Australian Sisters
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Hi. I'm back again.
I've been worrying a bit that I didn't have enough treatment. I have a check up with the MO in a few weeks and I have to have tumour marker blood tests done so that is weighing on my mind a little. I feel guilty as I know most people here have a more serious diagnosis than me, but I was wondering of you could just help clarify a few things.
I wasn't offered chemo. I think I was borderline because of the size and grade, but no-one BS, MO or RO put it to me that I should consider chemo. I'm 61 so maybe that was a consideration. I'm Her neg but reading Sue's post made me think - So HER+ 2 cm would be a different kettle of fish to the same size HER neg??
Also I read on BCO of so many who were no node neg with smaller size tumours than the one I had (2cm, Grade 2) go on to develop MBC. I thought the stats for this was about 5% but there seem to be a lot here on BCO. And I have a cousin who this was the case for.
Apart for above concerns I am going well. Tolerating Tamoxifen with minimal SEs.
I'm glad that you have got through the radiation well, Kate
Jenn I hope you are feeling better soon. Nearly finished your chemo?
Hope everyone else is going well
Anyway if you can shed some light on my dilemma that would be much appreciated. BTW I'm not overly worried just lingering doubt.
Gerri
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Jenn, I'm having 25. I did find that by Saturday after a full week of rads, I would get suddenly very tired, but a good nights sleep would set me right again - unlike chemo where nothing stops it.
Is your radiation centre a big place? Mine has two machines on the go, so one is always working and so there is no getting out of it for me.
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Gerri, I find it very strange that you weren't offered chemo. Did the doctors talk with you about recurrence risk and give you stats regarding that?
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Kate - I got some soft bras from Big W - no underwires - Playtex I think they were maybe $20. I loved them. I kept wearing them for ages after rads finished.
Well, I went shopping but didn't buy bras, I just went to Officeworks and bought a new printer - $149 an Epson Artisan - now I can print pics. It scans and copies too. I'm not going to go crazy and print all of my pics but I can at least print the ones Annie sent so I can send them to Mum and my Aunty. I'm on my way back there - didn't realise you could get 6x4 photo paper - I bought A4. I can use it to copy Annie's baby photos to take down with us. I love shopping. I can't believe how cheap printers are these days - all I need now is a new computer to go with it.
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Hi Kate, My centre has something like 6 machines so it's not a small centre! I am pretty sure though that once they have you on one machine you always use that one... Plus because I am getting the newer IMRT type of radiotherapy I don't think every machine does that... So I'm stuck with the extra breaks whenever they are. I had worked out I would be finished on 25 July and then the letter came - bit of a bummer to now have to add extra days.
Gerri - why don't you ask your doctors why you didn't get chemo? We would be just guessing their reasons really... Did you get radiotherapy? If you had clear margins, no nodes involved then I could see that a lumpectomy, rads and hormone sucking drugs might be appropriate...
Jenn0 -
Im also confused that you werent offered chemo Gerri. I had to do it based on microinvasion in the breast tissue which was way less than your 2cm's but I guess I also has microinvasive in a lymph node which may have been the nail in the coffin so to speak on having to do chemo. I had extensive dcis which was grade 3 but the IDC was stage 2 like yours. I'd be shocked if your age had anything to do with the decision as 61 is still young though.
I think Ive seen on these forums that some ladies are being treated right off the bat with tamoxafin or arimidex before chemo and their tumours have shrunk, so in the event that your BC wasnt all excised, its quite possible the tamoxafin has done its job in a gentler fashion. Now Im no expert and as Ive confessed before Im subject to muddled thinking so I might be wrong in that. Perhaps Chrissy or one of the others who still have all their brain cells may be able to clarify.
I agree that her2+ seems to immediately alter the treatment. Thank goodness Herceptin is around for those ladies nowadays.
Having so many on BCO who went on to develop MBC makes sense. Those who arent in treatment, and who arent worried about further developments rarely hang around on the forums as they are out living their lives not worrying about recurrance. I didnt find BCO till I was worried about recurrance personally and if I hadnt had that bad mammo in Nov I probably would never have found the site. I wouldnt take the presence of so many on BCO as an accurate guide is what Im saying Gerri.
