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My Story- 100% Embryonal Carcinoma.. What's next?

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  • jgfeiner
    started a topic My Story- 100% Embryonal Carcinoma.. What's next?

    My Story- 100% Embryonal Carcinoma.. What's next?

    Hey everyone!

    Been lurking in the shadows of this forum for a little while... Now that I have more info, I figured it was time to fully get into all this.

    Anyway, all started on February 26, 2016- Noticed a lump after having a little pain down there, coupled with watching a video online where "Deadpool" tells you to check yourself down there, because "the alternative is NOT an option". Went into an urgent care expecting an ultrasound, but instead got antibiotics to clear up an "infection". Close, but not really. Wasn't until March 21 that I got into an actual urologist and had the ultrasound the next day. Of course, found a solid mass, and left orchiectomy scheduled.

    The surgery was April 14, 2016, and everything went well. Recovery hasn't been that bad, but a couple days ago I got my results.

    My first blood work was on March 22, and was as follows...
    LDH- 233 U/L (RR: 135-225)
    AFP- 2.7 (RR: 0-15.0)
    HCG- 0.7 (RR: 0.0-3.0)

    The U/S showed a solid mass on my left testicle, and nothing unusual on the right.

    The CT I had taken showed no metastasis anywhere, all clear.

    The pathology report:
    Embryonal carcinoma- 3.2 CM in greatest dimension
    Univocal
    Confined to testis
    Extensive Lymphovascular Invasion
    Margins Uninvolved, <0.1cm from tunica vaginalis margin
    Intratubular germ cell neoplasia
    Epididymis and spermatic cord negative for malignancy

    Pathologic stage: pT2, pNX
    Tumor mass: 3.2 x 1.9 x 1.8 cm

    Anyway, after all that, now I have the big decision. I haven't met with my oncologist yet, but he mentioned my three options over a phone conversation, which were RPLND, surveillance, or some chemo. I've been going over it all in my head, but obviously, not having dealt with this before I have no idea.. I think I'm leaning towards more of the chemo option, even though maybe I could just wait and see. I just don't feel comfortable waiting around for something else to pop up, when potentially I could just knock this beast out once and for all.

    Anyone who could help me would be very much appreciated! I think this forum is awesome, it actually so far has really helped me keep my nerves under control! Sorry for sort of the long post, just figured I'd get the full story out!

    Thanks in advance! Hope to speak with some of you soon.

    Jared
    Last edited by jgfeiner; 04-24-16, 09:40 PM.

  • Davepet
    replied
    I couldn't put up with the mangy dog look, bald was better to me.

    Leave a comment:


  • biwi
    replied
    Originally posted by Davepet View Post

    I didn't mess around. Second day of hair falling out & I shaved it. Why put off the inevitable?
    I figured it would fall out a little slower once it started coming out, and I wanted to get used to my shorter hair look haha.

    Leave a comment:


  • Davepet
    replied
    Originally posted by biwi View Post
    Day 17 I noticed some hair coming out. Day 18 i noticed quite a bit coming out in the shower, and I about 95% clogged the shower drain lol. So day 19 (friday) i had my wife give me a #3 buzzcut. Then on day 20 she gave me a #1 buzzcut since it was still thinning
    I didn't mess around. Second day of hair falling out & I shaved it. Why put off the inevitable?

    Leave a comment:


  • biwi
    replied
    I felt like mine took a long time to fall out, but it was right around the normal time. I can't remember exactly, but I think it was right before the beginning of the second cycle.

    edit: found it in my notes:
    Day 17 I noticed some hair coming out. Day 18 i noticed quite a bit coming out in the shower, and I about 95% clogged the shower drain lol. So day 19 (friday) i had my wife give me a #3 buzzcut. Then on day 20 she gave me a #1 buzzcut since it was still thinning

    Leave a comment:


  • Davepet
    replied
    Originally posted by jgfeiner View Post
    other than that, I still have my hair... Surprisingly.
    A bit surprising, mine started to fall out around the beginning of my second bleo-only week, so I'll be surprised if yours isn't gone before next week starts.

    Dave

    Leave a comment:


  • RJKD
    replied
    Nice!! After 2 x BEP, you're almost certainly cured. The ringing in the ears will be temporary. The hair should fall out soon.

    Leave a comment:


  • jgfeiner
    replied
    Just another update..

    Cycle 1 of my 2x BEP is finally done! Just one more to go.

    Just a tiny bit of ringing in the ears, but other than that, I still have my hair... Surprisingly.

    My WBC's have went low this week, so I'm avoiding crowds like the plague. Anyway, all is going well so far! Just hoping to power through another long week, finish this up, and get back to work and my normal life! We'll see I guess.

    Leave a comment:


  • thetaguru
    replied
    Good luck, had 100% EC myself but by the time I caught it, I had some enlarged lymph nodes and a spot on my lung so I went through 3xBEP. The one good thing about EC is that while it is aggressive, it is very responsive to chemo. 3 and half years later and still all clear.

    Leave a comment:


  • jgfeiner
    replied
    Originally posted by RJKD View Post
    I would probably go for 1 cycle BEP as that should be sufficient. But 2 is not an incorrect choice, especially since you have "extensive LVI". Sounds like you're a relapse waiting to happen if you don't do adjuvant, but that's just my take on it.
    I think with the "extensive" aspect, the doc and me were in agreement that I might as well be cautious and just knock it out. I only wanna go down this road once for sure.

    Seemed to be a good plan!

    Leave a comment:


  • RJKD
    replied
    I would probably go for 1 cycle BEP as that should be sufficient. But 2 is not an incorrect choice, especially since you have "extensive LVI". Sounds like you're a relapse waiting to happen if you don't do adjuvant, but that's just my take on it.

    Leave a comment:


  • jgfeiner
    replied
    Well guys, an update; met with the oncology doc yesterday.

    Starting BEP x2 on Monday. Having a PICC placed on Friday. Too many sticks would get to be way too old, and this just seems easier. A port is probably a little overkill for 2 cycles.. I don't know.

    Even being a nurse and having seen a PICC and central line placed dozens of times, still a little freaky!

    Anyway, just another hurdle to get over!

    Jared

    Leave a comment:


  • jpboucher
    replied
    Jared, if you're leaning toward chemo, then go and charge into it !

    As I said, the better decision you can take is the one you are comfortable with and have no regret.

    Truly wish you to take this road only once and never look back.

    All the best,

    Jean-Philippe

    Leave a comment:


  • jgfeiner
    replied
    Originally posted by Davepet View Post
    I wonder how many of life's decisions we all would have made differently if we just knew then what we know now? Unfortunately, that isn't possible, so best to not kick ourselves over"what if". How much easier it would be if the decision was 3xBEP now or surveillance with 3xBEP if relapse happens.That would be a no brainer, wouldn't it?

    Dave
    Good thing we have this forum then! Just trying to get everyone's take on it!

    I think at this point I'm definitely leaning toward chemo. Just wanna take this road once, and hopefully only once! I think I would go nuts just waiting around.

    Leave a comment:


  • Davepet
    replied
    Originally posted by bexler View Post
    but if I was given the choice again knowing what I know now, I would choose the RPLND or adjuvant chemo ( 1 x BEP, etc.) to improve my odds of not needing 3xBEP or 4xEP.
    I wonder how many of life's decisions we all would have made differently if we just knew then what we know now? Unfortunately, that isn't possible, so best to not kick ourselves over"what if". How much easier it would be if the decision was 3xBEP now or surveillance with 3xBEP if relapse happens.That would be a no brainer, wouldn't it?

    Dave

    Leave a comment:

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