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New Member/New Hope

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  • New Member/New Hope

    Hi All,

    I've been on these forums for nearly the last few weeks. Everything happened so fast. I've been reading stories here that filled me with hope, sadness, joy, despair. The last few weeks have been an emotional rollercoaster.

    Everything was going so great in my life. I'm 38 years old with a great position in a pharmaceutical company, beautiful and kind new girlfriend, wonderful and supportive family, everything just great. Three mondays ago I had some backpain that I've always associated with kidney stones. Traditionally, not enough to send me to the urologist, but I thought, maybe I better check this out. I made an appointment for the next day and that's when the nightmare started:

    10/3/06: Uro sends me for KUB X-rays, but also notices a small testicular lump by barely waving his hand above my left testicle. He really barely touched it. He asked how long I had the lump, and my response was "what lump?" Note: That testicle had always been weird, a little bit smaller than my right, and some funny features that had previously alarmed docs. I thought nothing of it, but he prescribed tumour marker analysis and a scrotal US. The "what if" thought didn't last longer than my drive home.

    10/5/06: I get my US done at a radiology clinic nearby. Doc calls and says my results from the KUB are really bad (1.2 mm stone left kidney, many small stones on right, small stone in left ureter). He tells me to come in on Friday to schedule Lithotripsy, and wishes me luck on the US.

    The US : Sonographer and I make small talk. He has a poker face, and he spends A LOT more time on my left testicle than my right. Should have been a clue... but I only remember this in retrospect.

    10/6/06: Go back to the Uro, think everything is going fine because he is showing me the KUBs and the stones that need to be destroyed. He then takes me to a procedure room, sits me down and says "Your tumor markers were good..." I nod, "...but your US...Not Good". I'm thinking, ok, so this means more tests...but before I can speak he continues "that testicle needs to be removed." I sat there in disbelief. I then insisted on a second opinion. I went to the Chief Urologist at the Medical School where I did my post-doc. I was a researcher there, and I studied prostate cancer. I went directly to the cancer institute (Cancer Institute of NJ) and he fit me in. I had a shimmer of hope after he examined me and felt that there was a small abnormality but "Not something that felt like a Tumor". He insisted that I hold tight until he could see the US pics (which the original doc hadn't seen, he was just going by the report). In the meantime, I went back to the other hospital to schedule my lithotripsy. Later that afternoon I would go back and he would tell me that the other physician was overly alarmed, I thought. It didn't happen, instead, I went back and he told me the same thing: "It's got to come out". He asked me if I wanted an implant and I immediately said yes. He scheduled the surgery for the following Tuesday, and CT scans, X-rays, etc that afternoon and next morning.

    Sunday my mom flew in from overseas to be with her only child. I was at a good friends wedding with my gorgeous girlfriend. She was supportive the entire weekend, but she was scared too. She assured me that she would be there for me no matter what, and I believe her. She told me she didn't want me to have an implant, but that decision was purely my own.

    Monday I went to work to tell my boss that I have some health issues and to arrange that people cover my responsibilities. He too was supportive, and clearly concerned.

    The I/O : My mother, my 2 cousins were there. My friend from the cancer institute also there, and a little later my g/f came (this is how she meets my mom for the first time. My surgery was scheduled for 1pm. They wheeled me in to the operating room after the initial questions (nurse, anasthesiologist, residents, etc.). I felt like I commited a crime and I was being interogated, but I remained in a good mood. The doctors were fantastic, and I hate to say it, but I think the young men sympathized. When I was being layed on the operating table, I had a few more questions for the doc about the implant. I had second thougths about something foreign in my body, and I thought it would be a reminder of the cancer, more so than the absence of a testicle that used to hurt me ALL THE TIME anyway. He said "you better decide, quick" and I made a last minute decision not to opt for a prosthesis. The anasthesiologist then informed me that the injection was in, and one of the residents said "don't worry, we'll take good care of you".

