Announcement

Collapse
No announcement yet.

UK People: Welcome

Collapse
This is a sticky topic.
X
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    UK People: Welcome

    A special welcome to members in or from the UK, especially if you're visiting the forum 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. Thankfully the UK is now beginning to use the US terms more and more, but there is still the potential for confusion, so 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 Choices - TC information

    NHS treatment guidelines to doctors

    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 an endowment 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 info to this thread as relevant literature is brought to my attention, so any suggestions as to what we should include would be most welcome.
    Last edited by Smartie; 08-24-11, 09:42 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
    Tags: None
    • Stuck
  • #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
                Nick

                DWP (Dept of Works and Pensions) have updated their site containing specialist guides:

                Medical guidance for DLA and AA decision makers (adult cases): staff guide
                http://www.dwp.gov.uk/publications/specialist-guides/medical-conditions/a-z-of-medical-conditions/testicular-cancer/
                Medical guidance for DWP staff who make decisions on adult cases for Disability Living Allowance (DLA) and for Attendance Allowance (AA).


                Gives an idea as to what the DWP consider recovery times for the various treatments.

                Paul: Given this comment "Testicular cancer is a disease of young men; it is very rare in men over 50." we are obviously young

                Jon
                Jon
                Left orchiectomy May 2008, AFP 1600, βHCG 200and normal after 5 months (AFP4, βHCG<1)
                Non-Seminoma stage 1 - Under surveillance
                3 years on and still all clear

                Comment

                • #9
                  I may have seen this somewhere but can't find it now. But is there a list of what are considered to be the best hospitals for treating TC in the UK? Seeing as we can now choose where to be treated on the NHS.

                  Alex

                  Comment

                  • #10
                    This link has a list of TC experts in the UK, although it may be a little out of date by now.

                    The Royal Marsden is the top cancer in the UK. As you know, any patient who needs a referral to a specialist can choose to be referred there (or anywhere else).

                    The Royal Marsden's patient referral page is here.
                    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

                    • #11
                      hi ...I am unlucky enough to be new here. but I would just like to to say...this looks like a very informative and nice place to meet people and chat.
                      I had(l) orchiectomy in December 2009.... 3 doses carboplatin and 4 weeks radiotherapy on para-aortic nodes....
                      recently found lump in right groin..ct scan 2cm inguinal node....biopsy taken ...seminoma... ultrasound on right testacle...waiting for results but was told by man who done scan..."don't look good .need to get this sorted".....having pet scan Wednesday 5th feb....
                      feeling a bit fed up ...thought I would chat to people to stop me thinking too much.

                      Comment

                      Previous template Next
                      Working...
                      X