Kiwi ladies who need encouragment, but all welcome.
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Midnight if you are Her2 Positive then why arent you on Herceptin? That is what we need to findout. Im not really sure whether a criteria to be accepted for it is that some lymph nodes must be gone. Anyone else here know? I just looked back over this page and I cant see anyone else here that is Her2 pos. I would definitely ask someone why am I not on herceptin. Let us know how you get on.
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Hi All
Hope Alyson your trip to Nelson goes smoothly, so sorry to hear about the passing of your friends. Cancer is horrible. I remember nursing my father in law with liver cancer at home, this allowed him to stay in a familiar environment and my mother in law to be with him at any time of the day. It was a hard time for all of the family and not something I would like to repeat.
Midnight Her2+ patients are fully funded for a years Herceptin treatment here in NZ, I know at one stage they thought I was Her2+++ and that was the route I was going to be going down as well as chemo and Tamoxifen. They then did another test and the initial result was overturned. So you really should check that out.
Musical when I was originally tested my ER+ was 90%+ and my PR+ was 90%+, but as I said they did another more accurate test and I was never told my final ER and PR status. It reminds me I need to ask - cheers for reminding me
As Kt said your medical records are exactly that and you can ask to read them or ask for certain items to be copied and given to you. You can also request that a copy of any blood test is sent to you as well as to your GP etc, you just need to ensure that you request for this to occur.
I totally agree that the way the girls in the US are treated and the way we are treated is slightly different . I think one of the key things is that many of the US girls are going down the private route and not the public health route. Hence alot of tests are requested by Drs to cover themselves from any litigation and because they can. Our health system has certain restrictions based on how much it can afford - hence if there is not a really good reason to do something then unless a patient group or research can pressure the health system then it will not be done. If I was in the US or the UK I would probably be on 5 years of Tamoxifen, but this seen as overkill here in NZ. Lets hope they are right!
What a strange old day weather wise, I arrived at work in the dark then it got light and then at 9am it looked like the clocks had gone backwards and it was dark again. The later on in it became nice and sunny for my trip home. Funny old day.
Hope the rest of the week is good for all
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i tried to ring B/Cancer nurse today, but she away so will try again wednesday and see what they come up with. thanks for putting me straight here. i will find out my cancer status and just ask a few questions. thanks Girls. it is alot of lack of knowledge with me as i said, i really did not know the right things to ask. They never offered or even mention it and I of cause always thought we did not have it here.
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Midnight, you may have said but if so I cant recall, when was your diagnosis? I am AMAZED that they never offered or mentioned herceptin. I remember a lot of ladies on here saying you are your own best advocate, and that may be true to a degree, but if I never had my hubby to pull for me when the chips were well and truly down I honestly dont know where Id be. I know one thing for certain. After the initial bombshell you can barely even think straight let alone take anything on board and that includes thinking of what questions you should ask. I was swamped with all sorts of info, like pamphlets booklets, people talked to me, and I was just so numb I couldnt take it all in, but DH was there for every appointment except 1. He just patiently read things out to me when I was able to sit and listen. People really need support through this and Ive heard of some awful stories where people are on their own.
I'm sure we've all heard the great saying "the only dumb question is the one you dont ask". Its Oh so true, as long as we know what the question is in the first place. Often we dont, and find out the hard way because we wernt informed. Midnight did you not have support people offer to brief you on things and choices and stuff?
Hils youve put it very succinctly. I think in the end it comes down to $, and thanks for sharing that about ER &PR %. If you get around to it, it would be interesting to hear if or how much it has changed. Yes I will ask for some printouts and I do want to get to the bottom of this because two opposing things can both be wrong but they cant be both right. Either ER & PR percentages are significant or theyre not unless theres an extenuating circumstance that I dont know about which is quite likely. Lets hope its not what Im thinking. $ signs. One thing, my GP has been really good to me and he will print out anything I ask.