    The Recovery: I woke up feeling like a million bucks and talking a mile a minute. I was brought out to the post-op room. I was asked if I wanted a turkey sandwich or a muffin and I said "both". I scarfed them down. My family and friends were brought in, and my spirits made them happy. I spent the next few days at my cousins home recovering. That time was hard, thinking about everything, my life, the fact that I hadn't married, that I was superficial about aspects of my life, my looks, my body. I was genuinely happy and proud that I didn't opt for the implant, and so was my g/f. I hated the way my package looked, but I knew it was just post-op and it would get better. I worried about how much the cancer had spread. I read so much where I was pretty sure it wasn't benign, so it made me sick to know that I wouldn't get the results from the path report until the following Wednesday (over 1 week!) I mulled, I cried. I thought about how I can be a better person if I get through this. Things that seemed like a REALLY big deal before seemed so silly. I was mostly on drugs, percocet... I couldn't focus on reading. I thought I would get some work done, but it was impossible. Monday I returned to work, and Tuesday, but I wasn't very productive, and my I/O incision hurt and was swollen. By now I was using only tylenol for the pain, because I hated the constipation from the percocet.

    I took joy in little milestones: My first pee, standing up... my first dump, where I felt like I almost had an aneurism, my first erection (still don't have them spontaneously), the first time I took all my clothes off and looked at myself in the mirror, my first shower post surgery. I feared the road ahead, but knew that I would get better, whether by surveillance, chemo, radiation, or more surgery, I know I'm in this for the long haul...

    The Pathology Report: Finally. I took off from work today. The last couple of days were pretty rough. I found myself in a couple of meetings at work where I was able to distance myself from the cancer. After the meetings I realized I hadn't really thought about it, but when I'm at home with my mom, it's hard not to. I bought Lance Armstrong's book, and I've been reading it. I did some last minute checking last night... just to see--if it's benign, what could it be: Leydig cell tumor? immature Teratoma? I made sure not to fill my mind with false hope though, I'm a scientist, and I can do math.

    I get to the doc at 8:30 am. My mom is in tow, but I leave her in the waiting room. I get to the procedure room, but its 1 hour before I finally finish with the doc. He says stage I seminoma- Classic. No tumor in epididymis, no tumor in sperm cord. No evidence of lymphovascular invasion. The best possible REALISTIC result. I want to cry, but I'm too happy. The doc presents the radiation and surveillance options, leans towards surveillance but also suggests that I consult with a Rad-Onc. He says 4 months to my next CT, and stressed that he is only suggesting this route because he is confident that I will comply. I know that I have to.

    I never thought I would be happy with a cancer diagnosis, but that's what cancer does to people, everything becomes relative to something better, and something worse, but all bad. I look for hope. I thought about my first doctor, who found the lump. I feel some regret about not giving him the pleasure of performing the surgery, but I credit him with saving my life. I think that I got off easy after reading the posts here, and see the kind of pain and angst that others have. I wonder if I should have the radiation anyway. I wonder if I'm crying more because of the decreased testosterone in my system

    . I wonder what the next 4-month blocks of life are going to be like. Still, while I don't look forward to the tension of having to get checked, I'm looking forward to celebrations at each time point, hopefully, and I pray, for a clean result, everytime. Also, I wish for all of you, the best possible outcome after all of this, for you and your entire families. Godspeed, Live strong.

    Life happens fast...3 weeks ago I was celebrating my birthday and feeling that everything was perfect in my world, and now I'm a cancer patient. But I read a great quote today, and I think it will be my favorite for a really long time:

    "You must abandon the life you planned, to live the life that was meant for you"

    Again: Goodspeed and Live Strong!

    Detected mass 10-6-06, Radical left I/O 10-10-06, Stage I seminoma, 1.5 cm primary, No LV invasion, No Rete Testis Invasion... Currently on Surveillance.

  • #2
    Originally posted by djmac
    Life happens fast...3 weeks ago I was celebrating my birthday and feeling that everything was perfect in my world, and now I'm a cancer patient.
    Now you are a cancer survivor! Welcome to the forums -- and welcome to your new life.
    Scott, [email protected]
    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

    Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!


    • #3
      Awesome news DJmac and your story reads like a wrote it myself. What an emotional rollercoaster from diagnosis to the path results etc. What was the size of the tumor?
      dx May 3, 2006, left I/O May 5, seminoma stage I, RTx16 (24Gy) completed June 26, 2006, all clear.


