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  • #16
    Hello,

    Just joined today and wanted to introduce myself. I live in London and was diagnosed a few weeks ago. Currently recovering well from my orchiectomy and awaiting news on what further treatment I will require. Joining because I'm searching for information from people about various aspects of possible treatment, mainly the potential for hearing loss from . Being a professional musician, this has been by far the biggest concern for me as any hearing loss could seriously impact on my life and work, and I'm looking for people who may be able to shed some light on this before I meet with the oncologists.

    ​The other thing I'm curious about is that I presented my symptoms to a G.P. (lump on the testicle) very early on and told that I "definitely don't have Cancer". I now realise that this was a completely reckless thing to have been told and I'm keen to find out how prevalent this is among G.Ps in the UK as it resulted in a three month delay to my diagnosis and eventual orchiectomy. Does anyone else have a similar story as this is something I'm willing to take further if it might mean an earlier diagnosis for the next person.
    March 2014: Diagnosed with TC (Non Seminoma), Right IO. Currently awaiting staging tests

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    • #17
      Hi Sk,
      "Welcome" to the club! Others better qualified will come in. Your staging and your pathology will dictate the options available to you. If you require chemotherapy then the main drug is Cisplatin and this does have potential hearing and peripheral neuropathy issues. If you search this site you will see a number of people with either or both issues - some major, some minor. Some people also don't have any side effects. I am in the minor category for both - I have some tinitus some nerve issues in my finger tips/feet. But neither are particularly serious (to me) and I don't really notice them now.

      As for miss-diagnosis; that is not as uncommon as it should be. My first cancer was miss-diagnosed twice. First by my GP (who thought is was a mild infection) and second by the urologist a locum referred me to six months later. That urologist was convinced it was a hydrocele and was as "surprised as me" when the ultra sound came back with TC. To be fair to the GP's most never, or very rarely, see people with TC. That said an ultra sound is quick, simple and "definitive", it does make me wonder why in some circumstances it isn't offered as a matter of course.

      Take care
      DZ

      Jan 2009: RHS (Seminoma) & RT
      Mar 2010: LHS (Embryonal Carcinoma)
      Sep 2010: Relapse & 3 x BEP
      Mar 2015: Five years "nut free"
      http://doublezeroami.blogspot.com

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      • #18
        Thanks for your message DZ. I think I will also post my question about Cisplatin and hearing loss on one of the chemo forum pages to see who has advice about it. I've been told it would be wise to expect some chemo treatment so I want to know as much as possible about it.

        Out of interest, did you ever lodge a complaint about your mis-diagnosis?
        March 2014: Diagnosed with TC (Non Seminoma), Right IO. Currently awaiting staging tests

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        • #19
          Hello Skerprasco,
          My son was misdiagnosed for 3 months for swelling and pain of the testicle. The oncologist told me it happens more often then you'd think because many urologists never see testicular cancer. After 3 months of exams, 3 ultrasounds, and rounds of antibiotics later for hydrocele, epididymitis and orchitis, my son opted for an orchiectomy due to the pain he couldn't live with anymore. One week later the pathology report came back cancer and they still never found any tumor found in his testicle. Cancer was found on his epididymis and spermatic cord. He had BEP x3 which included Cisplatin. He had ringing in his ears during chemo but it has since resolved. He has pretty intense neuropathy in his hands and feet which he is on medication for, but it doesn't help much. He hopes it will lessen with time. I hope you get all your questions answered and get to speak to the oncologists about your treatment options when everything comes back.
          9/6/13 Left I/O. 18 year old son diagnosed 9/13/13 Stage 2C. Path report: embryonal and yolk sac with spermatic cord involvement and lymphatic invasion BEP x 3 finished 11/25/13. PC-RPLND with Dr. Foster at IU on 1/21/14. Found only dead cancer! Surveillance as of 1/23/14. All clear as of 5/2018.

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          • #20
            Originally posted by skerpracso View Post
            Out of interest, did you ever lodge a complaint about your mis-diagnosis?
            No I didn't. The urologist's miss-diagnosis wasn't really an issue - because he did the correct thing by referring me for an ultra-sound. As for my main GP (certainly since TC) I have become more sceptical about GPs - they are "general". I am/was the only TC patient he has seen (and certainly the only 2 x TC'er). But they are general, then don't necessarily understand, or are as informed, as they could be, but that's not just about TC. I think it goes across other diseases as well...

