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  • New diagnosis, lots of questions

    Hi everyone, I'm sorry to introduce myself here, lol.
    I just turned 33.

    Here is a rundown of how I got here:
    Age 3, right orchiopexy
    2014 testicular calcifications and left varicocele found on ultrasound
    2015 left microsurgical varicocelectomy to try to help fertility
    9/11/17 routine physical, everything normal
    9/21/17 noticed left testicle very swollen (ping pong ball)
    9/25/17 went to urgent care was given antibiotics for assumed epididimitis no ultrasound done
    9/27/17 went to ER for ultrasound, showed solid mass on left (golf ball)
    9/28/17 met with urologist and scheduled surgery. AFP 1.2, HCG

  • #2
    Apparently it didn't take my whole thing, here is more..
    9/28/17 met with urologist and scheduled surgery. AFP 1.2, HCG under 2, LD 240
    10/6/17 Left Orchiectomy (egg sized)
    10/16/17 Pathology showed 5.2cm Seminoma through tunica albuginea with involvement of tunica vaginalis (pT2, Nx, Stage 1b)

    I can break this down into multiple posts if someone this its better, I've never really participated in a forum like this.

    My urologist told me my best options would be surveillance or radiation, and recommend me see a radiologist to weigh pros and cons.

    I chose to make an appointment with an oncologist who might take a larger view at my case.
    I collected my slides from the hospital as well as a CD with my previous ct scans on it. I plan to take all of this to my meeting with the oncologist at the local cancer center for them to review.

    I will meet with them for the first time this coming Monday, Oct 23.

    -Does anyone have any general or specific questions I should ask?

    I've been doing a lot of reading, and one thing I found of interest is that previous inguinal surgeries (I've had two) can sometimes cause less predictable spread, making targeted radiation less effective.

    -What do you all think in general of surveillance vs radiation vs chemo for stage 1?

    I work with my hands and fine motor and dexterity are critical to my trade. I know chemo can cause neuropathy. That scares me.

    Most of what I've read tells a story of relatively slow growth rates, but mine was very fast. Based on my approximations and some math I believe my tumor was doubling in volume about every two days!

    -Do you think that my fast growth rate could be corollary if this decides to met somewhere? That could make surveillance more scary to me.

    Anything else you can add?
    My mind is going a million miles an hour trying to weigh options, and I haven't even heard what the oncologist thinks.

    Thanks for your time

    Comment


    • #3
      CT results were clear?
      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 - 9/18/15: 4xEP
      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!
      9/18/2017 all clears up to this date!

      Comment


      • #4
        2-3 weeks before this all started I had two ct scans done in the er for (hopefully) unrelated issues. Neither one mentioned enlarged nodes in the report.
        I will have the specialist at the cancer center take a better look in the likely areas of the scans to verify that they are good.
        So for the moment, yes, I believe ct is clear.

        Comment


        • #5
          I think you're in a tight spot. 1b recurrence rate I believe is at 50%. I think your dr might suggest single dose carboplatin. I'm surprised a seminoma would grow as fast as you stated. It is typically a really slow growing cancer. One thing I made sure was my pathology was right so I could make the best decisions. I've seen a few people on here who's pathology changed a couple of times after further study. I went to the hospital and got my path slides and gave them to my oncologist who specializes in testicular cancer and sent them to his own pathologist who was very familiar with testicular cancer pathology to make sure it was all correct.
          April 2017 - Scheduled physical with DR for testicular pain / ultrasound scheduled
          May 2017 - US shows 3 solid masses 1.2 x 0.7 x 0.7 cm/0.8 x 0.5 x 0.8 cm/ 0.4 x 0.3 x 0.4 cm
          June 2017 - Left orchiectomy & diagnosed with Seminoma
          As of October 2017 - All clear!

          Comment


          • #6
            My advice is to follow the advice of the oncologist who's whole career has been treating issues like this.
            For car troubles I want the best mechanic's plan of action. For computer troubles I want the best IT professional's plan of action. For cancer it makes sense to get a cancer specialist's plan of action.
            For my personal story my urologist helped me with penis, surgery, and implant questions. My oncologist saves my life with treatment and follow up issues.
            Whatever you do, you're not alone and we're here to support you!

