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  • New and looking for similar experiences

    Hi All,

    Not the terms I usually want to meet people under, but here we are. A quick history:
    3/15 - Pain in the area. It's swollen. Trip to the ER.
    3/17 - "You have cancer." 97% embryonal carcinoma, choriocarcinoma 3%. lymphovascual invasion present. Chest xray negative, abdominal CT negative. Spermatic cord clean.
    3/27 - Right I/O
    4/10 - tumor markers plummet
    4/17 - AFP continues to plummet, HCG from 10 to 12.

    So the obvious concern is that my HCG went up. Urologist said it could be a false positive from the test, or that I'm just naturally producing more. My 4/24 blood test will confirm that. This definitely pushes back the L-RPLND I was going to have.

    So I have two possible scenarios, and questions regarding both.

    1. Chemo. I haven't been referred to oncology and my urologist and I haven't even really discussed it. I have no experience with chemo. I hear that its "come a long way" but I'm still clueless. How long is a round of chemo? What can I expect from the type of chemo (BEP, I'm reading) I'd be receiving? Outside of fertility concerns, what are long-term affects I should know of?

    2. RPLND. This has been the topic of discussion since the first test showed my tumor. 30% chance or reoccurence/spread, as I'm told. As I understand it, the procedure would be done laparoscopically at first. A quick lab run of the lymph nodes removed will detect (to a degree of confidence) whether there is cancer present. If not, I'm closed up with 6 quarter-sized holes in me. If cancer is present, another surgeon would step in, connect the dots, and open me up for open RPLND. I'm essentially hoping to wake up with 6 completely unnecessary holes in me. If anyone that has gone through the procedure would confirm/correct, I'd really appreciate it. Also, what kind of recovery did you experience? I guess the best would be to compare it with your I/O recovery. RPLND would likely require a night or two in the hospital until I ambulate properly, but I'm more concerned with the pain management afterwards. For me the first two nights after I/O were miserable. I'm not a back sleeper so it was tough to fall asleep and waking up 4 times the first night to go pee was insultingly painful. I was given percocet to take home but meds don't really affect me much and I'm not going to take stupid strong narcotics. I'd rather deal with the pain.

    Medical talk out of the way, I'm concerned about my fertility more than anything. It doesn't matter what cures me. Both will. When my urologist called and told me about the HCG being a little higher, I joked and said "maybe I'm just pregnant." We both laughed. I say that to ask that I'm asking for knowledge and not out of fear. I'm not afraid of this. I'd appreciate responses that are blunt and straightforward.

    ​Thanks all!

  • #2
    I want to comment quickly on your relapse rate. You have a 50% relapse rate, not 30%. You have 3 choices, RPLND, surveillance, or 1 x BEP. With RPLND, either robotic or open are good choices. Pure laparoscopic (without robots) is usually not recommended.
    Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

    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


    • #3
      SHABBY~ What was your HCG prior to r/o? Did the urologist talk about the restesting HCG? I know Indianna University would not treat with chemo until markers rise. Chemo does impact fertility. I have no idea how many rounds you would have, but the fact that you had LVI and EC I would ask Urologist.
      . My 17 year old son sadly did not bank anything before chemo despite my encouragement. As far as RNPLD before chemo I will let others speak up.
      17 year old Grant dx 12/21/16
      pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
      pre/o CT Scan 12/22/16 normal
      r/o 12/22/16
      Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
      PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

      -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
      2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
      BEP x 3 1/27/17
      Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
      2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
      Post Chemo RPLND 5/8/17: pathlogy Teratoma , 3 large masses removed

      Comment


      • #4
        Here's your situation. You have to keep getting your b-HCG tested weekly right now. That's the only choice you have. There's no RPLND option until we see those markers going down. There's no 1 x BEP option either. If your markers continue to rise then you are stage 1s and you will need 3 x BEP (or 4 x EP). Both of those chemo regimens are considered equally effective, each having a different side effect profile. If your markers decline, then you will be stage 1b with 3 options: surveillance, 1 x BEP, or RPLND.
        Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

        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


        • #5
          Why haven't you been referred to an oncologist?
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

          Comment


          • #6
            Thanks for the responses so far, everyone. Responses to various comments below:
            My urologist said 1/3 chance of relapse. Just relaying what he said.
            This would be robot assisted. I was unaware that laparoscopic was done without robots.
            I don't have my b-HCG prior to I/O with me currently, but I do know both AFP and b-HCG went down after my first blood test. I had the second one, which showed the increase. We're continuing weekly. Third test is this Monday. if it continues to rise, RPLND is back on the table. Otherwise, referral to oncology for chemo.

