Best Of
Re: What a time to find out you're not covered by HBF! And can I save my nipple?
@KylieG
My treatment and followup care has been as a public patient. I do not have private health insurance.
May I suggest that you see your usual GP and ask for an urgent referral to the Breast Clinic at Fiona Stanley Hospital.
My diagnosis and treatment was complicated by the fact that I live remotely in the Kimberley, however the clinic staff at Fiona Stanley worked with me for the best possible outcome.
I wish you the very best of outcomes. Warm Kimberley wishes to you.
Annie
My treatment and followup care has been as a public patient. I do not have private health insurance.
May I suggest that you see your usual GP and ask for an urgent referral to the Breast Clinic at Fiona Stanley Hospital.
My diagnosis and treatment was complicated by the fact that I live remotely in the Kimberley, however the clinic staff at Fiona Stanley worked with me for the best possible outcome.
I wish you the very best of outcomes. Warm Kimberley wishes to you.
Annie
Annie C
5
Re: What a time to find out you're not covered by HBF! And can I save my nipple?
I am so sorry that you've had to join us here. However, welcome. I hope you find it as helpful and supportive as I have. We're good for a vent, a cry, a rant and surprisingly quite a few laughs.
I, almost inadvertently, went down the private health insurance route to treat my BC. With 20/20 hindsight I would not do this again. We are so significantly out of pocket that it's worrying. Almost everyone here has a very good, and in more than a few cases, better experience in the public health system. The biggest difference seems to be not seeing the same specialist at each appointment. So, being somewhat hard nosed, and acknowledging that I don't know you at all, I would let go of the HBF fight, put the money that you'd otherwise be paying into a special account, and use it to pay for your medication, supplies and complementary therapies that you will use along the way. You've got a long road ahead of you. You might want to conserve your energy for other battles.
Simply, there are two types of breast reconstruction. One uses implants and the other uses your own tissue (most commonly from your belly but also from your back, thighs or bum). Both can be done at the same time as your mastectomy, or later, by inserting expanders. It very much depends on whether you have radiation therapy or not, and from the description of your diagnosis I think you will. You need to talk in detail with your breast surgeon and a plastic surgeon. Your BS will refer you to a PS.
My understanding is that surgery to rebalance your boobs is not charged for in the public system but I'm not a hundred percent on that. Happy to be corrected. What will happen though is that if it's not done all at the same time you'll be on a waiting list.
You are in the best place in the world to have BC. WA has the best survival rates in Australia, and your support services are excellent.
Make sure you get access to a breastcare nurse that you like. They will be able to guide you through the minefield. Ask your BS.
Hang in there Kylie. This is the worst bit. I promise you it gets better once treatment gets under way. Big hug, K xox
@Hils
I, almost inadvertently, went down the private health insurance route to treat my BC. With 20/20 hindsight I would not do this again. We are so significantly out of pocket that it's worrying. Almost everyone here has a very good, and in more than a few cases, better experience in the public health system. The biggest difference seems to be not seeing the same specialist at each appointment. So, being somewhat hard nosed, and acknowledging that I don't know you at all, I would let go of the HBF fight, put the money that you'd otherwise be paying into a special account, and use it to pay for your medication, supplies and complementary therapies that you will use along the way. You've got a long road ahead of you. You might want to conserve your energy for other battles.
Simply, there are two types of breast reconstruction. One uses implants and the other uses your own tissue (most commonly from your belly but also from your back, thighs or bum). Both can be done at the same time as your mastectomy, or later, by inserting expanders. It very much depends on whether you have radiation therapy or not, and from the description of your diagnosis I think you will. You need to talk in detail with your breast surgeon and a plastic surgeon. Your BS will refer you to a PS.
My understanding is that surgery to rebalance your boobs is not charged for in the public system but I'm not a hundred percent on that. Happy to be corrected. What will happen though is that if it's not done all at the same time you'll be on a waiting list.
You are in the best place in the world to have BC. WA has the best survival rates in Australia, and your support services are excellent.
Make sure you get access to a breastcare nurse that you like. They will be able to guide you through the minefield. Ask your BS.
Hang in there Kylie. This is the worst bit. I promise you it gets better once treatment gets under way. Big hug, K xox
@Hils
kmakm
5
Re: What a time to find out you're not covered by HBF! And can I save my nipple?
That’s all very unsettling but two things - public can be every bit as good and if you have the energy (cancer can use up quite a lot), fight! After nine years, commonsense says HBF might have sent a reminder, overdue notice, anything! Best wishes.
Afraser
5
Re: Newly diagnosed .. Glad I've found a safe place
Hi Arpie,
Thanks for your interesting informative reply.
