The Diagnosis
I found a lump on my right testicle.  After getting a referral from my Endocrinologist, I went to see a Urologist to have the lump checked.  The Urologist felt the lump and decided to order an ultrasound.  I had the ultrasound performed and was concerned to see lumps in both testicles. 

The Phone Call
I had a very stressful week waiting for a return call from the Urologist.  I was finally told to call him Friday morning at 9am.  I called my Urologist and he told me I had lumps in both testicles.  The lump had spread from the right testicle to the left testicle.  He told me I would have to have both testicles removed as soon as possible.  Paraphrasing the doctor he told me "This cancer moves fast, we have to get them both off right away".  He told me to schedule the surgery and head to the sperm bank if I wanted any chances of kids.  I don't currently have any children.  I remember sitting at the phone suddenly covered in sweat.

The Concern
Due to the fact I have CAH, about two years ago a CAT scan was taken of my adrenal glands. The CAT scan showed that I had multiple nodules on my adrenals.  Not a concern for a CAH patient.   Remembering this, I thought why couldn't my disease cause lumps in my testicles too?  For some reason I remember being told in Biology that the testicles and adrenals are made up of very similar material. 

The Research
I did some quick searches on the internet.  It did not take long to find quite a few articles on CAH males having possibilities of lumps in their testicles.  The problem was that the studies did not show it was a common occurance with CAH males. The best supporting information I could find was that up to 50% of CAH males had been shown to have these lumps. In addition, I don't usually listen to everything I read on the internet.  I had to know more before I could dismiss what the doctor was telling me.

The Goal
I scheduled the surgery for my testicles to be removed.  The surgery would be performed in two weeks.  My goal was to get my Urologist or Endocrinogist to listen to me and understand these may not be malignant tumours.  If I did not get the doctors to listen to me, I would go through with the surgery.  I did not want to be in denial and regret putting off the surgery.

The Calls
Getting a hold of either my Endocrinologist or Urologist turned out to be a nightmare.  It took forever to get either one of the doctors to call me back.  Time to the surgery was ticking away and the stress began to build.   Finally my Endocrinologist called me.  I explained to him about the reports that I had found online.   He told me he found it could be possible, but never actually came across such a thing.  He told me that he would talk to my Urologist.  He instructed me to ask my Urologist to call him.   However, if after the discussion the Urologist wanted to proceed, then it would be between me and my Urologist.   My Endocrinologist did give me two second opinion Urologists that I could go see.  I scheduled a second and third opinion with the two doctors.  Time was running out and I did not want to take any chances.

was some progress, however, I still felt uneasy about being asleep during the decision process.  My biggest fear was waking up and finding both of my testicles removed.

Luckily I was able to schedule the second and third opinions very quickly.  The referral from my Endocrinologist helped speed the process. While waiting for the second opinion Urologist to came into the exam room, I felt the stress taking its toll.  Feeling like I was going to pass out was combined with a burning sensation in my stomach.  Was this stress or the cancer spreading to other parts of my body?  The doctor came in and examined my testicles.  He also felt the lump the first Urologist found.  I gave him a copy of the study I found on the internet.  The best evidence I could find at that point.  The study showing up to 50% of CAH males could have benign lumps in their testicles.  He quickly read the study and admitted of not knowing about such a thing.   A ray of hope shined through.  The ray of hope was quickly squelched. The Urologist told me that the functionality of the right testicle was so minimal from the lumps that it should be removed anyway.  He basically repeated what the first Urologist told me.  The right testicle could be removed and biopsied and then the left testicle could be cut open and examined.  His concern was that cancer could be spread during the removal of the right testicle if the supporting plumbing was not clamped off properly.   He praised my first Urologist as being a very good Urologist just as his father had been before him.  He told me that whatever my first Urologist wanted to do was probably best. 

I contacted the doctor that was referred.  I mentioned to his receptionist that I was an adult patient with CAH and needed any help they could provide.  After she talked with the doctor, I was scheduled to come in the very next day.  The next day I went to see Dr. Brown.  It did not take long for Dr. Brown to verify the study I had been reading and to schedule me to see another urologist.  A paediatric urologist that was familiar with testicular tumours associated with CAH.  I was scheduled to see the Urologist the next day.

I was still a bit nervous, but I was feeling much better that Dr. Brown listened to me and understood that the tumours could be caused by the CAH.   The urologist examined my testicles and to my delight announced "It doesn't even feel malignant".  I was thrilled and amazed that such a simple exam resulted in such a finding.  To be sure he scheduled a testicular biopsy to be performed.  He assured me not to worry, he was 90% sure it was adrenal rest material being aggravated by excess androgens. 

Since the benign tumours were removed it took about a week to recover, however recovery with both my testicles intact.  Currently I am seeing Dr. Brown on a regular basis in which he is adjusting my daily Hydrocortisone and Florinef replacement therapy.  The hope is to reduce my androgen production as much as possible and restore my fertility.