This is the story of my on-going battle with Metastatic Testicular Cancer
The beginning of October 2012 was beautiful, we had a nice long Indian Summer in NYC and the weather was perfect. My new husband Mike and I were getting ready to leave NYC and move to Dallas, TX, where both me and Mike had great new jobs ahead of us. I was real excited because this was going to be my first big move across country, with my new husband and family and I couldn’t wait!
Mike and I packed up our NYC apartment into a large moving van, which Mike had to drive by himself and I packed up our little dog Caesar started the 1500 mile journey to Dallas, TX, driving our car behind the large moving truck. It was a long 4-5 day drive, we stopped in the Great Smoky Mountains, Nashville, Memphis and a few other spots along the way then finally TEXAS at last.
I couldn’t wait to finally arrive in Dallas, so I could start my new job with a top dermatology practice as a clinical supervisor. Life was good; I had a fabulous husband, a great job and a beautiful place to live, and we seemed to fit right into the Dallas landscape and society. The people were so amazing, and made us feel right at home in our new city.
Not long after arriving in Dallas I found my new best friend and confidant in a beautiful German Dermatology Nurse name Alexandra, my Alex! Alex and I were in separable right from the beginning and I could not have been happier. She was strong, funny, SMART and loving; this was kismet in my eyes. Being a new Yorker, I didn’t know what to expect when moving to Texas and was thrilled to have found my soul sister…. I was her brother from another mother J
The 2012 Nov/Dec. holidays came and went without any drama or melancholy for NYC, except it was a little weird having 80 degree weather on Thanksgiving and Christmas, but it sure beat shoveling 2 feet of snow!
One night in January 2013, I was lying on the bed and I noticed a small hard spot on the inside of my left testicle. At first, it didn’t seem that strange to me since I’d noticed some occasional “hardness” in the testicle before. But this time, over the next few days, the hardness didn’t go away – and seemed to be getting a little larger. I mentioned it to Alex and Dr. Muller, the new doctor I was working for and after a few days they both convinced me to let Dr. Muller feel and examine it. Immediately upon feeling it, she suggested I get it checked out by our doctor. But I had a big state inspection coming up in the next few weeks and had very little time to squeeze in a visit to the doctor.
I was thinking I’d just wait until I all was over and done, but at the last minute (with some additional urging from Alex and Dr. M), I decided to make an appointment. I ended up getting an appointment on the same day my inspection of our practice began.
Tip: If you feel anything strange in your testicle, even if it doesn’t hurt (TC rarely does in the beginning), get it checked out.
Feb 2, 2013: The Misdiagnosis
So, in I went to see our family doctor. I described the problem and let her have a feel. I still have a generally positive opinion of my GP, but she made a major mistake here. After checking me out, she proclaimed (with confidence) that I had epididymitis – an infection/inflammation of the epididymis. She then went on to say that I did NOT have testicular cancer – that she’d seen TC before and that what I had was not TC. She said that the infection was a minor condition and that it often it clears itself up, but antibiotics would help it clear up more quickly. So she prescribed some antibiotics for the infection and sent me on my way. I left feeling completely confident that I had a simple infection. Despite the doctor’s mention of it, TC hadn’t registered with me as even a remote possibility.
Some close friends and family came to visit that very next week so my mind was elsewhere and not too focused on my “little problem”. I knew I’d be very busy over the next week working and partying with my friends – so it would undoubtedly be a week peppered with alcohol-laden socializing. Figuring that this probably wouldn’t be a good mix with the antibiotics, I decided to wait a few days to take them. I ended up having a successful inspection and the launch of our new office protocols and procedures were up and running; as well as a fantastic time with my friends & family.
The week after my testicle had started aching slightly and Alex, annoyed that I hadn’t taken the medication, urged me to take it now. So I started on the antibiotic protocol and got back to workl. The antibiotic was prescribed for one week – and as the week wore on, my testicle started to ache more and more and it got so bad that I was having trouble sitting down comfortably. The lump had also grown to about the size of a grape and had become soft. Concerned about the pain, I called my GP, right away she gave me the name of a top urologist in Dallas and suggested that I see him immediately.