I'm from WA and no one advised me to have an ultrasound although I have heard that it is a better way to detect anything. But hay... it only happens to other women! Silly me , I should have listened. I tell everyone now to go have an ultrasound even if it costs you. (Young ones too). No one should have to go through this knowing it could have been found earlier.
We should all lobby for earlier screening and ultrasounds, theres too many slipping through their system as it is now.
I've been told that my cancer is lobular, so I will need hormone treatment, not sure what that is going to do to me.
Sorry to hear your husband is so sick. I had to laugh about the lemon tree, hopefully it is tough and will survive, and that your husband didn't hurt himself and had a good workout!🍋🏋️♂️
I'm worried how we will cope if Jim gets a kidney transplant as I wont be well enough to look after him. It will be his second one so I know what to exspect.😐
I havent been to my craft group since I found out and so decided to go today. It was the best thing I could have done. I'm fairly new to the group but they are all so freindly. I couldnt believe it when we got talking.....there were about 6 out of aprox 20 women that had had breast cancer in various forms! So now my craft group is like a support group!
Fingers and toes crossed for my scans on Friday. Thanks for your good wishes. ☺ xx
Thanks for your interesting informative reply.
I'm from WA and no one advised me to have an ultrasound although I have heard that it is a better way to detect anything. But hay... it only happens to other women! Silly me , I should have listened. I tell everyone now to go have an ultrasound even if it costs you. (Young ones too). No one should have to go through this knowing it could have been found earlier.
We should all lobby for earlier screening and ultrasounds, theres too many slipping through their system as it is now.
I've been told that my cancer is lobular, so I will need hormone treatment, not sure what that is going to do to me.
Sorry to hear your husband is so sick. I had to laugh about the lemon tree, hopefully it is tough and will survive, and that your husband didn't hurt himself and had a good workout!🍋🏋️♂️
I'm worried how we will cope if Jim gets a kidney transplant as I wont be well enough to look after him. It will be his second one so I know what to exspect.😐
I havent been to my craft group since I found out and so decided to go today. It was the best thing I could have done. I'm fairly new to the group but they are all so freindly. I couldnt believe it when we got talking.....there were about 6 out of aprox 20 women that had had breast cancer in various forms! So now my craft group is like a support group!
Fingers and toes crossed for my scans on Friday. Thanks for your good wishes. ☺ xx
Hils
6
Re: Here we go 🌸
Welcome to the club nobody wants to join. You already know that you have a tough journey ahead of you, but please believe that you can make it through. There will be tough times, don't hesitate to lean on the awesome people in your life. You now have the bcna team cheering for you.
Keep the faith. This too shall pass.
Hugs
Keep the faith. This too shall pass.
Hugs
Re: Back off please
What would you like to do with her @cranky_granny? I truly believe we teach people how to treat us by the way we interact with them. Can you be honest and say you don't feel up to talking about it today, and then maybe plan something you could both do together that would benefit both of you? You say that she is using you as a distraction from her problems? If that's the case, why not suggest both of you taking some time off from your problems and going to the movies/shops/dinner …. just taking some time out to get away from it all and enjoy being friends.
Personally, when I want someone to back off I'll resort to giving them "the look" and holding up my fingers in the sign of a cross and saying "back off" (a quiet growl if I know them well). Direct communication works for me
Personally, when I want someone to back off I'll resort to giving them "the look" and holding up my fingers in the sign of a cross and saying "back off" (a quiet growl if I know them well). Direct communication works for me
Mira
5
Re: Back off please
That sounds like a solid observation. I often like to keep in mind that mostly what people say is a reflection of them, not of anyone or anything else, no matter the topic. That's not to be mean or anything. It's just the reality of spending all our time in our own heads!
Nonetheless it's tough, especially in your position. If ever you could play the cancer card, now would be a good time.
You could always meet her opening question with cheery "No! Not going to talk about cancer today" and instantly hit her with a series of questions about her troubles. Generally speaking we all like to talk about ourselves! K xox
Nonetheless it's tough, especially in your position. If ever you could play the cancer card, now would be a good time.
You could always meet her opening question with cheery "No! Not going to talk about cancer today" and instantly hit her with a series of questions about her troubles. Generally speaking we all like to talk about ourselves! K xox
kmakm
8
Re: BreastScreen VIC trial results - 3D mammos have significantly higher cancer detection rate than 2D
Thank you so much, @Emma17
Well that pretty well proves it - 3D Tomosynthesis picks up more breast cancers, earlier and smaller - so there should be a better long term outcome for the patients with BC being caught earlier - and probably with less invasive surgery & followup treatment - so less devastation to patients & less expense on the tax payer!