Hope Ive helped and not confused you further Gerri
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I got the photo paper!! Printed some for Mum & Aunty - WOW!! Can't believe how wonderful they look.
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How weird. I just responded to JustAziza who hasnt got breast cancer but who is having the expanders and fills etc and guided her to the reconstruction forum and the entire post has dissapeared. I looked her up in the members list and she's showing as no posts.
Whats up with that?? Surely the mods wouldnt delete a thread just cause the poster doesnt have BC?
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Thats great Suzie, Im sure they will be ecstatic to receive them. Technology has come so far long since we were young hey. Remember having to wait 2 weeks to get photos back once upon a time lol. Cant help but think a lot of people lost a lot of jobs when digital camera's came into being. Cant live without them though. My mum recently tried to buy the old fashioned film and failed miserably. The one place she could find it - was the wrong size
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I just called her and asked for some better photos - of course I can take my own when we get there, but I would like one to frame.
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Hi girls!
Gerri, it's not uncommon not to have chemo but with your Dx line I would have expected it be prescribed for you. Please ask your doc the reasons behind it not being Px's for you. Oh and your age would have had nothing to do with it . That only comes into play if you are in your eighties. If you have had rads and are now on Tamoxifen, you will be protected so please don't worry about that. I'm stage IV but have only been given the AI's so far and they, for all their miniscule size, are very powerful drugs as is Tamoxifen.
Don't worry about having to have a tumor marker done as it is one of the first tests ordered when you go for your check up as is the liver function test. It's just part and parcel of keeping an eye on you. You would have had a tumor maker done initially and that wil be your bench mark of record. Also, that particular test can be a good one as a first sign of something happening for some people but if your are like me, my levels never move but my doc still orders it everytime I need to see him. Breath girl, I think you are worrying unneccessarily.
You will always find way more people with higher stages on all forums as they are the ones that are constantly under treatment and often need the support of others doing the same thing. Those that are through their treatment are off living life just as it should be.
Jenn I sure hope your CT goes well and you do not have pneumonits. One to go! Almost there! I know it feels lijke you have been doing this forever but it's comng to the end now and I think you will find that the rads will feel like a bit of brezze in comparison.
Kate I'm so glad you are almost done and are not suffering too much with the burning. That tightening under your are is indeed constricting scar tissue. I know it feels uncomfortable but do try to keep it stretched out so you don't have a lot of trouble with it later.
Sue, later in the week when I go down to the city to see the doc I will also be getting myself a new printer.........mine decided to lock up and I cannot get it to work.......bummer as it is a really good one but there again, it's getting a bit long inm the tooth just like me.........lol. I always have a good supply of A4 and 6x4 photo paper as I like to print a lot of my pics anad use them as art works on my walls. Only a few more weeks until we get to catch up! We must put our heads together and work out what we want to do.
Oh damn! Trish I know I was going to answer your post but it's on the previous page and we all know what will happen if I try going back! ope you are feeling a bit better every day and you managed to get through you first day back at work. I was talking to my brother the other day, the one that lives in Canbera and he said it has been freezing over thre already.............brrrrrr!.......and it's not even winter yet! Don't think I'll complain about the cold anymore......lol.
I'm doing okay and looking forward to getting rid of the coumadin as I still can't level out on the damn stuff! If this ever happens again and I end up with another clot for whatever reason, I will demand clexane and tell them to stick their coumadin where the sun doesn't shine. I'd rather have to give myself an injection every day that go through all the seasawing again. Can you tell I'm a little pissed off with it?.....hahahahaha!
Hope the coming week is a good one for all!
Love n hugs. Chrissy
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Hi Gerri, I can understand your concern, because I also think that maybe I have also gone down the wrong track with treatment. At the initial appointment with surgeon, he said I would probably have to have chemo if sentinal node was positive. Initially after surgery I was told all good, node negative, however when I went back a week later for final pathology results, I was told that the sentinal node was positive, and then needed to have an auxillary clearance and they weren't sure if they had clear margin on one side. Back I went for 2nd surgery had a total of 30 nodes taken out (including sentinal node) the other 29 were clear and they obtained a clear margin.
