Where to begin..?

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Ok looooong story, so I’ll just give the headlines. Various chronic auto immune diseases, liver transplant, subsequent finding of cholangiocarcinoma (bile duct cancer) that had spread outside the liver before removal, chemo, remission. Post two years from transplant and I’ve found a lump on my left testicle. 
I’ve been to my GP who has referred me for an urgent ultrasound (six week wait?) which is next Friday. She thinks it’s a cyst but of course my over active imagination disagrees. 
From what I understand the chance of my cancer spreading to the testicle or epididymis is very rare but it’s been an in-house joke that every time I’ve gone to a consultant etc at some point they will say “you’ve got something pretty rare” so rare has become a bit of the norm for me. 
I’m trying not to worry but any lump is always concerning but for me (or anyone else) I think when you’ve been through a lot already it’s hard not to be balancing on a knife edge. 
the lump is at the front of the testicle and does feel like it’s more a part of the epididymis but also feels that it is attached to the testicle itself. It’s hard to tell if it’s changing in size, again your imagination can take over, and likewise sometimes I feel as though my testicle itself is getting smaller. 

I’m not so much concerned for myself if it is cancer, more so for my wife, it hit her hard when we received my first diagnosis and I know she struggled watching me when chemo was going on. 

I don’t know why I’m posting really. Maybe just to talk to any like minded people, share experiences. 

  • Hi identity,

    Goodness you already have too much experience of this disease!  

    The ultrasound doesn’t tell whether you have TC or not, but it will show up abnormalities and if it needs removing.  You may or may not know but, TC is the most curable cancer, and the operation may be the end of it, no more treatment. 

    Fingers crossed it turns out to be nothing, you’ve earned an easy win!

    any questions ask away.

    take care

    dan

  • Thanks Dan,

    yeah I’ve been doing the typical search Dr Google about all possibilities (I know I shouldn’t) and yes everything points towards it being one of the most curable or easily treatable. The thing I can’t find an answer to is, is that still the case if this is my liver cancer returning? If this isn’t primary TC? 
    Its hard not to think about the worst case scenarios but I’m very much a hope for the best but plan for the worst kinda guy. If I’ve already mentally prepared myself for the worst case scenario I know I can deal with it should it happen. 
    Hopefully I’ll get a friendly radiologist on Friday that may give me a heads up on the scan results/what they can see. If not it’s back to waiting. 

    on a side note, having my balls massaged on Valentine’s Day by a complete stranger!!!

    I’ll just leave that there. Joy 

  • Hi,

    Obviously I’m not a doctor, so anything I say only comes from experience.....and google.....

    One of my main concerns was that I didn’t have TC and that another cancer had found its way to my testicle.  This is very very uncommon. I’d go as far as to say rare, but I also know you know too much about “rare”.  IF you have cancer in your testicle it will 99.xx% of the time it will be TC.  Also if TC spreads to lungs it’s still TC.

    When I had my ultrasound the doctor all but told me I had cancer, showing me the mass in one testicle vs nothing on the other, so likely you will have some news on the day of the ultrasound.

    You will know the waiting for  scan results game.  What I can say is that for the vast majority, a bit of waiting to get results (other than having an op to have one removed) is as bad as TC gets.  

    Fingers crossed

    dan

  • Thanks again Dan,

    it’s all a waiting game, kinda used to it by now but doesn’t get much easier. Joy 

    did a doctor do your scan then? I was expecting a radiologist? From experience anyone other than a doctor tends to shy away from giving you any of their impressions of what they’ve seen. 

    I know my oncologist has been keeping an eye on two or three lymph nodes in my abdomen that are slightly larger than norm but I don’t think have gone over the time to be concerned size as yet. 

    hey ho, only a few more days to wait. Time will tell. Hopefully it’s just a cyst. 

    hope you are well Dan, thanks again for replying. 

    Mark

  • Hi mark,

    Pretty sure the radiologist I had was a doctor.  I asked to see the scan as it was being done - even I could see one testicle had a dark mass in it. 

    Other thing that made me think he was a doctor was the way he just threw some paper towels at me, and said “I’ll book you a CT scan” as he was leaving the cubicle.  I’ve found doctors are very matter of fact, and other medical professionals are a little more thoughtful!

    Cheers 

    dan

  • FormerMember
    FormerMember in reply to Identity

    Hi Mark,

    My right testicle was very hard and painful at the end of November last year so I went to my GP who prescribed antibiotics to rule out bacterial infection. My GP eventually referred me to a urologist (after the antibiotics hadn't really helped), who gave me a physical examination and asked about my case history. The urologist suspected it could be something more and sent me (literally downstairs) for an ultrasound on the same day.

    The radiologist report was given to me to take back upstairs to the urologist, and during the ultrasound scan itself, I could see that my right testicle was markedly different. The report which I read was detailed and concluded, "features would be suggestive of a right testicular mass - possibility of a germ cell tumour or seminoma". I did not get to speak directly to the radiologist.

    But from the report, I pretty much knew it was likely testicular cancer, and did lots of Googling as I waited to see the urologist. He talked through the report and ultrasound scan with me (showed me the scan photos) and said he agreed with the radiologist findings, that it was likely seminona, and he'd need to operate right away. I had the orchietomy the following day.

    As this was before Xmas, it was only a couple of weeks later that I went back to my urologist for the pathology report, which confirmed Stage 1 seminoma. (Googling had indicated that most of the time, any "mass" in the testicle is likely to be testicular cancer, so I was mentally prepared by the time I had this consultation.)

    My urologist referred me to an oncologist, and I am now on my second cycle of a 2-course Carboplatin adjuvant treatment.

    This forum / site has been really helpful, just to talk things through and read about the experiences of others.

    As you know, the waiting and not knowing is challenging, not just for ourselves but those around us, so I empathise, but please do come on here to ask questions as there's a great support network.

    best, Kevin

  • Thanks Kevin,

    hope you’re doing ok now?

    im hoping I’ll get some kind of news Friday at the scan. It’s the not knowing that gets to me. When I know I can deal with it. I don’t have any other symptoms other than the lump, I know that doesn’t mean anything but I always worry that I’ve turned into that bloke that thinks everything is wrong with him.