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My Case: Stage 1b, Embryonal Carcinoma

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  • My Case: Stage 1b, Embryonal Carcinoma

    Hi there,

    First and foremost, I want to thank everyone on this forum for their continued support of each other. What this community has created is a wonderful thing. While I mostly just lurk the forum, the information I’ve gathered here this past month following my diagnosis has been tremendously helpful.

    I’d like to post a summary of my case below and ask some questions at the end. These questions help me organize my thoughts and provide peace of mind, however hyper analytical they may seem. As a precursor, I know my prognosis is good and that my questions really are trivial in the grand scheme. I also know there are cases much more serious than mine deserving of more attentions. Thank you sincerely in advance.

    Stage 1b, Embryonal Carcinoma (age 25)

    10/20 - Ultrasound finds mass in right testicle
    1.7 x 1.1 x 1.4 cm

    10/26 - Normal blood markers
    LDH 170 IU/L
    HCG <1 mIU/mL
    AFP: 1.0 IU/mL

    11/9 - Radical inguinal orchiectomy of right testicle

    11/14 - Pathology report reveals Embryonal Carcinoma, 2 x 1.3 x 1.1 cm (I’ll type out the key findings below / no digital copy)
    "Extensive lymphovascular space invasion identified"
    "Embryonal carcinoma invading into hilar vein"
    “Intratubular embryonal carcinoma”
    “Intratubular germ cell neoplasia”
    "Surgical resection margins, including spermatic cord margin, negative for tumor"
    "Distance of tumor from spermatic cord margin: 5.4 cm"
    "Epididymis, spermatic cord, tunica vaginalis, scrotal wall all negative"
    "Tumor invading into vein of perihilar fat"
    “Tumor extensions: rete testis – identified, including invasive and in situ components as well as lymphatic space invasion”

    11/20 - CT scan of chest, abdomen, pelvis reveal “no evidence of metastatic disease.” (I’ll type out the key findings below)
    “In the lungs, there is a pleural-based 3 mm nodule in the peripheral right upper
    lobe (image 20); this appears linear on coronal images, suggesting a benign
    intrapulmonary node. No consolidation or pneumothorax is present.”
    “Small lateral residual thymic tissue is present in the anterior mediastinum.”

    11/29 - Urologist provides me with three options and refers me to an oncologist
    1) Surveillance
    2) RPLND (doesn’t recommend)
    3) BEP x2 (suggests chance of recurrence go from 25% to 3%)

    1/4 - First oncologist appointment set…


    Questions

    1) My most pressing question: are the options my urologist presented sound and standard as in cases of stage 1b, embryonal carcinoma? Why BEP x2 over BEP x1? I realize my oncologist may suggest something different too.

    2) Does the 25% of recurrence (without treatment) sound accurate; and is 3% recurrence where I’ll end up after BEP x2?

    3) Do the “clear margins” from the pathology report make a stronger case for surveillance? The term “extensive lymphovascular space invasion identified" was used in the pathology report, which is a bit unsettling. Is the term “extensive” significant? Or the fact that the tumor extended into the rete testis?

    4) Is the 3mm nodule in the lungs of concern? While the CT scan report suggests it looks benign, I’ve also read that embryonal carcinoma may skip to the lungs in about 10% of cases, so this is why I ask.

    5) Unrelated to the short term: does my urologist or oncologist order my CT scans over the next 5 years? I think a case could be made for MRIs over CT scans for year 3-5 should I go the chemotherapy route and 3% recurrence really is the case, considering the benefit of less radiation exposure (with the drawback being less clearer images),

    6) It’s 5 weeks until my first oncologist appointment; is that too long? It would make time frame from surgery to chemotherapy about 9 weeks, wherein what I've read recommends waiting no more than 6 weeks following surgery.

  • #2
    BEPx2 is wrong! The option for adjuvant chemo is BEPx1, and has about the same success rate as adjuvant treatment. Seriously, find a doctor who knows about TC. It's worth the effort to talk to someone who knows. Also, your current relapse rate is far north of 25%. I'm sorry to be the bearer of mixed news, but you need a doctor who knows the facts and can guide you appropriately.
    11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
    12/8/16 Diagnosed with TC in left testicle.
    12/9/16 Left I/O.
    1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
    1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
    2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

    Comment


    • #3
      Also, whatever your chances are now of relapse (say about 50, possibility higher), BEPx1 roughly cuts it by a factor of 10. So, if it's 50, then it drops to about 5.
      11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
      12/8/16 Diagnosed with TC in left testicle.
      12/9/16 Left I/O.
      1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
      1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
      2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

      Comment


      • #4
        Your relapse rate is 50%. The fact that your pathology report shows "extensive LVI" may mean it's even higher. However, studies have only looked at whether LVI is present or not and not whether it's "extensive". 1 x BEP would cut your relapse rate to about 3%.

        Surveillance, 1 x BEP, and RPLND are all options. 2 x BEP is not a reasonable option.
        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


        • #5
          The fact that my Urologist provided me with incorrect information with regards to both the reccurance rate and chemotherapy option unsettles me. He is a fantastic surgeon and has a resume longer than anyone, but what bothers me is his poor bedside manner and aloofness, as well as this situation. I thought long and hard before emailing Dr. Einhorn as I respect his time and the fact he deals with more serious cases. I'm glad I finally did Here's what he had to say (which mimics the above sentiments):

          "Those stats and recommendations not quite correct. With embryonal cell carcinoma and embryonal cell carcinoma the cure rate with orchiectomy alone is 50%, not 75%. If you receive adjuvant chemo with BEP x 1 it would lower the relapse potential from 50% to 1%. You did not mention your tumor marker levels, but I presume your hCG and AFP were normal or they would not list this as stage I disease. The three options are surveillance, RPLND by an experienced and skilled urologist or ONE course of BEP. We NEVER recommend BEP x 2. These are very long discussions about the pros and cons of each of these 3 options, all of which will lead to an eventual 99-100% probability for cure. If you wanted to be seen here, I could easily arrange that for next week.

