Australian Sisters
Comments
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Hi Pirategirl - welcome! It's so nice to hear when someone has finished chemo and you now have hair too Yay! :-) You are triple positive like me. I'm interested in how some of us have tamoxifen - I'll be starting on Arimadex (sp?).
Another thing that interests me - and you Aussie girls might be able to shed some light on this - my BS told me that while they assign a grade to the tumour, they no longer like to stage them. I notice most of you have a stage - were you given this on your path report? I don't have any reference to stage on my path report - just the grade.
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Trisha-Anne - stage is determined by the size and lymph node involvement. You would be stage IIA based on what this site says:
http://www.breastcancer.org/symptoms/diagnosis/staging.jsp
Also, Arimidex or Tamoxifen is usually decided by pre or post menopause although I have seen lots of pre menopause women getting Arimidex. One friend who was put into menopause by chemo is taking Arimidex. I'm on Arimidex but was 4 years post menopause at diagnosis.
Sue
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Hi Ladies
Just back from my getting my 3 weekly Herceptin drip. Thanks for the welcome ChrissyB.
Sue I had my surgery at the Wesley and chemo, rads etc at the PA . My private health only covered the surgery. The staff at the PA chemo daycare are truly amazing, wonderful people. Where are you being treated?
Luvmylab Yeah those last couple of chemos are hard aren't they? Looks like we have almost the same except I was strongly ER+ and PR+ too. I still get stiff if I sit for any period of time and I'm still frantically doing sudoku to get the brain working. The rads were ok for the first couple of weeks ... a couple of things that helped were a couple of non wire bras and some plain cotton hankies..I would steam iron the hankies so they were really clean and then lather on the creams I was given, put the hankie over the creams and then put my bra on ...the last week with boosts were sore but do-able.The tiredness did hit but a good feed of protein seemed to help heaps...I treated myself to fresh prawns ..the Qld lifestyle is so tough haha. Tamoxifen..my mother, 2 aunts and maternal grandmother all had it so I had a fair idea that I should be ok. Don't be scared of the treatments ..just remind yourself why you're taking it.. Glad you're safe after being evacuated. Have you gone back? Was the van ok?
I live in the outer southern suburbs of Brisbane almost halfway to the Gold Coast and luckily we weren't affected by the floods. It was really heartbreaking to see and I felt so helpless watching it unfold.
Hugs to all xx
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Hi Girls,
Just checking in to see how everyone is fairing.
Welcome Pirategirl, our Aussie group is expanding nicely. I am too on Tamoxifen and have been since April 2009. Like you I have side effects that come and go....Tamoxifen just like breast cancer...the gift that just keeps giving!
Stay cool , the ones having a hot day (like here in Adelaide) and stay dry, the ones near the floods.
Hugs Viv
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Hello Vivvygirl
Too hot to go out today in Adelaide, spent most of the day sleeping. It's not much fun for my girls aged 11 and 13 who are stuck indoor at home. My husband is working and i don't have any family to help me with the chores. I am wondering if centrelink would offer some financial help regarding getting a housekeeper once a week. Will try to call tomorow.
Trisha-Anne : My stage was written on my report. I don't know what kind of report i got, it was very difficult to understand. I think it's a copy of the doctor's report. I know my cancer is pleomorphic and agressive, my onc at Adelaide hospital is new and comes from England and the reason i am on a dose dense, is because it is supposed to be more effective.
Hello PirateGirl, nice to meet you
xoxo
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PirateGirl - I had my surgery at the Wesley and treatment at HOCA Chermside - rads at Premion there too. I live in Newmarket close to the city. I can't believe your private insurance didn't cover the chemo - who are you with? HOCA are really great and don't charge a gap, so the chemo cost me anything. Rads are another mattter as they are not covered by private health but it doesn't take long to reach the safety net when you do it. I was surprised at how many patients they have and they are all paying not going public.
Sue
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Sue I'm with Hcf but to be honest I don't think I could've received any better treatment than I receive publicly at the PA. There was a serious financial gap after my surgery at the Wesley and then to find out that I had no cover for chemo & rads...would've been cheaper to go intermediate in a public hospital and still have my own surgeon. I'm seriously thinking of dropping the private health cover..Does anyone have any thoughts on the subject? Meantime we do seem to have a far better health system than our american sisters who seem to have a lot of battles with their medical bills.
