New diagnosis...I think - lots of uncertainty and questions

Testicular cancer

A group for anyone affected by testicular cancer to get together, ask questions, share experiences and support each other.

New diagnosis...I think - lots of uncertainty and questions

No. of entries: 21 | Posted on 25 Feb 2013 12:37
  • Hi all,

    Sorry for the long message got a lot of random thoughts going through my head right now.

    Last Thursday I had an ultrasound as a follow up to a repeat occurrence of a urinary tract infection (epididymo-orchitis) - and the scan showed some very worrying shadows.  The urologist examined me and told me my left testicle was "very abnormal" and she was "pretty sure" it is cancer.  She has put me immediately on the waiting list for an orchidectomy although she still wants to review my case with her multi disciplinary team on Tuesday this week.  Which happens to be my 44th birthday.  Happy birthday huh?  

    So hopefully I'll know more then. I am guessing she wouldn't have mentioned the C word unless she was pretty darned sure but I really feel like I'm in limbo at the moment. 

    The specialist nurse who is usually available to help with questions is not available until Monday so I'm left to my own research right now.  I have done a lot of reading online over the last few days so am getting up to speed. I can call the nurse tomorrow so that will help I guess.

    They took some blood on Thursday which I guess will tell give them some clues - maybe at least it can confirm the diagnosis and tell them what type of  cancer? Then I have to have a CT scan on Friday to see if it's spread.  That I guess is what I'm really dreading, the thought of it having spread further. Even then I guess I won't really know for sure until they do the surgery and perform a biopsy.

    Trying to be positive but have a constant sick feeling in my stomach - metaphorically rather than symptoms - I hope!  My dad died from pancreatic cancer when I was just 15 so I've always has a fear of the big C - this is just totally blowing my mind right now.  

    My wife has been great and very supportive but I don't want to bring her down by sharing my negative feelings and worst fears.  I'm sure she must have a lot of fear and uncertainty as well but I think she is deliberately being positive and putting a brave face on rather than sharing her concerns.  

    I guess from my research I understand some of the basic facts about testicular cancer, it's different forms and stages, survivability etc.  But I still have so many questions so just hoping some of you have been through this and can give me some advice. Also I guess just wanted somewhere I can share some of my fears.

    Firstly, so far all of this has been through the NHS. My company provides private healthcare with Bupa - I guess if there was ever a time to use my cover this is it right?  I spoke to Bupa and they were very helpful, but until I have confirmation from the urologist and have a definite treatment plan I can't really do much with them.  Any experience as to what is involved in switching?  Any specific experiences with Bupa?  

    I told my boss and HR at work and they have been very supportive, but right now I am so scared I have this sick feeling in my stomach and am struggling to concentrate.  I tried to keep this weekend as normal as possible and sometimes I was able to distract myself with other things, but today driving home I was really struggling to concentrate on driving.  I am worried that I just won't be able to work.  Has anyone been in the same boat and how did you deal with your work in particular?  

    Anyway, that's it for now - I'm sure more questions will occur to me, would appreciate any help or advice anyone has to offer!

    Thanks,

    Ken

    Always look on the bright side of life! :)

  • hello ken

    first of all your feelings are normal as i was the same i felt so sick when i found an enlarged testicle i didnt eat a thing for 3 weeks and lost lots of weight and i couldnt concentrate at all. you are going through the emotions and stages of not knowing whats going on and this is why you feel the way you do. the good news is you are now in the system and you will be looked after. the bloods will show them if your markers are high or not not so much what cancer it is. they will know this once the testicle is removed and they have done all there chopping and dicing. the scans will give them the info on the spreading and dont be to frightened by the word abnormal it sounds bad but its just a term they use in the medical world. it is going to be difficult for you and your partner until you know exactly whats going on. make sure you take someone to appointments with you as you will hear somethings but miss everything else and the person with you will here the rest. what ever the result you can and will be cured and there will be lots of people on here who will tell you the same. 

     

    everyone on here can share there experiences with you which will help but once you know whats going on then we can give you a heads up on whats coming. try not to google to much as this will not help and everyone is different. please make sure you share your thoughts and worrys with us and we will try and take some of that weight with you and help you every step of the way on your journey to recovery. 

