Australian Sisters
Comments
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Jenn, I agree that it's frustrating to keep reading American stuff that doesn't apply to us, however, there is one American thing I'm hoping will come to Australia as I'd be first in the queue. But it will probably too late for me as I'll be too old.
From their website...
After a mastectomy, the last thing you want is yet another major surgery. With our BRAVA + AFT (autologous fat transfer) procedure you will not be cut open again. As compared to the traditional methods, this involves no incisions, no new scars, no foreign objects and it recreates a natural feeling breast with the benefit of liposuction.
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I see someone has just started a thread for Kiwi sisters on the "New to Breast Cancer" section.
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Maybe we should take a poll and see whether everyone thinks we should leave this thread where it is or move it to another page.
What does everyone think?
Trish
xoxo
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Does a Kiwi thread mean I have to leave? I actually like it here.
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Can we ask the moderators to put this topic somewhere else... as it is about being aussie not about chemo? If this seems like a good idea how do you ask such a thing.. anyone?
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My main concern would be that new women looking for Australian or NZ treatment options be able to find it. Others are used to finding their way around.
Alyson, you could be on both threads. I mentioned it as the OP had no replies when I last looked. Or ask the OP to come and join us.
It seems to me that instead of having a whole section for Canadians in "Support & Community Connections", they could make the section for regional support groups instead so each country or region can start their own thread. That is, countries other than America who seem to already be well represented in every section. UK and Europe also have different systems as well as Asian countries.
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Hi Joy I did reply to it and suggested it go in the supprt and community sections.
Its great to be able to talk to the Aussie girls because we have much the same treatment, interestingly so do the Canandians and Brits. What I really like we can joke ab out things and people understand though I must say I have lots of fun on some other threads and have made great friends all round the world.
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Agreed Alyson, I love the multicultural aspect. I've lived and travelled in several continents, but feel comfortable reading about similar systems and insurance issues that I can relate to. I confess I know little about NZ health systems though I've had Kiwi friends. I know more about the English health system which is similar. I can't wait to visit NZ though.
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Yes, I like the idea of us having an Australasian section like the Canadian section...
Just got home. Pneumonitis confirmed by the CT so now have prednisone.
Kicking myself that I didn't open and read the report like I usually do before I took it back over because they made me an appt with my onc for tomorrow morning to talk about "what's next" and they kept the scans and report because my onc wants to "look at the scans herself". Shoot, now I'm wondering if they saw something else apart from the pneumonitis in my lungs.
I've only got one last weekly Taxol/Herceptin due this Friday. The nurse practitioner told me before I went and got the scan done that if it was pneumonitis my onc would probably cancel the last Taxol. So why do I suddenly have to see her in person??? Stupid cancer!!!!!
Jenn0 -
Oh Kylie, how exciting to be up to your last one!!!! I really hope it's mild for you.
After a lot of deep thought and consideration, I have decided to at least try tamoxifan (sp?). I really am not trying to talk myself into having side effects, but given the long and yucky list of what most women experience (to varying degrees of course) I would be very very surprised if I didn't fall into the category of those who suffer horribly, especially from hot flashes. That is my biggest concern. But... having said that, I am quite willing to be surprised and not have them at all, or not too badly. At least I can always stop if it is too bad, but I will never know unless I try hey?
My RO was trying to encourage me today saying that it mightn't be too bad, and I couldn't resist saying to him, well, how would you feel if you had all your testosterone removed and had all the side effects associated with that? Would you believe he actually squirmed just noticably and he didn't say anything. Always good to put things into proper perspective I say. Anyway it feels good to have made a decision at long last regarding this.
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lol Kate. I love it when we make them uncomfortable. Youve probably done yourself and all his other patients a good turn by making him think about it, even for a second. I often wonder how they would feel if the first stage in treatment of prostrate cancer was to lop off the offending member
Far as where our thread is situated. I just want it so that any aussie or kiwi that comes along can find us without any hassle. We have a broad range of stages here, we've pretty much done it all between us and we're all nice genuine people. So while we get the support and advice we need, we can also pass it on.
