Hi new here. My son has recently been diagnosed with testicular cancer again. He is only in his early twenties. First time he was 15.
Feeling frustrated at the public hospital system as doctors changing or relocating- cant get an appointment to see endocrinologist at the hospital for 5 months-- how did they think he was going to manage.
Also no offer of emotional help- not that he would accept it- still would be nice to be offered it.
He luckily has a sympathetic GP who got him to a private endocrinologist- but that took three weeks.
His second last CT scan showed a spot on his lung- he recently had another one and the spot is still there- no bigger.
There doesnt seem to be any urgency for follow up treatment- re radiation/chemo- just in case it has spread- how long do we have to wait.The reason they didnt put in a prothesis was because they said it would interfer with the radiation/chemo- and yet that isnt happening.Now he will have to have it done electively-he cant afford to wait or pay for it. Too many doctors with too many opinions.
Before his last op he was self-harming, drinking too much, several sexual partners and I'm at my wits end. Maddermax
Awful, awful, awful! However, in this day and age testicular cancer in young men, is no longer the problem that it was. In the 1970's the picture was fairly grim, but by the end of the 1970's it had completely changed so that now days the 5 year survival for testicular cancer in young men is 99%. He should have a good prognosis. However, there will be a lot of psychological issues to be dealt with and some of these are coming out in his behaviour. A wise person many years ago told me that you cannot be a psychologist, or a social worker for your teenage son, all you can be is a parent. If it is a good centre that he is attending they will have all the needed psycho-social services available and you just have to sit back and let them deal with him. If they don't have these services available then ask why not and should you be somewhere else? In many of these cases we think that delay makes things worse - that is true for some cancers, but not for all. Sometimes we just have to step-back, take a deep breath and just let others deal with things. It is hard with teenage sons, it is hard with sons in their 20's and it is hard with son's in their 30's. (I believe it is so with daughters but I have not the personal experience), As a parent all you can do is be there for them when they want you.
Take care and look after yourself - the worrying doesn't stop but it is important you do not let it overwhelm you.
O God, thy sea is so great, and my boat is so small. Breton Fishermen’s prayer
dear sailor, thanks for replying. I feel very isolated- told my extended family about the first cancer but havent told them that he has lost his remaining testicle. I think they will think of him differently- also such a personal, emotional burden for him to carry for the rest of his life- dont want to add "pity" to the pile.
Did they ask him about collecting and freezing sperm? They should have. It might also be helpful to ring the cancer helpline, 13 11 20, to see if they have any cancer connect volunteers who have also had both testicles removed as a result of cancer. Your son may not want to talk to them at this stage but may well find it helpful in the future. I don't think pity will be added to the pile unless your son wants it to be. I have several friends who are in that situation. They have implants that sit in the scrotum and release hormones so that they lead a fairly normal life, with relationships. He will need the help of a good psychologist over the next few months.
You might find talking to the Cancer Helpline useful yourself, in terms of getting some strategies for you to remain in control of your own lives. That is important.
As we sail thru life, don't avoid rough waters, sail on because calm waters won't make a skillful sailor. Anonymous
Just to introduce myself, I'm AmandaC's husband and I had testicular cancer about 18 months ago.
Sorry to hear about your son, especially being a 2-timer. Its a rare disease to begin with its extremely rare to get it twice. Having said that I know a guy who had 3 seperate occurances by the age of 30. The third one happened because he was left with half a testicle after the second occurance. The doctors figured it would be good to leave him with some testicular tissue so he wouldn't have to rely on testosterone shots so much... and they were wrong (3rd time round he had a stage 3 non-seminoma too... not good). I've heard they don't consider that option very often anymore.
Anyway, it sounds like your son has had his second orchidectamy and your waiting to see an endo to get his hormones sorted out? the spot on his lung might just be a large lymp node or blood vessel. Testicular cancer, especially seminomas which it sounds like your son had, spread in a very predictable way, from the testicles to lymp nodes in the pelvis and adomen and rarely beyond that. From my understanding, its unheard of for it to jump from the testicles to the lungs or above. A friend of mine actually had a similar situaion (without the cancer though). He had to have a lung scan prior to emigrating from America to Australia and they found a spot on his lung that looked a bit dodgy. It was in a very difficult location (next to big arteries) and it took a very complex and expensive operation for him to have it biopsied. It turned out to be nothing, just a naturally big lymph node apparently... shame that he had to pay $40K american to find that out. Luckily our health system isn't like that.
It must be a tough time for your son waiting for the endo. You'd think that sort of thing would be sorted out fairly quickly, but the hospital system always manages to suprise me. I actually chose to go through the public health system where I live because the private hospital wanted me to wait several months for one of their oncologists to get back from holidays. I thought the public hospital was great in comparison.
However, I had several operations at another public hospital which wsan't so great. Those guys tried to talk me out of getting a prosthesis inserted too, using the excuse that there was a 2 percent chance it could get infected (really). I asked what would happen if it did get infected and they said 'you'd need antibiotics', 'really bad antibiotics' I asked... 'no just regular pescription stuff' !?!. I was 3 months out of chemo at that stage and very healthy, so the risk didn't faze me much. But the fact I had to argue for it did, considering that I was also told they were removing the testicle for 'academic reasons' (my cancer didn't originate in my regular testicles, but the only way to be 100% sure of that was to take a very slightly dodgy looking one out and dissect it). I figured the least they could do for that is give me a prosthesis.
Anyway, sorry for rambling on. What I orignally intended to do was tell you about www.tc-cancer.com which you and/or your son might find very handy. The website has forums with a dedicated group of really supportive people including mums, dads, wives and girlfriends of testicular cancer sufferers. There is a dedicated forum for '2x warriors' and guys that need artificial testosterone. Your son might find not want to open up to anyone on the site, but it might help him just to read other peoples stories and there are people just like him on that site. You might find it handy too, some of the most active people on the site are parents and partners.
Good luck with everything.
My brother just had an ultrasound today. Likely to be a seminoma. Could you give me an idea of the size of your seminomas by the time you wen tot the doctor? I am just a bit worried my brother may have waited a bit too much because it was not sore or caused any discomfort.
Mine was a non-seminoma and the primary was 10cm when I was diagnosed (mine was a bit special, it arose in my abdomen rather than the testicle and was very hard to find at first).
I've met a guy who had a 17cm primary in his testicle when he was diagnosed. He was having a lot of trouble getting around for obvious reasons. His GP kept giving him antibiotics for it (thought it was an infection).
Anyway, we're both fully recovered. I'm now in my 4 year of remission.
That makes me more relaxed. I couldn't find info on it and thought my brother's 5cm's seemed pretty big.
We are seeing an urologist tomorrow (I found it was strange having to go to an urologist first rather than seeing an oncologist straight ahead?) to confirm the results from the ultrasound. The GP was really nice and got my brother's the appointment for tomorrow.
Anyway. Thanks a lot again and I will report back tomorrow.
I'm not sure exactly how the process goes but I saw several specialists before being handed over to an oncologist. The diagnosis of cancer came from my surgeon, I didn't see an oncologist until about 4 weeks after surgery. Oncologists handle chemo and radiotherapy and your brother may not need those straight away (or hopefully at all).
Hope it goes well today.
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