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  • Introduction

    Hello,

    Not sure where is the most appropriate place to post an introduction, so I hope I am in the right spot.

    I figured that since I have already asked a few question via post and PM I should do a proper introduction to our story.

    My husband and I have been married for nearly 18 years and have 3 children (16,13,9). We have known each other since we were kids. He is my very best friend and really the only family I have ever had. Everything good in my life has been because of him. A truly wonderful human being. He is nearly 37 and in great health (other than the dumb TC of course). He does have a crazy amount of cancer in his family. Both paternal grandparent, 3 uncles (divided between both maternal and paternal side) father, and brother all had cancer of one kind or another. His Brother was actually diagnosed with TC back in the late 90's at the age of 18. My husband was his caretaker during his treatment which was deeply traumatizing for him. Not a position a teenager should be put in. His brother is alive today but not without complications from the treatment. Due to this experience he has been vigilant about self exams and was able to catch his disease early

    He noticed a lump in left testicle on 2/3/18. He told me the 7th and I made him go to the ER. Diagnosed via ultrasound. Urologist seen 2/9 orchiectomy 2/12, path report came bay stage 1b 99% Embryonal 1% seminoma with possible yolk sac component...that part was confusing. Met with oncologist 2/20 and decided on adjuvant 1xBEP to be started 3/12.

    We are both in shock and very scared. Although we know it is a high cure rate the cure is rarely achieved easily. The burden of a cure is terrifying in many ways and the knowledge that life and health may never been the same is overwhelming. I have taken on the primary role of research and medical coordinating to ease some of his stress. All I want him to focus on is getting better. I am fighting major anxiety, trying to keep everything normal for the kids, being there to support him in every way possible, as well as working at learning and doing everything I can to get the best possible medical care and outcome. It is a bizarre and surreal experience that I don't know if I can pull off. Thoughts and feelings come in waves. Sometimes I feel positive and focused (although the fear is always close by) moving forward 1 foot in front of the other. Other times I am knocked to floor (literally) by the terror and weight of it all. But I pick myself up and continue. You never know how strong you are until you have no other choice. I hate being strong....

    I have already found so much information on this site and have been very impressed at how kind and knowledgeable everyone is. So thank you for this platform and to all you amazing people. I truly hope we all achieve a happy ending, living long healthy lives full of happiness, with the worst behind us and only smooth waters ahead.
    2/7/18- Husband diagnosed
    2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
    3/12/18-4/1/18 Adjuvant BEPx1

  • #2
    It may be a lonely diease to fight but you are not alone here. The 1 thing you will notice is none of have very good bed side manners and we usually tell it like it is.
    I am sure you guys have some good doctors and nurses taking care of you.
    So with that being said question everything, educate yourself first and foremost on your TC and then be your biggest advocate. Medical staff will do there very best 99.9% of the time. But that .1% may make all the difference in the world.
    We have all been down a very similiar road and have leaned on each other when needed and will continue to do so.
    Jan 2012- U/S mass in Left testicle
    Feb 2012- I/O performed to remove cancer
    Mar 1,2012- pathology pure seminoma
    Mar 7, 2012 PET SCAN stage IIa
    April 2012 Mayo clinic carbolite.
    May 2012 carbolite failed, started BEP x3
    August 7th 2012- BEP complete
    April 2013 CT/PET show relapse
    May 2013 RPLND
    Aug 2013 Relapse again Started VIeP x2
    Oct 2013 HDC AUTOLOGOUS
    Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
    Feb 2014 confirmed false positive all clear FINALLY !
    Jan 2015 1 year cancer free Pet/CT scan
    Jan 2016 2 years cancer free "Pet/CT scan
    Jan 2017 3 years cancer free "Pet/CT scan
    Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

    Comment


    • #3
      MELANIE~Sorry to welcome you here. Glad your husband was able to catch early. Wishing you both best during the 1 round of BEP.
      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


      • #4
        Thank you!
        2/7/18- Husband diagnosed
        2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
        3/12/18-4/1/18 Adjuvant BEPx1

        Comment


        • #5
          Hi Melanie! Im a worried wife just like you. My husband had a 5.5 cm tumor and had a left i/o on 2/13. Went for results 2/23 and he has pure seminoma. We still need to get a ct scan to find out if it spread. But i cant help to worry everyday. My husband looks depressed and tired. I think surgery and knowing he has cancer affected him emotionally. It affected me alot too. Im trying to be strong for him and our kids. Hang in there ok. You will guys will get through this. This forum is amazing and theres so much info. You are not alone.

