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Kiwi ladies who need encouragment, but all welcome.

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Comments

  • woodyhollow
    woodyhollow Member Posts: 103

    hi all

    I agree Fizzdon, they certainly seem to be more on the ball overseas than they are here...maybe a matter of funding or is it that it doesn't matter in overall survival statistics (used to loathe reading about survival stats, mostly because they never went beyond 10 years). Just like they don't do regular CT or PET scans after you have finished treatment, because it makes no difference in overall outcome. I did have chemo with my ILC, but I had some positive (extra capsular) nodes, so maybe it makes sense for that?

    Really sad about Robin Williams, one of my favorite actors:(

  • midnight1327
    midnight1327 Member Posts: 1,331

    I cant remember the name, but he dressed as a lady babysitter,it was a comedy movie,  the name wont come to me at the moment.  Darn. i can see him dressed as  middle aged women. perhaps later.Hubby just said, Mrs Doubtfire. lol

  • Alyson
    Alyson Member Posts: 3,737

    Morning all

    Being very lazy here.

    Woody and Fizz don't get bothered with the treatment many US folks get. Our treatments are much like Canada and Aus and our stats are good. Onc typing is extremely unreliable as are cancer markers. Mine have never been raised even when I was diagnosed. And they can be raised  for other thing. And mine are checked every time I have a blood test.

    I remember asking about the number of rads they have in the US. We get the same total dose. In the US it's to do with money because the hospital is paid so much for each treatment so they spread out the treatment.

    Another thing about CT scans etc. Here it is seen as unnecessary and actually a risk of radiation causing further cancer. When I have had  a problem I have been sent for a scan, an ultra sound or MRI without asking had several in the hospital system. Also in the States doctors are scared of being sued so this is a reason for them being over cautious and so they over investigate and mostly it is done through Insurance.

    Asked the oncologist about this regular scanning and he said it raised lots of question because if you found something you had the investigate and most were invasive and showed benign conditions. He also said the time of finding mets didn't actually alter the treatment. I must have been an annoying patient because I asked questions every visit mainly about US treatments.

    We get good treatment here and our doctors are up to date with things. Yes sometimes things are missed but that happens anywhere and I have some horror stories from the US from friends there. I am so grateful we live in a place where if we are ill we can go to the hospital and be treated and not have to worry about insurance or going bankrupt because you have had to take out a loan to pay for medical treatment. Or have to miss a chemo treatment because the Insurance company hasn't sent through some form - this happened to a friend who was stage 4 and was having weekly chemo. 

    Sorry to go on but having so many friends in the States who I have visited I feel we actually do have it pretty good here.

    I hope everyone is going well

    Big hugs to all

  • kt1966
    kt1966 Member Posts: 1,021

    Being lazy sounds good to me, Alyson... 

    I've been cleaning window frames & I'm stuffed  :)

    Work tomorrow, so I'm looking forward to being finished & putting my feet after I'm done.

    We do get good care here don't we. No complaints from me. 

    Tumour markers are a funny one- they seem to work for some people & not others. Just another tool if they work for you. Scans too- no need to have them unless you have symptoms. 

    Hope you've all had a good day

    kt

  • fizzdon52
    fizzdon52 Member Posts: 382

    Yes Alyson you do have some good points about the Hospital Systems in New Zealand and the States. I lived in the States for 3 1/2 years and it is a wonderful country. I thought so, although I never had to go to Hospital when I was in America, however my brother who was also living in the States came home to NZ to get married and two weeks after returning to the States got really sick. He had Encephalitis and if he had collapsed in NZ like he did in the US he would have died. They didn't do the kind of brain surgery required to save his life in NZ then. So in this instance being in the States saved his life. He made a complete and full recovery. Also being put through the mill with my sons illness, I could write a book about and may just do that one day. One of the Doctors at Middlemore said to me once "hello I am one of the Doctors who is part of this circus that's trying to find out what is wrong with your son". Things like that don't give me a lot of confidence. I won't even get started on my experiences since I've had breast cancer. I think the most upsetting part for me was that even though I knew I had something going on in my boob, and did everything right, i.e. doctor, mammogram etc, they wouldn't listen to me and missed it. So it took 18 months for my diagnoses and this resulted in a fairly large tumour, which the Onco doctors say is of concern. My files got lost and I wasn't seen by Oncology and Radiology until much later than I should have, if I hadn't pestered them I might still be waiting. With my lumpectomy when they put the hook wire in they didn't anaesthetise my breast. Did that happen to any of you when and if you had hook wire procedures? I can still feel that needle being pushed half way through my boob. I don't know, maybe it's just me. Everyone says you need to be positive, but how do you remain positive when you don't trust those looking after your health? And how would you like to have been told sorry you won't be having Chemo, even though those with a similar diagnoses overseas have Chemo. Everyone says gosh you are lucky you don't need Chemo, but what about the fact the Chemo might just save your life?. Also why don't we have the gene testing over here? When I asked my breast nurse if I should be worried about my daughter she said, nah she won't need mammograms until she's over 40? Really???. This is the same nurse who told me my seroma was nothing to worry about. It ended up bursting and I ended up in Middlemore with an IV antibiotic drip because I developed Cellulitis! One day, when a bit of time has passed I am going to write a really long letter about my experiences and send it to the GM of Counties Manukau Health. Sorry to go on :(

