testicular cancer help

[albert]

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.

[stevec]

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

[albert]

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!

[Sailor]

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

[albert]

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.

[stevec]

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

[Sailor]

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

[Sailor]

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

[albert]

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

[stevec]

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