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My story - 100% Embryonal Carcinoma, Stage I

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  • My story - 100% Embryonal Carcinoma, Stage I

    Hi Everyone,

    Iíve been a lurker on these forums since November 2012, going through my own testicular cancer saga and I just wanted to start by saying a huge thank you to everyone who has shared their story, their pain, their triumphs and setbacks here and made them available to the strangers on the internet like me. I donít know what I would have done, what kind of understandings I would have come away with, had it not been for the shared knowledgebase you all have created here.

    That being said, I felt the same need to share my story and add to this great base in the hopes that someone somewhere in the future can gain some modicum of peace from reading my own story. If this is the wrong forum to post something like this, let me know.

    Just some background to set the story, I'm a 33 year old male living in NYC, attending graduate school at NYU to start on my second career. I was an upper elementary special education teacher for 7 years and Iím currently studying speech and language pathology. I had just started my second to the last semester placement at Mt. Sinai hospital in the rehab unit, working with patients with traumatic brain injury as well as spinal cord injuries on rehabilitation of the their speech and swallow.

    It was October 18th, 2012 and I was finishing up my day at Mt. Sinai when I felt this strange lower back pain. Previous to this I had been experiencing a strange discomfort with my testicle, a feeling of heaviness alternating with some dull pain. I had chalked this up to the 10 mile run I had gone on that previous Sunday and the huge amounts of weight training I was doing at the gym (I was on a big fitness kick). This pain proved to be too much and I was contemplating going to the ER, but instead decided to wait till the next day and see a doctor at my NYU student health center.

    The doctor there examined me, and noting that there was some swelling and the epididymis felt enlarged, along with the apparent relief that elevation brought to the pain, diagnosed me with routine epididymitis and sent me home with a week prescription of Cipro. I was relieved that it wasnít ďcancerĒ which was my immediate first thought and went about my daily business for another few weeks. I would experience slight pains here and there and that same dull ache, but as long as I wore tight underwear, things seemed to be okay.

    It was Sunday November 11th when the next big event occurred. I help out my friend by working at a pop-up clamshack she runs at these food flea markets they have in Brooklyn. I was serving clam chowder when I felt the sharpest pain I had ever felt in my testicle. It was as if someone took a knife to me and I could barely walk. As I didnít want to call an ambulance, and there are no cabs to be found in that area, I did have to walk to a subway, get up and then take a car service to the emergency room. It was pretty much the worst moment of my life.

    I went to the Lutheran Medical Center emergency room which is a 7 minute walk from my house and a very busy location. Gunshots, stabbings, big trauma center, I got a bit lost in the triage process. Normally when you present with severe testicular pain they give you priority due to possible torsion, but for me I was trying to mask my pain and not be a bother. I could not hold back the tears though and soon I was crying, rocking back and forth in the holding area. Finally someone got me and yelled at someone else for not taking me sooner. It was blood pressure, temperature, one look at my extremely swollen testicle, and STRAIGHT up to emergency ultrasound. The tech performing the ultrasound was asking me questions about my prior medical history and suggested I find myself a new urologist as there is a mass that she can see (remember at this point I hadnít even seen a true urologist yet). I waited in the ER most of the night and once a radiologist interpreted the ďdark mysterious massĒ in my right testicle, I was sent back to get a lower abodominal / pelvic CT scan. I was confused, horrified, and scared out of my mind. My CT scan results had revealed one slightly enlarged lymph node at 1.2 cm in the retroperitoneal space.

    Anyway, I finally got a referral to Dr. Steven Berman, a urologist here in Manhattan , who I canít recommend highly enough. He was really one of the most amazing doctors I have been treated by, and without his decisive action, I would not be in the place I am today. At my first visit they did the blood markers draw which were normal and stayed normal, but upon examination, he immediately scheduled me for an orchiectomy the following week on November 20th. He knew that something was very much not right (and at this point my testicle was swollen to almost 2xís the size of my left one. I did have one more differential ultrasound as well just to be completely sure. I immediately started researching, reading these forums and absorbing everything I could about TC.

    The orchiectomy happened in a crowded Beth Israel hospital (still dealing with the backlog and the closed hospitals from Hurricane Sandy). It went off without a hitch and I was sent home that same evening with Percocet and the anticipation nightmare known as the 7-10 business days pathology report waiting game. It finally came back. A 3.2 cm tumor, confined to the testis, 100% Embryonal Carcinoma, no lympho-vascular invasion. I was at pT1, or stage I, or however you want to say it. My sudden pains were caused by hemorrhages going on in the mass. After getting a chest CT (clear, no mets) to complete the picture, I was referred to Dr. Sheinfeld at MSKCC who many people here know and love. I gathered all my lab results from the various places along with my pathology slides and went to my first appointment.

