Australian Sisters
Comments
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Jenn, sounds like the staff are letting that centre down. Why did your onc want you to get weekly doses? I wasn't aware that Herceptin caused any damage to lungs, only the potential for the heart. It is good to know that the three weekly loading doesn't affect you any different to the weekly one though.
How's everyone else doing? Today's a beautiful morning here, lovely sunshine after a foggy start. I've been out in the veggie garden clearing up the old tomato plants and getting it ready for the next planting at the end of winter.
Trish
xoxo
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Hi Trish!
Actually Herceptin can cause. pulmonary problems - they are listed in the possible side effects. But my onc thought it was more likely that my pneumonitis was from the Taxol. She gave us two choices - either stop BOTH the Taxol and the Herceptin. or take a punt and just stop the Taxol and keep the Hercepttin going weekly for a few weeks in case it was that. You can see why I am so angry that the pharmacy stuffed up and used the cancelled script for 3 weekly rather than the new one my onc put through that kept me at weekly...
The pneumonitis, although improved, has not gone away completely yet :-/
Jenn0 -
Well there you go, I was never aware of the potential for lung problems, you learn something every day.
Kate, have just seen there have been bad storms in WA, are you ok?
Well my DH has been out every night this week, his show, Iolanthe started this week. Now he's outside in the dramatically dropping temperature with his beloved telescope taking pictures of the heavens lol Well I guess I get to watch what I want on tv again :-)
Trish
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That would be a neat thing to do Trisha- Anne, i would love a telecope and do that. But i think i would wait til its warmer, darn cold here. As for tv when we shift, we will get sky multi room so i do not have to sit there and watch the dreaded WWE wrestling, that he likes to watch. well actually i don't mind the wrestling, its all the BS talk of them telling everybody how wonderful they are before hand, that is boring. but when we get multi room, i can watch something else. like Murder she wrote, i like watching old jessica Fletcher solving murders, nosy old bag. lol. i like murder mystries and csi programme, and my fav NCIS. sounds like i am a tv adict, not really i just like those kind of programes. Hope everybody is ok as can be expected, i have my 2nd lot of pictures tomorrow for these mamogram doctors and see what is causing the disturbance in that boob. My GP said, there were alot of calcifications there and a signifcant change to where that one was clear last time. the other one is clear this time, so if its it won't be a recurrance, but more like a new primary, i don't know what is the better one, same one or a new one, neither would do. BUT.
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Midnight - I will be thinking of you tomorrow...
I'm just ready to leave for the airport. I am so scared. My daughter is having to drive me because hubby is staying home with our middle daughter because she is soooo ill this weekend. We already took her to the doctor on Saturday and got antibiotics for a throat infection but we really think this is the flu :-( I have been staying completely away from her because with my lungs still not good I can't afford to get the flu. I feel so bad that I can't look after her and give her cuddles!
Jenn0 -
Safe trip Jenn.
Well, I just finished a marathon of watching the rest of the second series of Downton Abbey - 4 episodes - I'm now all emotional - what a roller coaster ride. Nothing else to do on a wet windy day. Can't figure out why I've been watching it on Sunday nights when I bought the DVD's.
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I got here! I was fine on the plane. In fact I got that old feeling of "thrill" when it took off :-)
Checked into my cute funky hotel and then went and had tapas and a sangria for lunch followed by a walk along the boardwalk of St Kilda Beach. Beautiful early winter day here - blue sky and winter sunshine :-)
Being picked up by friends in an hour to go and have an early dinner. Taking advantage of the free hotel wifi on my iPad in the meantime.
Sounds like you are having a relaxing (if emotional) day Susie!
Jenn0 -
Jenn - glad you got there ok - was thinking of you :-)
Midnight - I'll be thinking of you tomorrow - hope all goes well. I had to laugh at your wanting multi room - we only get pay tv (Austar) as we live about 45 minutes south of Canberra and in a "black hole" cannot get free to air tv. Luckily my DH and like to watch the same things, most of the time lol and never the wrestling! In fact the only sport (not that I think wrestling is a sport) we watch is the tennis.