Trisha-Anne I was originally told that I'd be on Tam. for 5 yrs but at my last appt, my onc told me that it may be for 2 yrs and then change over to Ar. I think it depends whether we're in menopause. I was perimenopausal when I was diagnosed. I have one period after my first chemo but nothing since so my understanding is that if my periods come back I stay with Tam. If not I'll change.
Just wanting to share my news ..I pick up a 9 week old maltese pup tomorrow !! I lost my beloved dog in Feb last year and then was diagnosed with BC in March. Last year really was a lousy year. Thank goodness things are now on the up.
Hugs to allxx
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Hello Pirategirl,
I don't have private health insurance, but when i realised it was taking too long with the public system, i asked my doctor a referal for a private specialist/breast surgeon. He is very nice, can see me any time i want and he did my operation (mastectomy + lymph node removal) in a private hospital and it cost me approx $6000 (inc. 3 nights) . I think medicare paid up to $1000 back and some of the rest will be claimable on tax. My surgeon then refered me to my oncologist in the public hospital and i don't have to pay for anything. I am happy with everything i did. Good luck
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priategirl - I'm with MBF and am also seriously out of pocket due to 2 lots of this beast a year apart - the reason is the scheduled fees are way too low. Rads aren't covered by private health anyway. You must have not been covered for pharmacy for you not to be able to have chemo under it. That was the best part of it all as HOCA bulk bill everything and all of the drugs I got for nausea were covered as well. A friend of mine goes to PA oncology for work and she couldn't believe how long the patients have to wait to get their treatment started on the day. Did you have that problem?
Great news on you getting a new puppy - they're SO cute. I got a new cat about 18 months ago and she is so lovely. Pets are healing when you are going through all of this crap.
Have a great weekend!!!
Sue
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Hi Girls
Sorry - have been off the air for a while - I'm in the third week of my cycle, and have felt pretty good this week. So have been working longer hours - actually managed 6 hours per day this week, which is a bit of a record so far :-) It will all go downhill on Monday though - I start Taxotere on Monday and then have my first Hercepten on Tuesday, "sigh" not sure what to expect from the se's - well I sort of know what to expect, and hope I don't get all of them lol. A bit freaked out with starting the Taxotere, but will take a valium on Monday and then I won't care quite so much lol
I have private health insurance - with MBF too Sue - had my surgery as a private patient, then went public. I had my port inserted as a private patient, but the chemo is public. Our Canberra Hospital has a very good reputation for the Oncology ward - better than all the private hospitals. I work for the Australian Medical Council - so had the best advice on who to have as a breast surgeon and where to go etc. I'm seriously out of pocket too - the private health insurance covered all the hospital fees and accomm etc, but not the surgeons or anaethsetists. And that's still big bickies. The chemo has cost me around $200.00 per cycle so far - the Taxotere should be a bit cheaper as there aren't quite so many anti nausea meds. At least that's what the Onc's told me.
I haven't had to wait for chemo treatments, and even seeing the Onc each cycle I get in within 15 minutes or so. So I'm pretty happy so far.
Sue - did you have problems with MBF paying? I'm still waiting to be reimbursed for my mastectomy which was in October!! They keep saying they'll send the money - but don't. The latest excuse was that they were shut down because of the flooding in Brisbane - while I wouldn't have a problem with that excuse if my surgery was in December - it was in October! I'm not terribly impressed, but don't think I'll be able to change funds easily now.
Hope you are all well - and I'll let you know how Taxotere and Hercepten goes next week. I'm thinking I'll be climing the walls this time tomorrow - I start the steroids tomorrow :-) My husband has been warned to be in for an interesting time lol
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Pirategirl - congratulations on getting your new puppy. My two rough collies have been at my side constantly during this whole crappy journey - they are a real comfort to me. Don't get me wrong - I'm very, very lucky to have a husband who has been my rock, but dogs just seem to give so much joy and I agree with Sue - pets are healing.
Trish
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Trisha-Anne - no I've not had any trouble with MBF - I go to Medicare and get the little printed slip and then go straight to MBF and get the money put in my bank account - it's there 2 days later. So they are processing the claim on the spot - do you post your's in? It's always better to go in person. My chemo place is the best up here. They have agreements with most health funds and don't charge a gap, so I was lucky. I just went to the same onc my husband had - he is SO good. I go to one of their new clinics and the onc comes to see you!!! That's been the best part - no waiting around to see him.
