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Tying to figure things out post orchiectomy

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  • Tying to figure things out post orchiectomy

    Hey everyone, I'm new here but already finding the forums very interesting and helpful. Still trying to learn all the lingo so I can better understand my situation and everything that I am reading.

    Things started for me over a year ago. Initially I was told it was epididymitis, but after a year or so when a lump started to develop my doc ordered the ultrasound and sent me to a urologist. That's where I found out it was very likely I had testicular cancer. Unfortunately I didn't really care for that doctor so I waited another month or so to get a second opinion. Basically they told me the same thing and I ended up having my orchiectomy just over a week ago. The pathology report came back yesterday and said it was a T1 seminoma, which they said is the best thing I could have hoped for! I go in Monday for CT scans and to find my course of treatment. I'd like to go into this knowledgeable so that I can make the right decision on chemo/radiation/future surgeries, but it is all pretty confusing right now. Thank you all for reading my story and please reply with any advice or information you think may help. I'll leave a little timeline, and all of the information I have right now.

    12/11/2014 - First urology visit - told it was likely cancer and needed orchiectomy - was told tumor markers were "normal"
    01/08/2015 - Second urology visit - scheduled orchiectomy
    01/16/2015 - Left orchiectomy - BHCG <5, AFP 2.76 - T1 seminoma

    I'm feeling pretty positive about things right now, still a little discomfort from the surgery but I really just want to do everything in my power to put this all behind me. I think at this point, the best outcome would be frequent scans to make sure there is no recurrence?

  • #2
    Hi SKK.

    Sorry you are going through this.

    So, as you said, all the news is good so far, as cancer diagnoses go. Seminoma is the least aggressive type and your numbers look good. I'm betting your scans will show no evidence it has spread. If so you would indeed be a good candidate for surveillance (frequent scans and blood work). You may also be offered single agent chemotherapy - a one time dose of the drug carboplatin. The drug is well tolerated and reduces the chance of relapse to a very low level.

    In the unlikely that event that the scan shows something, you would need some additional treatment but your chances of a full recovery are almost unchanged (i.e. very high).
    Nick

    Embryonal Carcinoma; Seminoma. Marker negative.
    August 2001: Right I/O .
    August - December 2001: Surveillance .
    December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
    December 2001 - March 2002: 3xBEP .
    Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

    March 2012 - Ten years since finishing chemo.

    Survivorship Blog is here

    Comment


    • #3
      Thanks Smartie. It's definitely a little overwhelming trying to figure everything out, but I realize how lucky I am. I'm really hoping for surveillance because surgery sucks and I don't want to have to do the RPLND. CT scans are Monday so I am anxious to find out. If it has spread how do they decide between RPLND or chemo? Also, I've only really dealt with my urologist so far, should I be requesting a meeting with an oncologist?

      Comment


      • #4
        They should refer you to an oncologist now that the surgery is done. For seminoma, radiation is also an option. How do they decide? They'd take account of many factors, I guess. If it had, say, gone further than the lymph nodes then the RPLND would not be curative, of course, so other (or additional) options would be needed. I'd say they might go for radiation if the spread is fairly contained and low volume, or chemo for a more complicated case, since it is a systemic treatment.

        With your low marker levels, even with the delay in getting diagnosed etc, I would think there is a very good chance you are already cured. The classification of your tumour as T1 means that there is no lymphatic or vascular invasion, making it even more likely it has not travelled beyond the testicle.
        Nick

        Embryonal Carcinoma; Seminoma. Marker negative.
        August 2001: Right I/O .
        August - December 2001: Surveillance .
        December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
        December 2001 - March 2002: 3xBEP .
        Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

        March 2012 - Ten years since finishing chemo.

        Survivorship Blog is here

        Comment


        • #5
          I was just checking my doctor's profile. It says that he specializes in Urologic Oncology, so I wonder if they plan on me just dealing with him.

