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Original poster

DH has a 5cm tumour on his epididymis, PLEASE if you have experience come and tell me about it

59 replies

petrifiedperson · 18/09/2012 13:29

Ultrasound today - it's a total shock as his gp said it was definitely a hydrocele and nothing to worry about

we are terrified and of course I have been googling and found out all about metastasis etc

please, if you have any experience of this come and talk to me

I am an oldie but have namechanged for dh's privacy

OP posts:
throckenholt · 18/09/2012 19:13

I would try and hold on to the fact he has had it a long time - it must be very slow growing and malignant things tend not to be slow growing. And it sounds like it is in a place where it could be removed quite simply.

If you have to google then try the Macmillan site - there are discussion boards on there and maybe someone with relevant experience can talk to you.

Don't google the medical things until you have something definite to look up (not a very vague diagnosis). And then only if you are the type of people who can be objective about what you find and sift out the bits relevant to you.

Original poster
petrifiedperson · 18/09/2012 21:47

dh can't stop googling, he has spent the entire evening reading clinical papers online and I am doing the same next to him on the laptop Blush it seems to be how he wants to handle his f

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Original poster
petrifiedperson · 18/09/2012 21:49

dh can't stop googling, he has spent the entire evening reading clinical papers online and I am doing the same next to him on the laptop Blush it seems to be how he wants to handle his fear and I want to support him however he wants me to iyswim

I have anxiety and depression which I am on high-doses of drugs for, I am feeling the familiar waves of panic tonight, somehow I have got to get it together as the kids need everything to be normal and dh doesn't need my problems as well as his own worries Sad

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cornzy · 18/09/2012 21:53

Sorry to hear about your dh and i really hope you get some good news soon. The waiting is very difficult, but once you know what You're dealing with you you can start to move forward. (( hugs))

Sparklingbrook · 18/09/2012 22:05

It's perfectly ok for him to do that petrified. Nothing he reads online will make a difference to his own personal experience , but if he feels he wants to know everything that is possible, that is his way of dealing with it.

Try and get some sleep tonight. I know it will be hard. x

Original poster
petrifiedperson · 18/09/2012 23:43

I can't sleep, my heart is thumping Sad

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Original poster
petrifiedperson · 19/09/2012 09:36

sorry bumping in case anyone else has experience or advice

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CMOTDibbler · 19/09/2012 09:52

Petrified, I think maybe you ought to get yourself a GP appointment so that you can get some help for you lined up, maybe some short term increase in meds etc to help you cope through this.

Sparklingbrook · 19/09/2012 10:01

Just wanted to say I was thinking of you petrified, I think a GP appointment for yourself is a good idea too. x

Original poster
petrifiedperson · 19/09/2012 14:19

it is a good idea, I will do it, thanks x

dh being really calm and handling it all magnificently. Doubt he is feeling good inside though.

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ggirl · 19/09/2012 14:25

the sonographer is describing it as a tumour ..it could very well be a benign tumour , they won't be able to tell until a biopsy is done surely??
tumour =swelling of abnormal growth...not necessarily cancerous

LadyInDisguise · 19/09/2012 14:41

Yes an urgent appointment with the GP is a good idea.
Both to have a chat about what they found, when you will know more etc... and to review your medication if it is necessary, at least until you have a better idea of what is going on.

Original poster
petrifiedperson · 19/09/2012 16:15

dh is seeing gp tomorrow morning to talk about what they found. He managed to get hold of the consultant at the hospital today, who told him that there is no way of diagnosing malignancy/not without the biopsy, but dh asked him a couple of questions. apparently it is 7cm, appears to be smooth rather than bumpy and has some vascular flow but quite low level. I don't know what that means but dh thinks it's good signs.

I will ring my gp tomorrow morning after dh has seen him and get an appointment for myself. I don't think he will put my meds up as they are already very high, but tbh it would be good to talk to someone IRL about how I am feeling, I can't burden dh with all my gun-jumping terror and he doesn't want any of our cfamily or friends to know yet.

so MN is my best friend right now, thanks so much for all your posts Flowers

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Original poster
petrifiedperson · 19/09/2012 16:16

I meant Thanks

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LadyInDisguise · 19/09/2012 16:28

Why is your dh going to see the GP? Does he have other things going on too?

throckenholt · 19/09/2012 16:48

I think cancerous tumours tend to be lumpy and irregular - so a smooth one might well be a positive sign.

I would try and work on the assumption that it is a benign slow growing tumour that will be removed (which is probably most likely given what you have said so far). If it is anything else - then face that when you know - worrying now is not going to help.

Tiago · 19/09/2012 16:54

Hopefully it is benign (which may be likely given how long it has been there without issues). The doctors will be able to tell you more, and I will add to the chorus of STEP AWAY FROM DR GOOGLE. That way lies madness.

