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Just found out yesterday.... surgery friday.... anxiety through the roof

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  • Just found out yesterday.... surgery friday.... anxiety through the roof

    Things had been going so well. I had a newborn daughter 7 weeks ago, and I got married last month... after 3 years of intense schooling I graduated in May from nursing school and I started my new dream job in the Intensive Care Unit of a local hospital a week and a half ago. Things couldn't be looking better... until I noticed the change in my right testis. We were actually on vacation at the time, and one night while in bed I noticed a hardness on righty. It was really a "lump", but one section of the ball was almost rock hard. It was a startling change! I immediately started to panic a little, and went onto Dr. Google and started researching. I found this site, during my search, and that has been helpful as well. After looking around, I decided my first step would be to contact a urologist. Wednesday morning last week (7/25/2018) I called the hospital to make a urology appointment, but I was told I needed a referral first. I called my PCP, who said they could get me in to the doc in about 2 weeks. That was not going to fly. So I zipped on down to the local urgent care center, and they said they noticed something as well, and gave me the referral, but mentioned it could take a few days to get anything scheduled. Thursday morning I get a call (that was quick!) to set up my appointment. I was told the urologist had about a 2-3 week wait for new patients... nothing I can do about that. Luckily enough however, that same afternoon I get another call from the scheduler who said that they had a cancellation, so could I come in the next day at 1030am? I was going to be in orientation at the hospital at the time, but I said yes anyway. I knew I could work in out with my trainer the next day, which I did. Friday 1030. Anxiety levels are going through the roof. BP elevated to 140/92, most likely nerves. The doc comes in and after I give a short explanation of my symptoms, he tells me to drop the pants. After a quick manual examination, maybe 30 seconds, he tells me that he does see what I'm concerned about. He sends me for bloodwork and an ultrasound the same day, but my follow-up would have to wait until the next Tuesday (yesterday, 7/31). And yesterday was my follow up. Even more anxiety, BP 156/102. Waiting for the doc to come in. Fingers crossed it's not too bad. He comes in, and starts off by saying that my bloodwork looked great, no tumor markers, but my testicle did not. 1.2cm x 1.3cm x 0.9cm mass, "highly suspicious of neoplasm". And just like that, it's cancer. I am now being scheduled to have my I/O on Friday. I could've had it today, but I opted to wait until Friday so they could order the prosthesis. Next week it'll be full body scans, and talk about follow-up treatment based on the pathology and staging. I'm nervous. I think it's good news that the tumor was rather small, and the bloodwork was fine... but it's still could have spread, right? I know TC is very curable, but it's still a shock to hear the big C word. Is it possible that it's gone elsewhere, even with normal AFP and HcG levels? I want to make sure I'm still around for my newborn daughter, and I would like to get back to my new job as soon as possible... Doc says that even localized, he'd probably recommend 2 weeks of radiation therapy afterwards. Looking online I see other treatment options include a few rounds of BEP or EP instead. Which is worse, the chemo or the radiation (if further treatment is needed of course)? I'm just trying to be prepared.
    My story so far:
    7/22/2018: Discovery rock hard mass on testicle while on vacation
    7/25/2018: Go to urgent care center, who provides referral to urologist
    7/26/2018: Urologist has cancellation so I get in quickly. Mass confirmed, immediately get blood work and ultrasound.
    7/31/2018: Ultrasound result show mass in right testicle, "highly suspicious of neoplasm".
    8/3/2018: Right I/O
    8/7/2018: Pathology confirms 100% seminoma. Multifocal. 2 tumors, both 2.5 x 2.5 x 2cm. LVI present. No cord involvement.
    8/14/2018: CT of chest/abdomen/pelvis complete
    Follow up for results review on Friday, 8/17, 9am

  • #2
    I always hate being the 1st reply to the new guy ! Anyways, welcome to the TC family. Once you join it you can't leave it. Rest assured that you have found a new, great and supportive family full of experience and good advice.

    First off: Until you have the pathology report and a CT scan * Do Not * decide on any treatments. The pathology and CT yet to come are part of the Staging process. From that you will be able to make informed decisions about next steps.

    I would not worry about Radiation or Chemo just yet. Again wait till CT and Pathology are in.

    You have no raised markers (bHCG and AFP)....what about LDH ? Since neither of those are elevated I would guess that you may be looking at a Seminoma....just a guess.

    Short answer is Yes; it's possible to have spread with no markers.

    You will be here to see that new daughter of yours.

    - 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
    July 10th 2018: 4 YEARS ALL CLEAR !

    Comment


    • #3
      Matt is right. Wait to have all the info before making decisions. Also your doc sound old school, the trend is to surveillance for most stage one TC, but he isn't the one that should be calling the shots, you should be referred to an oncologist for that.

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

      Comment


      • #4
        Hey thanks guys. I appreciate the feedback. Fingers crossed that everything is as clear and simple as the doctor said it might be. I'm reserving judgment until after the pathology and scans next week. I'll post updates as I get them.