  • Alyson
    Alyson Member Posts: 3,737

    Fizz I understand what you are saying. Unfortunately you suffered at Middlemore and having experienced some things there I cannot say many good things about it. They are excellent with orthopaedic things but others no way. A good friend was refused cancer treatment recently because she was too old!!!!??! She has just finished treatment at Auckland and is doing well and oh dear she is 67.

    I agree that we so not do everything here and some people have to be sent overseas. 

    About generic testing - it was offered to me so they do it here. I have had the onc type test and regularly have cancer markers done as well. Just as I have has ct scans and bone density scans after the end of treatment and that is in the public system. 

    I would certainly make a complaint  to Counties Manukau as I have heard similar  stories to yours especially about missed diagnosis. My friend has made a formal complaint about her treatment. 

    And don't worry about having a rant it sounds a very reasonable one. 

    Big hugs. 

  • fizzdon52
    fizzdon52 Member Posts: 382

    Wow Alyson I asked my Radiology Doctor (who is lovely, very informative and I actually like and trust her) about the Oncotype dx (if that's what it's called) testing and she said it would cost thousands as they would have to send it overseas? I also asked one of my many Onc doctors about the cancer markers and she said they don't do it. See what I mean, they frustrate me hugely. Because of the size of my tumour they always ask me how I am feeling and if I have any complaints they send me for testing. So I guess they are good in that way. Because I had Lobular which is hard to detect by Mammogram and Ultrasound I am already booked for my 1 year anniversary MRI at Ascot next February. They also sent me for a CT scan because I have had a sore throat for a year. They found various nodules but nothing was picked up on Ultrasound. But because my BC cancer wasn't seen on Ultrasound I just find it hard to relax about it :(  I think I just need to breathe, take a chill pill or start drinking hahaha. Nice talking to you again. I better get back to work!

  • Alyson
    Alyson Member Posts: 3,737

    Hi Fizz

    The cancer markers tests are CA 15-3 AND CA 27.29. You may actually have had them done as they are part of regular blood tests. The BRAC1 and BRAC2 tests can be done by various doctors and clinics here. But you have to have counselling before they do them. I was a candidate for them because of history of various cancers in my family and this was through Auckland. My onc type was done, I have to say, because I was part of a drug trial. Like the tumour markers they are just a guide and not reliable.Think I said that my tumour markers have never been raised at all.

    Anywa here is something to make us smile.

    image

    Have fun at work.

  • kt1966
    kt1966 Member Posts: 1,021

    Hi Alyson & Fizzdon.

    I'm done for the day re work, but have to go & collect my daughter from Ak soon.

    Fizzdon- my BC wasn't seen on imaging as well. They did FNA of the palpable lump & it came back suspicious, but then the head lab person backtracked & said it was ok.

    Luckily I decided to have a lumpectomy anyway & it came back ILC, but then had to have mastectomy because they didn't get clear margins, it was much larger than they thought & had a bit of IDC in there too.

    Quite common for ILC not to show up very well. MRI is a good plan :)

    Well, my daughter has txtd me she wants picking up- must go

    Cheers

    kt

  • Alyson
    Alyson Member Posts: 3,737

    KT if you would like to do coffee some time I am a free agent being a lady of leisure. Would love to meet you.Same with all the other Auckland ladies.

  • kt1966
    kt1966 Member Posts: 1,021

    Thank you Alyson :)

    One of these days that would be nice.

    I try not to go to Ak too often- tho I used to live there I'm over the traffic! Luckily when I pick DD up its usually from the Shore (Albany), but I will be having regular checkups at Ak Hospital- so sometime (when I'm not too tired!)

    Thank Goodness its Friday- I feel like some time off. Had pilates today & its worn me out...

    kt

  • shazzakelly
    shazzakelly Member Posts: 620

    hi everyone. Hope you are all going well. Sitting at chemo a bit bored so making the most of the free wifi. Starting cycle 16 today infusion 46. Had a great birthday party on the weekend my sister and her husband came up from Nelson and my oldest friend from Tauranga. It all got a bit rowdy and I didn't get to bed till 2 am!!!