            Followup question, mostly to RJKD, since he brought it up. My urologist is pretty against surveillance, it it remains an option. He's pretty adamant about taking action. Granted, he's also the surgeon who would performed my I/O and would be performing the L-RPLND so I guess I had it. I like the idea of not doing anything until I HAVE to, but I really don't like the idea of chemo, if it could be avoided.

            Comment


            • #7
              First: Have you had two or three blood tests since this started? Sounds like maybe one before the I/O & two after? If you can post all the numbers it will help us help you.

              Second: Depending on what your markers do, you may not have any option other than chemo. The RPLND or surveillance is only recommended if your markers go down.If you hcg continues to rise, you will need chemo.

              Third: The experts on TC prefer surveillance when it's appropriate. The thinking is you may already be cured by the I/O & if you are not, 3xBEP will almost certainly do the job.

              Forth: Surgical oncologists & urologists prefer surgery, Medical oncologists prefer chemo. We all tend to prefer the hammer in *our* toolbox.

              At this point you simply do not have enough information to make any decisions. If your hcg came down a lot from pre-I/O than you may just be one of those that has a naturally higher level. It happens.The two point rise is insignificant in itself. If it keeps rising steadily without backtracking, that/s when we know there's a problem.

              Dave
              Last edited by Davepet; 04-21-17, 02:29 AM.
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #8
                Hi,

                I had 100% EC with LVI - BUT my markers were positive before IO and came back negative after IO. 2xBEP was suggested but I choose surveillance (in 5/2015). knock knock knock - still doing well almost 2 years after.

                Is it in some guideline to make RPLND even if your CT is negative?

                Rising Bhcg will make me worried, not RPLND at this time...(?)
                04/24/2015 – pain in the right testicle – USG confirmed mass, blood results B-HCG = 12, AFP = 6.14, LDH = 9
                05/05/2015 – I/O (100% Embryonal carcinoma, LVI presented)
                05/06/2015 – post-operative CT scan negative
                6/2015 - surveillance (my decision)
                7/2015, 9/2015 - markers negative
                9/2015 - 2nd CT negative (re-check in 2/2016 found node 16x12mm!!)
                10/2015, 1/2016 - markers negative
                2/2016 - 3rd CT scan - 2 nodes (border) - 12x8mm, 13x9mm
                3/2016 - markers negative
                5/2016 - next check - markers
                6/2016 - CT scan...

                Comment


                • #9
                  Originally posted by shabby View Post
                  Thanks for the responses so far, everyone. Responses to various comments below:
                  My urologist said 1/3 chance of relapse. Just relaying what he said.
                  This would be robot assisted. I was unaware that laparoscopic was done without robots.
                  I don't have my b-HCG prior to I/O with me currently, but I do know both AFP and b-HCG went down after my first blood test. I had the second one, which showed the increase. We're continuing weekly. Third test is this Monday. if it continues to rise, RPLND is back on the table. Otherwise, referral to oncology for chemo.

                  Followup question, mostly to RJKD, since he brought it up. My urologist is pretty against surveillance, it it remains an option. He's pretty adamant about taking action. Granted, he's also the surgeon who would performed my I/O and would be performing the L-RPLND so I guess I had it. I like the idea of not doing anything until I HAVE to, but I really don't like the idea of chemo, if it could be avoided.

                  Yes, your urologist is incorrect about the relapse rate. RPLND is not on the table if markers go back up.

                  Surveillance is actually the preferred option by most institutions. Sloan-Kettering prefers RPLND for stage 1b cases as they have the expertise for this surgery. If you REALLY want to avoid chemo, then RPLND would be the right step (if your markers go back to normal). If you really don't want to do anything until you HAVE to, then surveillance is the right step.
                  Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

                  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


                  • #10
                    Surveillance preferred even with LVI?