     

    andy 

    Andy Wood


  • Hi Ken,
    Welcome to the site. I'm sorry to hear of your diagnosis, but you have been given good advice by Andy especially about googling!
    Remember everyone is different and when you google you are given worst case scenarios, especially about side effects. Your nurse will give a more realistic picture which will be filled out as they get more information from the tests and scans.
    The people in this group will be able to give you firsthand advice from their own experiences.
    As you get more information you will feel more positive about the outcome.
    When I was diagnosed with prostate cancer my brain froze! Luckily I had my daughter with me who took in all the advice and was able to help me. My daughter was rather amused though when at 73 I was asked if I wanted to freeze some of my sperm!
    I was also in BUPA and wanting to get the tests over quickly and get treatment started, I was told that it would be just as quick in the NHS and that someone would contact me in the next few days to fix appointments. My advice is ask about it, but I can't fault my treatment.
    Good luck with the treatment and have a great birthday tomorrow,
    Colin.


                      Click here to find out more

  • Hi Andy,

    Thanks for your reply - ok, so on the plus side if I am so sick I stop eating I could lose a load of weight which is great news as I really need to lose a few stone! :)  Sorry, excuse bad humour.  Glad to hear I'm not alone in struggling to to concentrate.  As you say the worst is not knowing, but I've been reading through some of the threads on here and it's reassuring to hear so many people with similar experiences and feelings.  

    My wife has spoken to her boss and HR department and they have said she should be fine to take some compassionate leave to come with me on appointments as you suggest - I definitely struggled to hear and remember what the doctor said when she broke the news so that's a good idea to have her there to hopefully be a bit more calm and collected.

    I will hopefully know more tomorrow once the consultant gets back to me - just one of life's wierd co-incidences that tomorrow is my birthday!  

    Really helps to talk about it - I will post once I know a bit more - thanks again!

    Ken

    Always look on the bright side of life! :)

  • Hi Colin,

    Thanks for the reply.  Yes, I guess the internet is a double-edged sword, there is no shortage of information out there but it's difficult to filter it.  When I spoke to Bupa they actually gave the same advice and recommended I stick to looking at the Macmillan site and Cancer Research UK and don't go off looking everywhere.

    They had told me the nurse would be back today but just phoned and her voice mail says she's actually off tomorrow. I have my list of questions together so will call first thing and hopefully she can help me understand what happens next.  There are a lot of things to get my head around. 

    I will see how it goes regarding Bupa.  My dad died from cancer at least in part because the NHS messed up and mis-diagnosed him twice, so by the time they figured out what it was it was too late.  Admittedly that was a long time ago and so far my treatment with the NHS has been pretty good but already I've had two near- misses.

    As a precursor to this diagnosis I was admitted to hospital last year with a urinary tract infection and was kept overnight.  In the morning I was nearly wheeled off to have someone else's operation as they just happened to have two people with the same name!  

    Then this time around one of the ultrasound technicians got her left and her right mixed up. I now have two conflicting sets of notes that if I'm not careful might mean I end up having the wrong testicle removed!

    Anyway will see how I get on over the next few days before deciding whether to switch to private. 

    Will keep you posted and thanks again.

    Ken

    Always look on the bright side of life! :)


  • Hi Ken,Welcome to the forum, as you've already seen it's a great place to hear first hand experiences. I

    was diagnosed in August and went down the private route as it would be faster, which it was. From ultra sound to orchiectomy it was 3 days, and then a CT scan a few days after that. My experience went this way, ultra sound then meeting with urologist (who carried out the op) the op it's self, CT scan and the finally a meeting with a oncologist who told me of the prognosis. A few blood tests in between, they check for cancer markers (there's 3 of them) and also testosterone levels. 

    After the op they'll slice and dice the testicle to find out the type of tumour, that together with the blood markers and the CT scan will decide what treatment will be needed. That was my experience, it may be different for yours due to different help care providers or symptoms.

