Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

Kiwi ladies who need encouragment, but all welcome.

1…969799101102…126

Comments

  • suems
    suems Member Posts: 79

    On the topic of BRCA testing, I have "sort of" had mine done. My sister passed away from breast cancer which had been diagnosed in her late 40's. I was 54, so I didn't think they'd do it, but my oncologist filled in the initial request form anyway. I got back 2 sets of forms to complete - one for my own medical history, and one for my sister.

    Basically, apart from my own diagnosis and medical history, all they really wanted was access to our pathology records. I eventually got a letter back saying that they had compared our cancers, and decided that they were too dissimilar to do the full testing. Apparently my other sisters and nieces are at only a "mildly elevated" risk of breast cancer,

    I'm not sure if that really counts as having the testing done or not!


    Sue

  • fizzdon52
    fizzdon52 Member Posts: 382

    I find it all very interesting Suems, one day they will be able to do a simple blood test to find out of you have any cancer anywhere in your body, and hopefully a simple test to see if you have genes associated with a risk for cancer. I hope this day comes sooner rather than later. I do worry so about my daughter :(


  • nik1966
    nik1966 Member Posts: 402

    The Cancer Society appeal has raised (so far) 86k. They asked me to do a follow up photo which I will share with you to show you how natural a 8 day rinse looks

    Smile

    image

  • fizzdon52
    fizzdon52 Member Posts: 382

    Aw Nicki you look absolutely beautiful. Well done you, you go girl!!!

  • kt1966
    kt1966 Member Posts: 1,021

    Great photo Nikki :) What colour are you sporting there? Good to know you've helped raise lots of money for the appeal.

    I hope you're all enjoying the better weather. It's crazy busy up here with people heading out to the coast. I'll wait till it quietens down before I go there....

    Have a good weekend!

  • nik1966
    nik1966 Member Posts: 402

    image

    I am using Aztec Copper. I also got the pastel pink in case I completely lose my mind and have a need for pink. It's really amusing to see my husband horrified that I would even consider a pastel shade - that alone is worth the 4.97.

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Nik - you look amazing!

  • suems
    suems Member Posts: 79

    I have just had the silliest morning since I joined this roller coaster life.I had the Dreaded Mammogram just before Xmas 2014, and had a mastectomy a year ago this week. I had been told that "poor old lefty" would continue to have annual mammograms to make sure it hadn't spread to there.

    A couple of weeks ago I got a letter from Breast Screening Aotearoa telling me of an appointment, which I attended this morning. I arrived, checked in and was shown to a cubicle where I got changed into a gown. I was then called into the mammo room, and the first thing the technician said was "Have you had any problems with your breasts since you were last here?"

    Oh, boy, here we go! I flashed open the front of my gown and said "you do realise I've only got one, don't you?" She got all flustered, and told me to sit down while she checked with her supervisor. After a few minutes she came back and told me that after a mastectomy, people are meant to be taken off the breast screening list for 5 years.

    Me: "But I was told that my remaining breast would be screened annually, and that's why I'm here, isn't it?"

    Her:"Well, yes, but this appointment is for Breast Screening, not breast...um... checking. If you already have cancer, you aren't screened, but you are monitored. You are actually due for a mammogram now, but we can't do it today, because this is a screening appointment, not a monitoring appointment. You will have to get a referral from your doctor for that. Sorry."

    So I got dressed and left. I drove home, singing the Mickey Mouse song over and over...M I C...K E Y....M O U S E!!

    Fulford Radiology Ltd do all the radiology work for Taranaki, including in hospital and several local clinics.I know there have been some major problems between them and Taranaki DHB (contracts, wages, strikes etc), which culminated recently with TDHB buying Fulford lock stock and barrel. So hopefully the right hand and the left hand will be able to talk to each other!


    Has anyone else encountered the difference between screening and ...um... checking?

  • nik1966
    nik1966 Member Posts: 402

    OMG Sue. What a carry on. Seriously sometimes it's scary how these places work or don't - and we are reliant on them. I recently got a reminder for my mammogram - and I don't have any boobies.

    I have been referred to have a 2 hour group breathing class with Counties Manukau because of my shortness of breath. This is because an x-ray in June was clear, so they have assumed that I am hyperventilating (ugh hello been breathing for 49 years, I think I would know if I was hyperventilating or not). I suspect that I might be having a reaction to my hormone meds, or that something else is going on, but what would I know. Needless to say that I am not going to attend that one.

    I hope everyone is well and had a great weekend.


  • Alyson
    Alyson Member Posts: 3,737

    Oh Sue that is so stupid. Have had trouble with insurance over screening and monitoring. Not with the mammo itself. I would ask to speak to someone high up and get an explanation. 