          Comment


          • #6
            Hey there SKK,

            It's my understanding that the RPLND isnt really performed for seminoma. It's done more for non seminoma. Since you're at stage 1, I wouldn't be too concerned with more treatment options. You may already be cured. I would still see an oncologist that specializes in testicular cancer. The title of urologic oncologist just signifies that they are qualified to perform cancer related surgeries. Such as the RPLND for testis cancer. But their specialty is still urology.
            3/11/14 - Right orchiectomy
            non seminoma - stage IIC 100% embroyal carcinoma
            2 enlarged lymph nodes
            3/31/14-5/27/14 - BEPx3
            lymph nodes decrease in size but still about 3 cm each
            7/16/14 - RPLND - found only dead cancer

            Comment


            • #7
              Great, thanks for clearing that up Daniel. I'll make sure to see an oncologist. I sure hope that I am already cured!

              Comment


              • #8
                SKK,

                I agree with what the other are saying.

                I do want to add one thing though. Seminoma does not produce AFP. Your bHCG is normal. You may want to ask them to add LDH into your blood tests. That's the only "marker" that I have to go on as my Seminoma never produced much bHCG. The only thing that sucks about LDH is that it is very non specific and I've had a false alarm with it already while on my surveillance.

                - 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
                Jan 9th 2019: 4.5 YEARS ALL CLEAR !

                Comment


                • #9
                  Thanks Matt. I checked my chart and it looks like I've had 2 LDH readings. One at 490, and then later 388. I go in this afternoon, so I'll know more soon.

                  Comment


                  • #10
                    SKK,

                    What were the dates between those test ? I assume one was before the Orch. and one was after.

                    Make sure you ask about it today.

                    - 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
                    Jan 9th 2019: 4.5 YEARS ALL CLEAR !

                    Comment


                    • #11
                      They are dated the same day. Pre-op post-op I suppose.

                      Comment


                      • #12
                        Well I got some great news this week! My CT scans came back all clear and there is no evidence that the cancer has spread outside of the testicle they removed. I am going with my Dr.'s recommendation and taking the surveillance route. I don't want to put my body through any treatments that are unnecessary at this time. The way he explained it was that right now there is about a 17% chance for recurrence at worst. So if he treats me with chemo or radiation there's about an 83% chance that he would be over-treating me. With all of the possible side effects from those treatments, that was enough for me. So it looks like I just have a lot of CT scans, blood work and X-rays in my future.

                        Comment


                        • #13
                          Awesome news SKK! Completely agree withy the route you are taking with surveillance. You never wanna go over kill and have treatments done that on don't fully need. I did chemo and RPLND but that was because I needed them 100%. Time to celebrate the good new man! 😎
                          3/11/14 - Right orchiectomy
                          non seminoma - stage IIC 100% embroyal carcinoma
                          2 enlarged lymph nodes
                          3/31/14-5/27/14 - BEPx3
                          lymph nodes decrease in size but still about 3 cm each
                          7/16/14 - RPLND - found only dead cancer

                          Comment


                          • #14
                            Wonderful news! Congratulations! Your doctor sounds fantastic and I am glad you are comfortable and happy with your decision for surveillance, as that is very important! And I agree with Daniel 100%.
                            9/27/2011 - Mass detected
                            10/4/2011 - Left I/O; Seminoma; Stage I
                            11-12/8/2011 - Radiation therapy
                            2012 - 2013 - Surveillance
                            2/6/2014 - bHCG 7.3, then 9.2
                            2/10/2014 - Recurrence confirmed, CT scan detected a chest tumor: 7.1 x 5.6 x 8.7 cm in diameter. Also a lymph node 1.4 x 1.0.
                            2/17/2014 - 3xBEP
                            5/12/2014 - Tumor completely resolved
                            9/12/2014 - New nodule on CT scan
                            11/11/2014 - Nodule increased from 1.2 x 0.7 cm to 2.9 x 0.9 cm.
                            12/8/2014 - HDC Autologous Stem Cell Transpant in Indianapolis
                            1/16/2015 - Tumor completely resolve!
                            3-6/2016 - started having severe and worsening headaches
                            6/28/2016 - 9.8cm brain tumor detected; emergency brain surgery
                            8/10/2016 - Radiation (6 weeks) to entire brain and spine to treat brain tumor (suspected leptomeningeal disease)

                            Comment


                            • #15
                              Thank you so much Conor and Daniel! I really was fortunate. And yes, my doctor was great. So happy I went for a second opinion and found him.

                              Comment

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