    You will find this all out soon enough. I was worried sick between each scan or test, from first meeting with GP to finding out the prognosis and treatment was 3 weeks via Pru Healthcase. The ops and scans where done by Nuffield Helathcare and my oncologist works out of Southampton NHS Uni Hospital. Always ask for dates and push for test results too. 

    I also brought my wife cause I kept forgetting things, so that's very good advice. And keep away from Google, frightened the life out of me reading some stuff. To aly fears of them taking the wrong one out, they'll use a pen to mark the side that needs doing. The cut will actually on your abdomen on the same side as the testicle to be removed. 

    Once you get more info do come back here and ask as many questions as you want. 

     

    Good luck
    Noel

  • Hi Ken ,

    I see you've had a good number of responses already, and I'm sorry you're here. There's a great bunch who will openly and honestly answer any questions you have.

    My experience was on the NHS at Addenbrookes in Cambridge, and they were bloody fanatastic, I doubt BUPA would have done it quicker or better.

    What happens from here depends on stage, but that really only affects the kind and length of treatment, the progonsis is generally extremely good, even for late stage. When I was diagnosed with cancer they thought it was kidney cancer, and I fell to pieces. A few days later after tests they confirmed it was testicular - I curled into a ball and cried. With relief. Its the one they can treat the best. A year on from stage IIc I'm pretty much cured and after 2 years the chances of relapse are very low indeed.

    Things will now hinge on what the fuither examination shows: surgery (orchidetcoimy), surgery + 1 blast of chemo, or several cycles of chemo followed by orchidectomy. Bloods don't always give much info - mine were normal.

    Whatever the diagnosis, the treatment is entirely manageable. I did 3 cycles of chemo, followed by orchidetcomy. I reckon I could have worked during chemo (but wouldn't hev been surpised if I had got tired and changed my mind about that), you could see how it goes. Instead I had 9 weeks off, but looked after myself - shopping, cooking etc. Two days after the orchidectomy I was back at wokr (moving slowly, and like someone had nicked my horse).

    During the diagnosis I scared myself silly by readng all the possible things that could happen on google. Hard not to search I know. But the vast majority of complications will not happen to you. So good to be informed, be prepared for a slightl;grim time if you have lengthy treatment, BUT expect it to be a normal treatment regime. Treating TC to the doctors is like another oil change on a Ford Focus is to a mechanic - they've beem there, done it, know it works. The things that make it hard are when you don't do what you're told by the doctors and nurses, or compications from infections etc. which can easily be avoided.

    You and I are of a similar age, and I'm sure you'll cope fine when you know the details

    Greg

    There will come a day when I can't, ... today is not that day

  • Hi Ken You've already received some great advice from the guys on here. Everyone is very supportive of one another so there's absolutely no reason to feel like you're alone. When I was diagnosed the feeling was one of shock. Cancer happens to other people surely? The hardest times were at night when I found it impossible to sleep. As the weeks and months have gone by, it's become easier to deal with as the realisation that the facts are that this is an extremely curable disease even in advanced cases. My initial diagnosis was a little bit wooly. After an U/S they said I had an infection which would respond to antibiotics. A subsequent scan 6 weeks later showed no change which Is when they decided it might be something sinister instead. Referred to a urologist who agreed. He also said that he could see from the scans exactly why it had been considered an infection at the initial scan. At that point I elected to make use of my employers private medical insurance, although I really had no criticism of the NHS care I'd received. The same urologist performed the op a week later with a CT scan in between. The pathology from the tumour showed it to be a pure seminoma. CT scan showed slightly enlarged nodes which gives me a stage of 2a. The oncologist that I'm now seeing is giving me a single dose of carboplatin this Friday. That'll be followed by 3 weeks of radio therapy. He stressed that its important to understand that not everyone suffers any significant side effects and even if they do, they can be managed quite effectively. I know how easy it is to say but trying to remain positive has helped me enormously. Of course I still have anxieties which can be difficult to control but now I just want to get on with the treatment so that I can get on with the rest of my life. Hope your birthday went as well as possible and that at least some of this has helped just a little. Brian
    In the words of Gloria Gaynor. I will survive!
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