    Hi to every one else and super big hugs. Life has been a bit overwhelming with family affairs. 


  • kt1966
    kt1966 Member Posts: 1,021

    Hi all :)

    Suems, I remember being told by my dr that I wasn't eligible for the free breast screen mammos too. I had to pay for 'diagnostic' mammos. I don't know if you can get them thru the DHB or not....

    Bummer you still have SOB Nikki. Yep, surely you do know how to breathe by now, I mean nothing has really changed in that regard I guess, so I get you'd like to know why you have it!! Sometimes I think if you query the almighty Drs opinions they put you down as anxious or neurotic when in reality you know your body & just disagree with them.... So frustrating.

    Hi Alyson, I hope your family stuff settles soon. I hope your back is going good :)

    I'm tired after work. Going out for dinner tonight to celebrate our wedding anniversary ;) (any excuse not to cook)

  • nik1966
    nik1966 Member Posts: 402

    Snap KT it's our 20th Wedding Anniversary this week as well. January must be the month for it.

    I keep bring the SOB up with my GP (get the impression that it's beyond her "scope) ad that she'd prefer my Oncologist to refer me for ay follow up tests. I am due to see Rosalie sometime in the next couple of months, so will complain bitterly then. Defo not going to breathing classes though!

  • Kruise
    Kruise Member Posts: 242

    hi everyone...oh my such a lot going on again in the 18 days since I last logged on. I've still been so busy packing and sorting that I haven't had much time to check in. One month today till we are out of our home of the past 19 years.

    Amber - welcome and sorry that at 26yo you are here too but I'm loving your attitude too :-). If you can afford it and get a good recommendation I think one of the best things I ever did for myself was going to a Naturopath/Herbalist after diagnosis. They test you for what your body is lacking in etc and help get those important levels right. I have had the BRCA test - it did take a while to get it done and then to get results. I had to go for the initial appointment before I started chemo and they put all the info into some computer Programme which tells them the % chance that you could have the BRCA gene - it has to be a certain figure before they'll continue with the testing. Anyway I must have qualified as I just had to get some extra bloods done. It came back negative though. Apparently the year before they routinely tested everyone under 40 for it but the results that were positive were very low. It is better if you are not BRCA positive for long term prognosis etc.

    Nikki - love your latest photo and hair colour. Isn't it great to feel human again after all that you went through. Donna you are brave going to grow yours out. I splash out now and go to the hairdressers to get my hair done now. It's my 'treat'.

    Hi Terre...hope you are going good. Everyone in Wellington seems very sad about Kirkcaldies & Stains closing its doors. End of an era for sure. Nice to see the sun today.

    So anyway I have had a weird thing happen this morning. I woke up bleeding...like period bleeding...after no period since Chemo nearly 3 years ago. Is that weird or what? Do you reckon I should go to GP and get it checked out? Or a blood test to see what my hormones are doing? I had one about a year ago and it showed I was in chemical menopause. I still been taking my tamoxifen daily etc.

    Hi to everyone else. Kt & Jo good to hear your updates. Alyson hope your family stuff is getting sorted. Suems had to laugh at you singing Mickey Mouse! :)

    Love to all xx


  • suems
    suems Member Posts: 79

    After the silly episode with my non-mammogram, the day got even more silly.

    Back in April/May I had radiation over the whole breast area (and therefore scar) and was warned that if the scar started to break down I should go straight to A&E. About a month after rads finished, part of the scar under my arm started to open up ( i blamed my incompetent surgeon), so I trotted off down to A&E, where they took blood tests to check for infection, then put a burn dressing on it and sent me on my way. However, the receptionist wanted me to fill in an ACC form, as she thought it sounded like a treatment injury.

    Just before Xmas I got a letter from ACC apologising for my treatment injury, and containing a form to fill in with more details on my "injury" and a complaint form if I wanted to complain about my "mistreatment".

    I forgot about it over the Xmas chaos, but someone from the ACC Treatment Injury Department (they have an entire department for that???) rang me to follow up. I told him I didn't think it was a treatment injury - more of an expected side effect. But he told me that it was an unintended consequence of treatment, and therefore a treatment injury. I told him the whole sequence of events, and that it wouldn't have cost me a cent either way, so I really didn't care. He then asked me if I wanted to formally cancel the claim. I said yes, (here's where it got surreal), so he had to get a colleague on the line to witness that I wanted to cancel the claim, and now they are going to send me a letter confirming that I have cancelled the claim!

    So, once again, I started singing the Mickey Mouse song!. How much must that whole ridiculous saga have cost the Government?