  • kt1966
    kt1966 Member Posts: 1,021

    Hi Shazza. Hope your infusion went well.

    Great you had such a neat birthday weekend :)

    I'm having a break from cleaning (& I've just started my week off xeloda! yay) We're putting the house on the market so we can downsize & free up our weekends.

    Lifestyle blocks are lovely, but there's always something to do. Some people are coming to look over the weekend- its not officially on the market yet, but they heard by word of mouth :)

    So I'm trying to tidy up & have it looking good. Luckily my parents have been helping with the outside, phew.

    I hope you all are well. Nearly Spring :) I love longer days

    kt

  • Alyson
    Alyson Member Posts: 3,737

    image

    In a street near us.

    Spring seems to be on it's way but today it was cold. 

    I went out today for the first time for weeks. New drug seems to be working on the nerve pain thankfully.

    Hope everyone is doing OK.

  • shazzakelly
    shazzakelly Member Posts: 620

    Spring definitely seems to be on its way. What a glorious Saturday. I've been for a walk and got heaps and heaps of laundry flapping on the line. I'm sitting in the sun sipping a freshly made juice and enjoying the sun on my face. 

    Hope everyone else has a great weekend. Smile

  • midnight1327
    midnight1327 Member Posts: 1,331

    its abit like it has been all week, over cast with the sun trying to  sneak through, then clouds up about two and rains, the sun right now is making an apperance, hope it stays, enjoy your lovely day Shaza. take care, not as cold though as it has been.

  • kt1966
    kt1966 Member Posts: 1,021

    Phew! Finally relaxing after a mad spring cleaning morning :) We're expecting someone to look at the property this afternoon. 

    It sure is lovely Shazza. I'm lying in the sun right now. A nice cold juice sounds good to me. 

    Hope you get some real sun soon midnight. 

    Monday is going to be busy- onc appt in ak in the morning, then the lady from Sweet Louise is coming in the afternoon. 

    Tomorrow will hopefully be a chill out (in the sun!) day. 

    Hope you all have a good weekend 

    kt

  • shazzakelly
    shazzakelly Member Posts: 620

    Good luck with your Onc appointment KT. Who are you seeing? I have a MRI on Tuesday morning and then chemo in the afternoon so it will be a day at the hospital for me. 

    The Sweet Louise ladies are so nice. A couple of times that I have been in hospital one of them has popped into see me with a armful of magazines. I have made good use of their vouchers to Smile

  • fizzdon52
    fizzdon52 Member Posts: 382

    Hi there, I've done all my housework as well, feels good. Just went for a walk down the driveway and picked snowdrops, jonquils and daffodils. The little boy next door must have a baby lamb for calf club because it won't stop bleating. Calves next door are running around the paddock enjoying the sun and the goats in the paddock next to my bedroom just came to say hello and showed a lot of interest in my handful of flowers. I love this weather. Hope everyone is enjoying the day. 

    PS I went and saw my Breast Care nurse on Thursday because I was worried about the soreness under my arm and my swollen glands, but she says it's just the after effects of Radiotherapy and I may have a bit of cording. So that made me feel really good. 

    Go the All Blacks :)

  • kt1966
    kt1966 Member Posts: 1,021

    Thanks Shazza. I usually see Reuben Broom, have you seen him?

    I hope your MRI & chemo go ok- that's a full day. The waiting around can be a pain. 

    Fizzdon, I hope your cording resolves soon. I had that for a while after surgery, it did go thankfully. Are you in the countryside as well? 

    Catch you all later

    kt

  • fizzdon52
    fizzdon52 Member Posts: 382

    Hi KT yes I live in Ararimu (it's between Bombay and Hunua). I never thought about cording, I have been worried for weeks now thinking something was wrong. It feels like a tight wire up my arm, but the soreness under my arm and swollen glands was what worried me more than anything. I did so well through radiotherapy and that finished a couple of months ago. Then out of the blue this soreness. However she put my mind at rest - sort of!

  • shazzakelly
    shazzakelly Member Posts: 620

    KT Ruben is my Oncologist too so I've been seeing him for a year now. He's great. I was talking to a lady who is 5years with mets and sees him to. She said the great thing about him is he will never give up on you. He's always ready to try something new. 

  • Alyson
    Alyson Member Posts: 3,737

    What a wonderful day we had in Auckland just great and actually got some things done. Saw a patch of wonderful daffodils at the NcNicol House out at Clevedon DH comes from out there and we belong to the Historical Society out there.

    imageimage

    Must get on and make dinner.

