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What treatment to choose? 100% Embryonal Carcinoma, Clinical Stage 1a

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  • What treatment to choose? 100% Embryonal Carcinoma, Clinical Stage 1a

    Hi everyone,

    Just three weeks ago I was diagnosed with testicular cancer, and a little over 2 weeks ago I had an orchiectomy. The pathology report found a 2cm tumor (or rather, a few small ~0.5cm tumors) made up of 100% Embryonal Carcinoma (EC), with no evidence of LVI (or any other invasion). All blood markers (AFP, b-HCG, LDH, PLAP) before and after the surgery were normal, and the radiologist did not see any spread on the chest/abdominal CT. So except for the 100% EC, this all sounded good and puts me at Clinical Stage 1a.

    After being diagnosed I started reading the literature, and got a second and a third opinion. Now I have two doctors recommending active surveillance (estimating my risk of recurrence at 10-15% and 30%), and one strongly suggesting RPLND or Chemotherapy (estimating my risk of recurrence to be >50%). They‘re all experts on TC. I understand that there is no consensus on how important EC is as a risk factor, but this makes it difficult.

    I am leaning towards the active surveillance, since I would really like to avoid unnecessary treatment and the potential long-term consequences of it. However, the third opinion raised some doubts again. My doctors (outside the US), did not even mention RPLND as an option for me, so the choice is between adjuvant chemotherapy and active surveillance.

    I was wondering if anyone here was in a similar situation, and what you chose. How did you make the choice, and do you still feel it was the right one later on?

  • #2
    Hi there.

    Sorry you are going through this! My husband was almost 100% EC staged at 1b almost a year ago. He was not recommended RPLND as a adjuvant treatment either. From our understanding many doctors do not when you are dealing with EC since it can skip the lymph nodes, making it a major operation without a clear understanding of how much it will actually help.

    My husband decided to go with adjuvant chemo. It wasn’t easy to choose. Either option sucks, really. It comes down to your risk tolerance. His brother had TC 20 years ago, went on surveillance and relapsed. It was a hard road form him to get to be cancer free and my husband wanted none of that. With EC high relapse rate, his family history and being stage 1b he felt like surveillance would be just waiting around for 3 times the chemo rather than doing a third now and being done. It sucked and we worry all the time about long term consequences of treatment, but he would rather worry about the smaller exposure risks than the larger. He couldn’t have lived with himself if he chose surveillance and relapsed. Would have always felt like he could have prevented it.
    He wished he had felt comfortable with surveillance. If he had a different tumor type or perhaps no family history, he probably would have.

    Almost a year out now and he is still very confident that he made the right choice. He recovered from chemo well and it feels good to have relapse rate down to 2-5% now.

    Everyone has to make the choice that feels right to them. There really is no wrong answer. I will say if you chose adjuvant treatment you should do it as soon as possible. If there is a stray cancer cell, you can blast it before it has a chance to grow.

    You can find a lot of good posts on here about adjuvant treatment and EC. Searching them was very helpful to us.

    Whatever you choose you have excellent chances of cure
    2/7/18- Husband diagnosed
    2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
    3/12/18-4/1/18 Adjuvant BEPx1
    4/12/19- ONE YEAR ALL CLEAR

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    • #3
      Thanks a lot Melanie for sharing your husbands story! I’m glad to hear that I think he made the right decision. From what I‘ve found, having both LVI and EC together gives you a risk of 50-80% of recurrence... I think I would do the same in his situation. I am actually getting a second opinion on the pathology from someone with experience with germ cell tumors, to make sure that there is really no LVI.

      Did his doctors recommend the adjuvant chemo in his case?

      The long-term consequences are also what I‘m worried about the most. I think I can get through feeling terrible for a while, but I‘m scared of a less treatable cancer later. Or the cardiovascular changes many seem to have.

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      • #4
        His doctors didn't advocate for either Adjuvant BEP or surveillance. They just laid out the pros and cons of each and said that the cure rate remains the same either way you go, therefore it was up to him.

        He just had a feeling if he didn't treat it now he would relapse. So he chose a little chemo in order to avoid a lot of chemo. There aren't any real good studies out there in the long term effects of 1XBEP vs 3XBEP but from everything we did research and heard from the doctors the long term effects seem to be effected by the dose. So less chemo, less risk. But the idea that you are putting poison in your body unnecessarily is a hard thing to reconcile as well. It is sort of a Pandoras box if you will. Every options comes with equally strong pros and cons. It can make you crazy trying to figure out what is right. Either way you go, It is important to remember that most men who do have 3XBEP go on to live perfectly healthy lives without serious complications and your chances of a cure are nearly 100%

        There just in no way to know for sure what is best. Just trust your gut and jump into whatever you choose and try not to play the what if game. That is super hard though!
        2/7/18- Husband diagnosed
        2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
        3/12/18-4/1/18 Adjuvant BEPx1
        4/12/19- ONE YEAR ALL CLEAR

        Comment


        • #5
          Originally posted by melanie View Post
          But the idea that you are putting poison in your body unnecessarily is a hard thing to reconcile as well.
          Just as an aside, pre-chemo I knew it would be tough, but in your mind the chemo is "medicine". After going through chemo and the side effects, you realize that the medicines really are poisons - completely different than taking a bit too much advil or pain meds. But they work, and given my staging I most certainly would be terminally ill if chemo wasn't available!

          6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
          6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
          7/7/15: bHCG 56, AFP 42, LDH 322
          7/13/15: begin 4xEP, end 9/18/15
          10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
          10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
          4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
          4/20/16: RPLND @ IU - teratoma only!
          4/15/19: all clears up to this date!

          Comment


          • #6
            For sure! Very glad there is chemo! There is just no easy way out of a cancer diagnosis. The journey is hard but the destination can be great.
            2/7/18- Husband diagnosed
            2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
            3/12/18-4/1/18 Adjuvant BEPx1
            4/12/19- ONE YEAR ALL CLEAR

            Comment


            • #7
              Thanks Melanie! The problem is that my gut also isn‘t decided yet and changes its mind But I‘ve read a lot of stories on the forum, and I‘m not the first one agonizing over this... I feel like I should appreciate actually being able to choose my poison (literally), but it is a very hard decision.

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              • #8
                Hi there

                I'm based in the UK. And as someone who is finishing the first cycle of BEP this week, I can tell you that 1 cycle isn't anything to really be that afraid of. It isn't pleasant no denying it but honestly, I've had worse flu.

                Not sure if that helps you or not.

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                • #9
                  Thanks Samwise, I feel like all information on other people‘s experiences is helpful for me. Good to hear that your first cycle was bearable. The way you said it sounds like you have more ahead of you though... wish you all the best!

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