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My current backstory.

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  • My current backstory.

    Hey All,

    So here goes, on Monday after work I found my right ball had solidified and swollen, I phoned my Dr and I was in 10 minutes later. Was told it was most likely an infection and nothing to worry about, but she would refer me to the urologist at the local hospital. Appointment was made and I was in Thursday morning, Urologist was like if I was a gambling man it’s an infection, but as he said it felt weird but there were no lumps he gave me antibiotics, booked me for bloods and got me a same day ultrasound. He told me he'd get the results that day but he would phone me the following day.

    I went back for the ultra sound the lady spent 15/20 minutes just on the swollen ball, 2 minutes on lefty. She told me I had to get back in contact if I wasn't called within 48 hours. I was still fine at this point was seeing where it was going but taking it reasonably well. I didn’t hear anything so I phoned them at 4:30 on Saturday. The urologist I spoke to wouldn’t tell me anything over the phone but got me in the ACU the following morning. once there a nurse came and started doing all my observations, if I hadn’t already guessed the worst at this point I would have known then.

    I saw the urologist and they found 2 "concerning" lumps on my right testicle and that they would book me in to have it removed this week. after being told I’d hear Monday when I didn’t I phoned them, once again I was told I’d hear the next day, which I didn’t so once more I phoned them. Spoke to a rather rude secretary who said it was now nothing to do with them and I’d hear when I hear.

    they finally phoned me today telling me that not only was it not being done this week like they said but it'll be next Friday instead. I feel like the initial rush has stalled and now imp just left metaphorically and physically hanging around. I have a weekend away booked after my op (booked months ago) other than bruising will it be ok to walk around or should I cancel while I can? Also is it strange that I haven’t been given any of my current results? They’re just like we’ve seen this we want it out.

  • #2
    Where do you live? Personally,I'd be looking for a new doc. You should have been given at least a copy of the U/S report by now & that they are putting you on the back burner suggests they are thinking it's not TC to me.I think I'd want a 2nd opinion before letting them do an I/O at this point.

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

    Comment


    • #3
      I’m in the UK so it’s NHS, I should probably phone and ask for the actual results, I say they’ve put me on the back burner what’s happened is the urologist wanted it this week but they didn’™t have any times before Friday for the surgery. To go private now I’d have to get married.

      Comment


      • #4
        Originally posted by Breckarns View Post
        To go private now I’d have to get married.
        Wow, Our health care system sucks, but at least marital status has no influence on what care we can get....

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

        Comment


        • #5
          Originally posted by Davepet View Post
          Wow, Our health care system sucks, but at least marital status has no influence on what care we can get....
          Well I don’t have private medical with my job as I’m only new if this happened in a year no problem. My partner has private but because we’ve only been together for 10 years but we’re not married I can’t use her policy.

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          • #6
            Originally posted by Breckarns View Post

            Well I don’t have private medical with my job as I’m only new if this happened in a year no problem. My partner has private but because we’ve only been together for 10 years but we’re not married I can’t use her policy.
            Clearly I do not understand your system as well as I thought, I thought "private" meant you paid out of pocket for anything not covered by national health? How does it actually work?
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment


            • #7
              Originally posted by Davepet View Post

              Clearly I do not understand your system as well as I thought, I thought "private" meant you paid out of pocket for anything not covered by national health? How does it actually work?
              Private medical insurance just means that you don’t have to wait as long as NHS treatment, plus you get some bonuses like private rooms, better food etc. It’s exactly the same treatment but it’s like going coach to business class on a plane.

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              • #8
                So I had the I/O on Friday, is it just in the UK where they keep you hanging around. Got a letter as they walked me out the door saying I wouldn’t be back in hospital for 3 weeks. Anyone else from England have to wait, plus they haven’t mentioned CT scans or anything. They just took righty and pushed me out the door.

                N

                Comment


                • #9
                  Hey Breckarns,

                  I'm not from the UK, but I had my I/O done almost 2 weeks ago around 9am in the morning, and I left by 2 or 3 in the afternoon. I got a piece of paper with a follow up appointment scheduled for two weeks later (tomorrow, to be exact). I did not have any scans scheduled, and I was pretty clueless about the next step. About 4 days later the doc called me with the pathology report, and then said someone was going to call me to schedule scans within a few days. I'm not sure how things work over there, but perhaps the doctor will be calling you between now and your next appointment to let you know what the next step is?
                  My story so far: 7/22/2018: Discovery rock hard mass on testicle while on vacation 7/26/2018: Urologist confirms mass; 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 8/17/2018: CT of chest clear, abdomen shows one lymph node 1.7 x 1.3. Staged IIA 8/22/2018: First radiology appointment, debating surveillance vs 3 weeks radiation

                  Comment


                  • #10
                    Originally posted by ICU-RN View Post
                    Hey Breckarns,

                    I'm not from the UK, but I had my I/O done almost 2 weeks ago around 9am in the morning, and I left by 2 or 3 in the afternoon. I got a piece of paper with a follow up appointment scheduled for two weeks later (tomorrow, to be exact). I did not have any scans scheduled, and I was pretty clueless about the next step. About 4 days later the doc called me with the pathology report, and then said someone was going to call me to schedule scans within a few days. I'm not sure how things work over there, but perhaps the doctor will be calling you between now and your next appointment to let you know what the next step is?
                    Hey ICU-RN,
                    Cheers for the heads up, been just over a week for me now and no phone calls, another site I went on seemed sat that the NHS spends 2 weeks on histology/MDT meetings, so I’m patiently sat here twiddling my fingers. I never realised how much cancer makes people uncomfortable. Told all my close friends to check themselves etc, we’ve now gone from daily conversations to weekly texts 😂

                    N

                    Comment


                    • #11
                      So I had a meeting today with my urologist, was definitely cancer I had to ask what type. His response wasn’t that helpful, basically it’s a non seminoma but they originally thought mixed now they reckon pure embryonal. but he then said because TC is rare and they don’t get that many cases I’ve been transferred to Addenbrookes which deals with TC more, so once I’ve had my scans Addenbrookes will do their own pathology and they will have a better idea of where I’m at.

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                      • #12
                        Also ive never had any markers during any of my blood tests does this mean anything?

                        Comment


                        • #13
                          Originally posted by Breckarns View Post
                          Also ive never had any markers during any of my blood tests does this mean anything?
                          Not really.... blood markers that are not raised could mean anything... or nothing. It could mean that you caught the cancer so early that it hasn't affected those levels yet (fingers crossed that's the case!), or your particular cancer is just not going to raise your markers. My blood markers were never raised either, but I had a pure seminoma, and it's pretty common for that type to not affect tumor markers. I don't have as much experience with non-seminoma's, but from what I've read online and on this forum, it could mean anything. So I would wait to see about your pathology, and then I assume you'll go for scans to see if it's gone into your lymph nodes or elsewhere. Keep us updated, and hopefully you caught it extremely early!
                          My story so far: 7/22/2018: Discovery rock hard mass on testicle while on vacation 7/26/2018: Urologist confirms mass; 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 8/17/2018: CT of chest clear, abdomen shows one lymph node 1.7 x 1.3. Staged IIA 8/22/2018: First radiology appointment, debating surveillance vs 3 weeks radiation

                          Comment


                          • #14
                            Some good news! 9 weeks after finding righty was growing, I have results and I finally know what’s happening. So my results are stage 1A pure embryonal carcinoma, tumour was 45mm Max. So I’m on surveillance for the foreseeable future. Took long enough but hopefully that means this is the end of it.

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                            • #15
                              I wonder what surveillance plan they follow in your country for TC? Wishing you the best.
                              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.

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