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Tying to figure things out post orchiectomy

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  • SKK
    started a topic Tying to figure things out post orchiectomy

    Tying to figure things out post orchiectomy

    Hey everyone, I'm new here but already finding the forums very interesting and helpful. Still trying to learn all the lingo so I can better understand my situation and everything that I am reading.

    Things started for me over a year ago. Initially I was told it was epididymitis, but after a year or so when a lump started to develop my doc ordered the ultrasound and sent me to a urologist. That's where I found out it was very likely I had testicular cancer. Unfortunately I didn't really care for that doctor so I waited another month or so to get a second opinion. Basically they told me the same thing and I ended up having my orchiectomy just over a week ago. The pathology report came back yesterday and said it was a T1 seminoma, which they said is the best thing I could have hoped for! I go in Monday for CT scans and to find my course of treatment. I'd like to go into this knowledgeable so that I can make the right decision on chemo/radiation/future surgeries, but it is all pretty confusing right now. Thank you all for reading my story and please reply with any advice or information you think may help. I'll leave a little timeline, and all of the information I have right now.

    12/11/2014 - First urology visit - told it was likely cancer and needed orchiectomy - was told tumor markers were "normal"
    01/08/2015 - Second urology visit - scheduled orchiectomy
    01/16/2015 - Left orchiectomy - BHCG <5, AFP 2.76 - T1 seminoma

    I'm feeling pretty positive about things right now, still a little discomfort from the surgery but I really just want to do everything in my power to put this all behind me. I think at this point, the best outcome would be frequent scans to make sure there is no recurrence?

  • SKK
    replied
    Thanks Daniel!

    Leave a comment:


  • Smartie
    replied
    Thrilled to hear your news, Daniel.

    Leave a comment:


  • Davepet
    replied
    Definitely good news & I would have taken that path had it been possible for me.lease keep us posted as you chalk up one "all clear" after another.
    Dave

    Leave a comment:


  • SKK
    replied
    Thank you so much Conor and Daniel! I really was fortunate. And yes, my doctor was great. So happy I went for a second opinion and found him.

    Leave a comment:


  • Conor1988
    replied
    Wonderful news! Congratulations! Your doctor sounds fantastic and I am glad you are comfortable and happy with your decision for surveillance, as that is very important! And I agree with Daniel 100%.

    Leave a comment:


  • Daniel335
    replied
    Awesome news SKK! Completely agree withy the route you are taking with surveillance. You never wanna go over kill and have treatments done that on don't fully need. I did chemo and RPLND but that was because I needed them 100%. Time to celebrate the good new man! 😎

    Leave a comment:


  • SKK
    replied
    Well I got some great news this week! My CT scans came back all clear and there is no evidence that the cancer has spread outside of the testicle they removed. I am going with my Dr.'s recommendation and taking the surveillance route. I don't want to put my body through any treatments that are unnecessary at this time. The way he explained it was that right now there is about a 17% chance for recurrence at worst. So if he treats me with chemo or radiation there's about an 83% chance that he would be over-treating me. With all of the possible side effects from those treatments, that was enough for me. So it looks like I just have a lot of CT scans, blood work and X-rays in my future.

    Leave a comment:


  • SKK
    replied
    They are dated the same day. Pre-op post-op I suppose.

    Leave a comment:


  • JeskiM69
    replied
    SKK,

    What were the dates between those test ? I assume one was before the Orch. and one was after.

    Make sure you ask about it today.

    - Matt

    Leave a comment:


  • SKK
    replied
    Thanks Matt. I checked my chart and it looks like I've had 2 LDH readings. One at 490, and then later 388. I go in this afternoon, so I'll know more soon.

    Leave a comment:


  • JeskiM69
    replied
    SKK,

    I agree with what the other are saying.

    I do want to add one thing though. Seminoma does not produce AFP. Your bHCG is normal. You may want to ask them to add LDH into your blood tests. That's the only "marker" that I have to go on as my Seminoma never produced much bHCG. The only thing that sucks about LDH is that it is very non specific and I've had a false alarm with it already while on my surveillance.

    - Matt

    Leave a comment:


  • SKK
    replied
    Great, thanks for clearing that up Daniel. I'll make sure to see an oncologist. I sure hope that I am already cured!

    Leave a comment:


  • Daniel335
    replied
    Hey there SKK,

    It's my understanding that the RPLND isnt really performed for seminoma. It's done more for non seminoma. Since you're at stage 1, I wouldn't be too concerned with more treatment options. You may already be cured. I would still see an oncologist that specializes in testicular cancer. The title of urologic oncologist just signifies that they are qualified to perform cancer related surgeries. Such as the RPLND for testis cancer. But their specialty is still urology.

    Leave a comment:


  • SKK
    replied
    I was just checking my doctor's profile. It says that he specializes in Urologic Oncology, so I wonder if they plan on me just dealing with him.

    Leave a comment:

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