I know what you mean with the strange light that can happen at this time of the year. Especially when its around the shortest day. Sometimes it can be pretty dark even at 4 pm when the weathers packed a sad. Looks like we are in for some fun tomorrow.
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Good morning. Another cold showery day, the sun is managing to peek out from time to time tho.
Midnight, I hope you get answers soon- I too would have thought you'd have herceptin.
I've just been outside with the horse getting his feet trimmed by the barefoot trimmer. My nose is running now from the cold (tmi)!
I had an appt with Dr yesterday, hoping to get answers about LE amongst other things, but ended up giving the appt to my daughter who now has been diagnosed with migraines- poor thing. So I will reschedule....
Keep warm everyone, especially those down south.
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I was diagnosed last year, 12th August, went in for mamogram on 8th and went back for more photos, scan and had a core biospy on the 10th and found out on 12th, it was a grade 2 then, and when i had my surgery on 31st of that month, it came back as a grade 3, and i asked directly what type of cancer it was, and they said, it was a ductal carcinoma grade 3 and stressed it was very nasty and we went to the radiaiton doc and the oncology dept as they wanted to talk me out of chemo, they said, it was about 7% chance outta of a hundred, i would benefit from it, but herceptin was not mentioned and thinking it was not available in NZ, i never asked. had hubby with me and i was sick as a dog as i developed a chest infection after the surgery and was coughng my lungs out, everything was very quickly done as i found out, by the time it got to a lump i would of been terminal or dead like by the new year, the gp told me that. hence remembering the surgeon saying it was very nasty tumour and the cells were angry. I wish i was more on to it. hubby did not know what to ask either, new to him. he was going thru his turmoil with it and was shocked. i will have to be more assertive, i am with other people, but not myself.
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If it was me Id be demanding answers and/or explanations as to WHY they havent offered more information, unless at the time you just told them you'd rather not. Some people prefer not to get all the details and thats their right. For me I wanted as much info as I could get and Id have to say I was well informed.
7% is 7% Were you actually given the option for chemo or did they just say nah you dont need chemo, and Im presuming by Chemo they mean herceptin or did they mention another type of chemo. What I dont 'get' is if your tumor is so aggressive and it looks to be being graded as 3 how can they deny you the right to decide for yourself? Maybe theres things I just dont understand here as Im only going by my sisters Her2 +++ status 6.5 yrs ago and because Im not Her2+ Ive just looked into my own status. I do know theres a number of factors they take into account as to how they stage you. Also, did they give you a report on your pathology? Surely they told you whether you had clear margins and so forth? How much Her2 pos are you? If you want to midnight PM me.
High kt, love horses. In my younger days I used to ride heaps and had my own. I always LOVED quarter horses [ never owned one :-( ] and also love the western riding strategy with the rawhide bosals instead of bits. I was fascinated with their combination of body pressure on pressure off strategy and neckreining , which was accompanied with a relaxed loose rein which to my mind is kinder. Despite the rough wild cowboy image, the finer points of western riding are actually not like that. Just my prefs. LOL.
Well we've sure had some boistrous downpours here today ...LOL horizontal rain.
Hope you get some answers too about LE. As we who have got it know, if you let it get out of hand it can turn VERY nasty. WOuldnt it just be nice if we could be DONE with cancer, but no, I guess we'll always be looking over our shoulder to some degree. .
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Evening all
I have found that it is great to take a person with me to appointments as two sets of ears are better than one. But another thing that has helped me is to write all of my questions down on a piece of paper and then to work through them with the Dr when I see them, it means that I don't usually forget anything and it is really easy to do when the Dr tells you something that makes you mind go into overdrive.
What I also found amazing when I saw the Oncology Team was that the Consultant said that she has been pursuaded by patients before now to have treatment (chemo, hormonal therapy etc) even if the Oncology team would not have normally recommended it. This change in treatment was based on a patient bringing in the latest literature or desperately wanting a certain treatment. Which I feel is a little strange as surely the Oncology Department should have treatment protocols that they adhere to for all patients. May be I am missing something?!?
