Urologist

Hi Consett, 

DONT PANIC

sorry you find yourself here, but its a good place for sensible information and rational answers

i know its hard to say don't panic, but it changes nothing, other than causing you additional stress at an already extremely stressful time.

its ok to be scared mate, if you weren't that would be unnatural.

ive gone through stages where im totally nonchalant and "cest la vie" and the next minute , hands clasped to face in blind panic that im f***ed.

im trying to avoid the thought processes that bring on the latter.

please dont self diagnose, until you know what the oncologist is going to say, its pointless, youll scare yourself shitless and be no better off mate.

my story is pretty similar to yours, except the running of course, im no masochist

i initially i went to the docs with "something not quite right", i wasn't even 100% sure it was anything at all , but i booked with doc , got checked and he thought it was epididymitis, same as you,

i  went away and over the next month it didnt get any better, now it had hardened and was slightly swollen

this time the doc immediately referred me for an ultrasound.

the next morning i went for ultrasound and within 2 mins of being in there i was told i had a testicular tumour and it would be removed as soon as possible, 

A week later on the Friday ( 10 days ago) i went in and had my RHS testicle removed, operation went well and so far im recovering pretty good, i went back to work the following Tuesday, luckily i have an office job, im getting stronger every day which is a good job because tomorrow im going camping for the TT races on the isle of man for 10 days, 

2 days after my return ive got a CT scan and straight into my oncology appointment and ill find out what further treatment i need

Urologist spoke to me after surgery and said my chest x ray was clear, and my blood markers were low, and in line with what turns out to be a seminioma tumour (germ cell) this is important because its a kind of cancer that responds well to chemo, 

im expecting chemo, a long way form looking forwards to it, but what till be will be.

if you've got to play cr4p bingo and pick a cancer, you can do a lot worse than this one, im not trying to be flippant, honestly, 

if you can run thouse distances your physical in great shape, you body will recover, youll recover, its a blip. live your life mate.

live your life

Captainnemo70 thanks for the response and the uplifting words,  it's a lonely place so good to read up on here about experiences. I too work in an office so I'm hoping to work from home week 2 and 3.

I hope all goes well for you and you make a speedy recover, just crossed my mind your not riding a motorbike to the TT are you? Wouldn't that be painful.

Hi consett,

sorry you find yourself here, but welcome.

im a numbers man too.  Let’s look at the main factors that influence survival rates.

Pure seminoma vs germ cell.  Pure seminoma much preferable.  Even upon relapse after initial chemo, pure seminoma is cured 90%+ of time with salvage TIP chemo.  Place that against mixed germ cell tumour, where salvage chemo TIP cures 40% to 76ish %, dependent on certain factors.

Age - if you are relatively young and relatively fit you can take the treatment, even last resort High dose chemo.  Older men would not be able to endure high dose.  Unlikely it will come to this!

staging caught at - stage 1, 95% alive 5 years later.

So if you are relatively young, and have a stage 1 seminoma its happy days.  Chances of survive 5 years is 101%.  That’s more chance of being alive in 5 years than the general population. And your critical illness will pay out.  More chance of being alive and more cash!!

If you are very old, and have a stage 3 mixed germ cell tumour, still decent survival  rates for cancer, but prognosis much much worse.

But let’s not jump the hin here.  You do not have a full diagnosis yet. And it’s worth baring in mind TC is relatively slow spreader, so every chance it’s confined to the testicle.

hope helps

take care

dan

Hi Odbball

Thanks for the response, I'm 44 not young but not ready for the knackers yard yet (no pun intended)

I am riding the bike mate, i never said i was bright :) don't get me wrong. i doubt ill be throwing it around like i normally do, luckily ive friends over there in cars so ill be able to get about if im uncomfortable.

UPDATE.

Last week, following my removal i had my oncology and CT scan appointments, 

the preliminary results from the orchidectomy were that i was probably going to need single shot chemo as the tumour was 40mm and was on the borderline between monitoring and single shot chemo , if there was nothing found anywhere else,

today ive been back to oncology for my full results and to discuss my treatment plan.

to be greeted with absolutely brilliant news.

My CT scans came back clear and my bloods were excellent.

They are proposing monitoring for 5 years and no further treatment required now unless something changes down the line.

i cant put into words how relieved i am, its been a tough 7 weeks since i was initially diagnosed and the removal, with a lot of time to wait around and think.

i didn't stress too much ( i thought) as there was nothing i could change by worrying and "it is , what it is", i was fully expecting to have to have at a minimum the single shot chemo, and due to the size of the tumour i was worried that it may have been there a long enough to spread.

when the oncologist told me the CT scans came back clear, i was pretty emotional,  wasnt expecting to be, i don't think i realised how worried i was, even typing this is getting me choked up.

i am so grateful to the combined teams at Pinderfields,  Wakefield, and the oncology team at St James, Leeds.

a massive weight of the shoulders of my Partner and family, they were all positive and strong, but im aware how stressful it is for everyone.

just wanted to share the good news

Keep fighting Guys

Mark 

X

Hi Mark great news, really pleased for you and your family. We seem to be sharing a parallel experience, diagnosed around the same time, pure seminoma and both with 40mm tumour. I have yet to have my Oncology appointment but hope for a similar outcome.

i think it’s important that good news is recorded on this forum as for me it helped reading the experiences of others and understanding the process.

Live and enjoy your life

Hi nemo,

Not everyone has had that moment of joy and relief in their life when you get told “no more treatment at this time, surveillance”.  

Great result.  Fantastic news. Another on their way to tbeing in the 95%.

take care 

dan