Need some direction

Three weeks ago I underwent an open right partial nephrectomy for suspected kidney cancer.  I also showed a tumor on each adrenal gland so they went ahead and removed the right adrenal gland at the time of the nephrectomy.

The adrenal tumor was 5 X 4 cm and showed to be an adrenocortical adenoma.  Much to everyone's surprise the kidney tumor also came back benign.  A big surgery for nothing but I am so relieved I don't regret it at all.

My urologist seems to be assuming that since the right adrenal tumor is benign that the left will follow suit.  I had been to the doctor several times since the first of the year for mystery complaints - tired, thinning hair, weight gain (especially in the middle) and other indistinct things.  Since the surgery I have lost 12 pounds, my energy is boundless and I just feel so much better.  It's odd to think that 20 days after a major sugery I feel that much better.  I was walking over 1/2 mile by day six.  This leads me to believe that there were some symptoms of Cushing's Syndrome, but it's too late to prove that.

I'm not sure what to do now, how far to push about the remaining adrenal tumor.  Since I feel so much better now I assume it's a different animal but what do I know?  I'm an accountant, not a doctor, it's not my job.  I don't want to be a whiner but neither do I want to just sit here and assume it's all fine.

I welcome all advice about follow up.  I see the doctor (at Cleveland Clinic) in three weeks and I want an idea about what to ask.

Just now read your email.  I assume you have already seen the Dr. at Cleveland Clinic.  I am curious to know what he said and if he has done any tests such as a 24 urine, etc. and labs to see if your cortisol levels are high.

I had all the symptoms of Cushings Syndrome (those you described plus others).  This was in late 2005...none of the Dr.'s here could diagnose it.  I diagnosed it by research and asking my Dr. to do a cortisol hormone level test.  I had a 6.8 cc mass encompassing my right adrenal gland.  The pathology results showed the tumor to be benign.  But within a year, two small nodules showed up on my liver.  I had a liver resection...things were fine almost another year with my every 3-month CT scan of the abdomen, until the scan caught the bottom of my right lung.  A CT scan of the lungs showed several small nodules on both lungs. 

I have had chemo which only stablized the tumors (they did not shrink). Now there is some growth and nodules again on my liver. 

I was told at Vanderbilt Hospital in Nashville (where I had the surgeries) that adrenal carcinoma is so rare that often the path reports will not look malignant.  The only way to tell is watch and see if it shows up somewhere else. 

I recently requested a scan of my brain and there was 2 small nodules there similiar to the ones on my lungs.  I have just completed 15 rounds of radiation and will have an MRI in 4 weeks.  The Dr. feels confident these were found early enough that the radiation will work to get rid of these on the brain and if not, the gamma knife can be used for what is left.

I had hoped to participate in a clinical trial (phase 2) at Ohio State University (the James Cancer Center) starting within a month, but now I have to wait 6 months after the radiation to be eligible. 

Last year I started having the Cushings' symptoms again and started taking Mitotane to keep the cortisol levels down.  I have stopped it a couple of times when it affected my digestive system too much.  I am now taking it again, since my levels are elevated again.  The 24-hour urine is the best way to know for sure. My endocrinoligist has me do a 24 hour urine every month, so it is monitored closely.

Soooo.....after all of that, how are you doing and what did you find out?

I would certainly insist on regular cortisol level checks and CT scans of the abdomen, etc. since you are having the Cushing symptoms.

I just saw the doctor two days ago.  He has me scheduled for a CT scan w-w/o contrast of everything in six months then back to him.  He actually seemed to forget about the second tumor and then said right, you need to have that looked at, we'll do some scans.  He said it does sound like maybe the first was secreting.

That's it, nothing else.  He still assumes that the second is the same as the first and we'll see in six months.  I am not sure I feel comfortable but am not sure what to do.  I had three different urologists tell me the kidney tumor was cancer, including the surgeon that removed 1/3 of the kidney and told me afterwards that it was definitely cancer.  So pardon me if I'm not too high on doctor's assumptions right now.

Hey, if I had not kept up with this and what my body was telling me, I am not sure (except for God's intervention) that I would still be here.  The Doctors have too many patients and I have had to remind them and ask questions about all of my previous scans, tumors, etc. 

If you are presently having Cushings symptoms, I would NOT wait 6 months for another CT scan.  There is definitely tumors somewhere there that is secreting cortisol and if you wait, believe me, you will get puffier and bigger and all kinds of energy.  All the while the tumors may (and probably are) spreading to somewhere else in the body.  If you have to, see another Dr.  Either that, or keep insisting to this Dr. that something is WRONG.  You know your body.  Our condition is so rare, they don't have a regular regimen of treatment, so they spend their time on patients they know how to treat.

I have some good Dr.'s, but it has gotten to the point that they just do whatever I ask--test wise, drugs, you name it.  The local Dr.'s here where I live that I see, Family Dr., Oncologist, Endrocrinologist, and now radiation Dr. are quite happy to tell me that whatever they say at Ohio State (where the clinical trial is going to hopefully happen at some point) is what I should do.  Ohio State is 6 hours away for me, but it has been worth it to talk to a doctor (Dr. Shah) who has studied this disease and knows about it.  They have been wonderful about emailing and calling me back anytime I have questions.  I fax any lab results, scans, etc. to them as soon as I get the hard copies, even though my Dr.'s here are supposed to be doing that.  (Believe me, it doesn't always happen that Dr. Shah receives anything from them.)

You are going to have to "take charge" with this and follow up on everything yourself.   If I can help with any info in any way, I will be happy to.  I try to research everything I can find on ACC.

Kathy