June 2011
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
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June 2011
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
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May 2011
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
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May 2011
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
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May 2011
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
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November 2010
Hi squirt,
Thanks for sharing your story.
When I was 8 I developed ITP which is a blood disorder that affects platlet levels. For about 2 weeks they thought I had luekemia. Twently years later and my mum still says it was the hardest 2 weeks of her life, more than other events such as my dad dying of cancer, and me almost doing the same thing. I've got 2 kids and I can't imagine going through what your going through - its my biggest fear actually.
Both my wife and I developed cancer at the age of 30 (within a year of each other, for some reason) and we both found age, or life-stage relevant support was very hard to come across. But from what I've seen we've got better support networks than kids do. I havne't been on this website much for a while, but when it launched it was intended to be a place where everyone could come to 'connect', including patients, survivors, family and anyone else that feels the need to talk about personal issues associated with cancer.
So don't hold back and I hope you and your daughter are doing ok.
Steve
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July 2010
Go for it Nikki, focus on your kid and your future with him. You once told me that cancer will always be part of you, but you don't need constant reminders that that is the case.
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January 2010
Hey Emily,
I can completely relate to your story. My wife and I were both diagnosed with cancer within 2 years of each other around the age of 30 (well after we'd met). We were deserted by all our friends too (and I mean ALL too).
Now she's 4 years out and I'm 2 years out and it took a while, but we're back in contact with most of them, but with some of them its not the same. They all have the same story 'we freaked out and didn't know what to do'. Its funny to me now to see how some of them are more concerned with how it affected them than us (sadly both our families continue to be the worst offenders there).
All I can say is that time heals the wounds. I see your out of treatment now and looking to get on with life. I'm sure you'll meet heaps of great people in the next few years. It probably won't happen exactly when you want it to, but before you know it will happen.
Steve
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January 2010
I just worked out who I'd chatted to who had Ewings Sarcoma - Lora Lee (http://www.cancerconnections.com.au/users/loraleeb)... when she was 16 (she's now 38).
She doesn't use this site much any more, but you could send her an email or PM through her profile (she's also on Twitter). She's a bit busy at the moment going through chemo again (for breast cancer) and publishing her second book, but she's a great person and I'm sure she'd love to hear from you.
Her book is really good by the way. Its a bit hard to get in Australia, we found the easiest was is through amazon.uk.
Cheers
Steve
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November 2009
Hey,
Reading your post gave me a few flashbacks and now that its been a few years I can even chuckle about some of them.
I'm Amanda's husband and we had a lot of similar experiences to you. I'll never forget the text message I received from my dad about half an hour before Amanda had to go in for radioactive iodine treatment. It read 'Norton AV'.
Amanda had to be away from me and our 6 month old for about 6 weeks for the treatment (because it would make her radioactive), and as you can imagine it was a very stressful day. It didn't help that no-one wanted to be there for it.
Anyway, Dad was reminding me he needed my anitvirus disc (and not for the first time that day). He didn't need it to load the program on his computer - he'd already done that. He wanted to make a back-up copy 'just incase'.
Apparently all he heard when I told him about what was happening was that I had the day off and could drop in with the disc.
I never gave it to him.
Don't feel bad for being stressed. Sometimes you need to let people know when they're being more of a hindrance than a help. Even if its just to make yoursefl feel better.
Steve
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