https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2112#M2329 Hi Albert and Steve You can go public at anytime you want. Even though you are booked for surgery next week, you can ask to be referred to the urology clinic at your local public hospital. At the public hospital, as you have private health cover you can still be a private patient, but your out of pocket expenses will be less and if anything goes wrong you have all the back-up. Some of the worst care I got was in a small private hospital - the food was great. The best care I got was in a large public hospital - the food was awful but I was on a bland diet! When I've compared notes with other long term cancer people they have had similar experiences. A couple of years back a study was done on the pathways between public and private cancer care. It found that lots of people cross over from public to private and from private to public in the course of their treatment. Myriad ways of doing so. The report can be found at http://www.nemics.org.au/Display.aspx?tabid=2734 Above all ask questions - never stop asking questions. Remember you are the one with the cancer, you are the one that has to live with the outcomes. If you have concerns, ring the helpline 13 11 20, ask to speak with someone from Cancer Connect who haas had testicular cancer. Cheers Sailor Although it smacks of seamanlike efficiency; to say that we got our anchor and sailed out is not strictly accurate. It leaves much unsaid. H. W. Tilman Wed, 25 May 2011 23:23:19 GMT Sailor 2011-05-25T23:23:19Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2099#M2316 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 Wed, 12 Aug 2009 03:38:43 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2099#M2316 maddermax 2009-08-12T03:38:43Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2100#M2317 Dear 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. Sailor O God, thy sea is so great, and my boat is so small. Breton Fishermen’s prayer Wed, 12 Aug 2009 12:00:56 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2100#M2317 Sailor 2009-08-12T12:00:56Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2101#M2318 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. cheers Maddermax Thu, 13 Aug 2009 01:01:02 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2101#M2318 maddermax 2009-08-13T01:01:02Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2102#M2319 Hi Maddermax 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. Take care Sailor As we sail thru life, don't avoid rough waters, sail on because calm waters won't make a skillful sailor. Anonymous Thu, 13 Aug 2009 03:18:58 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2102#M2319 Sailor 2009-08-13T03:18:58Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2103#M2320 Hey maddermax, 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. Steve Thu, 13 Aug 2009 13:03:51 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2103#M2320 stevec 2009-08-13T13:03:51Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2104#M2321 Hi there, 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. Thanks Mon, 23 May 2011 10:41:06 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2104#M2321 albert 2011-05-23T10:41:06Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2105#M2322 Hey Albert, 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. Steve Mon, 23 May 2011 11:53:10 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2105#M2322 stevec 2011-05-23T11:53:10Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2106#M2323 Thanks Steve 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. Mon, 23 May 2011 13:23:29 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2106#M2323 albert 2011-05-23T13:23:29Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2107#M2324 Hi Albert 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. Steve Mon, 23 May 2011 20:25:26 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2107#M2324 stevec 2011-05-23T20:25:26Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2108#M2325 Hi Steve, Thanks again. That makes a lot of sense too. So it sounds like surgery will be the first thing. I will report back after seeing the urologist Thank Mon, 23 May 2011 21:16:29 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2108#M2325 albert 2011-05-23T21:16:29Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2109#M2326 Hi Steve, We saw urologist yesterday. He was pretty positive. He has been booked for surgery on Thursday next week and will only need to stay overnight. We are doing CT scans and tests for markers today to determine the type of tumor. We were also looking into the different options and also looking into my brother's private insurance. He will still have to pay a fair bit even though he was on a private hospital medical insurance. The Dr's assistance is also checking is he can get covered for a prothesis they will implant in the testicle that will be removed. I thought more things would have been covered under either medicare or medical insurance. It does not only hit your health but definitely also your wallet. Thanks again and I will try to continue reporting as things move forward. Tue, 24 May 2011 21:26:14 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2109#M2326 albert 2011-05-24T21:26:14Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2110#M2327 