Tip: If you do have a lump and want to get it checked out, especially if you had an undescended testicle as a child (putting you in a significantly higher risk group), go to see a urologist rather than a GP ASAP.
March 1, 2013: The Diagnosis
I walked into the urologist’s office completely oblivious to my plight. I was certain that I had epididymitis and that I simply needed a stronger antibiotic. I met the urologist and had a positive first impression. He seemed very experienced and competent. He did a physical exam and then said he’d like to do a sonogram to take a closer look. Luckily, he had a sonogram machine right there in his office and was able to basically walk me straight over to have the exam. I was in a pretty good mood, laughing and joking with the Ultrasound tech and new doctor.
The urologist wasn’t in a joking mood. He said: “You see this mass here?” I said: “I guess so.” He said: “and you see this here – this appears to be calcification.” I said: “Yeah.” He then tells me that testicular masses almost always turn out to be malignant and therefore the proper protocol is to remove “the whole thing” (as opposed to doing a biopsy). I STILL was not getting the picture – I thought when he said “malignant” that he meant some tiny, easy malignancy – and when he said “the whole thing” that he meant the “whole” tumor. I asked him to describe what he would do, and as he explained the orchiectomy procedure, it finally dawned on me: “You mean you want to remove the whole testicle?” “Yes.” Now finally awake, my brain started racing: “I’m going to be a ‘uniballer’! They don’t just do this on a whim – I must be in trouble! This isn’t just some little tumor – I HAVE CANCER! THEY’RE GOING TO REMOVE MY TESTICLE – AND I HAVE CANCER!!!”
As the gravity of my situation quickly sank in, I became almost paralyzed. My brain and emotions were overwhelmed. I decided that if I did indeed have cancer, then the sooner I get it out, the better. I made an appointment for surgery the next day. I tried (with limited success) to keep my cool until I left the urologist’s office. I quickly decided that I couldn’t possibly keep this from Alex even if I wanted to, so I called her from my cell right outside the office and immediately broke into tears as I explained what was going on. She was obviously very upset by the news, but managed to stay cool and to calm me down just a little. Alex and I agreed to meet at my home in the next hour. When I hung up, I drove back to my office, quietly collected my things, and told Dr. Muller at my office that I just “had to leave.”
When I got home, I was in for was one of the most emotional nights of my life. As if the new realization of having cancer wasn’t scary enough on its own, my fears were only heightened by the fact that the only other person I’d ever known with TC had died within a month of discovering that he had it. I wondered if I was going to die – and if so, when. How much time did I have?
Since I had just met this urologist that day, and we were now talking about removing my testicle, I wanted to get a second opinion. So I squeezed in a visit to a second urologist who confirmed the diagnosis. I also called an old high-school friend of mine (who I hadn’t spoken to in years) who is a urologist in California. He was reassuring, gave me some useful general TC information, and confirmed that the radial orchiectomy seemed appropriate course of action.
After I described my situation to him – including the fact that I had an undescended testicle as a child, but that the affected testicle was the OTHER one – he very strongly suggested that I bank some sperm, I laughed and said “ I don’t have to worry about that”. He said that the odds were pretty high that my remaining testicle (which was brought down late – at around age 8) was infertile. Armed with this new information, my husband Mike quickly made an appointment for me the next morning to have my surgery (the day of my surgery!).
Tip: I think it’s important to talk to your urologist about this – especially if you’re in a situation like mine (i.e., about to have your one normally descended testicle removed). I wouldn’t significantly delay surgery, but if you think that you might EVER want to father a child, you should at least start looking into sperm banks immediately (your urologist should be able to recommend one). For most men, it’s unlikely that a single orchiectomy will render them infertile. However, future treatment (e.g., RPLND surgery and/or chemo) could.
