Testicular cancer

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Doctors unsure

Crazyenglishman
Posted by

OK so...

I'm a 29 year old married father of 1.

I found a lump 3 weeks ago and went to the doctors. He felt around wasn't sure and sent for the ultrasound.

Ultrasound last Saturday and they find multiple black spots on both testicles, they said they had the markers of being benign but he couldn't be sure as he has never seen them like this before, the doctors will call to discuss the next step.

So today rolls up still no clue whats happening then I get a phone call from gp. 

He sounds confused and says we need you to see a specialist. There are multiple solid lumps on both testicles and both himself and the ultrasound people have never seen it before. I'm now in for blood tests tomorrow morning and in rapid response for the specialist.

Has anyone else had this and maybe shed some light on what's going on?. I'm going out my mind but more due to the fact no one knows what it is. No one has said cancer but no one hasn't if you understand me.

I have no symptoms of cancer anywhere else and (due to a very hard to detect variant of lymes) have had bloods last year that proved negative for cancer markers. 

gregm
Posted by

Hi CrazyE,

That does sound like a mystery.

We tend to get 5 different kinds of results here, in order of most frequent posts:

  • false alarm, just sore nuts
  • cysts, (no vascularity)
  • microlithiasis (small calcium deposits)
  • testicular cancer
  • benign growths

I would expect an US technician to be familiar with the first 4, and the latter is often only known after surgery.

Blood tests - AFP, bHCG and LDH will answer the question if AFP or bHCG are positive - that will show the presence of TC. LDH is a more general marker of cellular trauma (bruising, over-exercise, hangover, infection and yes TC). A negative blood test is inconclusive as not all TC tumours raise the markers.

It's good to hear you are otherwise well. TC is pretty rare ~2000 cases/year out of 31 million males. When it is found it is highly treatable with a 98%+ success rate (going up to 101% if found and still contained inside the testicle). Treatment ranges from a simple day-patient operation all the way up to 12 days treatment spread over 9 weeks.

All the best for tomorrow

G.

Crazyenglishman
Posted by

Hi Gregm

Thanks for the info.

I was hoping the gp phone call may shed light either way... If anything it's made it more confusing. 

It's a strange feeling when no one knows. 

I did the classic error of reading through the dreaded Internet and havnt found anything that relates. Kinda hoping that's a good sign. Just want to know and deal with the outcome. 

gregm
Posted by

Hi,

I guess they have two options - close surveillance for a month or two, or surgery to remove it and take a look.

The waiting for the is it?/isn't it? answer is dreadful, I feel for you, and its something most here can appreciate it.

Do let us know what they find - then we can support anyone else who has the same diagnosis.

Greg

Crazyenglishman
Posted by
Hi
My only question with removal is would they be likely to do that with both?
Definitely will keep updated, especially if its rare and as confusing as it seems to be.
Nearly had a heart attack when the US technican said hes never seen it before. 
patso84
Posted by

Hi, Crazyenglishman! From what I am reading here I understand that you have had an Ultrasound and only GP has reviewed it and they are not sure waht this is? I would say you need to see the specialist- Urologist, as GP's have no clue about these things and this is not for them to deal with. GP's are good for flu, infections ect. When you see a specialist I am sure it will be different, as if the specialist is unsure, he will meet with special team in a meeting to discuss your case. I am sorry you are worrying...we all have started from there, but I wish you won't get this TC diagnosis! Even if you do (hopefully not), TC is very treatable as Greg has said. Good luck!

Plamen

gregm
Posted by

Hi CrazyE,

No, I don't think they would remove both, just the one with the ultrasound oddities to see what it is. That may not be needed at all for example if it is microlithiasis.

Greg

Crazyenglishman
Posted by

Hi 

Thanks for the replies.

Have an appointment with the specialist on Monday. 

So hopefully we'll know more then. 

Waiting is definitely the worst.

Its the terminology and the fact its areas I can't feel on examination (no lumps from touch but clear on ultrasound) that sets my mind racing.

Hopefully just over analysing everything which I'm sure is something everyone does. 

Crazyenglishman
Posted by

Spicialist meeting this morning was pretty poor if I'm honest.

I would of thought they had some inclination of the reason you are there? He asked me all the basic questions. Then we sat in silence while he read the ultrasound report. Then looked at blood tests and decided that it isn't cancer. 

But because there are multiple solid lumps on both testicles then when they have their meeting on Wed or maybe Thursday, they will bring this up look through the ultrasound pictures and let me know within the week or by next Wednesday..... 

I can safely say I don't feel fully confident on this man's judgement. 

