No announcement yet.

Update from London

  • Filter
  • Time
  • Show
Clear All
new posts

  • Update from London

    Hi everyone

    Today I met with my assigned oncologist Dr Sharon Beesley at Maidstone General Hospital in Kent. Dr Beesley assessed my blood test results, and all the information supplied from my visit to GWU in DC. Based on these, and in particular the evidence of angiolymphatic invasion in my pathology, she has suggested the following:

    - Further blood tests to check that the AFP comes down a couple of points more - it is now 9.9. (I had the blood tests done today)
    - A further CT scan of the pelvis and abdomen and also the chest. She suggested there might be a chance of secondary tumours in the chest and that a CT scan would clear this up. In DC I only had abdomen and pelvis scans (CT scan to take place in next 14 days - hopefully)
    - Based on the results of the above, and because RPLND is not an option in the UK at this point, I will be offered a choice between surveillance, and two courses of BEP. Dr Beesley is of the opinion that this will bring the chances of recurrence down from 30-40% to less than 5%

    I am in a quandry. Dr Beesley's opinion regarding the usefulness of chemotherapy in my case seems at odds with what I had discussed with Dr Bianco at GWU and Dr Sheinfeld at Sloan Kettering. It is also at odds with the general feeling I have been getting on this forum and on the TC-NET list. Most of the people I have spoken to feel that preventative chemotherapy would not be a good idea/very useful with such a large component of immature teratoma in my primary tumor.

    What do you guys think of Doctor Beesley's suggestion?


    S/P: Right Radical Orchiectomy Nov 22, 2006
    Assessment: Non-Seminoma germ cell tumour Clinical stage 1b
    Histologic Type: Mixed germ cell tumour - Immature teratoma 95%/Yolk sac
    tumour 5%
    Primary tumour pT2, tumour limited to the testis and epididymis with
    vascular/lymphatic invasion
    Tumour size: 6cm in greatest dimension, Additional dimensions 4.5X4.0

  • #2
    I'm in full agreement on having a chest x-ray or CT scan if you haven't already, as well as continuing to monitor your AFP level. In your situation, I'd continue with surveillance and avoid adjuvant chemotherapy. Note that we do have members from the UK who have had RPLND.
    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

    Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!


    • #3

      Hi there hope you are doing well. I've been recently treated in the UK, so can given you the benefit of my experience, although obviously I'm just a guy on the street who's built up his knowledge of this disease from many, many hours of research.

      In my experience you are not offered a primary RPLND in lieu of chemotherapy in the UK, but I don't know what the response would be if you specifically asked for a RPLND (as I never tried it). In my case chemotherapy was the obvious option, as I had metastic disease. I did eventually have a RPLND, but it was a postchemotherapy type, for resection of a residual mass. Mr. Christmas (I kid you not) is the UK's expert, having done 400 RPLNDs, including mine. (He's based at the Royal Marsden).

      Immature teratoma I believe like the others (embryonal, yolk sac etc.) in being an aggressive malignant neoplasm. I think you have make a decision based on the risk or percentage that it may/may not have gone mets. Your doctor can advise you on this based on the results from many previous patients.

      There appears to be two scenarios in your case. The first that the disease is contained in the testes, and the second that it is not contained in the testes and has already spread. Obviously a positive CT scan or blood test will indicate spread, but a negative test does not mean you have no spread, because the disease could be microscopic level in the metastic area.

      Unfortunately having lymphatic/vascular invasion (I also had this) has increased the chance in your case that it has spread. The doctors can offer you the odds of a recurrence based on all this information, an then offer their treatment advice, but I guess at the end of the day the decision is made by you.

      I personally would make sure that you have all the up to date facts available from the world's leading oncologists. In that respect I recommend you visit the Royal Marsden in Sutton (South London). Professor Horwich, Professor Dearnaley and Dr. Huddart, have about 70 years TC experiece between them, and they do nothing else but TC day in, day out. It is the centre of excellence for TC in the UK.

      I was there today, and there's always 5-10 TC patients every Friday waiting around to be seen, whether it's for a routine appointment or a follow up. You can always tell the TC patients as they're the only people in the room in their 20s and 30s!!

      I know 2xBEP is used in the UK, but I believe there is some controversy over this. Some feel that 2xBEP is not enough, and could leave a patient refractory to further chemotherapy. Since 2xBEP was, I think, pioneered at the Royal Marsden, it's only another reason to go there for advice or second opionion. They'll have all the statistics up to date.

      Whatever you chose, I wish you the best of luck. If you need any further information, you can send me a PM.

      Diagnosed March 2006, Stage IIB, 3cm RP mass
      10% Seminoma, 90% Non-Seminoma (Embryonal, and a tiny amount of choriocarcinoma and teratoma)
      Prechemo bHCG-2648, AFP-582
      3xBEP March-June, markers normalised
      3 months postchemo - 1.2cm residual RP mass
      RPLND September 2006 - mostly necrotic tissue plus tiny amount of well differentiated teratoma
      June 2009 - TRT commenced to help out my lefty
      May 2011 - check-up, all clear