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

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  • 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, 08:40 PM.
    Age 22 at diagnosis
    2-26-2016- Noticed lump, went to urgent care, doxycycline for 10 days.
    3-21-2016- Urology appointment, ultrasound ordered, suspected TC
    3-22-2016- Ultrasound confirms solid mass left testicle
    3-30-2016- Diagnosis of TC, LDH 233, AFP 2.7, HCG 0.7, CT Clear
    4-14-2016- Left radical inguinal orchiectomy
    4-22-2016- 100% Embryonal Carcinoma, Extensive LVI, Margins clear, Stage 1B
    5-6-2016- PICC line placed
    5-9-2016- Start 2x BEP adjuvant chemo, markers normalized

  • #2
    Sorry to welcome you to the forum , I'm new here too

    I think the next step is to get your post I/O tumor markers drawn. My urologist told me that they like to do the RPLND when the embryonal component is greater than 40%, but my markers kept rising so it was chemo for me first. Also start thinking about banking sperm. I started banking from day one and was thankful because I need to start chemo therapy very quickly.
    Last edited by jaygatz4213; 04-24-16, 01:29 PM.
    Dx March 21 2016
    Right Orchiectomy march 25 2016
    60% embryonal 35% yolk sac 5% seminoma
    positive node on CT 1.4X1.3cm stage 2a markers rising, HCG 2300 AFP 25
    Started 4xEP april 2016
    Finished chemo July 2016, markers normal, complete radiographic remission
    RPLND MSKCC Aug 2016, removed something like 60 nodes all negative but one with teratoma
    Surveillance

    Comment


    • #3
      Originally posted by jaygatz4213 View Post
      Sorry to welcome you to the forum , I'm new here too

      I think the next step is to get your post I/O tumor markers drawn. My urologist told me that they like to do the RPLND when the embryonal component is greater than 40%, but my markers kept rising so it was chemo for me first. Also start thinking about banking sperm. I started banking from day one and was thankful because I need to start chemo therapy very quickly.
      Thankfully, I've already done the sperm banking thing a few times.

      So the RPLND is more than likely what they're going to recommend to me? The oncologist made it sound like I would have a choice between the three, kind of like they were all equal in this situation.
      Age 22 at diagnosis
      2-26-2016- Noticed lump, went to urgent care, doxycycline for 10 days.
      3-21-2016- Urology appointment, ultrasound ordered, suspected TC
      3-22-2016- Ultrasound confirms solid mass left testicle
      3-30-2016- Diagnosis of TC, LDH 233, AFP 2.7, HCG 0.7, CT Clear
      4-14-2016- Left radical inguinal orchiectomy
      4-22-2016- 100% Embryonal Carcinoma, Extensive LVI, Margins clear, Stage 1B
      5-6-2016- PICC line placed
      5-9-2016- Start 2x BEP adjuvant chemo, markers normalized

      Comment


      • #4
        Hey jared,

        Sorry to welcome you to the forum.

        I was diagnosed too with stage I pure (100 %) embryonal carcinoma.

        I choose surveillance because my tumor was small (1.7 cm) and lymphovascular invasion was negative, as well as other margins.

        Still, embryonal carcinoma cells are tricky, since the presence of pure EC with or without LVI seems to be associated with a 50 % relapse rate anyway.

        Unfortunately, I am now relapsing after 4 months of surveillance and prepare to get chemo soon to kick cancer out.

        So, here are the 3 treatment options :

        1) Surveillance : Based on the fact that orchiectomy alone have cure 50 % of patients in your situation.
        2) RPLND : Since you have pure EC, you'll have a 30 % relapse rate if you choose this option. RPLND tends to work less well with pure EC.
        3) 1 cycle of BEP chemo : Overtreats 50 % of patients but lower the relapse rate to 2 - 3 %. Associated with late toxicity compared to surveillance.

