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Taking surveillance on the road...

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  • Taking surveillance on the road...

    Dear all

    Hello from the UK. I posted on this forum a few months back after being diagnosed with TC (Stage 1b Non-Seminoma). Since then I have seen my markers return to normal and I am now on a surveillance schedule and feeling fine - so far my monthly blood markers, CT scan and chest x-ray are all normal/clear. I am writing to you all for advice once more, and I hope the request is not too strange.

    I'm the guy who is walking across the US with a mate ( I was diagnosed with TC when I returned to Washington DC at the end of November 2006 after walking from Delaware to Kansas City. Amongst other things I'm undertaking the walk to write a book about America post 9-11, but I'm also doing it out of a love of the country and a desire to get to know the people better. The walk has been a success so far - our website has had over a million hits and there is a tremendous amount of support out there.

    It may sound strange, but I am hoping, all things remaining equal, to resume my cross-US walk in May. I want to take my surveillance protocol on the road. I am not stupid, and know that if anything happens at any point I will need to return to the UK as soon as possible for treatment (therefore I have some money set aside for a quick getaway). However, I am not the sort of person to sit around waiting for a recurrence and this walk has been the focus of my life for over a year.

    I know going on the road with a surveillance protocol is a gamble. But I also believe I can find ways to make it happen. I am hoping to work with the Livestrong Foundation for support with my medical expenses and in exchange I am hoping to raise money for the organisation. I've sent the good people at Livestrong a package suggesting how I can help them (and how they can help me!) and I'm hoping to hear back soon.

    My question here concerns expenses. As someone from good old Blighty where our creaking NHS does its best to take care of us, I am not used to paying for medical care, especially not serious medical care. My surveillance protocol calls for monthly blood work, bi-monthly chest x-rays, and a CT scan in another nine months. Yes, this is the UK, and it's not quite the same surveillance schedule my doctor in Washington recommended (he wanted monthly bloods, monthly x-rays and CT scans every four months). For the record, I'm hoping the walk will be finished by the end of November.

    Therefore, to the point. Can anyone give me ballpark figures for the following in the Mid-west - California area (FYI, we go from Kansas City to Denver, across the Rockies, through Utah and Nevada and across to San Fran):

    1. Blood tests
    2. Chest x-rays
    3. CT scans

    I am uninsured (obviously) and terrified of the costs (obviously). But, if I don't ask these frightening questions, I won't know what I'm dealing with if I need to go to another organisation outside of Livestrong for help. Can anyone give me any info on these things, or, more generally, any advice about taking surveillance on the road?

    Cheers from a cold evening in England,


    Welcome to the Walking the States website! STOP PRESS!! The States have been walked. It’s over. No more walking obscene distances, blisters, sleeping in tents, stinking feet, loud snoring, packet pastas, ramen noodles, Clif bars and dodgy trail food, identical diner menus and giant breakfasts. No more early mornings and early nights, but plenty more […]

    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
    Hey, Stuart, I saw you had several replies on the TC-NET mailing list, which I hope have helped. Have you heard from anyone at the Lance Armstrong Foundation about your endeavor?
    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
      Hey Scott

      Actually, as yet I have not heard from anyone at the Foundation about my proposal. I have had very quick responses from their Cancercare people (and I'm very happy about this) but nothing specific about what I want to do. I understand that the proposal has been passed to a grassroots fundraiser named Chris Brewer - I followed this up with an email to him on Monday but I haven't heard anything from him yet. I'm hoping he might get in touch by the end of the week...time is passing and I need to explore other options if this one falls through. I hope I might do something with Livestrong however - it seems like a perfect fit and a good opportunity to take the Livestrong message on the road!