            Comment


            • #7
              Originally posted by KevinATL View Post
              My advice is to follow the advice of the oncologist who's whole career has been treating issues like this.
              For car troubles I want the best mechanic's plan of action. For computer troubles I want the best IT professional's plan of action. For cancer it makes sense to get a cancer specialist's plan of action.
              For my personal story my urologist helped me with penis, surgery, and implant questions. My oncologist saves my life with treatment and follow up issues.
              Whatever you do, you're not alone and we're here to support you!

              I mostly agree with this, however, I'd be getting second opinions that's for sure if I felt uneasy about any advice given. My original dr wanted me to do radiation which would have been overkill considering my diagnoses for stage 1A Seminoma with 80% cure rate from surgery. It wasn't until I told my first dr I was getting a second opinion before I did radiation and I'm glad I did. Though this was my urologist who did my surgery who wanted me to do the radiation. My dr now is an urologist/oncologist and I am very thankful Mike on this forum sent information to me so I could get that opinion. And like KevinATL said, we're all here for you! This community helped me personally with so much of the emotional stuff reading and talking to others who were faced with these problems. I am confident it will help you as well. Good luck.
              April 2017 - Scheduled physical with DR for testicular pain / ultrasound scheduled
              May 2017 - US shows 3 solid masses 1.2 x 0.7 x 0.7 cm/0.8 x 0.5 x 0.8 cm/ 0.4 x 0.3 x 0.4 cm
              June 2017 - Left orchiectomy & diagnosed with Seminoma
              As of October 2017 - All clear!

              Comment


              • #8
                So sorry you are able to post here. I agree that 2nd opinions are good especially since TC is not a common cancer and not all Urologists or Oncologists have treated many cases.
                17 year old son 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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                Comment


                • #9
                  Thank you all for your support.
                  I definitely need to trust the doctors, all of them have more experience than I do, but I really hope that they have enough experience to really read my situation as a whole and take all of my circumstances in perspective when making a recommendation.
                  I'll be working on questions over the weekend before my meeting Monday.
                  I will certainly feel better having another pathologist see my slides, and have a real oncology radiologist see my ct scans.
                  I might even be tempted to try see if I can consult with UofM, or IU, or Sloan Kettering or somewhere- I don't really know how experienced the cancer center I'm going to is with TC.
                  That's probably overkill though. Compared many of you, my situation should be a breeze.
                  Hopefully I'll be able to get a good read on the situation Monday and decide if I need to look further or not.

                  In the meantime, if anyone has anything they think I should ask on Monday, or anything else you think may be of help, please chime in.

                  Thanks so much!

                  Comment


                  • #10
                    I went to my first appointment today at the cancer center today.
                    I have a couple cysts or scars on my lungs that look probably unrelated, as well as some thickening in my colon (presumably from diverticulitis), but the oncologist would like me to get a PET scan to rule out any met involvement. The previous scans didn't show any nodes that they could see. If my insurance will foot the bill I'll get the PET scan in about a week. If not, they will have me get a better ct scan than the previous ones. Apparently I had widely spaced layers in my previous ones and they want to make sure they can see as much and as clearly as possible.
                    They are also going to have their pathologists view the slides I brought them.
                    After all of that they will try to decide and explain to me the pros and cons of my options.
                    So that's where I'm at..

                    Comment


                    • #11
                      The further imaging may play a role in the options you have for treatments. However, given the inguinal surgeries it is my understanding that adjuvant radiation for stage I disease is not really recommended, at least as far as the NCCN Guidelines go. https://www.nccn.org/professionals/p...asp#testicular

                      With you career and the need to avoid neuropathy, active surveillance is an option to avoid chemotherapy but it also probably has the highest risk for needing full-dose chemotherapy (i.e. if you relapse. Although if you catch the relapse early then radiation may still be an option).

                      Another option that you may want to look into would be an RPLND for stage I disease and there are currently several locations (including IU) that are doing the study. See: https://clinicaltrials.gov/ct2/show/NCT02537548 Just a thought to consider.

                      Mike
                      Oct. 2005 felt lump but waited over 7 months.
                      06.15.06 "You have Cancer"
                      06.26.06 Left I/O
                      06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                      06.30.06 It's Official - Stage I Seminoma
                      Surveillance...
                      Founded the Testicular Cancer Society
                      6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                      Comment


                      • #12
                        Hope you consider Mike's suggestions.
                        17 year old son 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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                        Comment


                        • #13
                          Thank you all for your input.
                          I'm still just starting out here, so if anyone else has anything more to add, please do!

                          Comment

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