    Then I got to thinking, does this mean ANY side effect of ANY cancer treatment can be classed as a "treatment injury" and claimed from ACC?

  • kt1966
    kt1966 Member Posts: 1,021

    Hi Kruise :)

    I hear you on the packing.... I'm glad we're done for now (!)

    It'll all be worth it to get in to your new home- exciting.

    What a bugger your period is back, like who needs it now! I only had 3 months without it the first time around (chemo pause) and got it back while on tamoxifen. I guess you're probably young enough not to be menopausal naturally so that now your body has recovered its come back...

    But still a good idea to get it checked out by your dr.

    I'm glad to not have to worry about the monthly curse now I'm on chemo again, the downside is that I have no idea what libido is..... (Lucky DH is a keeper & understanding- 25th wedding anniversary yesterday!)

    Have a nice day all- I'm heading out for a walk & coffee with a friend.

  • kt1966
    kt1966 Member Posts: 1,021

    Wow Sue, you are having fun with all this cancer stuff. Crazy! I wonder what would have happened if you proceeded with the 'claim'. And so much bureaucracy....

    I'm not really looking fwd to dealing with the council re house stuff becos of all the bureaucracy & hoop jumping there will no doubt be.

    Crazy world we live in

  • fizzdon52
    fizzdon52 Member Posts: 382

    Hello everyone. Sue I can't believe what you just told us, what a joke. I had a seroma which got infected because a nurse ignored my concerns, and I ended up in hospital with Cellulitis, does that mean it should have been under ACC - weird!!! Kruise I believe your periods can come back randomly of you are on Tamoxifen, although if mine do at 55 I won't be responsible for my actions. However I would still get it checked out as Tamoxifen can affect the Uterus so we are told. Happy wedding anniversary KT and Nicki. HI Alyson :)

  • suems
    suems Member Posts: 79

    Fizzdon,

    Yes, according to the info I have here, cellulitis is not a "necessary part, or ordinary result, of your particular treatment", so it should have resulted in a claim, and possibly even a complaint!

    i must confess, I was tempted to let the claim continue just to see how stupid it could get, but then I decided I couldn't be bothered wasting my time or the Government's money.

  • fizzdon52
    fizzdon52 Member Posts: 382

    Suems I had so many things go wrong and weird things happen right from before my diagnoses (I tried to tell them 18 months before my diagnoses that I had something wrong) and they wouldn't believe me. And don't even get me started on the stuff ups that happened after my diagnoses haha! I could actually write a book. However I am trying to let it all go now as anger isn't good for recovery. I have also realised that most of the people working in the medical profession are lovely and caring people, unfortunately bureaucracy and a few idiots can ruin things, and when you are talking about health and life, the consequences can be disastrous. I wonder when they brought in all his hoo-ha about ACC and claiming in, I have certainly never heard about it - mind you they probably don't mention this at the Manukau Super Clinic because there would be so many claims :(

  • Kruise
    Kruise Member Posts: 242

    yes Suems it would have been interesting to see how far they went. Some people make "careers" out of living off ACC.

    Well I went to the docs. She told me it was absolutely the right thing to do as apparently any bleeding after a year needs to be checked out and yes especially being on tamoxifen because of the slight uterine cancer elevated risk.

    So to cut a long story short I'm booked in for a pelvic ultrasound on 2nd Feb. That was the earliest I could get in but that's ok. I did have one in Oct 2014 so they'll be able to compare results. The worst thing about those scans is having a full bladder while they put that wand thing up you!! Oh the things we go through, fun and games! Yes Donna and KT, I had heard about the chance that my period could come back on tamoxifen but I really did think I had been pushed over the 'menopausal' hill for good. Isn't it weird what the body can do to try and heal itself after time etc. You were quite young KT the first time so no wonder you bounced back quickly. I really did think after nearly 3 years it was a done deal!

  • AMaree08
    AMaree08 Member Posts: 36

    Hi ladies,

    Sorry I haven't been on her much been trying to get back into work, gym and normality. Can I just say how amazing this network is, you are all incredibly inspirational and so so supportive! 

    Feeling a bit crap today.. My last update was that I had been told I have to wait to BRCA test done to establish my treatment plan. Since then we have learnt that to get the test done and results takes up to 6 months. So based on my initial post op meeting, treatment would start close to a year after my surgery which doesn't make sense, especially when they are saying your young and we want to be aggressive. Well the training doctor who handled that meeting got it wrong. 

    So we asked some questions and made some noise. I have today been told over the phone, by the breast care nurse that my tumor was lifted from grade 2 to grade 3, I am HER2 + and I have 4 months of chemo coming up once I establish what I want to do with my eggs with the fertility clinic, then radiation treatment. 

