Testicular cancer, my story so far

Hello, I would just like to add my story to the forum as talking to people in a similar position can always help. I underwent an orchidectomy 3 weeks ago and was told that it was cancerous last Thursday, also told that the tumour was of the seratoma kind. My blood tests and xrays came back as normal which is a big positive and I am due to have a CT scan on thursday morning, I'm pretty sure the doctor said that I will still have to have chemotherapy even if it hasnt spread, but my mind was racing away with me at the time and not sure if he said "might " or "will" have to have it. Have been keeping very positive about the whole ordeal as I know this type of cancer is very treatable and there are many people in worse predicament than myself. My only concern is that i believe I may have had the lump for more than a year as I only had it checked out once it started to get uncomfortable. Hope that all made sense, those of us in the building trade arent renowned for our literacy skills :-)

  • hi stupot

    and welcome to the site,and i am sure you find it of a great help,and dont worry about literary skills as like myself you probably had no need for them since your school days but,they will come back to you,although as you are writing things you will probably thinking is that right,but everyone understands,and when you say your lump may have been ther for a year, the most important thing is now that you are having the treatment that you need,and you keep up the positive attitude that you have,and if you are not sure of what you have been told have a word with your cancer nurse just to clarify things,so take care and keep us up to date and do keep posting.

       jeff man hugz to you.

  • Hi

    My 27 year old son had testicular cancer 2 years ago and also had a orchidectomy which I think is pretty much the only way they can tell which type cancer it is as they can't do a biopsy (but the ultrasound scan would have more or less confirmed it was cancer anyway).  His was a teratoma type (germ cell) cancer.  He had a scan about 2 weeks after surgery which showed it had spread to his lymph glands behind his abdomen so he started chemo the following week.

    The consultant had told us that testicular cancer has one of the highest survivor rates and told him he had a 95% chance of cure and if you are unlucky enough to get cancer, then that was the best one to have!  His chemo lasted 9 weeks and he really did go through the mill as anyone would having this horrid treatment but I'm so glad to say he's doing really well.  He has 2 monthly appointments where they take a blood test which is a good indication that all is well as it would show up "markers" in his blood.  Every other appointment he has to have a CT scan as well to check the lymph glands.

    My son went to the Drs as soon as he found the lump but he had no idea how long it may have been there as it was quite difficult to find and was just by chance that he noticed it.  Try not to ponder on how long you had left it as you say your blood tests were normal.  The CT scan will show if it has spread but they may decide to do chemo even if it hasn't to be sure that no cells have travelled (belt and braces approach)!

    Hope you get on OK tomorrow and do let us know.  I can ask my son any questions that you may have.

    Take care

    Marion x

  • hi,im sorry that u r feeling worried about ur post surgery,my dr didnt tell tell me much either.i had my itchy lump removed this morning so while i cant lift things&having a glass of wine i googled saratoma&its v hard 2 find much about,as u probably found same.closest thing i found was something about a *** lump (not being silly,their term not mine) & a bit about fluid swelling after breast surgery that needed 2 be drained.sorry im not much help but maybe ask your dr for more info 2 know whats happening next &hopefully put your mind at ease.good luck,hope it all turns out well

  • After having my CT scan they have found that it has spread to a lymph node in my abdomen, So I will be starting BEP chemotherapy in due course, the thing that puzzles me is that i was told the cancer was Seranoma type by the urology department and told it was teratoma germ cell type by the oncology dept.

  • Hi marion hope your son is recovering well, seems like i have something very similar to him, I start my BEP chemotherapy soon which will be 3 lots of 3 day treatments with a break of 3 weeks between them, is that the same treatment as your sons?

  • oh im sorry,was hoping 4 ur sake that it was the 1 that i couldnt find much on.i hope u keep positive & your treatment goes well

  • Hi Stupot44

    Yes my son is doing really well thanks and back to his old self.  He rarely talks about it apart from his 2 monthly appointments and no one would know that this time 2 years ago he was going through it as he coped so well.

    I can't remember the exact programme my son was on but I know he had 3 days of BEP one week which was 24/7, then he had a break of a week or so then had one day of chemo followed by a break then the 3 days and so on.  I'm at work so can't ask him but I remember it being 9 weeks in total.  Obviously the 3 day chemo was the hardest and he was quite sick for a about a week but he was fine after having the one day treatment.  The only sympton (apart from sickness) was that he said everything tasted funny - a bit like cardboard!

    Hope the treatment goes OK for you.

    Take care,

    Marion x

  • Hi Stupot,

    I've just been through treatment for testicular cancer too.  I reckon it took me about 8 months to get around to going to the doctor after I first noticed something wasn't right (I will never understand why I left it so long).  I had a CT scan a week after seeing my doctor and that was undoubtedly the worst week of my life - I was certain that given the length of time that had elapsed that it must have spread.  However, despite the length of time there was no obvious sign of spreading (stage 1 seminoma) - the sense of relief was unbelievable.  I did have to have a single blast of carboplatin chemo though as the tumour was quite large (I think it was between 5 and 6 cm in diameter). 

    To be honest, the chemo wasn't too bad although I only had a single dose and I understand that if you have to have multiple doses it's not nearly as easy!  Probably the worst side effect was actually from the steroids which gave me chronic hiccups.  This sounds funny but when you can't sleep because of it it's not so good and combined with the terrible indigestion that the chemo gives you it's not nice.  I also found that if I tried to do anything e.g. watch TV, read a book, go for a walk I just felt sick (sort of hungover kind of feeling) within about 15 minutes so I ended up just lying in bed listening to the radio all the time.  I also got frequent mild headaches and felt pretty rubbish for about half an hour when I woke up in the morning.  It took about 2 weeks to get over the worst of the symptoms but I was still finding walking long distances or up hills a bit of a chore 2 months down the line.

    Good luck.  I'm sure you'll be fine.

  • Hi moody man I'm going through same thing atm had one testical  removed in april also was seminorma type my ct showed some in Renoperitoneal lymph node anyway I've been given one high dose of carboplatin too around 3 weeks ago I got bad indigestion too to the point it was almost making me sick I've got about another 3 weeks then another ct then radiotherapy for 10 days 

  • Hi there.

     

    How did it go with the treatment?  I didn't have to go through radiotherapy as part of my treatment so hope it wasn't too bad for you.

     

    It's been a year now since I finished my treatment and I'm happy to say that I've managed to stay clear.  The quarterly monitoring is a bit nerve-racking at first but after the first few times you get used to it.

     

    Take care and hope you get a good outcome.