Another crazy day on the weather front, glad I was stuck at work inside away from the rain and wind. Hope you all stay warm and dry.
Have a good night
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Hi All Just a quick note to say I am home an dside one has gone well. Will check in againe tomorrow as it has been a long day with the trip back from the Hutt.
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Hey Rainenz, good that all is well! Youve been in my thoughts and hopefully you have a speedy recovery.
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Hils you sound as if youre totally on the same page as me. My Hubby was always my extra pair of ears and oh your so right about your head spinning, making notes and stuff. I do notes on almost every visit other wise I just go blank and forget most of what I want to say. Boy that can hack you off when that happens. Of course you get home and kick yourself saying why didnt I mention ........ !!! The amazing thing was when I played back my voice recorder of the appointment both hubby and I were amazed at what we'd missed, and this wasnt just a one off, but more the norm. Soooo grateful for my voice recorder.
I dont think youre missing anything Hils. In fact what youre saying is what Ive never really stopped wondering about. Consistency. You'd think there would be a standard in which the medical profession adhered to across the board. Its just common sense. Not just in your own country but further afield. For example, I just dont 'get it' that what is purported to be right for US girls is not necessarily so for other nations, or visa versa. What? we all have two ears two eyes a nose mouth and other things that are synonymous with simply being humans. Crazy.
Looks like we're in for another lot of 'power showers' tomorrow too. Sure was wild today.
Sleep tight everybody.
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I don't understand all the extra liposuction that goes on with the girls in the US in what they call the stage II of Diep reconstruction. I had some dog ears removed (hate that name for it) and excess skin pocket from under the breast done along with the nipple reconstruction, but no liposuction was done or obviously required. Are they doing things differently here?
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Hi SuzyBlue, welcome! One thing I found about BC is there are SO MANY different scenarios and that it's just a logistical nightmare to know everything about everything. There are so many variables which are tied up with each persons preferences and particular type of BC. I didnt do reconstruction and so I know very little about it and the procedures but hopefully other ladies will chime in on that.
That said, indeed there are things that differ between countries, but in the end its all about following the money trail. Because we have a public health system thats supposedly free (but theres really no such thing as a free lunch) and because funds get creamed off here and there then things get stretched and we have services cut, waiting queues (sp?) and such like. I suspect overall, there is more corner cutting now than before.
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Hi Musical, i pm you.
hello ladies,. hope everything is ok with all, i am going to do my dishes now and clean up abit, feed my chinchillas. and tomorrow the sky man is coming to install my sky, i was selected to get free instalation and six months free, so am looking forward to that. We supposed to get it when we went to vodafone on this bussiness account, but it fell thru, as sky is under my name and the bussiness is under another one, oh well what ever. just another promise that was broken, typical salesman, i will look after you and be there to fix things up, once you sign the dotted line, you don't see them for dust and when you do, its, i am so busy. anyway i am looking forward to getting this machine and seeing what happens, not got a clue really. sometimes new things scare me incase i stuff it up, have a good day girls.
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Hi everyone. Rainez, hope you are feeling well today & your recovery is going well.
I gave up on sky, midnight & have freeview now - we have to have one of them here or we have no reception...
Crazy day today, just got back from Auckland (I hate the traffic there) and have dropped my son off for hockey. I caught up with my sis & mum & saw a movie- The Well-Diggers Daughter- a French movie, quite good, but definitely a girls one.
Hope you all have a nice relaxing evening. I plan too once I've fed the animals & picked up DS from hockey again.
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yes is freeview good,? i have often wondered about that, how many channels to do you get exactly? I got my results from repeat mamogram and at this stage i am ok and it is clear for now. so that is good, there was reason to think otherwise as they thought i had calcifacations in other breast. so i can breath again. hope everybody ok and had a good day. take and enjoy your night.