Far as reconstruction is concerned, Im holding out for . http://www.corrs.com.au/thinking/updates/a-delicate-balancing-act/ Saw something on the news a year or two ago about it and it sounds wonderful if it passes human trials. I like the idea of my breast regrowing which I think would help to avoid the pain ladies go through when getting their fills like they do at present. Guess its a wait and see on that one.
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Joy - I am a software engineer but not into gadgets - my mobile doesn't even take pics and I never turn it on
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Kate, unfortunately men with prostate cancer do have to have anti-androgen drugs. And most men who live beyond 70 will have it to some extent, so that RO has something to look forward to, no wonder he squirmed.
While I was waiting to go in to the radiation room one day, a man was telling me how he sympathised with his wife and all menopausal women now as he was having uncomfortable hot flushes due to his drugs. He looked so sheepish as he said it, like he'd been rather dismissive before.
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I know Susie, that's why I mentioned it. You aren't the only IT person who doesn't like complicated phones so you have good company.
If anyone wants to buy me a smartphone and pay the fees I'd love one!
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Lyndal, that reconstruction technique looks fantastic, I hopes it passes all the trials and replaces those 12 hour microsurgery reconstructions. According to their site it's done immediately after mastectomy to preserve the skin. So for those of us with old operations, it's too late. Do look at the link I posted above though. That can be done any time.
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It sounds pretty good Joy, I can think of a few places they could harvest fat cells.... Lyndal thinks about finally looking half way good in a bikini again haha.
Lucky no decisions need to be made any time soon cause neither one appear to be available in australia as yet.
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Trish if you PM the moderators here I'm sure they would be very helpful and maybe have some suggestions. I haven't seen the NZ thread but I think invite them to join here...or an Australasian section sounds good.
The more the merrier...it makes for a more vibrant thread. Its certainly been busy lately. I am way way past treatment stage (didn't have chemo) but still like to read how everyone is doing.
jezza
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Good for you Kate for making him think. I don't think that our doctors understand half of what we have to go through. Of course there are the exceptions, I have an incredible GP, he's caring and listens to you, and that's unusual. I know that our specialists are busy people, but I don't think they do enough research on treatments. Geez, they only need to spend a bit of time on here to realise that a lot of what they dismiss causes real concern to a lot of people.
Kate - Tamoxifen? You are post menopausal, why that? An AI is more normal for us post menopausal girls.
I will talk to the mods and see what they think we should do with our thread. I think that sometimes being in the chemo section has been good - as a lot of women look there to see what they are up against. But this thread isn't all about chemo - it's the whole experience and the support we give one another.
Have a great day everyone!
Trishxoxo
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Just leaving for my MO meeting to discuss the results of my chest CT scan yesterday and "what happens next". I know it confirmed pneumonitis but am a bit worried that it showed "something else" based on the nurse practitioner's choice of words yesterday. Cross your fingers that he just chose the wrong words...
Let you all know at about lunchtime how it goes.
Jenn0 -
Hi Ladies, I have a confession to make! I just posted on the new kiwi thread that I lurk here- hope you don't mind! I did appreciate the help some of you gave me when I was trying to find a better deal as far as bras & prostheses go....
Anyway, its nice to read your thread because you're all so supportive of each other & its a good active thread.
I didn't notice it was a chemo thread until I had been visiting for a while.
So, thanks for all your help, even if you didn't realise you were giving it to me in particular! Hope you all have a good day
PS my hubby is working on the Gold Coast at the mo & I'm going to pop over to visit next weekend- how about you put on some nice warm sunny weather for me
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Hoping you get good news Jenn
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Jenn - thinking of you xoxo
Kt - welcome and of course we don't mind, the more the better, we only have a small amount of water seperating us from you :-)
I have asked the Mods to move our thread. I suggested that a new page be created on the Forum for Caregivers, Family, Friends and Supporters and call it Australian and New Zealand Group - or something similar. Then we can have this thread and the Kiwi thread on there and anything else that comes up.
Hope that doesn't bury our thread, but it's fairly active so will be visible I hope.
Trishxoxo
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Where's the kiwi thread?
