood test pannel and Cat Scan of the abdomen also. I am puzzled that after such a serious surgery your doctor does not feel more screening is needed. I totally disagree with him. Let us know!

ajacoby · New User Joined: 28 Jul 2005 Posts: 1

I was diagnosed in 2002 and had my right kidney removed. My Urologist did not recommend any follow up after the surgery however my primary care did. He recommended an abdominal CT scan with low contrast and a bone scan every 6 months for 3 years. He may have been over cautious however with those scans they have now picked up a liver legion (could be a cyst but will confirm soon). Recommend speaking with an oncologist for a course of follow up. Good luck.

trishpm · Posted: Tue Aug 09, 2005 11:39 am Post subject: Kidney cancer follow-up

You should have follow-up, and for the rest of your life. The exact type of followup and schedule will depend on your stage at diagnosis and length of time from sucessful treatment.

Kidney cancer has a nasty habit of sometimes coming back many years after all detectable cancer was removed through surgery. When there is a long time interval between the diagnosis and recurrence, the recurrence is often in one or two very localized places, and is very treatable, preferably by surgery, if found early. Kidney cancer doesn't respect the five years and you're cured rule. You should see a doctor who is experienced in treating kidney cancer patients to give you a surveillance plan; an MD can order the scans or ultrasounds.

Every kidney cancer patient should have at least chest x-rays at the time of diagnosis and as a follow-up because kidney cancer most often goes to the lungs, but can show up almost anywhere.

Anonymous · Guest

I am not very familiar with kidney cancer but I think you'll appreciate what my Dad went through with a surgeon who did not perform any follow-ups or treatments after my Dad's surgery for colon cancer in January. The surgeon was so confident that he had "gotten it all" , he felt it was unneccessary for any chemo, radiation, xrays, etc. Even though my Dad kept telling him he was very sick, the surgeon kept attributing it to something else (staph infection, pneumonia, whatever)
After Dad was rushed to emergency room 3 weeks ago, it was discovered that there had been ANOTHER tumor further up the colon tht had now grown so large it broke through the wall and is rampaging through his body. We brought Dad home 4 days ago with Hospice care to live out his final days.
My point is..DO NOT always trust the doctor!! Go with your instincts and go immediately to another doctor who specializes in kidney cancer.
I have learned enough about cancer to know that NO doctor should treat it nonchalantly. PLEASE seek a reputable specialist SOON

trishpm · Posted: Wed Aug 10, 2005 12:09 am Post subject: kidney cancer followup

You need to ask yourself if your doctor's advice makes sense. If it doesn't, get another opinion. Make sure troubling symptoms are thoroughly investigated and that there is objective evidence for the conclusion. My sister's thoracic surgeon thought her lung nodule was a fungal infection (without any testing) and wanted to wait four months for a repeat CAT scan to see if the nodule changed. She saw another doctor ASAP who had the nodule out within a week, and it was lung cancer. Had she waited the four months she might have had cancer in her nodes and a different life expectancy.

Kidney cancer is relatively rare (about 3% of all cancers) and many urologists who are first rate in treating prostate cancer have little experience in treating kidney cancer. It's essential to see a doctor who has experience in treating kidney cancer, or any specific cancer, expecially if it's a less common cancer.

There is an email support list specific to kidney cancer. See http://cancerguide.org/kofaq/ .

michelles · New User Joined: 11 May 2005 Posts: 7

I know this is a little late answer, I have not been on the board for a while.

I had renal cell cancer stage 1 and was cured by surgery. I was told by the urologist who did my surgery that I would be checked with CT and lung x-rays and a visit to him for the next 10 yrs.

My first CT and check up was at 6 months and was told will be yearly after that for next 10 yrs. I am now at year 3 still cancer free.

I would get a second and third opinion. Best to find one who is a urologist with specialty training in kidney cancer.

I found the AMA website to be helpful in picking my urologist, as you can locate a doctor then click his name and see what training they have recieved.

trishpm · Posted: Sun Oct 23, 2005 10:57 pm Post subject: Re: kidney cancer follow up

The Kidney Cancer Association (tel 800-850-9132) can tell you who is on their list of kidney cancer specialists. Some very good docs, however, are not on their list. The place that a urologist has trained is not the whole story; many urologists do not see many kidney cancer patients. Still fewer do laparascopic surgery or partial nephrectomies. Urologists who do transplants frequently have the skills for operating for kidney cancer.

A person who had early stage kidney cancer is likely not to have to deal with it again. Your doctor is better than many who will follow a patient for only five years and think that they are cured. However, kidney cancer, in a small number of people, has a nasty habit or returning many, many years after a cancerous kidney is removed. After you are 10 years out, you should continue to get checked at least every other year for life. When the cancer comes back many years after a nephrectomy, it is likely to show up in one or two tiny areas, and can usually be easily removed with surgery if found soon enough. Lung x-rays may not show small tumors that can be picked up on CT scan.