          Since you are not seeing the oncologist until Jan. 4th, I would strongly recommend repeating the PA and lateral chest X ray as well as serum hCG and AFP at that time to ensure that you are still clinical stage I disease. If you have new pulmonary metastases or a rising and abnormal hCG or AFP, you are then no longer stage I and if that were the situation the only option would be chemo for metastatic disease, preferably BEP x 3 which should easily cure your disease."

          I'm now most concerned about the wait period before starting chemo, if there's an 8-9 week gap from surgery to chemo. I just visited the oncologist office, my third time contacting them to see if I can get in sooner. I am probably going to take Einhorn up on his offer to see him next week. I'd have to fly our from the West coast though, and I'm not sure what insurance he takes or how that would work.

          Comment


          • #6
            If I was in your shoes, I would not wait for Jan 4. I've seen enough of this disease to say that acting fast is always a good way to go. I would go to Indiana and have an extensive discussion with Einhorn.
            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
              I certainly agree. It's decided, I am going to Indiana next week to visit Einhorn. I am very lucky and grateful for this opportunity. I am going to also talk to a local oncologist tomorrow that Einhorn recommend to see if I can get treatment sooner, as I will obviously need to have treatment in my current city. Furthermore, I am going to continue to bother my current oncology office to see if I can get in sooner than Jan. 4th.

              Thank you for your concern and discussion. It is good news, isn't it, that the CT scan was just November. 20th and was clear? That wasn't TOO long ago. I still agree Jan. 4th is too far away.

              Comment


              • #8
                Nov 20 was not too far away. You're on the ball now which is good. I knew time was of the essence so I decided to do 1 x BEP 3 weeks after my orchiectomy and about 2 weeks after my CT scan. I would consider full open bilateral RPLND in your case as well. Surveillance isn't a bad choice, but I really don't like the look of your path report.
                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
                  To be honest, I couldn't see myself going the RPLND route especially with nothing shown on the CT scan and the fact that embryonal carcinoma may skip the lymph nodes altogether. Really hoping Einhorn convinces my oncologist to go the BEP x1 route. My case is pretty similar to yours, RJKD. I also read your thread from 2016. How are things now? Surveillance okay, CT scans and all?

                  Comment


                  • #10
                    Is this not pretty standard? My only question is why the urologist is presenting you with your options. Going to Indiana (unless you're already there) for what looks like a textbook early stage TC seems like an overreach, no? There's gotta be a TC-familiar oncologist in your area who would give you the proper options (hint: the ones we gave you. 1xBEP or RPLND). I'd personally take 1xBEP, especially having gone through 3 rounds of it myself over the risk of retrograde ejaculation that comes with RPLND. The first round was pretty uneventful for me and recovery from it should be a relative breeze compared to the 3x I had.

                    As far as your 3mm node goes, we don't really worry about anything under 1cm. You should be fine with a 3mm node.

                    Comment


                    • #11
                      Yeah, it isn't really necessary to go and see him - except to get some questions answered and meet the man. It'd be a good experience and memory, but I don't think it will change my course of treatment. My first goal is to get the RPLND or BEP x1 done ASAP.

                      Comment


                      • #12
                        The reason I'd go to Indiana is that if RPLND is the way you choose to go, you can easily find the best urological surgeon at Indiana. They will have a few very experienced surgeons there. The risk of retrograde ejaculation is super low with a good surgeon too.
                        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


                        • #13
                          Regarding insurance and IU, if your insurance doesn't cover it, the consult cost is about $400, so if you're in a financial position to fly out there, this probably won't dissuade you. The cost to do RPLND there without insurance is about $125000 assuming no complications. There's no reason to consider doing chemo there. Your can find a local oncologist and just have IU supervise.
                          11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
                          12/8/16 Diagnosed with TC in left testicle.
                          12/9/16 Left I/O.
                          1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
                          1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
                          2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

                          Comment


                          • #14
                            Those telling you to opt for chemo over RPLND, my son begs to differ, RPLND was much easier than chemo. If RPLND is an option, than it might be worth considering. My son probably has retrograde and just turned 18 years old, plus he did NOT bank prior to chemo, still he thinks RPLND was not as bad as chemo. He was dx last Dec. on 12/21/16.
                            Son Grant
                            dx 12/21/16 at age 17

                            BEP x3
                            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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.
                            6 months Cancer Free

                            Comment


                            • #15
                              Seeing Einhorn is always a great idea if you are capable (financially, travel, time, and want to). I saw him for my Two year post chemo checkup; not because I had to be, but because I wanted to. I was capable in all other regards (financially, travel, and time). I also participated in the Platinum study while there. That experience was the final page of the last chapter of my recovery from this crap on every level.

                              Regarding BEPx1 and RPLND. Personally I would go BEP. However I have no experience with RPLND.....which I find terrifying. In my case the 1st cycle of BEP was very easy (relative to the other cycles). Cycle 3 was absolutely brutal for me. However there are plenty of cases on here where the 1st cycle was the worst for some individuals. In any event you are in position where you must choose what's best for you and only you....we can just offer advice and experience for you to draw upon. Surveillance seems way too risky given your pathology.

                              Just my 2cents. I know that you will do fine as you are clearly in control of your care and on the ball (no pun intended).

                              - Matt
                              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
                              July 8th 2017: 3 YEARS ALL CLEAR !

                              Comment

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