Hi Albert, Looks like it went well with the urologist. Tell your brother not to worry about the operation, its not too bad. I had it done too. Sometimes they let you go home on the same day. I had private health care too, but I ended up choosing to go through the public system for everything. I was pretty much forced to because it all happened over christmas for me, and the private hospitals basically shut down. I felt like I got much better treatment in the public system to be honest, plus it hardly cost a thing and I got private rooms just about all the time (I was in hospital for about 40 nights all up). If I have to do it again, I'll go public. Don't take no for an answer with the prosthesis, its one of those things that will be difficult to fix up later. They tried to talk me out of it for some reason, but they didn't give any good reasons other than that a very small number of people get infections - which incidentally, are meant to be easily treatable. I ended up saying to the urologist 'exactly what is the issue' and he couldn't answer me. Mine was meant to cost me about an extra $100, but I don't think I ever got charged for it. Funnily enough, at a follow up examination, a different urologist pulled out a pack of about 20 of them from his desk and told me that he implants everyone with them (it was the same department, same hospital). I think they might be a minor hassle to implant, but don't let that worry you. Hope all goes well. Steve Wed, 25 May 2011 13:08:12 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2110#M2327 stevec 2011-05-25T13:08:12Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2111#M2328 Hi Steve, I fint it strange that they don't even mention public as an alternative. The first GP pretty much just send him straight to someone at at the private. The urologist was really nice though so everything is booked for the surgery next Thursday. They hav also confirmed the prosthesis was included. All up it is going at about $1,700 out of pocket expenses with the surgery costs included. What will happen if something else needs to be done? can you usually just moved onto the public system or how would you recommend ging about it if that is the case? We are getting the CT scans and tests for markers today. Thanks again, This is really helpful! Wed, 25 May 2011 20:28:56 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2111#M2328 albert 2011-05-25T20:28:56Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2112#M2329 Hi Albert and Steve You can go public at anytime you want. Even though you are booked for surgery next week, you can ask to be referred to the urology clinic at your local public hospital. At the public hospital, as you have private health cover you can still be a private patient, but your out of pocket expenses will be less and if anything goes wrong you have all the back-up. Some of the worst care I got was in a small private hospital - the food was great. The best care I got was in a large public hospital - the food was awful but I was on a bland diet! When I've compared notes with other long term cancer people they have had similar experiences. A couple of years back a study was done on the pathways between public and private cancer care. It found that lots of people cross over from public to private and from private to public in the course of their treatment. Myriad ways of doing so. The report can be found at http://www.nemics.org.au/Display.aspx?tabid=2734 Above all ask questions - never stop asking questions. Remember you are the one with the cancer, you are the one that has to live with the outcomes. If you have concerns, ring the helpline 13 11 20, ask to speak with someone from Cancer Connect who haas had testicular cancer. Cheers Sailor Although it smacks of seamanlike efficiency; to say that we got our anchor and sailed out is not strictly accurate. It leaves much unsaid. H. W. Tilman Wed, 25 May 2011 23:23:19 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2112#M2329 Sailor 2011-05-25T23:23:19Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2113#M2330 Hi there, Just wanted to give an update. My brother had his surgery on Thursday. CT's came all clean and the tests for markers came also good (not sure what it means they came good but I imagine it might be that it is either a seminoma or that he could almost confirm that it is not a non-seminoma?) He still decided to do the whole thing through the private hospital. We have appointment on the 14th to talk about pathology results. Only thing is that my brother says he has been very sore. The doctor did not talk about taking any pain killer about the operation so my brother i going to give him a call tomorrow before taking anything even though it is really sore. I am not sure if the doctor is meant to give you pain killers from the beginning or if he is to expect a call from the patient? Anyway, I hope you are all well and thanks again for all the support. Sun, 05 Jun 2011 11:18:15 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2113#M2330 albert 2011-06-05T11:18:15Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2114#M2331 Hey Albert, Thanks for the update. Sounds like its going well for your brother. No markers and no CT issues it definately a good thing. From memory, if its a seminoma and its hasnt' spread, that's a best case