        Oh, and JemskiM69: my LDH was in the normal range as well. Only thing elevated were my liver enzymes, and only slightly.... which would make sense, I had just come back from a weekend vacation, and the drinks had been pouring freely.
        My story so far:
        7/22/2018: Discovery rock hard mass on testicle while on vacation
        7/25/2018: Go to urgent care center, who provides referral to urologist
        7/26/2018: Urologist has cancellation so I get in quickly. Mass confirmed, immediately get blood work and ultrasound.
        7/31/2018: Ultrasound result show mass in right testicle, "highly suspicious of neoplasm".
        8/3/2018: Right I/O
        8/7/2018: Pathology confirms 100% seminoma. Multifocal. 2 tumors, both 2.5 x 2.5 x 2cm. LVI present. No cord involvement.
        8/14/2018: CT of chest/abdomen/pelvis complete
        Follow up for results review on Friday, 8/17, 9am

        Comment


        • #5
          Don't let a bum testis / cancer get in the way of drinks !

          - 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
          July 10th 2018: 4 YEARS ALL CLEAR !

          Comment


          • #6
            Update. Had right I/O today a 8:30 am. Insurance wouldn't cover the prosthetic, which is disappointing, but really it's the least of my worries. Now I'm laid out on the couch, feeling like I've been kicked in the stomach. Pain could be worse, really it's only hurting in the incision area... Unless I cough or laugh, then WOWZA

            Anyone know how long the pathology is going to take? Doc didn't give a timeline, just said he'd call with the pathology, and I have a follow up with him in about 14 days. Fingers crossed everything is ok. I'm guessing 5-7 days for the report?
            My story so far:
            7/22/2018: Discovery rock hard mass on testicle while on vacation
            7/25/2018: Go to urgent care center, who provides referral to urologist
            7/26/2018: Urologist has cancellation so I get in quickly. Mass confirmed, immediately get blood work and ultrasound.
            7/31/2018: Ultrasound result show mass in right testicle, "highly suspicious of neoplasm".
            8/3/2018: Right I/O
            8/7/2018: Pathology confirms 100% seminoma. Multifocal. 2 tumors, both 2.5 x 2.5 x 2cm. LVI present. No cord involvement.
            8/14/2018: CT of chest/abdomen/pelvis complete
            Follow up for results review on Friday, 8/17, 9am

            Comment


            • #7
              It was 3 days for me. Did they send you for CT scans? Take it easy after the operation, man, you should be good again in a few days!!
              July 2016 - Left I/O
              December 2016 - BEPx3
              All clear for 1 year!

              My Testicular Cancer Support Kit
              First Oncologist Visit Checklist
              Simplify Cancer Podcast

              Comment


              • #8
                The IO is tough. I remember any slight mismovement and the searing stabbing pain pretty vividly. Anyway, you're now moving away from the guessing game. Your pathology will come back. A day, week, month, doesn't matter when. Your treatment will not be affected so don't worry about things that aren't in your control. The biggest piece of advice I can give for IO recovery is to remember to move while breathing out. Holding your breath and exerting just makes the pain worse.

                Comment


                • #9
                  Update: Pathology results in. 100% seminoma. Doc says "if you get cancer, that's the type to get". Next stop is full body scans to check for spreading. I guess its good news, but my biggest worry is that since seminoma's don't usually raise blood markers, it may have spread elsewhere. Fingers crossed it hasn't, we'll find out after the scans. Things are moving so fast, but somehow doesn't feel fast enough.
                  My story so far:
                  7/22/2018: Discovery rock hard mass on testicle while on vacation
                  7/25/2018: Go to urgent care center, who provides referral to urologist
                  7/26/2018: Urologist has cancellation so I get in quickly. Mass confirmed, immediately get blood work and ultrasound.
                  7/31/2018: Ultrasound result show mass in right testicle, "highly suspicious of neoplasm".
                  8/3/2018: Right I/O
                  8/7/2018: Pathology confirms 100% seminoma. Multifocal. 2 tumors, both 2.5 x 2.5 x 2cm. LVI present. No cord involvement.
                  8/14/2018: CT of chest/abdomen/pelvis complete
                  Follow up for results review on Friday, 8/17, 9am

                  Comment


                  • #10
                    Dont worry yourself over it. There is nothing you can do to change the outcome. If it hasnt not spread then itd surveillance. If it has spread you can do BEP or RT.
                    That was the hardest part for me to get comfortable withth was the not knowing. Once you get into the mindset that you can not change the past and worrying doesnt help. Instead focus on if its this you will do that. If itd something else then you will deal with that too. Regardless you have a better than 85% chance of being cured even before you get your scan.
                    So again dont sweat the past just prep yourself for what lies ahead.
                    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