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Sue it's in the forum: For Caregivers, Family, Friends and Supporters and is called "Kiwi ladies who need encouragement, but all welcome"
Trish
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Trisha, I too thought that as I am 4 years post menapausal that it would be an AI, but they keep saying Tamoxifin. But of course I will clarify that with my MO when I see him in 3 weeks time.
Jenn, I do hope you get good news re your catscan today and that it just a little lung infection and easily treated. Will be waiting for your post later....
Last radiation today. Under my arm the skin feels like sandpaper. No weeping or anything but it is a strange senstation. I was told that effects could continue to worsen for a week or so to come. Really it's pretty mild but its just a bit uncomfortable.
PS. I love our little group here. When I was at my weekend retreat I was telling everyone about how this site and your correct medical advice, re Herceptin (I was HER2+ and it was only after you guys alerted me to it that I needed to ask about it, and my BS went back through my history and bingo! it changed everything for me - shudder to think of the consequences if I hadn't have bought it to his attention) so I am incredibly grateful to you girls for all your sound knowledge and support. You could all be livesavers without even realising it. xxxxxx
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Hey ladies, why i started a kiwi thread is to bring kiwis together, but that does not mean everybody has to stop posting where ever they like to. its just helping kiwis to open up to other kiwis as well. ALL WELCOME means ALL WELCOME. sorry if you felt like i was dividing us up, not the case, just another network for kiwi to go to as well. but i would like to see one for us all combind. EVERYBODY WELCOME THE MORE THE MERRIER.
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Jenn I sure hope yu get good news........waiting on tender hooks. Good luck.
Kate ..... Yahoo! Last one! That's got to make you feel good! Well done you!
Trish this thread will always be in my favourites list so no way will I loose it. Because it is a very active thread it will always be visible to others as well.
Midnight Aly started posting here as she is a personal friend of mine and I speak to her on loads of other threads as well. Even though it says Aussies at the top we really don't discriminate and anyone who wants to join in is always welcome. Hope your NZ thread does well for you.
Well I had the INR done again yesterday and I am under the level again at 1.6......grrrrr. I am so over this shit! Thank goodness I see the doc on Thursday and believe me, if that damn little clot is not gone I shall be refusing to continue with the coumadin and ask for clexane. I'd much rather have to stick myself everyday in the belly and know thaat I'm covered that have the uncertainty of these pills that my system just does not like and will not stabilise on. Again.....grrrrrr......can you tell I'm not a happy camper?........lol
Love n hugs girls. Chrissy
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ok yea, i just don't want to offend anybody and yea i go into all the forums and talk and love talking to you and all the ausy girls, i only started the kiwi one to help them to open up, just a extra network really. i will come in and into your forum and yak to you ladies too i love it. I rang the breast cancer nurse yesterday, but had no reply, so still no mamo results. i am a big chicken when it comes to finding out results for me. i will wait a couple of days and ring another person at the hospital.
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chrissy am glad you had your last INR done. yea you must be so over it all. i am only a beginner and hope i can stay where i am now hence knowing abit more about mamo results. But take care and all the best. 0
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Darn Chrissy! I agree that it seems silly to keep going on something that's not working. Time to try something else!
My news: :-)
My onc just wanted to keep the films overnight to look at because getting pneumonitis on Taxol is so rare! I have no met disease visible anywhere - and the report listed everything right down to nodes in all the different areas.
My onc pulled me off Taxol so I will not get the last 1/12th dose this Friday. She said that because they don't really know if the pneumonitis was from the Taxol or Herceptin we could choose to also stop the herceptin which would be erring on the side of caution however she was open to discussion if I felt strongly about it - which of course I did :-)
So we are going the more "gung ho" route and choosing to keep the Herceptin going except instead of upping to the 3 weekly loading dose this Friday as planned we are continuing on weekly doses for a couple of weeks then reassessing in mid June.
I really feel it's the combination of everthing with the really bad cold I had for 3 weeks that brought this on. Certainly hope it doesn't prove to be the Herceptin...
I am now officially DONE with chemo!!!!!
Jenn0
