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willgetoverit's treatment thread

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  • Scott
    I'm very glad to read the good news!

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  • willgetoverit
    an update

    2 months down, all's going well on post L-RPLND surveillance. Markers normal, Xrays normal.

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  • willgetoverit
    The TCRC suggests a once-a-month frequency for markers and chest X-ray post-RPLND. Here is the link:

    The sub-topic: "Pathological Stage I Nonseminoma - Treated with RPLND only"

    Now, I did go through the NCCN website and it suggests a once-in-two/three-month frequency. That's a lot of time difference.

    Am I missing something here?

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  • Fish
    Glad to hear your doing well. Back in 1988, and after a traditional RPLND, my urologist did chest x-rays and blood tests every month the first year, every 2 months the second, and every 3-4 months the third. The current NCCN guidelines seem to recommend (post-RPLND) chest x-ray and blood tests every 2-3 months the first year. So your doc is stretching things a bit, at least with the x-ray schedule. If you like him, just talk to him about it or print the NCCN recommendations and show them to him.

    Best wishes.

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  • willgetoverit
    started a topic willgetoverit's treatment thread

    willgetoverit's treatment thread

    Hi Folks,
    Here is my story...

    Discovered a lump on my right testicle on 07/30. Went to GP on 08/02 who almost almost almost misdiagnosed it(I could have been sitting with the lump for a much longer time!) but sanity prevailed and was directed to a ultrasound on 08/09. Met the urologist on 08/16, who broke *THE* news. I was stunned, but soon just decided to take it in my stride, and got a second opinion on 08/17. Orchiectomy done on 08/24, and a mad information explosion phase started.

    Pathology indicated 70% EC, 20% teratoma, 5% yolk sac and 5% chorio. No angiolymphatic invasion. CT scan negative, tumor markers back to normal. So, officially, I was now Clinical stage 1!Got a second opinion on the path,which confirmed the percentages. And then the trauma of deciding of whether RPLND or surveillance began.

    It was around the same time that I stumbled across this forum. And it's been a wealth of information out here. After googling through pages of information, I started leaning towards an RPLND, given the 20% teratoma in my tumor composition. Rationale: If I do have to undergo chemo tomorrow, then I wanted to lower my chances of having to come back for a post-chemo RPLND. And once it was RPLND, I had a tough time deciding if it's going to be the traditional nerve-sparing one or the much more controversial laparoscopic RPLND. I eventually ended up opting for the L-RPLND.

    I would like to share a few links that I came across which had an influenze in my decision making process. I would just be glad if it could be useful to someone else too!

    (*Note*: I believe #6 is dated 2002, but some surgeons do believe that the information concerning L-RPLND mentioned in this PDF is not entirely up-to-date as of 2006. I used some of the information mentioned as baseline information to ask questions to my surgeon, and he was more than pleased to share further details with me!)
    7. Also, please do go through Scott's thread on his experience with post-RPLND-lymphatic-fluid-collection on Scott, I am reposting a link to your thread here, which I feel was very useful to me and would imagine that it would be helpful to others considering RPLND. Hope thats k with you.

    On 09/28, I went in for my L-RPLND. From 4 days prior to my surgery, the surgeon did make sure that I went on a low fat diet. And I continued to be on a low fat diet till about 10 days after the surgery. (Please note, as I strongly feel the low fat diet is important). It's all worked well till now. It's been three weeks post L-RPLND now and I've been able to drive for over a week now! Went to the doctor couple days back and he confirmed a path 1 diagnosis!

    I am joining work tomorrow, and given all those numbers that I have, I am very well aware of the 20% probability of chest met sometime. But as of now, its the calm after the storm. I guess I'll cross that bridge when it comes, if it comes!

    One interesting fact: after my path 1 diagnosis, my uro insisted on a 3 monthly markers, and a chest X-RAY after 6 months!!! He is a nice guy, but I guess its time for me to fire him!

    And before I conclude, I cannot emphasize the role caregivers, moms,girlfriends,wives play during the recovery process.
    Here is a link that I thought would help all the concerned people to better understand the emotions that a TC patient might be going through -- not that it's rocket science but it does put things back in perspective:

    Hope all of it helps. For now, I am just so excited to get back to a normal life from tomorrow.

    Good Luck and God Bless!