                    Comment


                    • #11
                      Originally posted by shabby View Post
                      Surveillance preferred even with LVI?
                      The LVI puts your risk of recurrence at 50%. Kinda like a coin flip. If it's heads, you are cured & avoid all other treatment beyond surveillance, tails & surveillance finds a recurrence with plenty of time for 3xBEP to knock it out. You survive either way, it's a personal decision only you can make.

                      Some prefer to give themselves the chance to avoid additional treatment, others don't want to chance needing 3xBEP & prefer to take treatment that may be unneeded & accept the side effects from that rather than risk the side effects of a full course.

                      Again, you may not have a choice, you can't make this decision with the info you currently have. Waiting is hard, but unfortunately it's part of having cancer at this point in your journey.It will get better.

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

                      Comment


                      • #12
                        HI Shabby

                        I was in a similar situation as you are currently in but, a few months back. I, unfortunately, had lymph nodes present and my markers continued to rise and fall after my orchy. I held out to see if RPLND was an option. It was the worst 8 f***ing weeks ever. Waiting to find out if you get to have your belly sliced open or if you get to be pumped with chemotherapy is the absolute worst thing. I'm currently on a 3 x BEP regimen and I'll be finishing my second cycle on Tuesday. It sucks, I'm bald, I have light nausea and I'm fatigued on most infusion days. But honestly, I wish I started it sooner, just get it over with as soon as you can. My advice is to see an oncologist because if your markers keep rising you're going to need one. I chose 3 x BEP because it has less potential long-term side effects than the 4 x EP. Bleomycin can affect your lungs but as of my last pulmonary function test, my lungs are still okay, I was told that I'd lose a bit of lung function but, it'd come back over time, once treatment was completed. I've read that many people who chose the 4 cycle regimen have lasting nerve pain which is what I want to avoid.

                        If you do end up getting a fully open RPLND it does require at least a few nights in the hospital, I've seen studies where the average is 3 days but, people can be there as long as 6 days.

                        As far as fertility goes, chemo will destroy your sperm while you're being actively infused so bank if you can. Also with RPLND there is a chance of retrograde ejaculation...google it. I found out I was azoospermic (hurray.....) but, there is an infertility urologist at Boston Medical Center who was able to do a testicular biopsy(TESA/TESE) of my remaining testicle and I was able to freeze 3 vials.Both the procedure and freezing were not covered by insurance. The procedure was outpatient but the recovery was tough, the first 3 days were pure misery. My advice on this is having your urologist do a semen analysis to find out if your sperm production hasn't been stunted by cancer first. If there is viable sperm then go bank. If there is a California Cryobank in your area then you might be able to have the Livestrong foundation cover a portion of your payment. I can give you more info on that if you want. Don't pay to sperm bank first and then find out there was nothing to save. It'll save you time and money. I'll tell my kids all the hell I went through for them one day!

                        I'm sorry if I sound like I'm bitching but if you end up going through treatment you'll find out how great this forum is for that!

                        Let us know how it works out,
                        Daniel

                        Comment


                        • #13
                          Hi all, back to update.

                          AFP continues to drop, but HCG has plateaued. My urologist is referring me to oncology now. Results are below. The first one was pre-IO.

                          Daniel, thanks for the information. Have you seen any research on the odds of needing RPLND after chemo? Essentially, how effective is chemo on stage 1b embryonal?
                          3/16/2017 4/3/2017 4/10/2017 4/17/2017 4/24/2017
                          HCG 416.2 33 11.8 12.9 12.0
                          AFP 13.3 5 3.2 2.5 2.4

                          Comment


                          • #14
                            Well, if the markers don't fall back to normal, you are stage 1s, not stage 1b.

                            However, to answer your question. If you are stage 1b, and you choose chemotherapy, then 1 x BEP would be the recommendation. There was a recent study in the UK that showed that those that did 1 x BEP had a 2.6% relapse rate. 1.3% had to undergo further chemotherapy. 1.3% had it resolved with an RPLND. So essentially, if you did 1 x BEP, you have about a 1% chance of needing a future RPLND. Not bad!!

                            However, you may be stage 1s. That's a different ball game. Your chance of RPLND would be substantially higher than 1%.
                            Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

                            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


                            • #15
                              Is there a number attached to "substantially?"

                              Comment

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