It really annoys me that the scheduled fees are so low. I don't think $525 is too much for an anaethetist to charge for a surgery but the gap is around about $300. It all adds up especially as I had 3 surgeries recently. The surgeon I have, only charged me a gap for the first one, so that was something.
Pirategril - what are you calling the puppy?
Sue
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I have private health cover. When I origionally joined back in the '99, I was with SGIC, but two years ago MBF bought out SGIC, now, MBF is part of the BUPA Group. I still have the same coverage that I origionally took with SGIC which means I have a co pay for a hospital stay of $50 p/night to a maximum for any one stay of $250. For all my hospital stays over the last ten years, and there have been many, other than my co-pay, I have paid nothing else. All my doctors have been fully covered with no gap to be paid by me and that includes all anaethetists and theatre costs. The only thing that I have been out of pocket for was my Radiation treatment and in total, that was $1200. I am very happy with my Health Fund and even though I am now on a disability pension and I find paying for it expensive, not once has it crossed my mind to drop it and go public. I like the convenience of being able to see a doc, be it GP or Specialist, when the need arises without waiting too long. I know the public system here in Aus is probably one of the better ones but, regardless, there is sometimes way too long to wait when dealing with something like cancer. I know this as my brother was a public patient although with a gold card and when he was diagnosed with Lung Cancer caused by mesothelioma, he, IMHO, had to wait too long to see Specialists and have tests done. Unfortunately, he did not survive longer than six months. May he rest in peace and I'm sure he is.
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Chrissy - sounds like you were lucky to get good no gap doctors. I got rid of my excess a few years ago, so that's been great.0
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Lost my last post compeletely! And only half way through it grrr..
Sue - I didn't go into MBF to make the claim - there wasn't one in the shopping centre that I claimed from Medicare - I think I know where there's a centre that has both of them, so will try that with an outstanding bill.
It seems we have slightly different private cover between us all - and it's amazing how different specialists charge. My bs charged a total of $245.00 and I got $927.85 back from Medicare and expect $309.25 from MBF. My anaesthetist for the mastectomy charged $1120.00 and I got $308.55 back from Medicare and expect $102.55 back from healthfund. so seriously out of pocket.
With the port placement the surgeon only charged the amount I would get back from Medicare and healthfund - so wasn't out of pocket with him - but the anaesthsetist charged $975.00 and I only got back $231.10 from Medicare!! Should get another $76.95 from the healthfund. I don't understand how everyone thinks that anaesthetists are worth so little! It seems that they have our lives in their hands as much as the surgeons.
Ok - enough of my rant for the day - hope you are all having a good weekend.
Trish
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Trisha-Anne - I've got the top top cover with MBF but it doesn't help when the gaps are so big. I'm flabbergasted your anaesthetist charged so much for your port placement. I thought mine was expensive for that at $525. I'm seriously out of pocket after having the surgery a year ago, then rads - now 3 surgeries a year later and rads again. I did hit the safety net last year and will again soon once the rads bill adds up.
One really good thing I did for my recent surgery: I had to have 3 wires placed before surgery at the Wesley Breast Clinic. I didn't get admitted before I did it. They were all saying - you should get admitted so you can claim on MBF. Well, I had reached both safety nets and knew if I did the wire insertion as an outpatient I would get 100% of the scheduled fee plus 80% of out of pocket. They charged $1,066 - it cost me $101. Would have cost me over $600 otherwise. The lady at Medicare thought I was extremely clever. Then again, not many people would turn up for something like that who had already hit the safety net.
Sue
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Hello again ladies,
Just wondering how you get on in other areas of Australia when you have to go for your follow up mammogram and ultrasound each year to take back to your oncologist at check up time. It appears that most of us have to pay full fare, which can amount to many hundreds of dollars. I would have thought that Medicare would have covered us for the follow up especially after having had breast cancer. I would say that at this stage I would probably be about $20,000 out of pocket after my treatment over the last 3 years, especially having to travel to Sydney for each appointment (I am up to about my 39th trip to Sydney), plus all the accommodation and all the gaps with 3 surgeries and radiotherapy. Radiotherapy cost me close to $11,000 and there was a fairly large gap there when I claimed back from Medicare alone.