    We all thought I was just having some radiation treatment so to be told this over the phone today very unexpectedly has been bit of a shock to the system. Hoping to get a copy of my pathologist report, get in front of my surgeon who I trust and get some answers. 

    Feeling a bit gutted about the way it's been handled but that aside its time to look forward and get in front of people who know what they are doing :)

    Hope you are all well, thank you for all your support and advice for me so far xx

  • kt1966
    kt1966 Member Posts: 1,021

    Hi Amber.

    So sorry it's all been handled so poorly & that you've found out like you have.

    Herceptin is great, a game changer for Her 2 + people. So that's something.

    You will feel better about it all once you have a plan in place. Great idea to look at fertility issues too. I hope you get to see your team very soon.

    Thinking of you

    kt


  • AMaree08
    AMaree08 Member Posts: 36

    Hi Kt

    Thank you for prompt reply. I hope once I am through this I can be as supportive to others going through it once I understand the process better.

    It's a lot to take in but looking forward to getting it done and moving on with life. 


    I trust and hope all is well with you xx 

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Amber - so sorry you have been treated so poorly. As KT said, it does get easier once you get a treatment plan in place. Treatment can be a challenge, but remember that it's temporary - it's not forever. I'm glad they're finally doing something. When I read your previous post about postponing any treatment until they had BRCA results, it just seemed insane and wrong. There's not any real science behind that right now. It can affect the aggressiveness of treatment, but we're not yet at the point where it determines treatment if that makes any sense. With immunotherapies and customised treatments based on biology coming, it will make sense, just doesn't quite make sense right now. So I'm quite glad and relieved that at least someone got it right. If you don't trust your oncologist, and if there's any way you can afford it, get a second opinion. It was the best thing I ever did for myself - switching to an oncologist who I trust.

    Hello to everyone else...work has been just full on and I have the stomach flu. Otherwise, life is good!

    Terre

  • AMaree08
    AMaree08 Member Posts: 36

    Hi Terre,

    Yes, once we found out the process involved in BRCA testing we were like, this does not make sense. Funny thing is I haven't even met my oncologist. All i have seen since my post op was a junior doctor who has clearly got it all very wrong. I think that the Breast Care nurse, who is lovely, assumed I already knew that the tumor had gone from Grade 2 to 3, was HER2+ and was definitely having Chemo, when I didn't know at all and was hearing from her for the first time. So its very confusing, I am making contact to see my Surgeon who I trust completely and then once I see fertility clinic tomorrow and have a plan with them to get in front of an oncologist who knows what they are doing.

  • nik1966
    nik1966 Member Posts: 402

    Amber, I met the Radiation Oncologist weeks before I met the Medical Oncologist (which was a week before starting chemo). Sometimes everything seems out of control and then you start treatment and you're off and it all slips into a order. Which DHB are you with?

    Nikki

  • AMaree08
    AMaree08 Member Posts: 36

    Hi Nikki

    Thats interesting to know. It will be good to get the treatment started and on the road to recovery. Just hoping it doesnt knock me to much so I can still focus on work :) Been dealing mainly through Greenlane breast clinic in Auckland.

  • kt1966
    kt1966 Member Posts: 1,021

    Hi all. Hope you had a good weekend. Sure has been hot!

    I went for a ride with DH on his m/bike for the first time in years. Was fun. Hot to wear a leather jacket etc tho. Must go for rides more often (we are toured Europe by bike years ago).

    Hope you're over your stomach flu Terre.

    How are you going Amber? I hope things are getting sorted for you.

    Keep cool if you can!

  • fizzdon52
    fizzdon52 Member Posts: 382

    Hi guys, hope you are all doing well. Good luck Amber, I have heard Greenlane Breast Clinic has a really good reputation :) KT that sounds so cool, even though I don't really like motorbikes, I must admit I wouldn't mind trying it (don't tell my son though as he wants to get one). Yesterday my two girlfriends and I decided to start our tramping adventure. We have decided this is a good way to get fit. I don't quite know why we picked one of the hottest days of the year however? So we tramped up the Hunua Ranges. Today I can hardly walk. Honestly I am in agony and my boss thinks it's hilarious. I think we might have been a bit too hopeful of how easy it would be, next weekend we are going to tramp around the Viaduct and stop off at a few bars for a rest. Anyway it's lovely here in my air conditioned office today. Take care everyone, Donna xxx

  • kt1966
    kt1966 Member Posts: 1,021

    :) I love it - tramp around the viaduct! Sounds nice :)

    And a cool bevvie or two would be great in this weather...

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.