          Comment


          • #6
            Hi Violet0729, Thanks for reaching out. I am sorry you are going through this as well, but nice to know you are out there. It is an isolating experience in many ways. Friends and family are well meaning but I find their attempts to help and understand the situation very taxing. This forum has been very helpful so far. How old are your kids? It is so hard wanting to protect them from things that are out of your control, isn't it.
            Last edited by melanie; 02-26-18, 05:07 PM.
            2/7/18- Husband diagnosed
            2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
            3/12/18-4/1/18 Adjuvant BEPx1

            Comment


            • #7
              Yes Melanie i agree with you. My kids are 18,10 and 3. It has been very stressing for them too but we try our best to not talk about my husbandís cancer in front of them anymore. Not all my family knows whats going on, only the close family knows because sometimes they just make things worse in my opinion. I feel lonely sometimes and hopeless. But im here if you need to talk ok

              Comment


              • #8
                I feel the same way. I wish we didnt have to tell anyone. So far no one has been very comforting of helpful.
                How are the kids doing with it? Ours seem ok but its hard to tell. The youngest is the most worried. We just try to keep things normal and not show our fears and that seems to help them. Worried how they will be once treatment starts though. I can barely think about it.
                When will you guys know about the CT results for your husband? Were his blood markers good? I have heard seminoma is most likely to be cured with surgery alone since it is a slow grower. Hopefully he is cured already and you guys don't have to think about any further treatment other than surveillance.
                2/7/18- Husband diagnosed
                2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
                3/12/18-4/1/18 Adjuvant BEPx1

                Comment


                • #9
                  Hey Melanie, my boy 18 and 10 yr old are taking it ok i guess but they hardly talk about it as for our 3 yr old he doesnt know whats going. My family hasnt been much help or support. I get more support from strangers and from this forum. We will be going to ct scan and oncologist on March 9. Im still worried about because even though he has pure seminoma, it can still spread and hes been coughing and loosing weight these days. The mind can play tricks lol but you never know and we have been stressing and a little depressed with all this. Cancer changes your life completely

                  Comment


                  • #10
                    It does change your life completely. It feels like we have been dropped on mars or something. I have a bit depressed to and having anxiety attacks. No fun. I know what you mean about your mind playing tricks. Sometimes I feel thoughts spinning out of control and am powerless to stop the terrifying what ifs. I wish you the best of luck on the 9th! I felt a bit better after all the tests were done and had meet with the oncologist. It helped not having it guess what was going on anymore. I will be thinking about you and wishing you well! Please feel free to message me anytime if you want!
                    2/7/18- Husband diagnosed
                    2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
                    3/12/18-4/1/18 Adjuvant BEPx1

                    Comment


                    • #11
                      Thank you Melanie and good luck to you guys too. Im here if you need to talk 😊

                      Comment


                      • #12
                        Hi Violet, I know it's rough, especially when family isn't supportive, but it helped us to explain things to our 3 year old in plain terms that daddy's sick and might need to be in a hospital and we really made it part of his reality at the hospital and seeing the doctors and playing the doctor with medical today - this way our little boy felt included... Let me know if there's anything I can do to help
                        July 2016 - Left I/O
                        December 2016 - BEPx3
                        All clear for 1 year!

                        My Testicular Cancer Support Kit
                        First Oncologist Visit Checklist
                        3 Things I Wish I Knew Before I Started Chemo
                        3 Reasons Why People Disappear From Your Life During Cancer
                        Simplify Cancer Podcast

                        Comment


                        • #13
                          Melanie - I assume CT and bloodwork are clear? If so, it sounds like you guys are on track and doing well. It seems very daunting right now but statistics are majorly on your side and chances are very good that 2 years from now this will be a distant memory. I'm roughly 2 years out and other than visiting these forums and my checkups I rarely even think about it.
                          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!
                          9/27/2018 all clears up to this date!

                          Comment


                          • #14
                            Biwi- Yes, blood work and CT clear. Stage 1b due to LVI. I feel confident that we are making the right treatment choice to do 1xBEP in general. RPLND was not recommended to us due to the EC amount and we were told it would lower relapse from 50% to 20% which doesn't feel feel like enough to us. Chemo is scary to me because of all the long term risks. I feel like I will be waiting for something bad to happen for the rest of my life. Since he had normal markers I am worried that those wont be a great screening tool in the future. His brother said the markers were what caught his relapses and the CT missed things, like a lymph node the size of a lime. Do you know if CTs have improved much over the last 18-20 years?
                            Thanks for your support and I am so glad you are doing well! You give me hope and I am beyond grateful that you have stuck around on this board to help others. What a awesome guy you are!
                            Last edited by melanie; 02-27-18, 12:28 PM.
                            2/7/18- Husband diagnosed
                            2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
                            3/12/18-4/1/18 Adjuvant BEPx1

                            Comment


                            • #15
                              Missing something that large on a CT these days seems pretty rare, we rarely see reports of it on here anyway. Not sure about how they have improved. Thanks for the kind words!
                              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!
                              9/27/2018 all clears up to this date!

                              Comment

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