Logic would dictate that surely he can't make a diagnosis without actually seeing the issue. Not within 5 mins if reading the report.

Am I wrong? 

gregm
Posted by

Hi Crazy E,

I've got a Spicialist near me , damn fine tandoori chicken ;-), and from what you say you might just as well have asked them!

I don't think it unreasonable for them to therefore say what they think it is, or explain why they think it isn't. I suspect they are right, but there's no reason to keep the thoughts secret. It is possible to make a diagnosis quickly if you have results in front of you and the experience to understand them, it may well be something that specialist has seen many times before. They don't need to have performed the scan etc. From the scan it sounds as if they were pretty sure it wasn't TC (e.g. no blood supply to the lumps?), and checked the blood test to see if it contradicted that.

There is a still a MDT meeting to have? that will be good to get lots of other pairs of educated eyes looking at it.

What I would do in your situation is book an appointment with your GP. Tell them you don't understand the reason for the "not cancer" diagnosis, as no information has been given on what it is. You can ask your GP to explain (they should have access to the specialists notes), or politely ask if they might write to the specialist and ask for an explanation that they can then give/translate for you. I would also ask whether that means there will be surveillance appointments for them to make sure they got it right.

Greg

Crazyenglishman
Posted by

Hi greg

Sorry for the spelling errors, wrote fast as I had a long way to travel for work. 

See I've learnt more from what you just wrote then the actual visit.

I know little about all this and it feels like no one wants to take 5 minutes to talk through it.

Still don't know what they are and when asked he avoided the topic. 


MDT meeting Wednesday and getting a phone call after that so that should be good. 


Ill book if I'm still unsure after the phone call. It just annoyed me that he seemed off in a distant relm and gave no information other than what the doctor could of told me. I expected a little more of an in depth analysis. Not a quick scan of the report look at the bloods then send me on my way. 



Paul277
Posted by

If they aren’t sure then they should surley offer some kind of surveillance just incase. I would ask if that was an option because I had a misdiagnosis in 2014. I was told it was definitely cancer from the ultrasound  and after orchidectomy it turned out to just be scar tissue. When they sent it off to barts in London the professor there suggested in some cases its best to watch and see if theres any growth rather than risk removing a healthy testicle. Not much worse than having a ball out for nothing I can tell you. They are also very unlikely to do a biopsy (although it is possible). You can always get a second opinion or even pay to see a urologist privately if you don’t feel confident with the doctors you’ve seen already. Its a tough one but remember you don’t want to rush into any surgeries on the off chance its cancer. They say the ultrasounds are 99% accurate but it depends on whos looking at them!

Cheers,


Paul

Crazyenglishman
Posted by

Been a while since I posted but I have some further developments. 

Been to see another consultant who was excellent. They have come to the conclusion that they still don't know what the issue is so we discussed how I would feel if they decided to remove and found nothing, apparently no one who has seen the images has ever seen anything similar to my lumps. There is a chance it could be cancer but they want to explore every option before removal. So I'm booked for a ct scan on chest and stomach and, due to the nature of my work, they are checking with the infectious diseases specialist to see if they have seen anything similar. For now I have to take antibiotics to see if there is a change. Sperm is going to the sperm bank and I'm penciled in for possible removal of one testicle after the 22nd.

I got to see the images today and can see why they would be confused.

If I'm honest I'd rather they remove and find nothing then live life unsure. Only issue is just because one is benign dosnt mean the other one is. So it's quite possible I may have to have both gone. 

Pretty awful month if I'm honest. 

gregm
Posted by

Hi,

Sorry to hear this is still going on, not sure what to advise, but definitely got everything crossed for you,

Greg

Paul277
Posted by

Hi mate,

As I’ve mentioned before I had a testicle removed and it turned out to be minor scar tissue. My advice to you would be to think long and hard about any decisions you make. Once its gone its gone and I took it very badly, I felt violated and still suffer from PTSD today. In the final pathology report for my case which went to Barts in London, they state “in some cases where there is uncertainty it is advisable to carry out surveillance rather than removal to prevent unnecessary orchidectomy and patient distress.” 


They sometimes forget that the number one rule of being a doctor is to do no harm to the patient. They won’t offer you a biopsy but it is possible, they do it all over the world. They prefer to make a clean cut and chance it over here in the NHS, maybe for safety reasons which is understandable but I reckon its a bit financial as well. My advice would be to get as many opinions as you can even if that means taking the scans elsewhere. We are always told that ultrasound is 99% accurate for testicular cancer and to trust their judgment but in the end its your decision and you need to be as informed as possible. The ultrasound is only as good as the radiologist looking at it.


Thanks,


Paul