Discovery of my Adrenal Myelolipoma

Posted by Lizzy Armentrout on June 1, 2013 at 6:35 AM

     Today my blog is really just for my personal records but you just never know---maybe it will help someone else down the road that is dealing w/an adrenal tumor. During the year of 2012 I dealt with at least 7 UTI’s and  finally got to the point that I requested my physician to refer me to a specialist to get to the cause of these infections.  So in January of 2013 I was sent to see a urologist.  He examined me and decided to do a CT scan to see if I had any lurking kidney stones that might be cracked and flaking sending infection thru me.  On a Friday afternoon at 4:30 I went to my first scan expecting to hear the results in about a week or two.  Well, while teaching  the following Monday morning the dr himself called me at 9:30 a.m. to let me know that the good news was that I did NOT have any kidney stones BUT that they had discovered a cyst on my right kidney and a tumor on my left adrenal gland which is on top of the left kidney.  He said that the tumor was approximately the size of a Clementine orange but that he and the radiologist didn’t feel that there was anything to be too concerned with regarding the tumor but that he needed further testing to see if the cyst was anything to be concerned with.  He assured me that he was fairly sure that it wasn’t anything serious but just wanted to make sure so would be sending me for an ultrasound in the future.  When I hung up I was thinking that it wasn’t that serious and would just be going for some more tests in the next week or two.  Well, on the way home from school that afternoon the imaging place called to set up my appt and, due to testing going on in my classroom,  I requested the following week and was told, “Oh, I ‘m sorry but the dr has left notes that you need to have this done ASAP so we need to get you in here first thing inthe morning.”  Ok…at this point I will admit I started to get very concerned. So I did what I always do when life sends its storms….I prayed and then asked all of my praying friends to pray. 

So CT scan on a Friday and back in for ultrasound on Tues morning at 9:00 a.m.  The dr called me that afternoon and told me that there are 2 classes of cysts.simple and complex. Most everyone gets a simple cyst at one point in their life and doesn’t even know about it; they are of absolutely no concern.  The other category---complex---are the kind that they keep an eye on for being cancerous and that there is a wide scale for labeling them.   Mine is NOT a simple cyst but a complex cyst. It is a category IIF on the Bosniak scale which means that it only has a 14-20% chance of becoming cancerous.  The dr told me that the size is very small, 4mm, so at this point they are going to be just watching the cyst by doing ultrasounds once a year.  I asked about the adrenal tumor but was told not to be concerned.  I just couldn’t get peace w/being not concerned about the adrenal tumor especially due to the fact that my father had a MASSIVE pituitary tumor removed from his brain at the age of 40 that caused him life-long problems.  But at this point I just planned on talking to my regular dr about what to do.

 A couple of weeks later I was out of town for the Martin Luther King weekend with my family and started to feel really light headed and sick on my stomach but not sick like a bug.  For some reason (I call that reason THE LORD!) it popped into my head to check my blood pressure even though I have always had normal to LOW blood pressure my whole life.   I went to a local pharmacy and was shocked to see my lower number was 105!    Then that Monday it was 160/98 and on Tuesday, after sitting all day and working on the computer, it was still very high.  Over the next 3 weeks I kept a record of my crazy readings.  I’d wake up and before doing anything it would be 155/100 but then later in the day after the stresses of teaching it would be 140/88. Up and down and all over the place. My regular physician put me on 3 blood pressure medicines and while I was there I discussed the cyst and tumor with her and that I really wasn’t happy withjust waiting and watching and wanted a second opinion.  She agreed and sent me to an endocrinologist.  I had really hoped toget to see the dr that had taken care of my father but he no longer took new patients.   So off to the endocrinologist I went.  She proceeded to do all of her blood work and tests.  Once again I was sent for another imaging test---this time an MRI w/contrast dye.  After running all of her tests she determinedthat I had a 5.5 cm by 5 cm adrenal myelolipoma which is the rarest of the adrenal tumors and that is was non-functioning, meaning it wasn’t producing any hormones.  She also explained that this type of tumor is a very slow growing tumor.  She referred me to a nephrologist due to my continuing problem with uncontrollable blood pressure readings and the flank pain I was living with.

Meanwhile I developed another UTI and was back at the urologist, and while there I talked to him about just going ahead and removing the tumor and the cyst since I was currently under two major medical plans.   He explained that there would be no way that he would ever recommend removing both in the same surgery due to complications that could arise to my kidneys, but that he didn’t know that much about myelolipomas and would do some research on them.  I told him that I had been all over the internet researching this tumor but couldn’t find much due it being rare BUTthat those I had come across all had hypertension supposedly unrelated to the tumor and after removal their blood pressure went back to normal.  He called me the next morning to inform me that after researching the tumor he did feel that removal would be the best option and that he had gotten a recommendation for  a surgeon that did arenalectomies laproscopically and robotically.  He told me that due to the tumor being non-functioning that there was no way it was affecting my blood pressure.

Before I could even see the surgeon I still had the nephrologist appointment so I went ahead and kept that appointment.   The nephrologist also had to research this type of tumor.  I also told him what I had told the urologist about my research regarding blood pressure and etc.  He called me the next day to tell me that removal of the tumor and the adrenal gland would be his recommendation but he was not convinced that it was affecting my blood pressure.  He had also found a surgeon who performed these adrenalectomies---it was the exact surgeon the urologist had recommended! :)

So surgery was set for May 7th, 2013.

Will give the surgery and post surgery report in the nextblog.




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