Is there anyone out there who can get their mammogram and ultrasound through Medicare with no extra charge or out of pocket expenses ???
ched
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Hi all
Yes I too was seriously out of pocket from the anaesthetist and the surgeon from the lumpectomy and having my margins re-done.
The PA hospital does have some waiting times to see the oncologist and go through to chemo daycare but it doesn't bother me..there are magazines to read and coffee...I also take my sudoku book to try and kick start the brain into working a little better. I'm not sure if it's the chemo, radiation or just the left over anxiety and stress from the diagnosis but "chemo brain" does exist. Anyone else suffering from it?
Trisha Anne good luck on Monday. I'll be thinking of you. If you start to feel a little "wobbly" just imagine that all of us from this site are sitting on your shoulder, right there with you. Do you take Dex ? How many chemos do you have left? I've found the herceptin only is a breeze - I feel guilty when I go into chemo day care because I have some hair and feel so much better than most of the others in there. You'll be a similar situation very soon. There is light at the end of the tunnel.
Suepen - I've called my puppy Daisy - she's gorgeous.
Hugs to all
xx
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pirategirl - nice name for the puppy. My cat's name is Poppy - she already ahd that name when I got her - she's a british blue.
aussieched - Don't you mean rads cost you $1,100. Once you reach the safety net you get 80% of the out of pocket back as well as the 85% of the scheduled fee. As for the follow ups. I got a letter from Breast Screen Qld telling me to go away and come back in 4 years. I will have to go to the Wesley Breast Clinic and pay as I did last year. I lost track of how much it cost as they called me back multiple times and I had 2 MRI's. I did get refunds for the many mammos and ultra sounds and as I had reached the safety net I got a lot back but none on the MRI's. Sorry you have so far to travel - that would be expensive.
Sue
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Hi Pirategirl-do you go to the PA in Brissie?
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Pirategirl - that's a lovely thought to have you all with me tomorrow :-) My treatment is 2.30 Canberra time, and it's the first Taxotere - I will have 3 of them. On Tuesday I'll have the first Herceptin and I'm not too worried about that one - then I'll have the Herceptin and T at the same time on the next treatment. Yes - taking Dex now - and so far haven't had the anticipated climbing the walls - my DH had been warned, but I'm more tired than anything today lol.
I've just realised that I said my BS only charged $245 - it was $2458.00!! How does that compare with other's? I did have a SN Biopsy done as well.
I'm in the top hospital cover, but not extras, no glasses dentists etc. It's expensive enough for just the hospital cover.
I'll be interested in how others go with follow up mamograms too. I know that Breastscreen won't touch us now - until we are cleared at least, 4 or 5 years. Ched - here in Canberra we can have a mammogram done through the public system, and it's free - well done through Medicare, but I think my BS will not want that, there was a bit of a hiccough when I had my original (free public) one done after I found the lump. It all went well and they found the lump easily - and then the ILC as well and did core biopsies on both, but getting the results to my BS was a bit problematic. They supplied a disc with everything on it, but not actual films. My BS is an older gentleman - and was quite upset at not having films to look at. I had to go and have another ultrasound done when I had all my CT and bone scans done, so he could have films. That will cost as it's a private imaging service. But as Sue says - once you reach the safety net you get a lot more back. Now I just have to look at the PBS "safety net" it's called something else, but I can't remember what - so I can start to claim some of the scripts back.
Sue - I'm also staggered at how much my anaesthetist charged for the port too. The bill was actually $1450 - but if I paid within a certain time it was reduced to $975, so I made sure I paid it early! Even at the lower price it was almost as expensive as the Mx - but there was a bit of a problem with getting the tube into a vein - they had to change sides, and it did take a fair bit longer than was anticipated because of that. I was just happy that this time I didn't throw up - I threw up for 30 hours after the Mx!!! Didn't want to go through that again - told the anaesthetist I wasn't going to pay him this time if I was sick lol - he delivered.
Trish
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Hi
IMC yes I go to the PA in Brissie.
I've been paying about $1000 each year to have a mammogram done. My private healthcover doesn't cover it - only in hospital treatments - that's why my chemo wasn't covered too although my 2 surgeries & port insertion were. March 2010 I was clear, March 2011 I had a 1.8cm tumour Grade 3. If I had been checked every 2 years as per guidelines instead I could now be in a hospice (the oncologist reckoned I had about12-18 months without treatment). And yes the mammogram people went back and re-checked the previous years results to make sure they hadn't missed it a year before and there was nothing there the year before......