It's been pretty cold here today too - although no rain. We've been watching dvds as even with the 50+ channels on Austar we can't seem to find anything to watch lol Just watched 2012 for about the fourth time - the special effects in that movie just blow me away.
Hope everyone else is warm and well today
Trish
xoxo
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It's cold up here - windy and rainy
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I've just spoken with Kate. I was a bit worried about her with the storms over in WA - and the fact she hadn't been on here for a little while.
She's fine - has weathered the storm without too much damage, but has had no power since yesterday and they don't know when it will come back on. She'll be back on here once she gets power again, but they are saying it could be back on soon - or it could take a week and there's more bad weather coming in again tomorrow.
Trishxox
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Well today it's the QB holiday (was before midnight anyway) and that's the day three years ago I found something that made me think I had cancer. I didn't get the diagnosis till 1st July and the BMX on 31st July, but this day is the one that makes my stomach turn as I knew it was bad. So the news of KAK (Australian celebrity) was rather upsetting as it bought it all back. All the silly things they are saying... She's strong, she'll be fine, her husband beat cancer etc... Well she's not her husband and she won't be fine, at least not for a while. Her world is turned upside down and she's got some heavy duty treatments to face and a lifetime of worry.
She spoke of how she didn't think she'd get it as she's always looked after herself and there's no history in her family. So many of us say the same thing. I'm hoping she'll publicise that so others will realise we are all vulnerable just because we're female. In fact I'm hoping she'll have some influence in many areas where not enough is being done, like what NOT to say when someone is diagnosed with cancer. That we're not to blame and don't have to think positive unless we decide to.
On 31st July I'll celebrate 3 years cancer free. Here's hoping all of you who are still in treatment get past all the hurdles and gain some peace of mind. I don't know if I'll leave the forum, maybe I need to move on. Then I'll worry about everyone. It's been a sad day all round for me, but you ladies are doing the rough end of the journey so I should be thankful and I'm sure I will be as soon as the fog clears.
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You know what I've hated about all the media coverage about Kerriann? They are all talking like she's dead already! The news channels rolled out what almost looked like her pre-prepared eulogies!
I can't imagine how hard that would have been for her to see all day...
She has said "pea sized lump" but that's what everyone thought about mine too - it ended up being 7 x 6 x 20mm and I have since learned that both mammo and ultrasound are notorious for underestimating the size of tumours. What was everyone elses experience - was your lump underestimated before surgery?
I had to chuckle a little after I saw her age "change" a bit in the media stories...
Jenn0 -
I get really annoyed when I see a celebrity's illness published like that - she's not the only one who has bc - how many other women around the world were diagnosed last week. What about all of the unamed ones like us. Apparently she is delaying surgery for after the DWS final - how stupid is that. Also, not having children would have put her at a higher risk.
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I was saddened to hear about Kerriann too. I think it's good that someone who has a public profile can speak up about the disease - they get it too and at least more people will know about it if these women speak up for the rest of us that the media aren't intersted in.
My IDC lump was pretty much spot on to what they found on the u/s, although interstingly the second cancer (ILC) was in a completely different position - which completely baffled the bs, radiologist and pathologist. I still don't have a satisfactory answer to that one - the u/s showed it at 2 o'clock and the path report stated it was at 5 o'clock. The bs and I think that there must have been a third one there and the other one was somehow missed, but that doesn't really make any sense either as the breast tissue is usually completely tested. I know it was at 2 o'clock as that's where they took the biopsy from and came back as ILC. The IDC which was at 3 o'clock was in the same place as the u/s. Very weird.
Sue - delaying sugery by 5 days isn't anything. We all know that cancer will not spread that quickly. My own surgery was almost 4 weeks post dx. It's not emergency surgery. And yes - not having children does put her at higher risk - but remember that might not have been her own choice. I don't have children - and that was not through choice, I tried very hard for many years to have children, but sadly it was not to be and a hysterectomy at 28 put a complete stop to all that. We need to not judge others.
Trish
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I'm not criticisng her for not having children, I do know she had a miscarriage at one stage and she regrets not having had children - just pointing out that it would have put her at a higher risk.
I do get cranky when this sort of thing is in the media - who cared when my sweet rads nurse died from bc earlier this year.