        So, here's the key issue when it comes to the management of high risk population with stage 1 non-seminoma : do you have treatment unnecessarily 50 % of the time or do you run the 50 % risk of needing more agressive treatment in the future (that is : 1/2 patient will relapse and 1/8 patient will need post-chemotherapy RPLND)? We simply just don't know to this day which patients will relapse or not in this high-risk population.

        Each of these strategies have pros and cons. The better treatment option is the one you are comfortable with and you have no regret.

        I choose surveillance for me, I relapsed, but if it was to re-do, I'll choose surveillance again, because I was comfortable with that.

        Good luck, Jared.

        Don't hesitate if you have other questions,

        Jean-Philippe
        December 15, 2015 : Right I/O. Markers normal.
        December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
        January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
        February 2016 : Markers normal.
        March 2016 : Markers normal.
        April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
        April 25, 2016 : Happy birthday ! Relapsed confirmed.
        May 2, 2016 : BEP x 3 begins.
        July 3, 2016 : BEP x 3 ends.
        July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
        December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.
        June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.

        Comment


        • #5
          Jared - My husband story is similar - see story in my signature - he starts 1xBEP tomorrow morning - we didnt like the odds of it coming back and having to do so much more chemo - and the surgery sounds rougher than the 1 round of chemo. Good luck with your decision.
          Maggie
          Husband dx Jan 27 2016
          Nonseminoma, Pure Emryonal, LVI
          Stage 1B negative margins LDH 178 AFP 4.0 hcg <1
          All CT Scan clear
          hcg was slightly elevated - turned out to be stressed pituitary gland - leveled itself off after about 5 weeks.
          Starting 1xBEP on 4/25/16

          Comment


          • #6
            With your "extensive" lymph-vasc invasion, I would guess your relapse rate is higher than the typical 50% number given for stage 1b non-seminoma. I would do either an RPLND or 1 x BEP. I would try to avoid surveillance given your high relapse rate which would possibly mean 3 x BEP or 4 x EP. These are very difficult treatments. The RPLND and 1 x BEP are not equally effective. They have different pros and cons.
            Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

            7/1/2015: felt tiny lump on side of R testicle
            7/30/2015: Ultrasound shows 2 intra-testicular masses.
            7/31/2015: tumor markers normal, CXR clear
            8/5/2015: R orchiectomy
            8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
            8/14/2015: CT abdomen/pelvis clear, Stage 1b
            8/24/2015: started 1 x BEP

            Comment


            • #7
              Originally posted by RJKD View Post
              With your "extensive" lymph-vasc invasion, I would guess your relapse rate is higher than the typical 50% number given for stage 1b non-seminoma. I would do either an RPLND or 1 x BEP. I would try to avoid surveillance given your high relapse rate which would possibly mean 3 x BEP or 4 x EP. These are very difficult treatments. The RPLND and 1 x BEP are not equally effective. They have different pros and cons.
              What would some of those pros and cons be by chance?

              I think as of now I'd rather do one round of BEP and hopefully get rid of it. I don't know if an RPLND would do the trick...
              Age 22 at diagnosis
              2-26-2016- Noticed lump, went to urgent care, doxycycline for 10 days.
              3-21-2016- Urology appointment, ultrasound ordered, suspected TC
              3-22-2016- Ultrasound confirms solid mass left testicle
              3-30-2016- Diagnosis of TC, LDH 233, AFP 2.7, HCG 0.7, CT Clear
              4-14-2016- Left radical inguinal orchiectomy
              4-22-2016- 100% Embryonal Carcinoma, Extensive LVI, Margins clear, Stage 1B
              5-6-2016- PICC line placed
              5-9-2016- Start 2x BEP adjuvant chemo, markers normalized

              Comment


              • #8
                Here are some links to a list of pros/cons that I've written about. I hope this helps!