There should be a move to replace all 2D machines with 3D - but I understand that it will not occur any time soon with BreastScreen Australia. Some radiology places have 3D - but not many. I am sure that if it improved the detection rates of cancer in testicles - it would be a given!
Surely picking up smaller cancers, earlier, will, in the long term, be a massive saving on the health system - so they can't say it is too expensive to implement?
Sadly, BreastScreen Australia continues to refuse to advise women of their breast density - even tho WA DOES advise their clients of their breast density and have a better 'pick up rate' than most states.
Ummmm ..... As for the statement below - that there is no evidence to suggest additional tests are needed for women with dense breast tissue??
HELLO??? It has been proven that ultrasounds pick up more tumours in women with dense breast tissue.
It has been proven that 3D Tomosynthesis picks up more tumours in women with dense breast tissue ......
@JJ70 and "Can Do at 40" have sent further proof and statistics to BSNSW - yet they ignore it. It is our lives at risk here - this is not a game that we want to play.
Matter of fact - I wonder if they are even GAME to give up the statistics on women who've been given "CLEAR" 2D mammogram results - who have then been diagnosed with BC within 2 years of that MG? I think not.
As you say, we have more than enough women on BCNA alone who will testify that they didn't know that having dense breast tissue was a factor in hiding tumours - let alone that the tumours, when found may be bigger & more invasive BECAUSE of not being found. Imagine if a Poll was taken on women across Australia?
Sure, it would be a relief for those women who've been given a 'false positive' to learn that they DON'T have BC ..... but it is totally DEVASTATING for those of us who HAVE been diagnosed when we now know that it could have been picked up earlier, when smaller & less invasive and before becoming terminal.
Yet this is still their statement!
I now go to Port Macquarie for 3D scans and ultrasound (currently awaiting my 2 year results) as there are no mammograms in my town & the bus (when here) only has 2D, which missed my own tumours. I was then re-scanned in Taree, who's mammogram also missed the tumours - only the ultrasound picked up 'something' that they considered worth getting a biopsy of - resulting in the discovery of my tumours, just 4 months after the 'clear' 2D mammogram.
In the last 12 months, I have been quite 'vocal' on the BreastScreen NSW facebook page regarding the need for better screening and notification of having dense breast tissue (clients advised of requiring ultrasound as well as 3D mammogram) AND the fact that screening is available for from from age 40 with no upper limit (not 50-74 as regularly advertised!)
I have been advised by them to stop posting as they believe it may scare the readers - I prefer to call it 'educating' them! However, even now, every time they put 50-74, I still reply 'Free from 40'. I recommend everyone else does the same in their states. It has been Free from 40 since Bob Hawke was Prime Minister!!
Everyone can address their concerns re Dense Breast Tissue & the incorrect age adverts to cancerscreening@health.gov.au. Maybe by bombing them with 'facts' we can get it changed!
The Victorian 3D Trial was at Maroondah BreastScreen - so assuming they get to keep the machine after the trial (who'd like to ring & find out?) - they'd be top of my list, if using BreastScreen in Vic! (This is what the trial says re BreastScreen & 3D - it is not endorsed for BreastScreen - only available at other radiology/breast centres.)
Scary, isn't it? Even some of your followup scans won't be reliable if done on a 2D machine.
Make sure you demand a 3D/Tomosynthesis mammogram & still have the ultrasound!
Well that pretty well proves it - 3D Tomosynthesis picks up more breast cancers, earlier and smaller - so there should be a better long term outcome for the patients with BC being caught earlier - and probably with less invasive surgery & followup treatment - so less devastation to patients & less expense on the tax payer!
There should be a move to replace all 2D machines with 3D - but I understand that it will not occur any time soon with BreastScreen Australia. Some radiology places have 3D - but not many. I am sure that if it improved the detection rates of cancer in testicles - it would be a given!
Surely picking up smaller cancers, earlier, will, in the long term, be a massive saving on the health system - so they can't say it is too expensive to implement?
Sadly, BreastScreen Australia continues to refuse to advise women of their breast density - even tho WA DOES advise their clients of their breast density and have a better 'pick up rate' than most states.
Ummmm ..... As for the statement below - that there is no evidence to suggest additional tests are needed for women with dense breast tissue??
HELLO??? It has been proven that ultrasounds pick up more tumours in women with dense breast tissue.
It has been proven that 3D Tomosynthesis picks up more tumours in women with dense breast tissue ......
@JJ70 and "Can Do at 40" have sent further proof and statistics to BSNSW - yet they ignore it. It is our lives at risk here - this is not a game that we want to play.