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What I like about freeview is that its free! (once you pay for the box...) When we had sky we only had the basic channels anyway, so I'm not too fussed about all the extra ones you pay for. I mainly just watch the ones that are in the Listener, 3 plus 1 is handy sometimes...
So if you like movie channels, sport etc it might not be for you, but its enough for me.
Well, animals all sorted, dark now, so nice to be inside where its warm. The wind blew a big old tree down last night on our boundary with the neighbours, its their tree, so I'm glad it fell onto their paddocks not ours- no animals harmed!
(edited to add:I'm glad your results came back good midnight!)
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What a day, crazy at work and glad to be home and next to the fire.
Great news Midnight re your results. We have Freeview as well, similar reason to Kt because without it we would have no TV at all. Have never had Sky so cannot compare but Freeview is good for us, TV7 is good but that will turned off soon just like Stratos which again I liked. I better not say which other channels I like as when I do some one decides to get rid of them lol
I agree with you Musical re the possible cost cutting and that one way we can protect ourselves is through knowledge, information, sharing and supporting one another
Welcome SuzyBlue, glad to hear that you are doing well after your latest op. I have read on the American site that they are also thinking of just doing fat grafting for smaller women, but I am sure I have also read somewhere that the fat can dissappear with time! Because most of the American girls are having private healthcare they do get extra things that we do not, including tests like Onco testing. But then there are some questions re the accuracy of some of these tests, so I am not sure we are missing anything there. But who knows!
Hi Rainez hope you are feeling better today and that your recovery will be a quick one.
I did find the Amercian care guidelines very interesting to read as to what treatment and care you would get for each type of breast cancer etc. I will try and find the link and post it here - so if anyone is interested they can have a look.
Kt great to hear that no one was hurt when the tree fell, even better that you do not have to clear it up!
Have a good evening
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OK here is the link to the NCCN (National Comrehensive Cancer Network) guidelines they are American guidelines but there are some really good explainations of tests and treatment plans for all the different types of breast cancer. They state the following on their website
The National Comprehensive Cancer Network® (NCCN®) aims to provide people with cancer and the general public state-of-the-art cancer treatment information in easy-to-understand language. The NCCN Guidelines for PatientsTM, based on the NCCN Clinical Practice GuidelinesGuidelines developed to help health care professionals and patients make decisions about screening, prevention, or treatment of a specific health condition. in OncologyThe study of cancer. (NCCN GuidelinesTM), are meant to help you when you talk with your doctor about treatment options that are best for you. These guidelines do not replace the expertise and clinical judgment of your doctor.
Here is the link to the guidelines
http://www.nccn.com/files/cancer-guidelines/breast/index.html#/1/
It would be great if we had something similar here in NZ that listed the tests and treatments that were available here across the whole of NZ! Maybe there is...................and I just do not know about it
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Hi everybody, well weather pretty wild today. Started off nice and fine but cold, then bam, horizontal rain again.
Hils, here here about having something available as a standard we could all go by. I followed your link and wow thats some presentation. I can get the sidebar entries but not the content. Must be my browser or something. Theres an option to download a Pdf which I'll do shortly. Im on bloomin' dialup and WHAT A PAIN!!!! Yes we're in a 'dead zone' and it's my pet moan.
I must admit I dont watch a lot of TV, as theres just so much foul rubbish on I just cant be bothered. Ocasionally there is something worhtwhile though. Haha we still have a little ummmm 14" box which has been on the way out for about 4 or 5 years now but hasnt died yet. It has an ever growing black line at the bottom and as such, the picture is progressively distorted as you get to the top. You guys would probably be appalled if you saw it ...hehe something like this...>
or this > ............... that shows how dedicated I am to the TV. LOL, I get better TV out my window watching some animal or bird or something. I have 2 monarchs left to hatch and HOPEFULLY I can take them all to the park this weekend. Last count was about 45. Ispoilt them all today and let them fly around the dining room before feed time but put old nets on the windows so they dont damage their wings whacking into the glass. Hope everybody is all snug this evening, hunkering down on this cold winters night.