                1 x BEP:
                http://www.tc-cancer.com/forum/forum...-non-seminomas

                Primary RPLND:
                http://www.tc-cancer.com/forum/forum...b-non-seminoma
                Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                7/1/2015: felt tiny lump on side of R testicle
                7/30/2015: Ultrasound shows 2 intra-testicular masses.
                7/31/2015: tumor markers normal, CXR clear
                8/5/2015: R orchiectomy
                8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                8/14/2015: CT abdomen/pelvis clear, Stage 1b
                8/24/2015: started 1 x BEP

                Comment


                • #9
                  Originally posted by RJKD View Post
                  Here are some links to a list of pros/cons that I've written about. I hope this helps!

                  1 x BEP:
                  http://www.tc-cancer.com/forum/forum...-non-seminomas

                  Primary RPLND:
                  http://www.tc-cancer.com/forum/forum...b-non-seminoma
                  So what could be the difference between a 2x BEP regimen like I've seen for this sort of thing, or just a 1x? Is there actually something saying its better?
                  Age 22 at diagnosis
                  2-26-2016- Noticed lump, went to urgent care, doxycycline for 10 days.
                  3-21-2016- Urology appointment, ultrasound ordered, suspected TC
                  3-22-2016- Ultrasound confirms solid mass left testicle
                  3-30-2016- Diagnosis of TC, LDH 233, AFP 2.7, HCG 0.7, CT Clear
                  4-14-2016- Left radical inguinal orchiectomy
                  4-22-2016- 100% Embryonal Carcinoma, Extensive LVI, Margins clear, Stage 1B
                  5-6-2016- PICC line placed
                  5-9-2016- Start 2x BEP adjuvant chemo, markers normalized

                  Comment


                  • #10
                    There are studies that show 2 x BEP is better. Generally, 1 x BEP should bring you to a 3% relapse risk. 2 x BEP would likely get you to a 1% relapse risk. Every expert TC oncologist that I've read about recommends 1 x BEP in your case. They would rather undertreat 2% of people than overtreat the 97% of people that will get away with 1 cycle.
                    Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                    7/1/2015: felt tiny lump on side of R testicle
                    7/30/2015: Ultrasound shows 2 intra-testicular masses.
                    7/31/2015: tumor markers normal, CXR clear
                    8/5/2015: R orchiectomy
                    8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                    8/14/2015: CT abdomen/pelvis clear, Stage 1b
                    8/24/2015: started 1 x BEP

                    Comment


                    • #11
                      Originally posted by RJKD View Post
                      With your "extensive" lymph-vasc invasion, I would guess your relapse rate is higher than the typical 50% number given for stage 1b non-seminoma. I would do either an RPLND or 1 x BEP. I would try to avoid surveillance given your high relapse rate which would possibly mean 3 x BEP or 4 x EP. These are very difficult treatments. The RPLND and 1 x BEP are not equally effective. They have different pros and cons.
                      With pure embryonal carcinoma, LVI seems to be a very small risk factor compared to pure EC according to data at PMH in Toronto and MSKCC in NYC. Here's the study by Sheinfeld at MSKCC : http://www.sciencedirect.com/science...22534705631187

                      I have found recently that about 75 % of clinical stage I with pure EC have micrometastasis, LVI or not ! Still, the relapse rate seems to be around 50 % in clinical studies, LVI or not.

                      RPLND will have the clear advantage to pathologically identified what's going on. Still, these studies (http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract ; http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract) shows that about 30 % of patients with EC-predominant and LVI will relapse and be exposed to 2 treatment modalities (RPLND and chemo) and their respective toxicities. However, in the Sheinfeld study, relapse rates are much lower that the 20 - 30 % reported in the above studies.

                      As for 1 x BEP, I'm concerned about underkilling cancer cells which can develop some resistance if exposed to subtherapeutic chemo, like bacteria in a way. My oncologist told me this when I was considering BEP x 1 for me.

                      TC has always been treated according to stage, but some special circumstances should be taken into account. In my opinion, pure EC reacts differently than other NSGCT.

                      To be honest, finally, Jared, I don't know what will be the optimal treatment selection for you.

                      What we know, however, is that with surveillance, RPLND, or BEP x 1, you'll have a 99 % 5-year survival rate.