My sister is 10 1/2 years past her nephrectomy for Stage I kidney cancer and has no evidence of disease. She continues to be checked.

betsygirl1 · New User Joined: 25 Jun 2009 Posts: 2

Luke. I also had kidney cancer in 2004. They took my right kidney out. Every year I had a chest X ray. At 3 years , I had a cat scan, blood tests, X rays. Found nothing. At my 5 year check up, a tumor showed uo in my left kidney. Had a x ray, cat scan, MRI, blood work. I go in July 2nd. for a partial nephrectomy, to try and save my other kidney. My doctor won't even do the surgery. I am going to Cleveland Clinic. Please, please ,consult another doctor, or go to a specialist if your doctor won't listen. Early diagnosis is so important. You should be tested every year. Good luck and I hope all goes well.

betsygirl1 · New User Joined: 25 Jun 2009 Posts: 2

Sorry, I'm new to this. I didn't realize the post was from 2005. My mistake . I have to pay more attention. I hope everything has gone well from 2004 till now. Take care.

kenny1983uk · Regular Joined: 04 Aug 2009 Posts: 16

[quote="luke"]I was diagnosed with stage II kidney cancer. The tumor was a stage 3 on the furman scale. I had my kidney removed in Sept. 2004. Since then I have had no tests or x-rays. The doctor is sure that I am cured and have no need of any tests. I do see him from time to time because of prostate infection that I have not been able to get under control since the surgery. I have recently developed some pain on the surgery side that is different than the recovery type pain since the surgery. My doctor thinks it might be related to the prostate. He wants to do a PSA test as soon as the prostate swelling goes down. Do I need further tests or x-rays relating to the kidney cancer? If so, how often should I undergo testing and what kind of tests should I be requesting?[/quote]
en...where is our Luke? anyone knows?only 1 post and disappeared. hope hes doing alright!
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brainman · Posted: Tue Aug 04, 2009 7:56 am Post subject: Re: kidney cancer follow up

Yeah, guys... while it is OK to "resurrect" an old and possibly dead topic, as kenny pointed out, the originator of this topic only posted once not even responding to the replies he received at that time. I guess what I am saying is don't hold your breath Wink

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nneeuu · New User Joined: 11 Aug 2009 Posts: 1 Location: oregon

I wanted to thank the persons responding to this outdated posting even though the original post has not been followed up on officially. I currently am looking into information on this type of cancer as my mother in law was just diagnosed with a kidney cancer tumor and has been told by doctor that she may or may not be able to keep her kidney. I have found these replies to be the most helpful of information so far and it is very appreciated.

jesup · Posted: Sun Jan 17, 2010 6:14 pm Post subject: Re: kidney cancer follow up

Hi
I am on several kidney forum sites and I feel the more the better
the only challenge is that I am afraid of repeating myself.
I notice that most of the posts are dated in '09 or before so I am trying to get some conversation going here.
I am a 70 year old Florida resident who works part time and plays tennis and swims the rest of the time (in between my naps).
I had my left kidney removed 8/27/09 along with 4 lymph nodes because of papillary renal cell carcinoma.
because they removed "everything" there is no post op treatment except regular CT & Pet scans - which of course is not a preventative treatment
I started looking for others in my position because of the concern for recurrence and the lack of drug or chemo treatment as a preventative.
all I have found is confirmation (from other forums and second opinion at Johns Hopkins and internet searches) that the standard of treatment is simply watching and waiting.
in my case, there is a 25% chance I will remain cancer free (I used to say 75% chance of recurrence but I am now getting more positive) based on the fact that the cancer spread to the lymph nodes.
I would love to start a conversation on what is going on in other member's lives and compare our journey through this special universe of ours.

anyone out there?
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Rich

Mamagoat · New User Joined: 21 Apr 2008 Posts: 1

Hi, I am in the same boat with you. In May 09 a ct scan found a tumor on my right kidney. I am 54 and live in Indiana, To digress abit, In May of 07 my husband was dx'd with rectal cancer he was 57 at that time, We went to the Mayo clenic and they referred us to a surgeon at MD Anderson in Houston Texas It was a wonderful place, They do great work there, and I feel the experience of the surgeon is crutual in getting the best possible results, My husband was stage 3 with a high rate of recurrence, he had two surgery radiation and chemo and I am happy to report today is cancer free or I guess the term is NED almost 3 years.. this is wonderful. so when my tumor was discovered it was a no brainer we would once again return to MD Anderson, I had one of the top surgeons in this country for Kidney cancer so I truely felt I was in the best human hands possible, The rest is in God 's hands...My entire right kidney and adrenal gland and 8 lymph nodes were removed. I was staged at stage RCC 1b grade 2,, no other treatment at this time. CT scans every 6 months. There are not as many folks with kidney cancer (which is a good thing) but
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