On getting the pathology results of surgery a week later, then told that maybe I would like to consider oophorectomy instead of chemo, as I was premenopausal, and told taking out the ovaries would be as good as the chemo. I was totally amased at this offer, and blindly said yes to the oophorectomy, thinking that it would be good to avoid the chemo.
So 3 surgeries in 3 weeks later, then went onto Femara, and am in my 5th year of Femara. Hindsight is a wonderful thing, and everytime I read the posts here on BCOrg, it appears that I am in the very small minority that did not have chemo and have a positive node.
I do worry now that I have done the wrong thing, however too late for that now
From your post it appears you are node negative, so that is really in your favour, and a good thing. If you had of went to my doctors they may not have offered you chemo either. I avoided chemo with a positive node, however I will always wonder now, especially if I get a recurrence.
Ched
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Thanks for the feedback Racy, Lyndal and Ched and Chrissy (hope I didn't forget anyone)
I had my treatment in Albury/Wodonga. Lumpectomy, SNB, radiation and Tamoxifen. I was impressed by the standard of care. Initially I was not referred to an MO but she was present at the multidisciplinary team meeting which discussed my case. My GP was linked up to the meeting by telephone conferencing and she said they all agreed on radiation and Tamoxifen. I had clear margins. Later I asked to be referred to the MO to discuss Tamoxifen or AIs and the possible clash with antidepressants I was taking. I asked her about why I wasn't advised to have chemo and she said the possible benefit was not justified because of the nastiness of chemo. (My words). I think chemo would have given me a 1-2% better prognosis from memory. I think she said my reoccurence stats were 12% without Tamoxifen and 6% with Tamoxifen. I think that was 3% local and 3% mets. She did point to the size making my reocurrence rate higher but didn't seem to think this justified chemo. By then I had finished radiation and I wasn't exactly begging for chemo.
Chrissy thanks for your reassurance re the blood tests. It's just suddenly started to worry me a bit
Aussieched - thanks for your reply. I think reading these boards does give one a skewed view as Chrissy said.
BTW I have just realised ( since the new format) that this Aussie Sisters thread is in the 'having chemotherapy..' thread so I have been an imposter!
Sue. The printer seems to have made your day. Glad you are enjoying it.
Gerri
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Chrissy - consider an Epson Artisan 730 $149 at Officeworks - almost $200 elsewhere. I am extremely impressed. Hey it can do wireless and Apple thingies ie you can print from your I Phone or IPad - not that I'll ever get one. I totally love it - next project - try scanning old photos of Annie and see how they print.
ETA- don't touch HP with a barge pole - on my old one, the cartridges expired with time even if they were full - dodgy. Not sure if they're still like that but I preferred not to find out the hard way. Every time I wanted to print, I had to set the date back on the pc to trick it.
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Lol Sue I had to laugh at your don't touch HP with a barge pole as I feel that way about Epson!........hahahaha! I had one only Epson way back and I hated the damn thing.....it gave me nothing but trouble! I have been a HP user since then and still like them. My DD had an Epson and it wasn't working on DGS's computer and she needed to print something so we installed it onto my laptop........Big Mistake!!!! I can't get rid of the damn thing!!! I have run uninstall but there are still icons and crap I can't get rid of! I will be visiting Officeworks as I find they have a good range of things for a pretty good price.
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Chrissy - LOL - that is so funny. I must say uninstalling the HP was quite quick when it finally did it - had to find the disc for it to work.
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Hej AussieKate - do you mean the bras called "Aire bra"? I am in Sweden so it might be something different... I do know they are being sold in the US. I bought them and they are seriously brilliant. They have pockets that you can put in your prosthesis and they are super comfortable. I was wearing mine a few days after my mastectomy. I haven't had radiation yet but I predict they will be really good because they are very soft on my skin and all the bands are very wide. They are cheap too!! Highly recommended!
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Wow everyone started talking as soon as my back was turned lol
Sue printers are amazingly cheap these days. Some of the basic ones are so cheap it's cheaper to throw them out when the ink runs out and buy a new one rather than buy replacement ink! I've been printing photos for some years now and mainly use a Canon Pixma. It's been brilliant - it's the one I use for my competition prints. I also have an Epson that I bought last year - but it's one of the big ones that does A3 and banners. It's not so easy to use and has lots of hissy fits. It prints great though, but I must admit it's a bit temperamental, the Canon just keeps on going without a glitch. Have never used an HP, photographers generally stick to either Canon or Epson - just like the majority use Canon or Nikon for their camers lol.