Hugs to all
xx
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HI
Oops sorry forgot to add....Trish please let us know how you go...it was the 5th & 6th chemos that I found the hardest ..do I understand that you've only got 3 to get through? Have you painted your toe nails black? I'm way too old for the goth look lol but it worked for me. I couldn't stop eating on the Dex which made me put on weight and I found the Dex more of a challenge than the chemo itself.
Good Luck !!!!!!!!!!!
Hugst to all
xx
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Well my dx was so long ago that $ wise it doesn't mean much BUT...
When I knew I was to have a mastectomy my bs asked what health cover I had. When I told him the level of private cover I had he said.."Well...if you have your op here (at the hospital where he had his rooms) you will be really out of pocket for your stay.He recommended a private hospital nearer to where I lived and said that he operated there as well. With his bill, the hospital bill and the plastic surgeon I was out of pocket a minimal amount....both surgeons bills left almost no gap payment.
When I was dx money was the last thing on my mind...as with most ppl I guess. In hindsight I was just so thankful that he suggested that I went to another hospital. I had excellent care for virtually no out of pocket cost to me. Makes me cross that these options are available and you just need to know about them.
jezza
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me too Pirategirl...maybe our paths have crossed...
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When I was diagnosed a year ago my GP referred me to BS straight away - that appointment cost me nearly $200 from memory, but my surgeon worked at Peter Mac as well as privately so from that point on everything went through Peter Mac and I didn't pay for anything except for the anti nausea meds etc. I think I was very lucky considering some of your stories. Was bad enough paying for original scans and stuff.
One thing to remember - any out of pocket medical expenses you have, gap fees, dentist bill, prescriptions etc you can claim 30% back on your tax. You have to hit a threshold first - when I had my tax done last July the first $1500 you couldn't clam anything but everything after that you get 30% back. I have a feeling the federal govt has put it up to $2000 in last budget though. Amazing how quickly everything adds up as I had about $4000 out of pocket.
I'm due for my one year ultrasound and mammogram in Feb (valentines day my appointment is!). My oncologist told me that there is no provision for free screening once you've had a dignosis which I find absolutely stupid, but he siad sometimes they will bulk bill if it's written on the form. So he wrote it on the form, and when I made the appointment they didn't tell me the cost of it like they normally do so have 'fingers crossed' I won't have to pay but am not counting on it. One of my friends who is 3 years out told me she went to the GP clinic in town that is set up for Aboriginals (but the clinic is open to everyone) and as her referral was from there they bulk billed her mammogram and ultrasound simply based on where the referral came from. I found that very interesting.
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Pirategirl: When you have chemo privately eg at HOCA (Wesley, Mater or Chermside) you are admitted to hospital and your private health covers it. Sounds like you were given the wrong advice unless your cover doesn't include day hospitals.
Trish - we are with you tomorrow ((((((HUGS)))))))) Good you are only having 3.
Sue
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Hello everyone
I've been good the last few days, done lots of things and ate all my favorite foods !! I even went to the parc, saw a friend (who doesn't know i have bs) and she complimented on my hair (or my wig!!).
Pirate Girl : I also have chemo brain. It's like short term memory loss. Like turning the oven on and forgetting about it until something start smelling bad! or talking to someone and forgetting straihtaway. It's really anoying. i used to do french turoring but can't do it any more. I hope it will come back to normal after treatment. Next and last round of AC on thursday, then i'll start 12 rounds of paclitaxel + 5 weeks rads. Then hopefully i am going to France to see my family
Trish : Good luck
xoxo
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Hi everyone
Just back from the first Taxotere - and Yay! No reaction. Feeling ok at the moment - just extremely tired. Going to have some dinner and off to bed I think :-)
Thank you all for your best wishes.
Trish xoxo
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Trisha - Good to hear you didn't react. Now in 2 days time expect to hit rock bottom when the dex wears off. I had my treatments on a Wednesday and by Saturday - wammo. If you get leg pain, can I suggest you buy Claratyne once a day tablets and get a pain killer from your onc. My onc gave me digesics. Also, if you get tummy/bowel aches - Somac worked really well for me. The most important thing is to contact your onc if you have any side effects. I got really annoyed that mine didn't give me scripts just in case and I had to call at some time on the weekend to get help.
Sue
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