Testicular cancer

Affected by testicular cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

Stage 3c with lung and brain mets

Worried32
Posted by

Has anyone been on here with TC spread to the brain that has survived to tell the tale? I've read about the famous cases of Lance Armstrong and John Hartson but I imagine there will be less high profile success? 


gregm
Posted by

Hi Worried32,

You do seem to be getting a little ahead of yourself, you don't have any results back yet that show TC? You had your ultrasound a few days ago now, and bad news tends to travel fast when its cancer. Your bloods are clear, and whilst that is not definitive it is better than the tumour markers being raised, Get beyond Stage 2 to stage 3 or 4 without something showing up in bloods would I think be extremely unlikely.

To answer your question, yes I have friends for the pats 6 years who were Stage 4 (Metastasis to the brain). The statistics show that 81%+ of men diagnosed at Stage 4 survive.

I think perhaps the thing to concentrate on now is to get your ultrasound results? Polite persistent phones calls, or my favourite is to turn up in person at the GP surgery and ask for them :-) There's a difference between telling someone to wait on the phone, and having to do it to someone standing in front of you. They should be able to ask a Dr to step out and explain them to you, or get a doctor to phone the hospital on your behalf.

When I wanted my results from my urologist I was told she was in theatre (surgery, not Starlight Epxress), I said I'd wait. They said she won't be out until 8pm. Okay, I'll still wait. And, to her immense credit she came and saw me after 8pm, still in her theatre scrubs.

Greg

gregm
Posted by

Apologies - I got confused, your ultrasound is next Monday?

Greg

Worried32
Posted by

Hi Greg,

Thanks for the response. My ultrasound is on monday and they told me I would find out then the results. 


I know it sounds stupid but I have had pretty bad pains in my abdomen and chest the last few nights keeping me up. I had to get up and walk around to stop them. And had a few times over the last few weeks where I've been short of breath for no apparent reason. Add this to my balance issues and headaches it all makes sense to me that it's worst case scenario. I know that you will be reading this thinking this guy has classic health anxiety but to me it really isnt! 


If it is the case I am fully ready to fight it I just feel like I'm wasting time, and even if the doctors find something in the ultrasound they wont believe me that I think it has spread. 


I have read a few cases where people survive, and that is good that you also know people with brain mets that survived. Can I ask where you were treated? I'm in Edinburgh and not sure they will have seen any cases like that before


Thanks for your time again

gregm
Posted by

Hi,

It's alright I get it - I think all of us have had these sort of worries at times during our diagnosis. I've convinced myself I've relapsed 4 times - and it never was.

I don't doubt you have these symptoms, and they can be a combination of physical sensations, heightened by the anxiety.

If the ultrasound shows anything - and they gernerally check your abdomen as well (no harm mentioning to the ultrasound technician about the abdominal pains to remind them to look there) - then you will also get a CT scan which will definitely show anything sinister elsewhere.

It's not just a 'few' people who survive stage 4 - it's 83%! There are other cancer types on this forum where you don't get rates that good for Stage 1.

You're doing all the right things, taking the right steps,  the US is the first good test (bloods are iffy). I know its going to be a long weekend for you, do try and distract yourself with something nice if you can.

Greg

Worried32
Posted by

Yeah I know, and believe me I will be delighted if I come on here monday with either no TC or that it hasn't spread because at the moment I think it has. I need to get a more positive attitude especially if I have something to fight here. My gran had breast cancer 25 years ago and told the doctors she wasn't going to let a silly little thing like that finish her, it didn't and she passed away just last year aged 99. 

They are doing the ultrasound on my abdomen and pelvis too anyway as I had pains there, so hopefully catch anything in there. 


I dont think the bloods my gp did were looking for any markers, she just told me she did 3 sets of tests but I think it would have been all the normal function tests and looking for signs of an infection? She just told me they were all fine anyway. 


It sure is going to be a long weekend. The other day I nearly went to a&e to ask for scans or x rays but I was talked out of it by my better half. My partner is amazing with all of this and keeps me busy to keep my mind off it. I honestly don't know what I would do without her now or if there is any bad news on Monday.  


I like the look of those odds, I stupidly found some much lower odds online somewhere for brain mets being 25% but it wasnt an official document, which I know I shouldn't be looking at!


gregm
Posted by

HI,

Cancer statistics can be a challenge to decode, hence the reason not to google too far ahead of the facts you have. Testicular cancer, wherever it spreads, is still testicular cancer, the cells are the same. That means it responds to the treatment the same way wherever it is in the body. The slight drop in survival rates for brain mets may be due to brain/blood membrane(boundary) - its notoriously difficult to get drugs to cross that boundary.

Best of luck for the scan, everything crossed for you,

Greg

Worried32
Posted by

Thanks again Greg - you really are an amazing help on here. I'll update on Monday how I get on 

Sibbald
Posted by

Hi Greg ,

Greg I had my ultrasound last Tuesday would I have heard by now if it was suspected tc or did u get the results straight away just curious as my gp said uetsyersay it can take 10 days for the results to get to him as my catchment area is very busy ATM ?

gregm
Posted by

Hi,

In general, if it looks bad, you get to the front of the queue and your GP gets the results in 24hrs. I got mine in 12hrs as I was pretty far gone :-(

Its worth being politely persistent just to make sure there's no adminstrative cock-up, but I'd take the lack of urgency as a good sign.

Greg