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  • Just diagnosed -

    Ultrasound Tuesday showed mass.

    Ct scans were normal.

    112 b-HCG. Other blood markers normal.

    Surgery is set for Monday.

    What stage am I? Will I need chemo? What type of tumour is it most likely? I know the pathology report will tell more.

    Worried but focused on 99% cure rate?!

    Thanks for any feedback!

  • #2
    Sorry to welcome you. Its a very scary thing, but this group has a lot of knowledge. Firstly, you are right on with focusing on that high cure rate. You also have some good things going for you. Your hcg is only slightly elevated, and clear ct scan is always a very good thing. Many different types of testicular cancer increase hcg levels, so its not possible to even predict what type you have. No matter what type it is, you have a high chance of cure with surgery alone!

    As of now you'd be stage 1S, because your hcg is slightly elevated. It may resolve itself after orchiectomy (obviously the best case scenario) so do not fret. Any way you look at it you have an excellent chance of being cured, even if further treatment is needed. Take it one step at a time, inform yourself but only if it doesnt make you anxious. I am fascinated, so I'm always researching.

    But lets take this one step at a time and get that trouble maker out, and keep us posted!
    11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep

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    • #3
      Originally posted by Cmwilli4 View Post
      What stage am I? Will I need chemo? What type of tumour is it most likely?
      Staging can't be done without path report. With a clear CT you may not need chemo, but again, the path report is needed.There is no way to tell the type of tumor it is at this point either.

      Especially at the beginning of the journey, waiting is often the hardest part, but afraid there is no choice. Based on what we know so far, you caught it early, & no reason to think you won't be cured.

      Dave

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

      Comment


      • #4
        HI there Cmwillie I just recently joined as well and have progressed slightly further from your point. My cat scan showed an enlarged node which puts me at IIa. Until you get the tumor pathology back you can't say whats what just yet. Before jumping into chemo make sure you talk to a surgeon who can do an RPLND if needed. You are lucky in that nothing has spread to your lymph nodes so get the orchiectomy done asap then they will recheck afterward.

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        • #5
          Thanks guys! I will post updates as I get them. Very surreal being on this forum but glad it's here.

          About 1 month ago I had swelling and pain in my left testicle. Seems like it happened overnight. I waited 2 weeks to see if it went down. Then scheduled an apt with urologist 2 weeks later. I never felt a bump. But now looking back I did notice one was handing lower than normal.

          I keep up with health topics and have always been hyper vigilant in reading up on cancer causes and avoiding them. (Last year I read about microwave popcorn for example. Who knew?!)

          I'm sure at some point I saw something about testicular cancer and to check for it. But the fact that it hits young guys went right past me. Never checked. I am lucky the pain started when it did. Before it spread.

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          • #6
            Wonder if I have been misdiagnosed. I had blood work about three years ago that showed low testosterone. Could that elevate my HCG to 112?

            Also right before my testicle swelled I tested positive for streptococcus. Which can cause orchitis and that can be misdiagnosed on ultrasound as a tumor.

            Either way it's probably too risky not to have the surgery.

            Comment


            • #7
              Keep focused on the clear CT. Around here, a clear CT is super good news. That means that most likely (still markers may not return, but most likely) you're stage 1. We celebrate that. Stage 1 isn't so bad in the scheme of cancer. In some sense, they shouldn't call TC "cancer". For new patients, when we hear we have cancer, it freaks us the heck out. TC isn't nearly as bad as what comes to mind. I don't know anything about orchitis. That seems like a great question to press with your urologist, or even e-mail Dr. Einhorn in Indiana if you don't have enough faith in your urologist (I never have that much faith in one doctor). Keep us posted on your progress. Sending good wishes.
              -Uno
              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.

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              • #8
                Hi Cmwilli4,

                I was told orchitis usually hurts a lot more, and you have fever, it's like an infection.

                I thought the same as you did, that I might have been misdiagnosed, but usually doctors know what they are doing. It proved to be stage one seminoma.
                If the ultrasound shows mass, depending on how the images look like, it is a good chance that it is a tumor.

                Let us know how it goes.

                Comment


                • #9
                  Dr. Einhorn emailed me back. Thanks for the tip! He confirmed it is cancer. Surgery will go forward tomorrow.

                  Comment


                  • #10
                    Originally posted by Cmwilli4 View Post
                    Wonder if I have been misdiagnosed. I had blood work about three years ago that showed low testosterone. Could that elevate my HCG to 112?

                    Also right before my testicle swelled I tested positive for streptococcus. Which can cause orchitis and that can be misdiagnosed on ultrasound as a tumor.

                    Either way it's probably too risky not to have the surgery.
                    I don't believe low T would elevate hcg, especially not that high. You almost certainly have TC & need the operation. Look at it this way, the very best news would be a path report showing no cancer, that would be cause for celebration!

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

                    Comment


                    • #11
                      Orchiectomy done. I am in a lot of pain tonight. Hopefully each passing day it get better. Pathology report due Friday.

                      Comment


                      • #12
                        Sorry you are in pain. My 17 year old son found that resuming normal activity was helpful. Please keep us updated about your pathology report.
                        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
                        Tumor markers at start of Cycle 1 1/27/17 HCG 899.68 AFP 50.6
                        Tumor markers at start of Cycle 2 on 2/17/17 HCG 5.96 AFP 10.2
                        Tumor markers start of Cycle 3 on 3/10/17 HCG .6 AFP 3.2
                        POST Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm

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                        • #13
                          Hopefully good news on the path report today! Hopefully your pain is ease' up by today!

                          -Eric
                          3/25/11 swelled up at Disneyland
                          3/29/11 Ultrasound
                          4/7/11 Left I/O
                          Pathology, immature teratoma 70% Yolk Sac tumor 10% Embryonal Carcinoma 10% and seminoma 10%
                          3 Lymph nodes affected
                          IIIB
                          BEP x 4 5/2/11-7/15/11
                          RPLND 8/15/2011 Two nodes Immature teratoma
                          9/22/11 ALL CLEAR!!!!
                          11/26/11 ALL CLEAR
                          2/21/12 ALL CLEAR

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                          • #14
                            Preliminary path report found only seminoma. But they are getting second opinion which be ready Monday! Was able to get up and walk around Wednesday. Stopped pain meds yesterday. I feel more tired than normal. That will get better I hope? Thanks guys!

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                            • #15
                              It seems likely surveillance might be an option then.

                              Also, yes, as you bdy recovers from the surgery, your energy levels will return. It's to be expected to feel more tired than normal at this point.

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

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