            Jan 2009: RHS (Seminoma) & RT
            Mar 2010: LHS (Embryonal Carcinoma)
            Sep 2010: Relapse & 3 x BEP
            Mar 2015: Five years "nut free"
            http://doublezeroami.blogspot.com

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            • #21
              Hi team,
              I've just been diagnosed. Had swelling and a very hard testicle and saw the GP the next day - seemed to happen overnight. The GP thought this was an infection but booked me in for a scan to be safe. I had the scan on Thu this week, and was told there and then it was a tumour and would need to be removed. I spoke with the consultant half an hour later, accompanied by the Macmillan nurse; booked in for removal next Thu. Then off for a CT and blood test and I'm now waiting for those results. So, all very sudden and as yet I don't really know what I face. It's left me pretty scared. I'm married with two young girls. I think I'm in optimistic denial at the moment.
              Thanks for letting me join the club - not something I'd have chosen, but good to find a place with fellow folk in the same boat.

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              • #22
                Running Dad, how have you been? Was browsing this thread and realized no one replied to you! I was recently diagnosed with Stage 1B once the pathology of my orchiectomy came back. I have opted for adjuvant chemotherapy with Carboplatin (currently debating 1 or 2 cycles) as a preventative measure. Positivity will take you the farthest in this journey - testicular cancer will be cured 99-100% in early stages, so it is only a matter of time!

                On a side note - hello UK friends! I will be relocating from USA to London in March, and wanted to ask how easy it would be for me to find a urologist to see during my follow-up schedule of CT Scans and tumor marker blood-work. I have a Swiss Passport, so to my understanding the NHS will cover me some time after I receive my residency permit. Any help, or overall pointers about the NHS healthcare system, would be greatly appreciated.

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                • #23
                  Hi everyone,

                  I'm interested in knowing if anyone who's had 1 cycle of Carboplatin has noticed an adverse effects on their cardiovascular/endurance performance in sport?

                  Any adverse side effects in the short-medium term?

                  I've recently been diagnosed with Classic Seminoma Stage 1. I came back from a fell run and noticed swelling in my left testicle on boxing day. So went to see my GP the day after who referred me to see a Urologist. The feeling of heaviness and swelling remained present and 7 days later I woke up about 5AM with severe pain in the left testicle so went to A&E. I had an ultrasound and bloods taken for tumour markers. I was given antibiotics and analgesic pain relief and sent home.

                  The pain did subside, but the swelling and feeling of heaviness in the left testicle did not.

                  Blood tumour markers showed raised HCG and LDH.

                  Had a 2nd Ultrasound and the results were the same - significantly swollen and abnormal area of echogenicity.

                  I've had surgery - left Radical Inguinal Orchiectomy - chest XRay CLEAR

                  Post surgery blood markers HCG 1.14 and AFP 1.7 (now within normal ranges)

                  Post surgery CT scans - CLEAR

                  Histology report stated I had Classic Seminoma Primary Tumour Stage 1 (PT1) with no RTI or VI

                  I've opted for 1 cycle of Adjuvant Chemotherapy using the anti-cancer drug called Carboplatin starting 20/02/17.

                  Glad I found these forums very good source of information.
                  Last edited by Lune; 02-16-17, 09:56 AM.
                  Swelling Left testicle 27/12/16
                  Visited GP who referred to Urology at Royal Lancaster Infirmary (RLI)
                  Previous risk factors: Left Inguinal Hernia between 7-11 years of age
                  03/01/17 - pain became unbearable went to A&E RLI
                  Had Ultrasound 1 given antibiotics incase of infection/abscess - bloods markers test
                  Repeat U/S 19/01/17 -same findings
                  Pre op markers LDH 1116 (normal 240-525) HCG 31.36 (normal <2), AFP 2.2 (normal 0-7.4)
                  Left Radical I/O 1 22/01/17, Chest XRay clear
                  CT Thorax abdo pelvis with contrast 02/02/17 - scans appear normal
                  Histology: Classic Seminoma Stage 1 Tumor 3.8 cm, no RTI or LVI.
                  1st post op blood tumour markers HCG 1.14, AFP 1.7 (within normal ranges).

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