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  • TC & Me

    After reading so many of your stories, I thought I would finally chip in and give some info about what has been happening to me in hopes that it might help someone.

    I'm a 26-year-old from Upstate NY; I found a suspicious lump on my left testicle the day before my birthday (6/28). Went to the ER, the doctor said it was probably a cyst. He prescribed ibuprofen and said it would go away.

    It didn't. A month later I was still finding that lump, and a second one had appeared not far away. I immediately called my primary doctor and set up an appointment. He told me not to worry, but that they would do an ultrasound, which happened the next day.

    The ultrasound was not encouraging, so I was sent to a local urologist, who recommended the radical orchiectomy, which again was done only a few days later.

    The pathology report indicated that it was in fact TC, composed primarily of the embryonal cell type, which had /just/ started to spread into the vascular tissue beyond the testicle. The urologist was very confident that this had halted the cancer. My CT scans were clear, and the tumor markers had all along been normal.

    However, since this type of tumor has a high (50%) chance of reappearance, he sent me to Dr. Sheinfeld at MSKCC for a consult on whether to do chemo, RPLND or observation.

    Dr. Sheinfeld recommended the RPLND as more of a prophylactic measure, since my markers still hadn't gone up and there was no indication of further cancer. I did consider observation, but he told me that the RPLND procedure would reduce my risk of return to low single-digit percentages, so I opted for that, which took place on 8/21 at MSKCC (room 512a). After six days, I was released. Pathology came back completely clear on all nodes they removed! (yay).

    A few days after the surgery, I still have some pain and discomfort in my lower back -- I'm still sleeping 3-4 hours at a time, and have to get up and walk around at least a few times a night, but I'm not taking the pain meds anymore, and I can at least spend a few hours attending classes and being active every day.

    For anyone contemplating RPLND: It hurts. Differently for each person, but Dr. Sheinfeld is the best out there. His post-op regimen is considerably tougher than others I've seen (I can't have more than 5g fat/day for four weeks), but it works. The number one thing I can say to you: walk. walk until it hurts and then take just a few more steps. If you get bored: Walk. I was doing laps in the hallways at 3 and 4am. You will feel so much better in the long run -- and it will get you out faster. I promise.

    Also: Take things in stride. The suppositories are going to be demeaning, the constant poking and prodding.. every nurse, doctor and orderly (or so it will seem) will want to look at your incision and make sure you are passing gas, or at least having some sort of bowel activity, all within earshot of your room-mate (unless you have a lot more money than I do). You will get annoyed, bored, frustrated, and more than a little tired of watching the bad TV. Joke with the nurses -- believe it or not, they do appreciate a little humor and easy-going attitude, since a lot of the patients there are going to be difficult.

    Bring a robe. Those rooms went from freezing cold to sahara conditions; I could walk around the building and would go from cold to warm before I finished a lap. This also helps with the hospital gowns. One gown by itself will leave your rear hanging out, but they will usually give you two, so that you can put one on normally, and the other on like a regular shirt, covering those parts that you'd rather not share, but sometimes they would forget after my showers and leave me somewhat vulnerable.

    As for me, I have a followup scheduled for 9/28 at the Kimmel Center, for a checkup, and probably bloodwork + CT scans, but Dr. Sheinfeld says that there's no reason for me to undergo chemo (which is a great reason to have done RPLND).

    If anyone has any questions, I'm more than happy to share my experiences

  • #2
    bunger:
    Welcome to the forum and congratulations on being cured.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

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    • #3
      Thanks for posting your story and congratulations!
      Lori and Jon
      Diagnosed 5/22/2006
      I/O 5/26/2006, Stage 3, Good
      Teratoma (Majority), Seminoma (10%), Yolk Sac
      3xEP then determined not working
      HDC w/stem cell transplant 8/16/06 to 9/25/06
      Chest and Neck surgery 10/9/06 - immature teratoma
      RPLND 11/16/06 - immature Teratoma
      2/29/2008 - markers continue to be normal!
      9/16/2008 - released from Dr. Einhorn's care

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      • #4
        hi

        yaaahhh....RPLND and all nodes clear....[unnecessary major surgery].

        I think 1-2 cycles of BEP or close surveillance are better approaches [no side effects,no major surgery,near 100%(for @ BEP) and 70%(surv) cure rate]. Why ? because EC has the ability to spread direct to remote sites, skipping the lymph nodes and forming ocult metastases. Thats why chemo is recomanded.
        OK. Now, lets hope your EC doesnt skipped lymph nodes and all will be fine.

        [by the way. After IO I was proposed to RPLND but, based on internet documentation I refused. It was the best option i've maked in my life.]
        [also, based on internet documentation, my chemo was reduced at my request from 4 cycles to 3 cycles of BEP (another lucky choose)].

        All the best
        Last edited by AdrianB1971; 08-31-06, 05:13 AM.
        2005-03
        Stage III EC 85% + Sem 15%
        AFP=2.6; HCG=10, 20,28 and rising
        FULL CAT scan:
        -abdominal lymph clear
        -subpleural lungs metastasis [bipulmonary lesions with diam <= 1cm]
        4 x BEP changed to 3 x BEP at my request
        from 2005-05....Surveillance

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