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

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

  • 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

  • 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 


  • 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.
  • 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

  • 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


  • 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

  • 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
  • Hi Ken

    Not much to add except.

    Best news is that TC is 95% survivable and you will survive this even if it has spread.

    Best advice is to share your worries with your wife as she'll get it out of you in the end and if you don't she'll just worry more. Men just want to go in the cave and be protective but women are more reassured by talking about it, sharing the experience and being kept up date.

    Don't worry about mix up at hospitals they all ask your name and date of birth (I'm guessing your 1969 like me) and if you can learn your hospital number too that will remove any uncertainty. When you have the op they draw on you and 2 surgeons and one anaesthetist confirm it with you. I didn't have any mix ups like that.

    Concentrate on getting better and then worry about work, TC is survivable but it demands your full attention. If you go sick you get statutory benefits and the macmillan nurse can advise about that but check with your employer too, I' sure they'll be understanding.

    Finally stay positive to give your body the best fighting chance, do as the doctors tell you (several fellow patients decided to do pic n mix with the medication and it never ended well), Keep busy (do soduku, jisaws, read, computer games, anything as its when you are alone that the walls will feel like they are closing in on you) and Keep the faith (listen to music and be as positive as you can as the doctors with their ops and chemo are going to save your life and thats got to be good).

    All the best

    Richie

     

  • Thanks all for the support and advice, it's been really helpful.

    I finally got to see my specialist nurse at Kingston Hospital and she was able to answer lots of my questions which was very reassuring.  My deepest darkest (and of course most irrational) fear was that my TC would "spread" and turn into pancreatic cancer which is what my dad died from.  She clarified straight up that they are two totally different things and one can't turn into the other.  

    She gave me provisional dates for a pre-surgery assessment this coming Tuesday (5th March) and for my orchidectomy (11th March).  I did ask if going private would bring the op forward and she said probably not.  Partly because we also talked about sperm banking and given the schedules for that there's no way the op could be any earlier.  From a clinical perspective the nurse was keen to assure me that 11th is not too far off at all.

    Was surprised to hear that as I have a morning appointment for surgery on 11th I should be able to come home the same day.  That's the other reason I would have definitely considered going private - to get a private room.  The last time I stayed overnight in an NHS ward I have to say it scared the life out of me.  One of the old guys in there was in a lot of pain all night and was moaning and crying, messed the bed etc.  I felt bad for him but didn't get any rest myself. 

    My boss and HR have been very supportive telling me to take as much time as I need for treatment. That being said, I have decided to take Thursday and Friday off work as vacation just because I'm struggling to concentrate and focus on my work and on the one hand it's not fair to my company and colleagues, but on the other hand it would be good to have some time to myself prior to surgery.

    Reading some of the responses on here it sounds like I should be fit to work from home at least within a day or so of the op, although my HR team keep saying that I will need to see an occupational therapist who will approve whether or not I'm fit to come back to work.  Good to know they are putting my well being first.

    I had my CT scan yesterday so hopefully come Tuesday's pre-assessment I'll have the results of this and my initial blood test which will tell me a bit more although I understand that even that is inconclusive until after the surgery and biopsy.

    Now that I have dates for surgery I've been comfortable to tell friends and family and they've all been really supportive as well.

    Feeling much more positive now - just have to watch those quiet moments - as you said Richie - where the walls close in.  Had one bad moment while driving over to see the nurse at Kingston - just an anxiety attack - but it's normally a 25 minute drive (which I used to do daily as I worked just next door to Kingston Hospital) and I got lost and took nearly 40 minutes to get there!

    Thanks again all for the support, will keep you posted.

    Ken

  • Hi Ken, 

    Just a quick reply as I'm on my way out. 

    I had my orchidectomy and lots of preliminary appointments at Kingston, they're a great bunch and from what I've read, there is no time benefit to going private.

    As far as them stealing the wrong bollock goes, don't worry, they check with you in pre-op, draw arrows and check again before putting you to sleep. This is mainly done for your peace of mind I'm sure. They'll not get it wrong.

    Mine was my left testicle so we had plenty of jokes about making sure they took the "right... NO. No. NO. The correct one!" 

    I'm now under the Royal Marsden in Sutton. They are brilliant too. 

    Feel free to get in touch if you want a chat. You will get the best treatment and the nurses, doctors and porters are all lovely. 

    Best of luck with it all. 

  • Hi,

    Really appreciate the response as you have had first hand experience of the same hospitals. Funnily enough I was originally from North London but moved to SW London for work and my first flat was in Galsworthy Road, right opposite Kingston Hospital, so it does have a certain safe feeling to it.

    Just reading through your blog now and finding it really useful - would be great to stay in touch so will drop you a line through your blog site if that's ok? 

    Ken

  • Just an update - had my CT Scan results on Tuesday during my pre-op assessment and the results, while not 100% conclusive looked to be clear - no obvious sign of any cancer spreading which is a massive relief.

    Op is on this coming Monday, 11th March, so I'm now not worried so much about the cancer spreading as the more immediate concern about how painful the surgery will be - or rather the recovery afterwards.

    Spoke to a colleague who said he was pretty immobile for the best part of three or four weeks, but also heard from various people that I should be up and running (ok, hobbling / walking) within a day or two - what's been everyone's experience?

    I work from home normally but my boss has told me don't even think about trying to do any work until I'm fit - I'll need to certify myself fit for work - which is good news and removes some of the stress, so I guess as long as the op all goes well I should count myself very lucky!

  • Hi Ken,

    Just wanted to say good luck with the op, and don't rish back to work. You won't get bonus points for being too macho and going back too early.

    Colin.

  • you can hobble painfully after a day or so.  But painkillers will flatten you for a while.

    The longer healing tissues are nerve..it will feel numb for months.

    Id say more or less 80% functional after a week or so.