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Well Correction Hils, Looks like I just have to wait a bit for the pages to load. Thanks for this link too, I think its going to be very helpful. I was telling Midnight in a PM that when I had my diagnosis I was given a specially designed booklet/brochure called "What does my pathology report mean?" In it they filled in the the fields with the appropriate info and simplified info on how they stage you and such. I'd forgotten how useful this actually was at the time. Ive just been reading it again.0
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Thanks Hils. That 'booklet' makes interesting reading. According to it however I am stage IIIa- that sounds worse than IIb, yuck. It is what it is I guess & labelling doesn't really change anything...
I think my treatment has been good comparing it to what is recommended.
Hope you all have a good day, and can keep warm & out of that yucky wind
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Hi Kt and Musical glad the booklet was of use and of interest even if it takes a little time to load. Glad to hear that your treatment has been good comparing to what is suggested. Re stages etc I think I read that this can be slightly subjective and can alter between Drs etc.
Crazy day at work, but survived and had fun, so I cannot complain. Plus stayed out of the wind, which was a definate plus.
Your Monarchs sound great Musical, very cool. Will they be fine being released in this cold? I know one of my friends said they walked past a tree in Auckland last week that had a crowd of Monarchs nesting / resting upon it. But it just seems strange that they can survive the winter months.
Not working tomorrow, so time to catch up with all the housework, washing, food shopping etc.
Stay warm and safe
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Hi Ladies,
Hils, I Downloaded the PDF, but I was bout to do a lil copy/paste op here and nah, wouldnt let me. Tried all sorts and no, so had to type it (argggh) Anyway, read a good part of it and I found it VERY informative. They explained many things very well and theres much that applies to everybody. For example they use the TNM system for staging which is what we use in NZ. (Tumor/Nodes/Metastases) Especially of interest to me was a refresher on staging (pg 25-26)
Also in regards to you Midnight, you might like to look at Pg 74 - 76 area. We dont know what your ER status is but according to what they say in treatment guides, if you were in the US my understanding from this below is that you would be receiving herceptin (Trastuzumab) because your tumor is above 0.5cms. Just a thought.
QUOTE: Excerpt
Hormone receptor and Her2 Positive
Trastuzumab and hormone therapy are suggested for all these tumors with the exception of node-negetive breast tumors < 0.5 cm. Chemotherapy may help treat woman who have small breast and lymph node tumors. Adding Chemotherapy to the adjuvant regimen is recommended for all woman with breast tumors larger than 0.5 cm or with tumors larger than 2mm in one or more lymph nodes.
UNQUOTE
Hils re the Monarchs, when Monarchs group like that its called a "cluster". Sometimes these can number in the thousands and sometime a lot smaller. Im Lower North Island, and yes it gets very cold here at times, but what happens is the Monarchs go into a semi hiberbation mode called diapause (sp?). They just park up in trees and when its fine they go and find nectar. We often see them gliding around on a sunny winters day in town where theres nectar from gardens and parks. It is amazing how they survive but they do! The overwintering monarchs will start off the new season but once they start mating and laying eggs their life cycle is about 3 weeks, as is those that carry on through the season. HOPEFULLY this weekend is looking OK. I also acclimatize them by not having them in rooms too warm.
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Hi Musical the info re the Monarchs is really interesting, cheers for that. Totaly agree re your information for Midnight, I know that at one stage I was told that I was HER2+ and my IDC was 0.6cm and I was going to be going down the chemo + Herceptin + Tamoxifen route and I was told this just a few months ago. They then changed my pathology results and I got nothing. That was a bit of an emotional roller coaster ride!
Have a great Friday and and even better weekend
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Enjoy your day off Hils (don't spend it all doing housework- have some fun too!).
I'm going to enjoy today too, last day with no kids for 2 weeks- school holidays start after today.