  • kiwimum
    kiwimum Member Posts: 460

    Hi all

    I haven't checked in in a long time.  Agree Alyson! Such a beautiful day in Auckland today!

    I'm sitting here online listening to hubby yelling at the AB's game.  The language he is using at the ref!! Terrible!

    Shazza, you sound like you are doing well.  I'm pleased to see :)

    KT, I'm very sorry to read of your progression.  My Onc is also Rueben Broom.  You are in good hands!

    I had an appt with Rueben a couple of weeks ago re a new trial/study out.  He is changing me from Tamoxifen + 12 weekly ovarian suppression with Lucerin to Examestane + 4 weekly ovarian suppression with Zoladex.  It seems like I'm swapping one side effect for another.  I won't start my new meds until mid Oct so will see how I go.  

    I agree wtih Shazza about Rueben.  He won't give up.  He's proactive and up with all the latest studies (as evident with him calling me in to change my meds) and I think I really am lucky to have him as my oncologist!

    Fizzdon - I had quite bad cording after my MX.  I spend many months in physio and it's much better now. 

  • shazzakelly
    shazzakelly Member Posts: 620

    KiwiMum it's great to see you pop in. I had wondered how you were doing. 

    Alyson great photos it was a gorgeous day. I hope it stays that way.

    Fizzdon I had bad cording to as well as lymphadema. How ever it seems to have resolved over time. 

    Midnight I hope you get some good weather soon. 

  • kt1966
    kt1966 Member Posts: 1,021

    Good to hear from you Kiwimum. 

    I was on 4 weekly zoladex, its ok- you can put emla cream on an hour before if you don't want to feel the jab :)

    Its neat Reuben called you to try a new regimen. He seems really into research and up with the latest stuff- good to know he's so proactive & doesn't give up!

    Shazza, good to hear about the 5 year stage IV lady :) Hopefully more to come :)

    Let us know how the MRI goes...

    Fizzdon, its good you're aware of your body eg lymph nodes etc- if they don't go away you could always ask for an US to see what's going on. Only you know what is normal for you. But hopefully it is just from the rads & it will resolve soon.

    Well, the people who were coming to look at our place txtd they were unwell so couldn't come, so its happening next weekend. At least it motivated us to have a tidy up :) Now we can relax for a bit.

    Enjoy the rest of the weekend 

    kt

  • midnight1327
    midnight1327 Member Posts: 1,331

    Alyson, you and  chrissy ar providing me with some lovely photo's i am using for screan  savers,  i have her white ducks at the moment, i did have the vase of daffy's, so i will now use the garden  ones, gorgeous.

    The weather is warmer, but still over cast, not too bad today though. bit more sun peeking through.

    Kt. did you have the people look at yr property other day and were they impressed.? Hope everybody ok. xxx

    lol Kiwi Mum, i am afraid it sounds like my hubby, reg watching a  rugby or what ever game,  i am really glad at times he is only seeing it on tv, , oh come on, that was  a knock on, that ref is playing for other team,  oh B S, that was  holding on to ball etc, and its really loud, he gets so over excited and i am sure the ref would get a knuckle sammy if he were at the game. lol

  • kt1966
    kt1966 Member Posts: 1,021

    hi midnight. The people didn't come- next weekend now. 

    It's been a long day, got the fire going & will make dinner soon. My onc appt was running late, but ok. Was visited by the sweet Louise lady- she was lovely. 

    I'm knackered now & looking forward to bed already! 

    Start cycle 3 of xeloda tomorrow & have work too. 

    Hope you've all had a good day

    kt

  • kiwimum
    kiwimum Member Posts: 460

    Rest and take it easy KT.  I hope round 3 isn't too tough for you.

    I got home late tonight after my daughters netball game on the North Shore.  She got player of the day and was very proud!

    Midnight - hubby did it all over again, screaming and cursing at the Warriors on Sunday! At least the ABs won.  Those Warriors are so frustrating!

    KT - Reuben really is great.  He cares and follows up.  Don't you think he's totally OCD! The whole detail and science and clinical trial side really really floats his boat. He's in the perfect job for him!

  • kt1966
    kt1966 Member Posts: 1,021

    Hah, Kiwimum, you are right about Reuben- he checks & double checks dosages & names of meds- so great to have someone so thorough!

    (I like your new avatar)

    I'm home from work :) Time to relax for a bit, phew.

    Shazza, thinking of you & your MRI. I hope it went ok & the results are ok too.

    Take care all

    kt

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