scenario for TC. With the pain killer situation, he should have got some in hospital after the op (I was on a morphine drip for 24 hours, although that was overkill) and maybe something like panadine forte to come home with. The doctor should have at least talked about it before he left hospital, so definatelhy call but also, make sure he's not overdoing it. Steve Sun, 05 Jun 2011 11:57:45 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2114#M2331 stevec 2011-06-05T11:57:45Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2115#M2332 G'day A;bert Pain management should be there from the very beginning - the surgeon should not wait for the patient to contact them but should be active on ensuring good pain monitoring and management. Go to http://www.painaustralia.org.au/ for more information about what should be done. Regards Sailor Sun, 05 Jun 2011 11:59:48 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2115#M2332 Sailor 2011-06-05T11:59:48Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2116#M2333 G'day Albert Pain management should be there from the very beginning - the surgeon should not wait for the patient to contact them but should be active on ensuring good pain monitoring and management. Go to http://www.painaustralia.org.au/ for more information about what should be done. Regards Sailor Sun, 05 Jun 2011 11:59:58 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2116#M2333 Sailor 2011-06-05T11:59:58Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2117#M2334 Hi there, Me again. My brother was on morphine as well after the surgery. Another doctor's appointment today with pathology results. Doctor said it is confirmed that it was a Seminoma but a rather aggressive one. It was grade 1 (contained). He says that unless further chemo and/or radio therapies are added, chances of it returning are 40%. With appropriate treatment should go down to 1% Urologist will be meeting Oncologist on Friday to recommend best treatment and we are going back to see him next week. Just had a couple of questions: 1. If we were to move to public system, do we just tell the urologist or the oncologist and then they/he will send the results to where ever we go? 2. If we move to public, do we get to choose which public hospital we go to or would the doctor recommend a place? 3. Steve, what were your experiences with the type of additional treatment you had. Side effects, etc Thanks a lot again Tue, 07 Jun 2011 08:11:02 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2117#M2334 albert 2011-06-07T08:11:02Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2118#M2335 Hey Albert, I was told my cancer was very agressive too, it turns out that's actually a good thing because agressive cancers are generally easier to kill with chemo (I hope that told you about this). Chemo stops cells from multiplying and if they're short-lived cells (which the fast growing ones usually are), the tumour will be more affected. Those odds are pretty good. I was given a 99% chance of mine returning without followup treatment and 10% following treatment (I was Stage IIC yolk sac tumour). They may not tell you the positive aspects of the prognosis until after treatment, because some people don't take it seriously. You'd be surprised about how many people refuse to have treatment. Anyway to answer your questions: 1)as far as I know your results will be stored with whatever hospital you're at, and if you change hospitals they send the file to the new one. The doctors in the public system that I was in could access patient information through a database from any of the public hospitals in the region (and possibly state). Not sure about the transfer from private to public though sorry. 2)I think you can choose whatever hospital you want, but they have to accept you and you'll need a referral from your GP. 3) I had BEP chemo, which is not usually administered for seminomas from memory. It was pretty full on - let me know if he's having that and I'll give you some info. I was told before we found out that it was a non-seminoma that treatment would either involve chemo or radiotherapy. The chemo would involve a day-visit once every 2-3 weeks, for 3-6 months, and that I'd be able to continue working during it, oh and that my hair wouldn't fall out. Radition treatment was meant to be similar (although only something like 3-6 sessions - sorry, I can't remember the details well). I had a lot of side effects from chemo, but your brother probably won't have that type of chemo. Let me know what they're going to give him. The main tips for getting through chemo are - get some good books/ipad/laptop or other entertainment, it involves a lot of sitting around. If he's getting strong chemo (talk to the oncologist about this): Take anti-emetics/painkillers like clockwork - I actually set alarms for myself to remind me to take them on time. Even taking something half an hour late can mess up your day. Definately take everything they give you, even if your feeling good. If he's perscribed dexamethasone (a steroid that helps with nausea), he'll need sleeping tablets for at least a week after he stops taking it (no-one told me about that). Let us know how he goes. Steve Thu, 09 Jun 2011 03:02:05 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/testicular-cancer-help/m-p/2118#M2335 stevec 2011-06-09T03:02:05Z