We are hoping to get down to Lake Tarawera in the middle weekend- your pic you posted a while back Hils was lovely- I really like it down there. Great for walking & biking.
Midnight, hows the sky going? Are you enjoying it? Have you had any answers re pathology?
Hope you are mending and feeling better Rainenz.
Have a good Friday everyone, nearly the weekend!
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Hi there Girls, KT it is today, we already have sky, we just upgrading to the mysky HDI. it is free installing and six months. but the girl told me me wrong day, she said, the 28th and he would ring night before, but i rang them up and they said, no she told me wrong day. i would done what i have put off til toady yesterday. never mind, he is coming at one, so better tidy my house abit. lol. well i did yesterday. but animals get it in a mess at times. little pigs, well cats.
Well musical i have not received my patholgy results as yet, soon as i do i will have a read and c what i can decipher from them and go fom there, today i have abit on as i have said with the sky guy and then washing, so better get to it. take care and catch up later.
hugs to you all. xxx
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Hi Hils, Well so far today we have a stunner! Nice fine day. 10 a.m. I released the Monarchs down the park in town. We have supposedly a nice settled weekend coming up. May be a bit frosty but because of the many trees at the park the frost tends to stay away from that vincinity. LOL I had one that hid in the car so Ive brought her home. So now I have one to hatch one has hatched and one brought home. The grand total of 3!
Im one of those who hates getting the run around with my washing.... (grrrrr) As such, Im looking forward to the (hopefully fine) weekend. I'll be able to do my washing and hang it outside instead of putting and taking.... > line > shower of rain > carshed > fine > line > shower of rain again > carshed > no drying > rack inside > fi-i-i-i-nally hotwater cupboard.....This has been the scenario for weeks on end!
Hope you all have a lovely weekend.
Yes get well quickly Rainenzwe're thinking of you.
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Forgot to say too, Oh Hils (big BIG hugs) thats scarey!!!! having a wrong pathology
Really sorry to hear that. Who needs it when youve already got the monstosity of BC on your mind. Herceptin is NOT to be taken lightly either. Theres potentially serious side FX. Just looking on the back of my orange pathology booklet I got....it says..... (regarding herceptin) QUOTE:
Possible unwanted side FX: Common: chills, shivering, fever, nausea, vomiting, pain, stiffness, shaking, headache, diszziness, cough, skin rash, itchy skin, weakness, fatigue, abnormal or fast heartbeat, insomnia, anxiety, depression, runny or blocked nose, cold/flu - like symptoms, chest infection, worsening cough, pain on urination, diarrhoea, hair loss, muscle or joint soreness Serious: shortness of breath or breathing difficulty, severe cough, severe swelling of feet or legs, chest pain, abnormal heartbeat, severe diarrhoea feeling faint.
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I guess this is a stark reminder that anytime we have to make a choice concerning BC its always the lesser of two evils.As such, you'd be wanting that choice to be about something that is actually true.
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hey musical, the pathology report did not come in mail today, gee i don't know, so maybe tomorow it will come. i actually wondered if she sent it out and did not forget, if not tomorrow i will ring and find out if they sent it.. i won't be too thrilled if they haven't. am looking foward to seeing it.
just had my sky HDI installed, so it will be an education. he showed me how to work it, not difficult really, hubby can have a look at book and educate himself. I am terribly Un Technical and i tried not to appear to be thick, (like the elevator doesn't go to the top floor,) well actually it's my memory that worries me. tamox don't do the memory much good. oh well have the book i can look in too as well. going to do washing shortly, using the lauderette at the moment as our machine broke and then we shifted here from other place and i have never got another one as we will shift again at some time, so will wait and i don't mind the launderett as i get to talk to a few people and relax with my thats life mag while i wait for washing to do. so will be down there soon. BILaw will pick me up as hubby doing truck run today, much to his disgust. anyway girls have a lovely time and weekend and musical will pm you if that report comes. hugs xxx
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