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Introduction recently diagnosed stage 2 non semminoma

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  • Introduction recently diagnosed stage 2 non semminoma

    Hi All

    just wanted to say hello and introduce myself.

    I had right orchiectomy three weeks ago due one of my two veg swelling to what seemed planet sized

    Got the results this Wednesday and didn’t get the good news I was hoping for which would have been a stage 1 semi.

    I was told I have stage 2 99 percent embryonal 1 percent teratoma which has spread to the lymph nodes of the abdomen.

    I guess the corona situation just wasn’t quite high stakes enough for me so I have upped the ante LOL

    I start chemotherapy next Wednesday 4xBEP which sounds like it’s going to be hoot.

    just wanted to make a post as this site and the experiences of other have been extremely informative and comforting going through all this over the last 4 weeks.

    I look forward to been able to pay that forward one day but for now hello and it’s nice to meet you all although the circumstances could surely be better for us all.


  • #2
    Sorry to hear that deekz, sometimes the bad news come whether you are ready or not.Why are they going to 4xBEP? That is normally only used for advanced cases.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP


    • #3
      Hi Davepet

      nice to meet you. Could be me who is getting confused can’t quite make the writing out on the doctors report and was quite an overload of info on the day. I thought they said 3 but also said it would be a 12 week course so it could be me who worked it out wrong because I thought 3 would take 9 weeks?



      • #4
        Hi deekz, sorry to welcome you. Yes, BEPx4 is overkill for Stage II disease. This is reserved for Stage III and intermediate/poor risk cases, which this is NOT.

        The correct/best treatment would be BEPx3, which is 9 weeks. Depending on whether Stage II A, B, or C, you might also be a good candidate for the RPLND surgery. This is not a good time for one's immune system to be going down for a full week after each round of chemotherapy. How well isolated can you keep yourself? Depending on exact sub-stage, the RPLND could possibly be curative at this point also, and save you the trouble of chemo, or reduce the amount of chemotherapy that you need. There's lots to consider here. You might want to check out my blog on COVID19 considerations for testicular cancer patients. | @K2xxSteve on Gab
        (Social Media with actual privacy, cancer support groups, encrypted secure chat & more)

        Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
        My Survivorship Thread | All of my Blogs


        • #5
          Hi S P nice to meet you.

          I have to admit some of it didn’t seem to add up but due to Easter bank holidays don’t think I will be able to speak to oncology team till Tuesday which is the day I am due to go get my PICC line fitted first thing in the morning.

          I had thought the RPLND would of been a better option given the current coved situation but I am from the UK and my research has shown that chemo is generally the first treatment on this side of the pond and the RPLND is not offered as frequently. Although if I am right the RPLND gives higher risk of complete infertility as opposed to the chemo?

          kind of important as I have yet don’t have kids although I have made deposits at the bank lol.

          appreciate the responses and advise really does help.



          • #6
            The biggest risk to fertility with the RPLND is in the post-chemotherapy setting, where it's a far more difficult surgery. Fertility can almost always be preserved in the pre-chemotherapy setting when done by an RPLND expert. If you're Stage IIA, this is worth considering, but if Stage IIB/C with mostly embryonal carcinoma, BEPx3 is probably the best course. Just make sure you can stay well isolated from others during the off weeks, which is when your immune system will be down. Never a good time to get cancer, but geez....
   | @K2xxSteve on Gab
            (Social Media with actual privacy, cancer support groups, encrypted secure chat & more)

            Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
            My Survivorship Thread | All of my Blogs
            ONTACT ME ANYTIME!


            • #7
              When I asked the doctor she told me the classification was 2B. I believe that means the nodes have gone above 2cm and she confirmed the CT scan showed a growth in the area. I’m touching wood that it is the embryonal that has spread as I think the risk of post chemo surgery will be if the teratoma has spread also but she told me it was only 1% teratoma whatever that means in the scheme of things.

              As for isolation I live with my dad who is also vulnerable so we have been shielding heavily anyway with only visits from my brother to drop off shopping but he is immune suppressed also (great family genetics as you can see lol)

              I have told dad he can’t leave the safe zone ie the front door of the flat and once I start chemo shopping will have to be left outside and no one at all can enter the flat any more beside my dad and me. Luckily I have a couple of N99 masks and may be tempted to write on my jumper informing people to stay well away from me hah.

              the corona is an added stress in the whole situation but kind of stuck between a rock and a hard place as given that’s its embryonal the quicker I can start a treatment the better and less chances of it deciding to take a stroll to other parts of the body.

              thanks again for the replies



              • #8
                Hey Deekz sorry to hear your also going through this aswell, I should be starting chemo this week my treatments been delayed due to mandatory covid testing before treatment in order to protect those with already suppressed immune systems which makes sense but I sure wish we had access to faster results!


                • #9
                  Hi Roly

                  Nice to meet you.

                  Sorry to hear about your treatment delays but getting tested should at least give you some peace of mind before
                  strting the chemo.

                  I would have more chance of winning the lottery than getting tested in the UK as we are sucking at that ATM.

                  Steve has a really useful blog on chemo and the corona.

                  But for me I have realised whenever I start to panic about corona of the huuuuuuuge list of side effects associted
                  with chemo etc they are all nothing but if but's and maybe's compared to the thing already inside me which is absolutely
                  trying to do me damage.

                  What is a bit of a head mash is the fact that having recovered from the orchiectomy now I feel pretty great. Kinda
                  weird that the treatment is the thing thats gonna make us feel ill.

                  But I am grateful I caught it and was lucky I banged my vegatables on some gym equipent which led to a few weeks of
                  tenderness before swelling compelling me to go to the GP.

                  And I would feel like a POS if I was moping around feeling sorry for my self as there are people far less fortunate who
                  get given much worse diagnoses daily.

                  Stay strong Stay safe and to all the forum contributors who read this again a massive thanks because this resource is
                  definately a massive source of positivety and strength.



                  • #10
                    At 2B, are you sure you are not receiving 4xEP? That would make more sense if you remember 4 rounds.
                    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!
                    10/22/19: all clears up to this date!