Original poster
petrifiedperson · 20/09/2012 15:16

dh saw GP this morning who gave him a copy of the report from the ultrasound

it says the tumour is 7.5cm, heterogenous with mild vascularity, on the lower pole of the right epididymis, inferior to separate from the testicle, testes look normal

dh is googling like buggery when not at work, the GP said "you probably know as much as I do". He also said tumours on the epididymis are as rare as rocking horse shit

apparently the appointment with the urologist will be in two weeks, but they won't do anything then, just tell us everything we already know, and then we will have to wait for either a biopsy or just surgery to remove it

I kNOW I shouldn't be panicking, but I didn't sleep at all last night and couldn't stop crying. I think it has made me realise how emotionally dependent on my dh I am Blush

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Original poster
petrifiedperson · 21/09/2012 21:17

sorry for bumping again, just in case someone who is a cancer expert sees it

(and because dh is in NI now and the kids are asleep and I am fretting a bit because I am on my own )

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TessTosterone · 21/09/2012 21:24

I would say the fact that he has had it since 1998 is positive. If it was malignant it would have become obvious before now.

Original poster
petrifiedperson · 21/09/2012 21:26

I am really clinging to that Tess. It does sound good doesn't it? OTOH I can[t help thinking that it may have started as a cyst and later become cancerous or somehting

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procrastinor · 21/09/2012 21:36

Ok this isn't my specialty but breath. As others have said if its been there for that long it is either incredibly slow growing or benign. Nothing is going to happen to it just because you know about it now - its been there for years. Your urologist will be able to talk to you about the likely diagnoses and his general impression. Take a pad of paper and a few questions that you want answering. There will probably be a specialist nurse that you can contact to talk over things with. To be honest, they are normally exceedingly good at dealing with people's natural fears and anxieties.

I know it's incredibly difficult but google is not your friend. Not only are clinical trials / case studies read out of context but you have random quacks / oddballs on the Internet peddling their own beliefs or treatments. Trust the NHS - whatever it's fault it works quickly and effectively when it's cancer.

If it gives you some comfort, your dh's case will be discussed by a panel of doctors and other specialists (urology, oncology, radiology, pathology, nurses etc) who are all focused on getting the right diagnosis and treatment for your husband.

You guys will get through this. Both of you just need to remember to look after yourselves (call in favours, get some time to go for walks just the two of you - no computers!).

For the children, maybe just let the older one know the basics "dad has a lump which he has had for years and the doctors are just trying to find out what it is now". I personally would stress that he's had it for a long time if your dc worries - along the lines of "was dad ok last year? Yes. He had the lump last year too so it's okay - we just need to know what it is to make sure it doesn't need an operation or anything to make it go away". But that's me - be led by your dc.

Original poster
petrifiedperson · 22/09/2012 18:58

procrastinator thanks so much for your post, I have read it and read it again! Last night when I was trying to sleep I kept telling myself "nothing is going to happen to it just because you know about it now"

I know I am reacting with my anxiety disorder but in the night, when dh is away and the kids are in bed I find it impossible to calm myself down and my mind runs away with me thinking about the empty place at the table and the clothes in his wardrobe and the kids' faces Sad. I KNOW this is ridiculous and I need to get a grip, but I just can't

ds1 has aspergers and is already going through a nightmares and anxiety-about-death phase, so I can't tell him anything about this, it will destroy him. But I am keeping it together while they are awake anyway because it's easier - they have never eaten so well, I have been hopping about making jam turnovers and god knows what!

dh will be home tomorrow at least. The poor sod will be frazzled after spending the weekend celebrating his brother's wedding and NOT telling his mum or his brothers anything about this. But we can go to bed early and cuddle all night.

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Sparklingbrook · 24/09/2012 15:24

Hi petrified. How did your DH get on at the wedding-and how are you?

AmeliaEarhart · 24/09/2012 16:16

I'm so sorry you and your DH are going through this OP.

My DH had testicular cancer a few years ago and needed an orchidectomy and chemo. I know it's a different sort of cancer, but if it's any comfort at all the defining characteristics of his tumour were that it had a rough surface ("craggy", according to his GP) and that it appeared fairly suddenly - so the opposite to your DH.

Not much helpful to add, apart from saying that I know the horrible, gut-wrenching 'shit-your-pants' fear that overwhelms you when you know something is wrong but before you've seen a specialist who can tell you exactly what it is. We'd been tipped off by DH's GP that something was amiss from his blood test results, but had to wait a few days for an ultrasound and to see a urologist. I spent those days convinced I'd be a widow at 30. Once we'd got the diagnosis and we knew exactly what we dealing with it got much easier.

How are you doing today?