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  • Newly diagnosed

    Hi All, firstly my name is Darcy Im 27, from South Australia and Ive had an interesting 3 weeks.
    Below is a run down on where Im at.

    I found a lump on my Right testicle on 18/12/17 made an app with GP following day and was sent for ultrasound. US showed 17mm x 8mm x 11mm solid mass, referred to Urologist marked as urgent referral.
    Must add here my GP spent 4 hours on the phone to the Royal Adelaide to ensure I was seen ASAP.

    Seen urologist on 4/1/18 he booked me in for pre op the following day and then had the right testicle removed on Monday the 8/1/18.
    Recovering as good as can be expected.

    As its all happened so fast ( for which Im thankful) I dont realky have the full details of all the test results etc all I know is that it was definatly TC and I have an app with my urologist later this week to discuss in more detail.

    I had a CT scan before the op that showed as they described small black spots on my lungs but all the lymph nodes in my stomach looked ok, so thats a positive.

    Basically just trying to keep my head up and take it head on and just looking for a heads up on what happens from here?
    Basically is chemo a common thing as it was found to be TC? Or do they only do the this if they find more etc?

    Obviously Im not looking for sound medical advice as I understand every case is different etc Im just looking for what may possible options to expect.

    Thanks in advance

  • #2
    Well what happens next depends on staging and cancer cell type. It could range from survallence to chemo and or radiation. The not knowing is the worst part, once you get the results and staging you will feel alot better about what is going on and what direction to go. Sorry i cant give you any more medical related advice. Just know that you have options and your prognosis is still very very good
    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
      I'm sorry you are going through this -- the waiting game is the most difficult.

      Consult your doctors, but my understanding:

      The docs look at the following:

      1. Blood tumor markers (lab work)
      2. CT or X-ray scans
      3. Pathology of the testis tumor

      I think what will happen next is that the pathology report will say if the mass in the testis is testicular cancer or not. If it is then, they will look at staging (how far it has progressed). For that, they look at the CT scan and blood markers. If only local to the testis then surveillance, adjuvant chemo (1xBEP or 1xCarboplatin) or RPLND may be options.

      In the case of metastatic cancer (beyond testis) AND positive blood markers then 3xBEP chemo is the standard treatment. 4xEP is used in cases of age >55 or other lung-related contraindications. If spread locally to retroperitoneal lymph nodes only (Stage II) and marker-negative then RPLND surgery may be an option, but only if done by a regional expert.

      Also, note that negative blood tumor markers don't rule out TC.
      Age 31 - Portland, OR
      01NOV16- Pain in right testicle, palpable mass
      13NOV16- R I/O. Markers normal
      27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
      06DEC16 - CT scan clear
      09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
      03JAN17- Ended 1xBEP; start surveillance
      18MAR17-2nd pathology report shows 90% EC , 10% seminoma

      Comment


      • #4
        Keep a positive outlook! The 5 year survival rate is very very high. In countries like the UK and Australia Ive read its around 98% of all cases including the more advanced ones! Based on what you said about your original CT scan you are in a good place it seems if they found only one spot. Im not a doctor, but from what Ive read from the forums if the spot is cancerous, which is may not be I dont know, it may have an Embryonal Carcinoma component as Ive read it sometimes skips lymph and goes to the lungs. The positive though would be Embryonal is equisitively sensitive to BEP chemo if you do end up needing it according to Dr. Einhorn who is the leader of the world in treatment of TC. Regardless in a few months this will all seem like a bad dream and youll be able to move on!
        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
          Spots on the lungs could be worrisome or could be nothing. Spots are actually fairly common. What did your doc have to say about them?

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

          Comment


          • #6
            Thanks for the replies guys!

            The doc has said they will need more CT scans to asses the lung spots and said we would know more after these scans.
            He said the tumor wasnt defintaley cancerous but was waiting in the results from the rumor marker and other bloods etc to see where we go next.

            Im firm believer that keeping a positive frame of mind is detrimental to a good outcome so thats what Ive been doing, stress isnt going to make it go away so Im doing everything possible to keep my mind off it & just concentrate on getting rid of it.

            Really just trying to get a rough idea on whats next, and speak to others that have been / are in the same or similar situation.

            Ive been open about the whole process with friends, family and co workers and the amount of support I have is amazing and if anything has brought us closer together.

            P.s sorry about the essay.

            Comment


            • #7
              Hi Aussie,
              How are things going for you now?
              I'm sure you've heard by now that chemo is sometimes an option for TC, and sometimes it's better just to follow along with surveillance.
              Either one can be unsettling, it's never fun to learn one has cancer, but it's great to hear you've gotten a lot of support from those close to you.

              Hoping to hear things are a bit clearer now, let us know if there are new questions we can help you figure out...
              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


              • #8
                Hi, I just got back from 3 month surveillance results and everything looks ok, apart from 3 small modules on my lungs. Doc wants to leave it for 3 months to measure growth rate as there is only a 50 / 50 chance it’s actualky the cancer again.

                Mentally though the stress between scans etc for the surveillance is so draining and stressful. I know people tell you not to stress and there is an excellent cure / survival rate I can can’t shake it from my daily thoughts.

                Comment


                • #9
                  What really helps me the most is to occupy my mind with as much stuff as i can. Makes it easier to get through the between spots. As you progress thru the process and your check ups become less frequent it does start to get a little easier
                  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


                  • #10
                    Glad all is okay, except for mental stuff. Anxiety is not uncommon, so sorry.
                    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


                    • #11
                      Thanks guys, I thought I had prepared myself mentally but I was way off.
                      I’ve been doing exactly what you’ve said and kept my mind busy but it always makes its way back in there at the strangest times.

                      I think the words I’ve been wanting to hear are “You’re cancer free” instead of the “it looks like you should be cancer free”.
                      I know it’s something small and trivial but none the less it plays on te mind.

                      I think the other thing is I prepared myself for the full rounds of chemo or Rad therapy etc mentally but didn’t go down that path so I almost feel like I got away to easy (if that makes sense).
                      Anyways thanks for listening 😊

                      Comment

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