Gerri - I wouldn't worry too much about not getting chemo either. I had 2cm grade 3 IDC tumour as well as a 1 cm grade 2 ILC tumour with a micromet in one lymph node. The oncs discussed my case at their monthly meetings and it was really borderline as to whether I'd get chemo or not. Once it was established that I was HER2+ though - there was no more discussion - chemo was a given.
Jenn - ((((hugs)))) to you xoxo
Kate - I have an Ahhh bra (well a couple of them) and they are really comfortable. I wear them all the time now, wish I'd known about them just after the mx as they would have been good to wear then, once the drains were out.
Chrissy - I'm getting better slowly, just have the cold part of the virus now - thank goodness I'm over the throwing up and big D. I had started a diet a few weeks before I got the cold and now have lost 5.5kg! I'm pretty happy about that. I did lose a fair bit while I was sick, but have managed to keep that off and lose a bit more on top. I'm getting there!
Have a great week everyone.
Trishxoxo
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Trish - I couldn't believe it takes the card from the camera too - where have I been
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Lol Sue - you must have been under a rock! They've been doing that for some years now :-)
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LOL - and me a computer wizz - go figure
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I have just spent an hour on the phone trying to sort payments out. Someone from the UK hacked my credit card, for $1.00 and the bank shut down my card automatically. That would have been ok, except they didn't tell me and all my auto payments have been declined. What a drama, but I am happy they caught it and all sorted now.
Gerri, something I find about the info on our profiles is that it doesn't show everything. My grade was low but my Ki67 was really high (aggressiveness). Also I had satellite tumour and this doesn't show. I suppose what I am trying to say is, that is why we each have such individual treatments, but it is always relieving to get a clear answer from your doctors. Sometimes I ask a question and then go home and think it wasn't answered to my satisfaction, so I ask again next time.
Kate, I find the Aahh bras are really comfortable but my boobs join together at the front and I look like I have a torpedo for breasts. I tried two different brands. I wear them at home, school runs etc. but don't feel they have enough support under 'good' clothes.
Not looking forward to US tomorrow, but can't wait for last chemo on Thursday. Kylie x
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Hi Katopet, I probably shouldn't be posting here as I didn't do chemo, however one of your ladies suggested yesterday after I posted, that I should come here to chat to other Aussies.
I did post here yesterday also, with regards to Gerri's concerns about not having been offered chemo. I am also having the "regrets" now about not doing the chemo. It was offered initially, but after the 3rd surgery they suggested that an oophorectomy would be just as good, so I jumped at the easier option, but now worry about the decsion.
I have just read your post above about the Ki67, is that routinely done in Australia in our blood tests. I have never been told about that reading, and looking back at my pathology after auxillary clearance, I can't see any result for Ki67. Did you have to request a test for this. I was grade 1 also, but this was never mentioned.
thanks, Ched
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Hi and welcome Ched, I really think this site is more about being Australian. We are all going through the same health system and it is great to be able to bounce ideas off each other. This site has been fantastic and sometimes I wonder how I would have coped without the great support from everyone here.
I can't remember if my Ki67 was on my pathology, but my onc gave me the scores. He said they would usually both be low or both be high. Everyone is just so different, I just wanted an explanation why a small tumour, grade 1 ended up in my lymph nodes and elsewhere. There wasn't one!!
I am supposed to be going to genetic counselling. Onc said he will decide on an oophorectomy after those results. My daughter has said she will never speak to me again if I tell her the Brac 1 & 2 results, she doesn't want to know. She has had a base ultrasound and will be proactive in 'looking' but doesn't want to wake up every morning thinking about a looming disease. I can truly understand her views. Has everyone else been tested? Kylie x
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Aussieched,
I shouldn't be here either, I am a kiwi so don't worry as these are a great bunch people not all of whom have had chemo. The decision about chemo seems to alter from person to person, I know it does here in NZ.
Ki-67 is a measure of tumour markers, not sure I had it doneor not, however my tumour markers have always been normal.
