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  • UK People: Welcome

    A special welcome to members from the UK, especially if you're visiting this site for the first time.

    It always feels strange to "welcome" people. After all, we'd all rather not have a need to be here, but you have found a great place for information and support during your journey (or that of a loved one) through testicular cancer. TC-cancer.com is a great community full of great people.

    In recent months there has been a marked growth in traffic to this site - hopefully this reflects more people finding us, not an increase in incidence of TC. We've also seen more and more people from the UK joining, so we felt it would be a good idea to have a thread to help explain some UK specific issues, and to explain some of the differences between the way things work in the UK and and how they work in North America.

    One common cause of confusion is terminology. The word "teratoma", for instance is used to describe a certain cell type in the UK, and a different type in the US. For handy reference, here is a list of comparative terminology:


    UK/US Terminology


    British __________________________US

    Seminoma________________________Seminoma

    Teratoma_________________________Non-seminoma

    Teratoma differentiated______________Mature teratoma

    Malignant teratoma intermediate______Embryonal carcinoma with teratoma

    Malignant teratoma undifferentiated____Embryonal carcinoma

    Yolk sac tumour___________________Yolk sac tumor

    Malignant teratoma trophoblastic______Choriocarcinoma


    In addition to this, there are also differences between the way various treatments are administered in the UK. The most striking example is that BEP chemotherapy is usually given over three days here in the UK, whilst in the USA it is the norm to give the treatment over five days. Full details of the BEP regimen used in the UK are listed on the TCT website.



    UK Literature and Information

    General

    An introduction to testicular cancer from The Guardian's website


    TC statistics from the BBC


    Testicular Cancer Guidelines

    NICE guidelines about urological cancers (current, but not very detailed)

    NHS guidelines is great detail - What to expect when and how long it should take

    The Royal Marsden's guidelines about follow-up schedules

    Welsh guidelines for urological cancers

    EU Guidelines - Probably all the info you'll need, in 18 pages...

    ...or read the full 50 page version here

    Testosterone

    UK Guidelines Thanks to Nick O'Hara Smith for this

    Financial

    The Dept of Health website confirms that from 1 April 2009, cancer patients will not have to pay fro prescriptions which relate to their cancer

    (Thanks to Chris [ukboyuk] and Jon [jonwil] for many of these links)

    Financial note: If you have a life insurance policy with critical illness cover (possibly as part of your mortgage), claim! I did, and it paid off my mortgage.



    Please feel free to use this thread to discuss any UK related issues. Equally, please do not feel that you should avoid talking about UK stuff elsewhere on the forum - the entire forum exists for all members, so we should all feel free to continue posting wherever we feel is most appropriate.

    I hope this thread will prove to be useful to our growing UK community.

    I continue to add extra info to this thread as time goes on, so any suggestions as to what we should include would be most welcome.
    Last edited by Smartie; 08-24-11, 10:43 AM.
    Nick

    Embryonal Carcinoma; Seminoma. Marker negative.
    August 2001: Right I/O .
    August - December 2001: Surveillance .
    December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
    December 2001 - March 2002: 3xBEP .
    Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

    March 2012 - Ten years since finishing chemo.

    Survivorship Blog is here

  • #2
    Thanks for that post Nick.
    What I would have done without this site I really dont know. It is all a bit different over here in the UK.
    We are lucky to have you.Im sure many members will agree and new members will find this extremely useful and supportive.
    Best wishes.
    Karen.
    Dx 5/9/08
    Right I/O 15/9/08
    Pre op markers HCG 525 AFP normal.
    Classic Seminoma stage 1b.
    Tumor 7cm, RTI but no LVI. Chest XRay clear.
    Post op bloods normal.
    CT Oct 08 clear.
    Nov 08-bloods/CXR clear.
    On surveillence but followed up as a Non seminoma due to raised HCG.
    All clear New year.
    CT All clear Jan 09.
    Feb March CXR/bloods clear.
    Next check up April
    Doing the UKs Race for Life in June 2009.
    http://www.raceforlifesponsorme.org/karencollins6

    Comment


    • #3
      I've added some links to the latest EU guidelines for the identification, monitoring and treatment of TC in the EU (including the UK). Look in the first post of this thread, under the heading UK Literature and Information.
      Nick

      Embryonal Carcinoma; Seminoma. Marker negative.
      August 2001: Right I/O .
      August - December 2001: Surveillance .
      December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
      December 2001 - March 2002: 3xBEP .
      Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

      March 2012 - Ten years since finishing chemo.

      Survivorship Blog is here

      Comment


      • #4
        Thanks

        I find the most interesting difference is they don't seem to recommend adjuvant chemo for stage 1 seminoma in the US. My doc (seems to be a respected expert in the UK) says he thinks the US will soon adopt our approach as it has a much lower relapse rate.

        Comment


        • #5
          Yes, this treatment does seem to be offered more routinely in the UK than elsewhere.Having said that, there are a few guys from the States who have posted onthe forum about their carboplatin experiences.
          Nick

          Embryonal Carcinoma; Seminoma. Marker negative.
          August 2001: Right I/O .
          August - December 2001: Surveillance .
          December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
          December 2001 - March 2002: 3xBEP .
          Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

          March 2012 - Ten years since finishing chemo.