                    • #11
                      Originally posted by eodtech2001 View Post
                      Dont worry yourself over it. There is nothing you can do to change the outcome. If it hasnt not spread then itd surveillance. If it has spread you can do BEP or RT.
                      That was the hardest part for me to get comfortable withth was the not knowing. Once you get into the mindset that you can not change the past and worrying doesnt help. Instead focus on if its this you will do that. If itd something else then you will deal with that too. Regardless you have a better than 85% chance of being cured even before you get your scan.
                      So again dont sweat the past just prep yourself for what lies ahead.
                      Thanks! Yeah the little bit of anxiety from not knowing is the worst, but so far I've felt pretty lucky with how everything is going. I'm in relatively good spirits, considering the circumstances! For now I'm gonna focus on the football preseason beginning, and try not to focus on the scans and such until I have to.
                      My story so far:
                      7/22/2018: Discovery rock hard mass on testicle while on vacation
                      7/25/2018: Go to urgent care center, who provides referral to urologist
                      7/26/2018: Urologist has cancellation so I get in quickly. Mass confirmed, immediately get blood work and ultrasound.
                      7/31/2018: Ultrasound result show mass in right testicle, "highly suspicious of neoplasm".
                      8/3/2018: Right I/O
                      8/7/2018: Pathology confirms 100% seminoma. Multifocal. 2 tumors, both 2.5 x 2.5 x 2cm. LVI present. No cord involvement.
                      8/14/2018: CT of chest/abdomen/pelvis complete
                      Follow up for results review on Friday, 8/17, 9am

                      Comment


                      • #12
                        Sounds like you have been able to exhale and relax a bit with the information pouring in.

                        Since seems like every one has all the big things covered.

                        Enjoy having only the lonely, you now have less resistance.

                        Other than that I don’t know much about pure seminoma.

                        Comment


                        • #13
                          Update: Had a huge fight with insurance last week. Cigna attempted to deny to cover my CT scans! Their nearly exact words were "You have testicular cancer, why do you need a chest and abdomen CT?" They attempted to only approve a pelvic CT, which most likely would not have shown if it had metastasized into my lymph nodes. Myself and my doctor were floored by this; I mean it's medicine 101... they can't even properly stage the tumor, much less decide on a treatment, if I don't get the scans! And I don't have $8-10k lying around to pay for it myself. This put me into a bit of an anxiety tailspin for a few days. But luckily, after appealing and sending to medical review, we managed to get the full chest/abdomen/pelvic scan approved! So it's a good ending at least, it was just a bit of a shock to hear that these scans were denied. Per my urologist, Cigna appears to be the only company that does this, they are known for denying common, necessary scans.

                          CT scan with IV contrast tomorrow at 9:40 am, and a follow up with the urologist to go over everything on Friday 8/17 at 9am. Fingers crossed for good news!

                          And another big thanks to everyone on this site. It's been a great source of information and comfort these last couple weeks.
                          My story so far:
                          7/22/2018: Discovery rock hard mass on testicle while on vacation
                          7/25/2018: Go to urgent care center, who provides referral to urologist
                          7/26/2018: Urologist has cancellation so I get in quickly. Mass confirmed, immediately get blood work and ultrasound.
                          7/31/2018: Ultrasound result show mass in right testicle, "highly suspicious of neoplasm".
                          8/3/2018: Right I/O
                          8/7/2018: Pathology confirms 100% seminoma. Multifocal. 2 tumors, both 2.5 x 2.5 x 2cm. LVI present. No cord involvement.
                          8/14/2018: CT of chest/abdomen/pelvis complete
                          Follow up for results review on Friday, 8/17, 9am

                          Comment


                          • #14
                            Good on you for standing up to them!! Good luck for the test
                            July 2016 - Left I/O
                            December 2016 - BEPx3
                            All clear for 1 year!

                            My Testicular Cancer Support Kit
                            First Oncologist Visit Checklist
                            Simplify Cancer Podcast

                            Comment


                            • #15
                              ICU-RN,
                              I'm another newbie to this whole experience. I'm just about 6 weeks ahead of you in your timeline. My mass was significantly larger, and my bHCG was elevated.
                              Your blood pressure measurements were just about the same as your's both times when I visited my urologist. When I visited my PCP for my pre-op checkup, my blood pressure was perfect.Go figure, right?

                              "Not knowing" and the endless waiting for the test and test results, have been the most trying part of the process. You are fortunate to have found this forum as early as you did... it took me a couple of weeks to find it.

                              Interestingly, my urologist also mentioned 2 weeks of radiation would probably be the way to go. During my first meeting with my oncologist, he took radiation of the table pretty quickly. He said that Carbo X1 was as effective, and generally tolerated better. My chemo was completed on 7/25/18. So far, chemo recovery has been fairly uneventful. (I still have moments of anxiety.) The oncologist recommended that surveillance was best choice, unless I wanted to be aggressive. I had a couple of risk factors that helped me decide to go with the adjuvant chemo.

                              ---------------------------------------
                              6/4/18 BHCG 452, AFP 1
                              6/13/18 CT Scan, no involvement beyond left testicle
                              6/18/18 Radical Left inguinal orchiectomy, Pathology pure seminoma, rete testis obliterated
                              7/1/18 BHCG 7, AFP 1.5
                              7/12/18 BHCG<1, AFP 1.5, LDH 220, Diagnosed as Stage 1b, T3N0
                              7/25/18 Adjuvant Chemotherapy, 780mg Carboplatin
                              8/27/18 Next CT Scan scheduled
                              9/7/18 Follow up oncologist appointment scheduled

                              Comment

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