We have had several different printers at present have an HP which we are very happy with and it is a photographers one. So I think its personal choice and yes they are very cheap at present. And its great they take camera cards.
Trisha pleased to hear you are getting over the bug, we had it here and it was really nasty.
Bih hugs to all
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Alyson - I'm a Kiwi too don't forget
Kylie - I have no Ki67 results either. However, I do have BRCA test results - negative. Tell you daughter she should want to know the result - if you are positive she will get free testing and free MRIs. I did it for my daughter's sake, not mine.
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Maybe the thread name should be changed to Australian and NZ sisters - treatment and beyond, or similar. That might be more descriptive. I always find this thread challenging to read as it brings back the yuk feelings I had during treatment, but I enjoy seeing the support and encouragement.
Susie, you made me laugh about not knowing what printers can do. It reminds me of hubby who keeps his mobile turned off and has never sent an SMS. He gives it to me to send. He is a retired programmer/analyst who knows many computer languages and still reads technical manuals.
Actually he started in IT while working for a life insurance company before he was made redundant, then moved to an airline company where he was once again made redundant but had to train the Indian worker who was taking his job when they outsourced to India. He was happy to get the redundancy payout but thought the employer was crazy to trust the outsourcing company and the risk involved in moving the responsibility to a third world country.
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Kiwis unite!!
Meant to say I was a really proud mother Saturday night. DD! is an opera singer and is at present doing her doctorate - she teaches voiceat the University. She gave one of her recitals and it was a real tear jerker oh dear I don't usually get emotional as I have sat through so many concerts etc but this was sublime. She did several pieces of oratorio, Bach, Handel, Mozart, Rosinni and the final one was from Tippet's Child of our time. It was also wonderful that DD2 sang as well, she has a beautiful voice and has music degree as well ( and a PhD in English Lit). Sorry don't usually say too much about my family but I was really proud on Saturday.
Must go and put my feet up
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Aussieched, this thread is for all of us, whether we've done chemo or not. We are inclusive here - as you can see we even talk to those Kiwis from accross the "detch" lol
I started this thread when I was going through chemo, mainly because I thought it would be nice to talk to other Aussie ladies who are going through the same health system, but you are right - it probably shouldn't be in the Chemo thread any more, I will ask the Mods what they think we should do.
I'll have to look at my path results - I have no idea if my Ki67 was mentioned or not. I know I haven't seen it on any of the bloods that were done during and after chemo.
Kylie - last treatment coming up! Yay!! I know what you mean about having your credit carded hacked. Same thing happened to me only a couple of weeks ago. Dell computers rang me on a Sunday to check why my card had been declined. Someone was trying to buy a $1500 laptop on it - and it wasn't us. We have the name and address of the person - who is in Victoria - but of course when you google the name there is no phone number and the address is a block of some 200 units and there's no unit number, just the street address. Visa also called me - as the transactions didn't seem right, and that person had also tried to charge $500 worth of stuff to Dell on the same day. We cancelled the card there and then and were issued with new ones, luckily I had plenty of time to change all the monthly automatic payments that happen. Got the statement this week and there's 2 charges that have to be disputed - totalling around $200, so in all we were pretty lucky.
Alyson - congratulations on having such talented daughters :-) My DH has a beautiful operatic voice - he's a bass and I love listening to him when he performs
Trish
xoxo
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I don't think of this groups as a chemo group either. Just the right group for all of us Aussie and Kiwi women to touch base about our very different system and experiences here. Sssshh, but I'm a kiwi too - actually now a citizen of both countries.
Things here are quite different in terms of options and treatments etc so I think it's important that we can talk about them. For instance it seems so easy for women in the USA to get the reconstruction they want. But when I was talking to my BS the other week I found the options here are so much more limited.
If I end up with the BMX I'm considering early next year I will likely only have a choice of TRAM or DIEP (maybe) or that back flap option. Well, I have always had big thighs so really that would be the ideal place to take the flaps from since I will need both breasts reconstructed and neither my back nor my stomach have a lot to harvest. In the USA you can get a TUG or PAP flap done from that area. I've been researching and it doesn't look like anyone is doing them here :-(
Jenn0