          Survivorship Blog is here

          Comment


          • #6
            Seems true and alot of the posts on here from people in the US seems to go down the line of if you dont need chemo then go on surveillance, whereas alot of people in the UK seem to want the 2xBEP as a precaution
            Noticed swelling left testicle 19 Nov 07
            USS confirmed tumour 5 Dec 07
            IO - 17 Dec 07
            Pathology - Embryonal Carcinoma (95%), Syncytiotrophoblast (3%), Teretoma (1%), Yolk Sac (1%).
            BEP x2 - 25 Jan 08
            Surveillance

            Comment


            • #7
              John Hartson, who used to play for Celtic has been diagnosed with TC which has metastasised to the brain. Apparently they are doing further tests. The report says he will have many months of chemo, so I'm guessing they're considering doing HDC after regular chemo.

              Report
              Nick

              Embryonal Carcinoma; Seminoma. Marker negative.
              August 2001: Right I/O .
              August - December 2001: Surveillance .
              December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
              December 2001 - March 2002: 3xBEP .
              Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

              March 2012 - Ten years since finishing chemo.

              Survivorship Blog is here

              Comment


              • #8
                glad to have the checkemlads logo on the welsh football shirts smartie. took some blagging that. we are setting up the hartson foundation .
                remission from july 2003
                BEPx2
                artrail fibulation x2
                stage2 teratoma mixed seminona
                HRT testogel ongoing
                www.checkemlads.com uk testicular cancer

                Comment


                • #9
                  I saw the logo on the shirts during the Wales match last month. Excellent work! Good luck with the foundation. As always, if there's anything I can do...
                  Nick

                  Embryonal Carcinoma; Seminoma. Marker negative.
                  August 2001: Right I/O .
                  August - December 2001: Surveillance .
                  December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
                  December 2001 - March 2002: 3xBEP .
                  Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

                  March 2012 - Ten years since finishing chemo.

                  Survivorship Blog is here

                  Comment


                  • #10
                    Newbie from UK

                    Hey guys,
                    am a newbie from Manchester UK undergoing chemotherapy at the moment for TC, feeling bit yukky so will update this more later on, an profile shortly,
                    just thought would say hi

                    mark
                    Scans and tests 05/01/2011
                    Diagnosed TC seminoma stage 1:- 15/04/2011
                    Orchidectomy (L) removed 1978
                    Orchidectomy (R) 18/04/2011 -MRI
                    Christies referal 30/04/2011
                    Carboplatin single dose chemotherapy 15/06/2011

                    Testosterone Undecanoate injection every 12 weeks
                    duration-Life-submucosally

                    Comment


                    • #11
                      Hi Mark.

                      Thanks for saying hi. I hope the chemo is going ok and you are not feeling too bad.
                      Nick

                      Embryonal Carcinoma; Seminoma. Marker negative.
                      August 2001: Right I/O .
                      August - December 2001: Surveillance .
                      December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
                      December 2001 - March 2002: 3xBEP .
                      Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

                      March 2012 - Ten years since finishing chemo.

                      Survivorship Blog is here

                      Comment


                      • #12
                        Hello

                        I recently discovered I have TC and had my left bollock removed last wednesday. Recovering from the op OK and will be heading for my CT scan on the 10th Nov.
                        I am kind of in limbo at the moment but keeping it positive.
                        I have been reading some of your postings on here and it all seems fairly upbeat if a bit scarey. I am 47 years old and have been married for 25 years with 3 kid (2 boys and a girl) the oldest is 31 the youngest is 20. I live in the wet and windy West coast of Scotland. The view makes up for the terrible diet (working class west of Scotland man has the lowest life expectancy rates in the EU) and weather.

                        I started writing a diary on my lap top and decided to post it on a blog, god knows why, I am not really sure, but what the hell!!
                        I have since discovered writing a blog seems to be a cancer patient right of passage. Or am I not reading the situation right.

                        Any info on this cancer stuff would be good. Ta!

                        Comment


                        • #13
                          Hi Jaffa. Welcome to the forum.

                          I think you're right about the blog thing. Indeed, I started a log of them on the forum. If you feel like sharing yours I'll add it to the list.

                          So the next steps for you will depend on the path lab's report on the make-up of the tumour, and whether the T shows anything. Have you had your blood checked for tumour markers?

                          Any info on this cancer stuff would be good.
                          The most important thing at this point, I guess, is the 98% cure rate.

                          Feel free to start your own thread on the forum - you'll probably get more responses that way.
                          Nick

                          Embryonal Carcinoma; Seminoma. Marker negative.
                          August 2001: Right I/O .
                          August - December 2001: Surveillance .
                          December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
                          December 2001 - March 2002: 3xBEP .
                          Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

                          March 2012 - Ten years since finishing chemo.

                          Survivorship Blog is here

                          Comment


                          • #14
                            Smartie

                            Thanks for that!
                            There were no T marker indicators in my blood tests, the Doc (My GP) seemed to think this was a really good sign, but I have seen a few posts on here in which people had the same info but had to get the whole shooting match of treatments.

                            The blog thing is interesting, I think writing down things like :- routine, feelings and relationship stuff helps you sort things out in your mind and the fact that friends and family can access it from a blog means they have a record of this stuff if anything untowards should happen.
                            I don't know about you but once I was told I had TC I was horny as a horny thing, which may be to do with that human urge to procreate even though I have 3 kids (all grown) and that male worry of possible impending impotency. Too much info there maybe!!!!

                            Comment


                            • #15
                              I forgot to attach my blog address if anyone wants to waste a wee bit of time:-



                              http://halfjaffa.blogspot.com/


                              Leave any feed back and the puctuation, grammar and spelling is a bit ropey. I am Scottish after all and English is my second language.

                              Comment

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