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  • Introducing myself

    Hey all,

    I'm really glad I found this place, as it's been of great help.

    I was diagnosed with TC in December. Had my orchiectomy in the last week of 2017. Non-seminomatous germ cell tumour (80% EC, 20% yolk sac), no lvi, stage 1a. All my tumour markers were elevated but now they're back to normal.

    My oncologist gave me the options of surveillance or adjuvant chemo but recommended chemo. After weeks of research and getting a second opinion, I've decided to go for 1xBEP. I still keep wondering if that's the right decision, but I'd rather do a cycle now than deal with the possibility of having to do 3 or 4 cycles in the future.

    I have generalized anxiety disorder, which really doesn't help at all. Just the anticipation of chemo has been hell. Although, ironically, my GAD saved my life. I freaked out when I felt a hardness down there and rushed myself to the hospital.

    I can't wait for this hell to be over. I'm already planning what I'm going to do once I'm done. It's the only way I can mentally pull myself out of this mess.
    Last edited by a-dilla; 02-15-18, 12:32 PM.

  • #2
    I hear you a-dilla!
    These are tough choices to make - sometimes it feels like it would just be easier if they would say "You need to do X." But, try to keep in mind that you're choosing between a set of good options.

    And don't wait for it to be "all over" to celebrate each stage of the process. Celebrate that you took the time to weigh your options. Celebrate the fact that you've made a decision. Celebrate getting through your first day of chemo, your first week, etc. Make many occasions to celebrate as you come through this experience, because that will help you over the rough patches as well.

    Good luck, let us know how things are going for you!
    Painless lump 5/18/2017
    Orchidectomy June 2017 (4.5cm, rete testis involvement)
    Chemo Summer 2017 (2x7AUC carboplatin)
    No evidence of relapse since, but plenty of anxiety about it.

    I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

    Comment


    • #3
      Having the autonomy to make my own decisions is actually great for me. I know that many people would rather just follow what they're told and not have to make decisions themselves, but that's not me at all. It was actually my biggest fear going in, thinking that everyone will be making decisions for me. Knowing that I made the choice is empowering and gives me peace of mind.

      You're absolutely right that I should celebrate all the steps I've come through. I will keep that in mind, thanks.

      Comment


      • #4
        In your situation I would do the same thing. Luckily if there happens to be any random calls out there 1xBEP will take care of them. EC is exquisitely sensitive to BEP as is yolk sac so while the odds are in your favor that you are already cured this will all but guarantee it. The cure rate for stage 1 is almost 100% because many are already cured, adjuvant therapy is so effective for those who may have some cells that snuck out, or relapses are all caught in early stage 2. Keep in my mind that in a few weeks you will definitely be cured (most likely though you already are now) and can go on living!
        3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!

        Comment


        • #5
          Nothing wrong at all with 1xBEP in your situation.
          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!
          3/29/2018 all clears up to this date!

          Comment


          • #6
            You didn't mention a CT scan, Is it safe to assume yours came back clear?

            I don't know much about GAD, but from the sounds of it, you probably wouldn't be a good fit with surveillance alone, so 1xBEP sounds lie the right choice for you. It won't be fun, but one cycle shouldn't be too difficult.

            Good luck & keep us posted with your progress.

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

            Comment


            • #7
              Thanks all for the responses.

              Davepet, yes, my CT scan was all clear.

              Comment


              • #8
                I think you are headed in the right direction and with stage Ia the treatments after orchiectomy lead to essentially 100% survival so what is most important is that you make the decision that is right for you. It sounds like with your anxiety that doing all you can up front with BEPx1 is a great decision. (Of note, if it were me I would not allow them to put a PICC line in me for BEPx1 unless I had horrible veins. I only mention this as I have seen it done before).

                How long ago was your CT scan and tumor markers? If it has been close to 6 weeks, then I would want them to check me again just to be sure that I was stage Ia before I underwent BEPx1. If for some reason, things have changed, then the BEPx1 would be under-treatment. I only mention this as you said the orchiectomy was in late December.

                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

                For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                Comment


                • #9
                  As Mike said above, with your anxiety than 1xBEP is probably the best choice for you. I concur with Mike as well about CT Scan and it would not hurt to run tumor markers again as well before starting chemo.
                  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.

                  Comment


                  • #10
                    Mike,

                    I had my last tumour marker test last week, and my CT scan about two weeks before that.

                    Thanks for the advice regarding putting in a PICC line.

                    Comment


                    • #11
                      Originally posted by a-dilla View Post
                      Mike,

                      I had my last tumour marker test last week, and my CT scan about two weeks before that.

                      Thanks for the advice regarding putting in a PICC line.
                      OK, that sounds more recent then I was assuming, which is good. When it gets to be about 6 weeks many doctors will re-do the tumor markers and CT to confirm that indeed things are stage I before giving adjuvant therapy, like BEPx1.

                      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

                      For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                      Comment


                      • #12
                        Originally posted by a-dilla View Post
                        Mike,

                        I had my last tumour marker test last week, and my CT scan about two weeks before that.

                        Thanks for the advice regarding putting in a PICC line.
                        OK, that sounds more recent then I was assuming, which is good. When it gets to be about 6 weeks many doctors will re-do the tumor markers and CT to confirm that indeed things are stage I before giving adjuvant therapy, like BEPx1.

                        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

                        For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                        Comment


                        • #13
                          A bit of an update:
                          - Just finished my third day of treatment.
                          - I feel that my fatigue is compounding. I'm still semi-functioning.
                          - Trying to maintain a somewhat healthy diet. My appetite is not at its best but sometimes I just have to force myself.
                          - Ironically, my physical fatigue gives me no energy to be anxious.
                          - Everyone has been taking care of me.
                          - The nurses have been super informative and answering all my questions about what they're doing.
                          - My mom has me quarantined for the next few days. She says she'll take me on a drive if I feel like I need a change of environment but doesn't want to expose me to possible infection. As much as I hate it, I know that it's for the best. I don't have much energy anyway.
                          - Acid reflux / hiccups come and go. I have meds to deal with them.
                          - I have a TV show playing in the background that I zoom in and out of.
                          - I'm aimlessly browsing the Internet and posting whenever I have the energy.
                          - Playing music is my outlet and I sometimes jam/mess around on my keyboard whenever I have the energy.

                          That's about it for now. I'm looking at the bright side of it all and recognizing all the support I've been receiving and I know it'll be over soon.

                          I'm not looking for any advice; just wanted to share.

                          Thanks all for the tremendous support.

                          Comment


                          • #14
                            Glad to hear things are going well for you!
                            I remember the chemo "cured" my anxiety as well - I just had to concentrate on what was immediately in front of me, no overhead for greater concerns...

                            Good luck with everything!
                            Painless lump 5/18/2017
                            Orchidectomy June 2017 (4.5cm, rete testis involvement)
                            Chemo Summer 2017 (2x7AUC carboplatin)
                            No evidence of relapse since, but plenty of anxiety about it.

                            I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

                            Comment

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