      • #4
        Originally posted by djmac
        "You must abandon the life you planned, to live the life that was meant for you"

        Welcome djm!
        Excellent quote! Glad you're set on a path foward! The emotion after the treatments stop is powerful as you re-examine what you've been through and where you're going. Glad you found us...and we added another Jersey guy to the ranks....maybe the state does glow.....
        Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


        • #5
          Hi all, thanks for the responses and the warm welcome!

          CBuysse: My tumor was 1.5 x 1.2 x 0.7 cm. Here is the path report:

          Specimen(s) Received
          Left testis and cord

          Clinical History

          Left testicular mass

          Gross Description
          The specimen is received fresh, labeled with the patient's name and "left testis and cord". In consists of a 39 gram testis with attached cord. The cord is 8 cm long and 1.2 cm in diameter. The testis measures 4.8 x 3.5 x 2 cm. The specimen is received with the tunica vaginalis open on the anterior aspect. The mass is delineated by the tunica albuginea. The tunica vaginalis is inked green. Representatitive sections are submitted as follows: AA - spermatic cord margin, AB - another section through the spermatic cord, 2 cm from the margin. AC - section 5 cm from the spermatic cord margin, AD-AF - sections through the mass which is submitted entirely. AG-AI-sections through the testis

          Final Pathologic Diagnosis


          Do you guys think that surveillance would be comfortable with this path report? I know its a fairly personal decision, and I know I can stick to the surveillance protocol. What would be the treatment f the cancer recurs? Would I definitely need chemo in that case? Thanks for any comments!!
          Detected mass 10-6-06, Radical left I/O 10-10-06, Stage I seminoma, 1.5 cm primary, No LV invasion, No Rete Testis Invasion... Currently on Surveillance.


          • #6
            Thanks for sharing your story. Sounds like you are indeed lucky - was caught very early. You may well be cured already. But as to what is the best course going forward - yes, that is a very personal decision.

            Surveillance is a reasonable choice, as no invasion and fairly small tumor. But you would have to make sure to keep current on your follow-up schedule. I had a larger tumor with invasion, and felt that meant higher odds so I went with RT rather than watchful waiting - thought I would be a basket case had I not done some treatment. You can drive yourself crazy trying to make the right decision. You realize that there are multiple right answers, and each person has to do what they think is right for them. Make the decision based on the best information you have and then don't look back and second-guess.

            The good thing about surveillance over RT, is that you don't get treated if you don't need it. If you stay current on your follow-ups, and there is a recurrence, you should catch it early and then you would most likely do the RT at that time, although it would likely be the dogleg rather than para aortic. Some have choosen the single dose carboplatin,so I guess that is another option, but there is limited long-term data yet (that could be also said about the para-aortic RT to a certain extent).

            Anyway, good luck with the decision.
            Right I/O 4/17/06, Seminoma Stage Ib
            RT (15 days) completed 6/1/06
            All clear as of 5/8/09


            • #7

              First post here too. I am glad this is working out for you. I am surprised that your Oncologist hasnt mentioned the single dose of Cistoplatyin though.I am in the UK and they are moving away from rec Radio here.My hubby was advised (he also had a Seminoma that apparantly has moved to his lungs) to have single dose chemo rather than radio as better for bone marrow.

              My OH has started on 3X BEP today, I am a bit worried as he is asthmatic but his lung function test was good.
              Care giver


              • #8
                I am three years into surveillance with stage 1 seminoma. Highly recommend you go to the Testicular Cancer Resource Center and join the will be able to share your situation with a host of others who have been through the spectrum of TC. You will quickly learn that you and I are very lucky!!!!!

                From my personal experience surveillance has been the perfect option....initially planned for radiotherapy and must have changed my mind a "hundred times" before opting for surveillance. If you decide on surveillance you MUST adhere to the testing protocol religiously.


                • #9
                  Good path are fortunate to catch it so early! RT or surveillance is definately a personal choice. Decide and don't look back. Are you comfortable with your oncologist?

                  With regard to recurrence, the NCCN just updated the guidelines to V1.2007 (link below) and if you haven't looked at it yet it's worth a read. I've posted a number of articles on the research library site on treatment for seminoma that may be useful to you as well.

                  Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


                  • #10
                    I will remember that quote...thanks....hang in there...Mary Ellen