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Morning. I hope everyone had a nice long weekend, I went shopping with my mum and daughter; I kept having to sit down and as the display chairs were often the only ones available I kept the sales people busy!
Sad to hear about KAK. I just hope she does raise awareness, but I don't understand if she was the face of LGFG, was she regularly checked and something missed? Our tv channel said we are entitled to free mammos from 40?????
I am so, so sick of being told 'everyone gets breastcancer these days, so you will be fine'. I hope KAK's breastcancer doesn't get treated as just another simple blip in her seemingly magical life, I really hope she puts out there how difficult and scarey it all is and that positive outcomes are not guaranteed. x
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I did not realise that not having kids put you in a higher risk bracket, i learn so much on here. I do not have any either, maybe that explains why they put me in the high risk bracket, my sisters have both clear mamograms, but i didnt, they have kids too, i didn't. and great grandma lost her life to it at 52, many years ago, they did not have the medical facilties in those days. like mamos to begin with, you were more a less left to it. my granpa, her son, she only had the one, great grandpa had a tree fall on him at aged 30 and Great Gran brought up grandpa as a solo parent. BC does not have favourits does it, everyone is vunrable, even guys. not so common, still they are not spared either.
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Well KAK says "in my perfect world I will be over this in six weeks"....
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Kylie, I can relate to having to sit down all the time when shopping and getting over chemo. I didn't go whenever I could get out of it. But I'd have a girlfriend come down to see me from time to time and if I was up to it, we'd hit the shops for a short period. I usually sat for more time that actual shopping.
I've been having mammograms from the age of 40 and they were free. I didn't know the history from my mother's side (she passed away when I was only 18 and her family are in Europe and we can't find any of them she was a "refugee" after WWII) so I just turned up at Breast Screen and they started me off. That was 15 years ago.
Trish
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Hi Midnight - yes that's one of the big risk factors. I heard an interview on the radio a couple of months ago and apparently the women who have the highest incidence of bc in the world are nuns!! They think it's because they don't have children, but have taken it further and even with women who do have children but only have one or two are still at a relatively high risk. They (and I can't remember who "they" were - but a couple of professors of something) said that women in the past were almost continuously pregnant and that bc was not prevalent. They have recommended to the Vatican that nuns (and all other women) stay on the pill almost non stop - only having one or two periods per year, which is what the female body was designed to do. Not sure how accurate all this is - but it does make some sense.
Trish
xoxo
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Hi Midnight - yes that's one of the big risk factors. I heard an interview on the radio a couple of months ago and apparently the women who have the highest incidence of bc in the world are nuns!! They think it's because they don't have children, but have taken it further and even with women who do have children but only have one or two are still at a relatively high risk. They (and I can't remember who "they" were - but a couple of professors of something) said that women in the past were almost continuously pregnant and that bc was not prevalent. They have recommended to the Vatican that nuns (and all other women) stay on the pill almost non stop - only having one or two periods per year, which is what the female body was designed to do. Not sure how accurate all this is - but it does make some sense.
Trish
xoxo
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Hi Midnight - yes that's one of the big risk factors. I heard an interview on the radio a couple of months ago and apparently the women who have the highest incidence of bc in the world are nuns!! They think it's because they don't have children, but have taken it further and even with women who do have children but only have one or two are still at a relatively high risk. They (and I can't remember who "they" were - but a couple of professors of something) said that women in the past were almost continuously pregnant and that bc was not prevalent. They have recommended to the Vatican that nuns (and all other women) stay on the pill almost non stop - only having one or two periods per year, which is what the female body was designed to do. Not sure how accurate all this is - but it does make some sense.
Trish
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Only edited to explain that I removed the 2 above posts as my computer suddenly went mad and the 2 extra posts were copies of this post lol
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Trish - I heard that about nuns many many years ago - funny it's still a topic to be discussed
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I was on the pill for about 9 years and had my family late which is also a risk factor.
Jenn, yes I also was shocked that the media showed footage that looked like a eulogy. I think it's important for the public to know about celebrities' cancer or else they think it's a rare event. They also need to see that it affects different people in different ways, both in the medical outcome and the way they handle the news and treatments.