March 20, 2013: Radical Left Orchiectomy
To this day, I still find it amazing how Alex and my new friends at NDDA (dermaolgoy practice) can take your mind off of anything – even an impending surgery – even cancer!
Before I had time to really learn about all the potential options. I was thinking: “Couldn’t they pull the testicle out, leave it attached, do a biopsy, and if it’s not cancer, put it back in?” I had heard about the risk of “spilling” cancer cells, but this idea seemed reasonable to me. It was a lot to come to grips with in 24-48hours.
Luckily, my urologist was flexible and understanding of my mental state. I ended up arriving late at the hospital due to a number of factors including my indecision about the surgery and, when I finally decided to go forward with it without reservations.
Before surgery, they took my blood (to check my “tumor marker” levels) and did a chest X-Ray. The chest X-Ray is done because TC has a very predictable spread pattern from the testicle(s) to the retro-peritoneal (abdominal) lymph nodes to the lungs. Both the X-Ray and the tumor markers ended up being extremely high. The surgery was done on an outpatient basis.
When I woke up, I remember being extremely uncomfortable. I was put in a hospital room where I had to demonstrate my ability to urinate before they would let me go. My husband Mike had come to see me in the hospital – and his presence was worth a great deal to me. When I finally did leave the hospital, I remember thinking that I didn’t seem physically ready to go, but I went anyway. My husband drove me home, and when I got there, I slept for most of the next day. I awoke to the realization that I had cancer. I didn’t know it then but this would be the very first thought on my mind every morning when I awakened for many months to come: “My God, I have cancer AND ONE BALL!” It’s very difficult knowing how to act when you’re not sure how long you might be around. On the one hand, you don’t want to acknowledge the possibility of death – nor do you want to concern others around you, so you’re inclined to carry on life as usual. On the other hand, you feel obligated to live each moment “to the fullest” because you may not have that many moments left. Even deciding how to define “to the fullest” is a difficult exercise.
We had to wait several days to get the pathology results. Having already started researching the disease (primarily on the TCRC web site), I was hoping that it would end up being a “simple” case of seminoma. We were fairly crushed when the news came that it was 100% Carcinoma (nonseminoma). During my research, I had learned that nonseminoma often involved more surgery and/or chemo than seminoma – and that among nonseminomas, Embryonal Carcinoma was among the most aggressive. At first, I became more and more scared as I learned about my disease. It was ultimately the personal stories on the TCRC web site – where I read about real people who had survived the same type of cancer I had – that started easing my worried mind. I am documenting my own story, in part, in the hope that it might have the same effect on others.
I had my first CT-scan done about the same time that we got the pathology report (several days after my surgery). It also came out clean. This classified me a “advanced clinical stage IIIB “, meaning that by all clinical measures, the tumor had spread to other areas of the body, including my retroperitoneal lyphnodes as well as permiating my thoracic spine, literally breaking my back at T9 & T10.
I now had to make the next major decision regarding my treatment. Should I have the retroperitoneal lymph node dissection (RPLND) surgery, Radiation, Chemo or should I go into a surveillance protocol. After feverishly studying every article, paper, and clinical study I could find, I decided to go forward with the surgery based on the following:
1. My pathology report indicated evidence of both vascular and lymphatic “invasion.” This meant that cells were seen in the vascular and lymphatic channels leaving the testicle. It also meant that my odds of the cancer having spread were significantly higher.
2. I had a very malignant and aggressive histology (cell type). Waiting might be dangerous – especially since it could spread to my retroperitoneum and thoracic spine and just about anywhere from there. It had grown from the size of a pea to the size of a baseball in only 2-3 weeks – this scared me!
3. My tumor markers (bHCG and AFP) were high even before my primary tumor was removed. This meant that these markers were providing valuable information – of how much cancer was in my body.
Having decided to go forward with aggressive radiation, we back back-burnered the RPLND and chemo