Matter of fact - I wonder if they are even GAME to give up the statistics on women who've been given "CLEAR" 2D mammogram results - who have then been diagnosed with BC within 2 years of that MG? I think not.
As you say, we have more than enough women on BCNA alone who will testify that they didn't know that having dense breast tissue was a factor in hiding tumours - let alone that the tumours, when found may be bigger & more invasive BECAUSE of not being found. Imagine if a Poll was taken on women across Australia?
Sure, it would be a relief for those women who've been given a 'false positive' to learn that they DON'T have BC ..... but it is totally DEVASTATING for those of us who HAVE been diagnosed when we now know that it could have been picked up earlier, when smaller & less invasive and before becoming terminal.
Yet this is still their statement!
I now go to Port Macquarie for 3D scans and ultrasound (currently awaiting my 2 year results) as there are no mammograms in my town & the bus (when here) only has 2D, which missed my own tumours. I was then re-scanned in Taree, who's mammogram also missed the tumours - only the ultrasound picked up 'something' that they considered worth getting a biopsy of - resulting in the discovery of my tumours, just 4 months after the 'clear' 2D mammogram.
In the last 12 months, I have been quite 'vocal' on the BreastScreen NSW facebook page regarding the need for better screening and notification of having dense breast tissue (clients advised of requiring ultrasound as well as 3D mammogram) AND the fact that screening is available for from from age 40 with no upper limit (not 50-74 as regularly advertised!)
I have been advised by them to stop posting as they believe it may scare the readers - I prefer to call it 'educating' them! However, even now, every time they put 50-74, I still reply 'Free from 40'. I recommend everyone else does the same in their states. It has been Free from 40 since Bob Hawke was Prime Minister!!
Everyone can address their concerns re Dense Breast Tissue & the incorrect age adverts to cancerscreening@health.gov.au. Maybe by bombing them with 'facts' we can get it changed!
The Victorian 3D Trial was at Maroondah BreastScreen - so assuming they get to keep the machine after the trial (who'd like to ring & find out?) - they'd be top of my list, if using BreastScreen in Vic! (This is what the trial says re BreastScreen & 3D - it is not endorsed for BreastScreen - only available at other radiology/breast centres.)
Scary, isn't it? Even some of your followup scans won't be reliable if done on a 2D machine.
Make sure you demand a 3D/Tomosynthesis mammogram & still have the ultrasound!arpie
5
Re: Feeling overwhelmed and anxious
Welcome to scanxiety! It can be tough. Once you know something can go wrong, it’s easy to start thinking everything will go wrong. But if you can, remember that living in terror of what might be is no way to live. Living with what is can be hard but at least it’s real. Dr Google fuels fear of what might be. Talk to your medical team, they too work with what’s real. And don’t forget to celebrate the things that turn out well. Best wishes.
Afraser
5
Re: Here we go 🌸
Hi @Jennie_Lou,
Welcome lovely. Definitely sux to be here but you'll find a wealth of warmth and knowledge on the forum.
The start is just awful. So many unknowns running around in your head and the endless waiting for results and a plan. I found it in the nodes first so knew it had spread already as well. I am sure everyone here remembers that ice cold fear and cloudy fog at the beginning.
Ask a million questions of your team and if you don't understand something ask them again. It's very easy to be swept along feeling like you have no control at the start.
Isn't it odd how a lot of us end up calming everyone else down? I found this too which is why I stopped taking anyone to appointments apart from the breast care nurse, that way I didn't have to deal with their emotions as well. Everyone handles things differently and you just need to do whatever is best for you to get through. There is no right or wrong way to do it.
It is a long and windy roller coaster, but once a plan is in place you are so busy with appointments and treatment that the time litterally flies.
All the best lovely. We are here if you need us, we get it.
xoxoxoxoxo
Welcome lovely. Definitely sux to be here but you'll find a wealth of warmth and knowledge on the forum.
The start is just awful. So many unknowns running around in your head and the endless waiting for results and a plan. I found it in the nodes first so knew it had spread already as well. I am sure everyone here remembers that ice cold fear and cloudy fog at the beginning.
Ask a million questions of your team and if you don't understand something ask them again. It's very easy to be swept along feeling like you have no control at the start.
Isn't it odd how a lot of us end up calming everyone else down? I found this too which is why I stopped taking anyone to appointments apart from the breast care nurse, that way I didn't have to deal with their emotions as well. Everyone handles things differently and you just need to do whatever is best for you to get through. There is no right or wrong way to do it.
It is a long and windy roller coaster, but once a plan is in place you are so busy with appointments and treatment that the time litterally flies.
All the best lovely. We are here if you need us, we get it.
xoxoxoxoxo
kezmusc
4