                      RJKD or another, your thoughts ? Always a pleasure to discuss those clinical data with you, guys.

                      Jean-Philippe
                      December 15, 2015 : Right I/O. Markers normal.
                      December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
                      January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
                      February 2016 : Markers normal.
                      March 2016 : Markers normal.
                      April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
                      April 25, 2016 : Happy birthday ! Relapsed confirmed.
                      May 2, 2016 : BEP x 3 begins.
                      July 3, 2016 : BEP x 3 ends.
                      July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
                      December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.
                      June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.

                      Comment


                      • #12
                        Assuming nothing changes -- looks like you'll have a choice of 1 of the 3 options discussed. I was also in this situation and elected surveillance - unfortunately, I ended up going through full blown/first line chemo (4xEP) about 6 months later with a relapse. This is just my opinion based on my experience so take it for what it's worth - I was comfortable with the decision I made to go with surveillance and don't give a lot of thought to the "what ifs..", 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. For me (and everyone's experience is different), round 1 of chemo was relatively easy and uneventful - I carried on a pretty normal existence without too many side effects and bounced back quickly; round 2 was pretty bad and rounds 3 - 4 were the next level of hell for me. We're all given a short window of time to make these important decisions, so try to collect as much info as you can, make the one you think is best for you, and go with it for better or worse. Hopefully for you and everyone else here, it ends up for the better (and thankfully for most of us it does).

                        Comment


                        • #13
                          I just want to second Bexler's opinion.

                          I had a brief opportunity of getting adjuvant chemo or radiation before we realized that I was already a Stage 2. Having experienced the heavier front-line chemo treatments and if I could go back in time (while keeping my knowledge); I believe I would have gone with adjuvant radiation to lower my risks. Why ? Because Seminoma (in the earlier stages) is still very curable with radiation.

                          Cycle 1 of BEP was pretty easy, so I thought at the time...and still do. Cycle 2 I thought was going pretty well....until we moved to a new house in the 2nd week and I then got put on Neupogen (which messed me up)...so I wasn't recovered very well going into cycle 3. Cycle 3 was terrible, it sent me deep down the rabbit hole !

                          I have a healthy respect for chemo, but I would never, ever want to do more of it if I can avoid it.

                          Not trying to scare or dissuade you. Just saying that if could have a redo I may have gone with adjuvant treatments...but of course me being me, I would still worry if I under treated it or not,

                          You must do what is right for you and yours at this time.

                          - Matt
                          Last edited by JeskiM69; 04-26-16, 09:44 PM.
                          March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
                          March 13th: Left IO 100% Classic Seminoma
                          6.3 x 5.1 x 3.8 cm, no invasion of anything
                          LDH never fully normalized
                          Stage: IS
                          Watchful Waiting
                          May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
                          May 12th: started 3xBEP
                          Neupogen during Cycle 2 and 3
                          July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
                          August 4th: Post Chemo CT/PET scan
                          September 4th: Port removed
                          Jan 9th 2019: 4.5 YEARS ALL CLEAR !

                          Comment


                          • #14
                            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

                            Jan, 1975: Right I/O, followed by RPLND
                            Dec, 2009: Left I/O, followed by 3xBEP

                            Comment


                            • #15
                              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.
                              Age 22 at diagnosis
                              2-26-2016- Noticed lump, went to urgent care, doxycycline for 10 days.
                              3-21-2016- Urology appointment, ultrasound ordered, suspected TC
                              3-22-2016- Ultrasound confirms solid mass left testicle
                              3-30-2016- Diagnosis of TC, LDH 233, AFP 2.7, HCG 0.7, CT Clear
                              4-14-2016- Left radical inguinal orchiectomy
                              4-22-2016- 100% Embryonal Carcinoma, Extensive LVI, Margins clear, Stage 1B
                              5-6-2016- PICC line placed
                              5-9-2016- Start 2x BEP adjuvant chemo, markers normalized

                              Comment

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