UK People: Welcome

[Smartie]

A special welcome to members from the UK, especially if you're visiting 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


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. There is plenty of activity going on this side of the pond, including a 5K run (or walk!) for cancer research in the summer.

I will be adding extra info to this thread as time goes on, so any suggestions as to what we should include would be most welcome.

[LBu]

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.

[Smartie]

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.

[Englishbloke]

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.

[Smartie]

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.

[Mat]

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

[Smartie]

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

[skiwiman]

cancer, priorities and chemo

Hi Nick
Hello everyone else

I was diagnosed on March 12 with Stage 1 classical seminoma tc. That was after the orchidectomy - right. Go to see oncologist next Wednesday. Surgeon recommended single dose of chemo (not sure what drug or what cocktail of drugs).

I am impressed with your reassessment of your life and the change you made. Like you I had been talked into taking out Critical Illness Cover five years ago by my financial advisor friend - can't thank him enough now. He really had to work on me to take it.

Cancer Research UK is a great website for information.

There's no way I'd opt for the surveillance (wait and see) approach. Cancer is not to be toyed with.

To finish I'd like to recommend "Chemotheraphy and radiation for dummies" - a great read, reassuring and informative and at a level that is conversational yet never minimises the issue at hand.

Thanks again guys

[AKW London]

Hi Smartie,

Thank you for opening this post! I am based in the UK, and was diagnosed with stage IB non-seminoma (100% yolk sac tumor) about three weeks ago. Unfortunately, the vascular invasion was present in my case.

The information you have provided is great, I will try to post a few links to more literature including recent studies on adjuvant chemotherapy as this is what's currently on my mind. I think the main difference between the US and the UK/Europe is the fact that RPLND seems to be much more popular in the US - maybe it is extremely expensive and thus lucrative to do... However, I am still thinking about it for myself as an option. Not sure though if there are any goof specialists in the UK for this demanding operation, Tim Christmas used to do it, but I believe he passed away recently... I am currently waiting to see my oncologist, Prof Harland in London, who seems to be an expert for testicular cancer.

Once again, thank you for welcoming UK members. Of course, I fully agree it would have been much nicer to meet under different circumstances, maybe in the local pub...

Best for now,
Cheers,
Alex

[AKW London]

Has anyone of the UK members here an idea of who is the best specialist to perform RPLND in the UK...?

I know this used to be Timothy Christmas, but I believe he sadly passed away some time ago. Is there another specialist who could be recommended?

Thank you!

[Smartie]

Hi Alex.

Sorry to hear that you have a need to be here, but welcome anyway.

It is very true to say that RPLND is far more popular in the States. Perhaps it is indeed a cost thing. I tend to feel that in the USA, patients are an opportunity to make money, whereas here we are a drain on resources.

I didn't know about the death of Mr Christmas. Sad to hear. A friend of mine from this forum had his RPLND done by him.

I'm wondering why you are thinking about having an RPLND. With your markers returning to normal, you'd be a good candidate for surveillance, even with the vascular invasion. I know some people like take a more active approach, though.

Best of luck with your decision. I'm sure your oncologist will be able to recommend a surgeon.

Nick

[AKW London]

Hi Nick!

Thank you for your reply.

I have given up on the idea of RPLND, it is a serious operation with risks, and as you said not really necessary since all my CTs were normal. I will now do the adjuvant chemo instead. My oncologist suggested 1xBEP given recent large studies confirm it is equivalent to 2xBEP. I told him let's see how the first cycle is going, and then decide whether to do round 2 or not. I am driving myself crazy about lung toxicity of Bleomycin, but even with 2 cycles this risk should be negligible. The treatment starts on Monday, and I am nervous, but also very determined and keep a very positive attitude. I cannot wait until it is over, and then have the feeling that I have done everything to kill cancer for good!

I might post an update once the side effects kick in next week, hopefully it won't be too bad. Do you know why the 3-day BEP schedule is so popular here in the UK? I was told that will be applied, but I thought 5-day was standard (at least in the US, and Germany as well).

Cheers,

Alex

[Lune]

Hi,

thank you for the informative post.

I have opted for adjuvant chemotherapy which is 1 cycle of Carboplatin starting on Monday.

Regards,
Rob