Topic: Kiwi ladies who need encouragment, but all welcome.

Jun 25, 2012 01:56AM Hils wrote:

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

Jun 25, 2012 04:04AM Musical wrote:

 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. 

Jun 25, 2012 06:11PM midnight1327 wrote:

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.

Jun 26, 2012 01:29AM Hils wrote:

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

Jun 26, 2012 04:01AM Musical wrote:

Hey Rainenz, good that all is well! Youve been in my thoughts and hopefully you have a speedy recovery.

Jun 26, 2012 06:07AM SuzyBlue wrote:

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?

Jun 26, 2012 06:17PM - edited Jun 26, 2012 06:19PM by midnight1327

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.

Jun 27, 2012 12:38AM midnight1327 wrote:

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.

Jun 27, 2012 01:13AM Hils wrote:

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

Jun 27, 2012 04:26AM Musical wrote:

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.

Jun 27, 2012 05:25PM kt1966 wrote:

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 

Jun 28, 2012 04:23AM Musical wrote:

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. 

Jun 28, 2012 04:45PM kt1966 wrote:

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! 

Jun 28, 2012 08:21PM Musical wrote:

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.

Jun 28, 2012 09:51PM midnight1327 wrote:

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