    At this point it was December 13 and I was just starting to feel normal post orchiectomy. Started going to the gym for light exercise, hanging out with friends, off all the painkillers. I knew going into the meeting with Dr. S, after doing extensive research on here and various studies, I was going to be choosing between RPLND or surveillance. My markers had stayed normal and a subsequent full CT revealed all my nodes were within normal size now. I weighed the pros and cons of each (aggressive vs. passive, knowing vs. waiting anxiety, possible needless major surgery vs. continued fast recovery, etc.) I had managed to finish my semester successfully and I was at my winter break. Dr. S suggested of course I have the RPLND to be sure, and I agreed, I wanted to be aggressive. He suggested third week of January, I suggested way way way sooner. It was scheduled for about one week later on December 19th. I underwent bilateral nerve sparing RPLND and went through the recovery process under the excellent care of all the nurses and staff at MSKCC (GO HERE if you need to have this procedure, it was just an amazing experience). The surgery lasted a few hours only and went off with no complications. My parents had flown out from California and we had a beautiful Christmas together at MSKCC.

    I was discharged 7 days later, the day after Christmas and went home with some Norco and stool softeners on the amazing 5 grams of fat or less per day diet. Pre-tc I was at about 185 lbs, lots of muscles. At my lowest on this diet I had gone down to 162. Iím glad I stuck with it for the two weeks because I had no complications post surgery. I was again playing the pathology waiting game on the lymph nodes they removed (the frozen section they did during the operation was negative, which was a very encouraging sign). On December 27th I got a call from the nurse, all lymph nodes were clear, with no cancer present. I am cancer free! I sobbed into my motherís arms over an egg white scramble. Iím crying again now thinking about that moment, that release of all the tension and anxiety building up.

    My one month follow-up was the quickest doctorís appointment I had ever had. With Dr. Sheinfeld in and out before I had finished buttoning up my pants (heís a busy man and I was so happy that things went so quickly). I needed physical clearance for my current school placement at Lutheran Medical Center (thatís right, the same hospital I found out about the dark mysterious mass 3+ months before) and the doctor had told me that the wound looks like it was closed by a true master.

    So Here I am, a little over 6 weeks post RPLND. Awaiting my first of one years worth of monthly follow-ups on February 14th with markers blood draw and chest x-ray. Thank goodness I only have to get one CT scan in a couple of months to establish a new baseline. After having three in the past few I can go a long time without having another. Iím recovering very well. Have resumed all my daily living activities: dancing, walking, drinking, (just no exercise, running, weight lifting, etc.) I have some swelling and numbness around my scar which still looks pretty good (I'm going to post some pictures in that thread next). Iíve gained back some weight and am at 170 lbs. Iím still retrograde ejaculating, but itís only been 6 weeks and Iím not going to freak out about that quite yet.

    Iím just so grateful overall that everything worked out and I was able to conquer this, keep my life on track, and be surrounded by the most amazing family and friends to support me along the way.

    I was fundamentally changed in the best way possible by this experience and I look forward to staying a part of this amazing community / brotherhood.
    Nicky
    twitter.com/nicky
    10/18/12 - First pain felt in right testicle.
    11/20/12 - Right I/O - 100% Embryonal Carcinoma / Stage 1 (no lympho-vascular invasion)
    12/19/12 - Bilateral nerve-sparing retriperitoneal lymph node dissection (Dr. Sheinfeld, MSKCC)
    12/27/12 - All nodes path report cancer free

  • #2
    Welcome to the forum, a club nobody wanted to join, but most especially welcome to survivorship. I'm glad to hear you were treated by some of the best in the business. Thanks for sharing your story.

    Best wishes for the second career. We need really great people to specialize in the kinds of injuries you will see. Live long and prosper.
    Paul
    "Statistics are human beings with the tears wiped off" - Paul Brodeur
    Diagnosis: 05Sept07 Right I/O: 13Sept07; Pure Seminoma; Surveillance only per NCCN: All Clear August2013 (CT scan, Markers)

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    • #3
      Thank you for sharing your story to all of us. I can assure you this will help others deal with their diagnosis and subsequent treatment. My middle daughter has severe speech apnea so i applaud your decision to enter this field. Good luck in the future, wishing you the best!

      Greg

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