We're all different and if there was more acceptance of those differences we'd all be a lot more content.
I'm feeling much better today.
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Hi all. I'm at my sister in laws place as she has power at the moment. We came down for a shower, as we haven't had one since Sunday. We still don't have power and this morning no water in the taps either. We can use our gas cooktop to boil water at least. They say the same cyclonic conditions are to be expected again tonight. Sunday was very scary and it lasted for many hours. I have to say I'm quite over this now. It's just not fun anymore. I am so lost without my creature comforts esp. tv and internet.
Yes, I'm sorry to hear about KAK too. I heard she just needs lump and radiation. That was what I was told I was having, the the HER2+ raised its head and changed everything for me, so I guess she's jsut like the rest of us, things happen that can change everything.
Sorry, but I'm going to cut this short as power is flickering here so I'll shoot this off while I can.
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Celebs are damned if they do and damned if they don't IMO. I'm sure they would rather go through all the trauma of BC diagnosis and treatment privately.I think they are often upfront to stop the rumours but it still doesn't help.
I remember Kylie hiding in the back of her parent's car with coats over her..I also remember ppl scoffing that she insisted on her hospital room being painted pink before she would move in. Can you imagine demanding that at THAT time!
I was in hosp. having a prophylactic mast. when ONJ was diagnosed and read the stuff reporters were asking her. I couldn't imagine how I'd react...I just wanted to hide and I'm not famous.
One friend dx a bit after me had 6 children...another 7 (Catholic primary school...lol) I'm convinced there is no rhyme or reason and hate it when ppl who live normal lifestyles search for reasons as to why they may have caused their BC. I wanted my op asap. My surgeon asked if I wanted a 2nd opinion and time to get my head around it all as there was no hurry.
I hope Kerryanne does well. Whilst writing this post I received a call from a friend who has a lump...mammo and ultrasound tomorrow. It just doesn't end!!!!
jezza
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i just got back from 2nd mamo, they took six more pictures, went in x3, whilr they checked the pictures as they could not quite decide if it was the tissue calcified as they say it can change from time to other, but i got the hint that they were not too stressed about it, but i won't out find out for a few days. so none of the wiser really, they are been very thorough which is good. they mentioned something about been all squashed out. i guess that is ok and i am probably going to be ok and not the dreaded news i was hoping not to hear.
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Didn't know about Kerri-Ann. Where have I been?
The issue with nuns and women without children is prolonged exposure to oestrogen as far as I know. The normal duration of lactation prior to industrialisation was (and is in 3rd world countries) 3- 4 years. During lactation oestrogen levels are low. And prior to modern birth control women would have been lactating for many years.
On the other hand nuns have a low incidence of cervical cancer! No exposure to the HP virus.
I don't have children either. Never really wanted to and wasn't in the position to. Funnily enough I am a child health nurse. I had late menopause and early start of periods too - lots of oestrogen exposure. Doesn't explain oestrogen neg. tumours though.
I still can't believe I didn't have regular screening for BC. I simply forgot. It wasn't on my radar. I had an auto-immune condition which I was focussed on. I had no lump despite a 2cm tumour very near the nipple. I thought the nipple inversion I was seeing was due to ageing! How stupid! But I've read of lots of others on BCO who have done similar.
Hope you get good news Midnight
How is your trip to Melbourne gong Jen?
Hope everyone else is OK
Gerri
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I had early period (11) and never had kids and have smoked most of my life, so I was doomed I think lol. Just very very lucky that my sister had told me about the free mammos for 40 and over so I went along when I was 42. Only did it then cause Id been meaning to do one since I was 40 and kept forgetting and then one day I drove past BreastScreen Qld's mobile van a minute from work and they had their phone number on it so I called for an appointment.
I abhore the advertising we get on the tv that says its only free for over 50's. Its a lethal cost cutting measure imo and the govt should be made to reimburse all those who wait till they are 50 only to find themselves with a more advanced BC. They cant give womens health, breasts or life back to them, but maybe being forced to pay money out of their budget to those they have willfully exposed to an advanced cancer would make them rethink their cost cutting measures.
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Lyndal I just love your directness lol you are a breath of fresh air
Trish
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