Kiwi ladies who need encouragment, but all welcome.
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Happy New Year everyone.
Kt - I saw on the news tonight about the weather up North. Not much fun at all. Did this happen last year too or maybe the year before... I remember there being big storms up that way. Your poor DD - sounds like she'll be wanting to come home for sure.
We are at Mt Maunganui again. My daughter had a small 'party' here with friends before they walked down to celebrate the new year festivities down at the main beach. One girl didn't make it down there...too much to drink and not enough to eat. I had to tuck her up into a bed and let her sleep it off with a bucket beside her. I don't think she'll be doing that again in a hurry.
Rain hit us today too and it has been colder. Just went to a few shops and had a drive around Tauranga in the car but otherwise a quiet day.
Enjoy the rest of your holidays and time out with your families.
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Happy New Year everyone!
I hope you're daughter is home nice and dry now KT. How frightening for her.
We were in the City for New Year with friends from Adelaide. It was crazy! Not sure that I'll be doing that again in a hurry - at least the weather held out for the fireworks. I am back to work on the 7th so I am looking forward to the next few days taking it easy.
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Morning
My daughter is still up north, making the best of it. She went for a swim yesterday. Not sure what she's up to today, haven't heard yet.
I'll be glad when all this rain stops! This house is leaky & we have pots or buckets in 5 different spots! Crazy.
I hope you all enjoy your hols, it makes it a little hard to do stuff when the weather is so crappy- enforced rest I guess
which is probably what is needed sometimes...See you later
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Hi ladies, I read your posts every now and again - see that you are all doing ok. Hubby and I went to the States in August to meet my March Chemo 2014 group who have become great friends. We had a ball and did so much, came home exhausted. I had been battling to get a hysterectomy here after severe overgrowth on Tamoxifen, endometrium, polyps, huge fibroids and cysts. I got bumped off the list twice a week out from surgery dates, then I cancelled because our trip was too close for good recovery. When we got back I got bumped off again "the day of surgery" all gowned up and waiting for IV - got back in 3 weeks later. Finally got it done - yay. Feeling much better now after the abdominal incision has healed.
Feeling a tad pissed off at the whole system, cancer, how we get treated etc... Hoping to get on an AI when I get a date with the surgeon (just reading about each DHB and what kind of follow up you are all on in previous posts here) I'm with Nelson Marlborough and they are hopeless in my opinion. Think my surgeon follow up is in January at some time. I might just ring them or get my GP to find out - but GP costs each time which also pisses me off lol. Anyway don't see onc's now, they released me after rads even though I'm on hormonal therapy for the next decade.
It is really good to see you all doing well and stable - hope you all have had a good NY and here's to good things for 2016!
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Happy New Year everyone. Hope you had a lovely Christmas with family and friends and a safe New Year despite the weather. I have worked right through. Wow KT I'm glad your girl is okay, she certainly will remember that holiday for the rest of her life. Take care everyone, Donna
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- Hi everyone, my name is Amber I am 26 living in Auckland.
End of October last year we (my partner and I, he believes his hands saves lives
) found a lump and I remember if feeling quite big (I say that now cause after about 3 weeks it had gone down to the size of a pea.I went and saw my local GP and he arranged for me to have a fine needle aspiration. Results from that came back abnormal
I was then referred to the breast clinic. After 2 1/2 weeks I got my appointment. I had an ultra sound on the breast where I could see this black circle as they scanned over (didn't think or know much of it at this point other then that's why I was there) I had a mammogram and then saw the surgeon who when he sat down said "you don't want to be sitting in front of me at 26" I remember thinking to myself "who are you" at this point in the process I hadn't really thought it would be cancer I was trying to stay positive that because of my age it would be a cyst or if it was a tumor that it would be benign. He did the inspection and then did a core biopsy. I also went to this whole appointment by myself thinking that I would have answers to leave with instead he said to me "might be a good idea for you to bring someone with you next week just in case we are dealing with something we don't want to" looking back I reckon he knew it was cancer just needed the tests to confirm.
I was to go back a week later for the results. However the day before the appointment I get a phone call from the hospital reception arranging for me to go in for a ultra sound guided biopsy. I knew at that moment that he hadn't got what he needed and I had to wait another week before I knew what the rest results were. So I went back with my very bruised boob for round two. Using the ultra sound to guide the needle into the tumor was quite amazing. As I was now familiar with the core biopsy process i felt a bit more confident. I also had my nana there holding my hand through it
I asked the surgeon who did this procedure at the end "based on what we are looking at (pointing to the ultrasound screen) could this be cancer" understanding that they have to be careful with their answers etc. his reply was "yes, if you look at the surface of the circle it's uneven also the calcification (white dots) inside suggest it could be, however we do not know for sure until we get the tests back".
A week later, back at the breast clinic, on 2nd December 2015 I was told it was stage 1 grade 2 breast cancer, infiltrating duct carcinoma. He explained my options and we opted for a partial mastectomy at this point in time. He advised he had just had a cancellation that morning and within less then a week i had my surgery and was on my way home.
It took a month to recover from it, mainly from where they took the lymph node out to be tested which came back clear. I am pleased I listened to my body and made the time to see professionals. I am so grateful to the staff who have taken care of me, they have all been amazing.
I am now waiting for a phone call to book an appointment for the genetics test which based on throw results will establish any further surgery or what treatment path to go down be it radiation chemo etc. I am also going to see the fertility clinic once those results are in to establish if I need to freeze some eggs etc
I am open to anyone's comment, thoughts, stories who are in a similar position. I am in the unknown now waiting for more tests and specialists. In the mean time I'm just trying to get life back to normal
Love what this site is about and really looking forward to talking to you all X
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Hi Amber,
I just wanted to say hi & welcome. Sorry you have been diagnosed at such a young age.
It's all a bit overwhelming at first, but you will feel better once you have a treatment plan in place. These days there are more treatments and more tests available, which is good. Back when I was diagnosed first time around we didn't have genetic testing...
Waiting is probably the hardest thing. I hope you can move forward soon. In the meantime, as you say, try & get back to normality or distract yourself with fun things etc. Wishing you all the best.
kt
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Hi Jo!
Nice to see you again
Sounds like your trip to the States was fantastic. I'm glad things are sorted re hysterectomy, must be a relief. What a trial you had to go thru to get there tho! Our health system is far from perfect, tho when you really need it they usually provide.... I find you do need to be proactive & advocate for yourself- be the squeaky wheel.
Hope everyone's enjoying 2016 so far....here's hoping we get some better weather soon 😆
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Hi Kt
Thank you for your message
You are right I will feel better once there is a plan and there are further options in place. It is not what I expected at 26 but it is the cards I have been dealt and i feel a sense of responsibility to share my story with other young women to remind them it can happen to anyone at any age, be aware of your body and get looked at if you are unsure. Since I have shared what's happened about 20 women I know have organised mammograms they have been putting off so that's awesome.this is my new bundle of joy namedAva means life in Latin
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Hi Amber, gosh I couldn't believe it when I read your story. I was sure they wouldn't find cancer because of your age. I'm so very sorry, I have a 23 year old daughter and would hate for her to be going through this. I know you are probably feeling like the unluckiest 26 year old in the world at the moment, but you are really fortunate that your doctors listened to your concerns, as a lot of the time they don't with someone so young. Hell even an old tart like me wasn't listened to and mine was missed for years. This is a journey no-one wants go to through but honestly it does get better with time. It never really goes away, but you will find a wonderful sisterhood of other ladies who will be there for you. Your puppy sure is cute and I love her name, she will keep you busy
I'm so glad that you are sharing your story, you could be responsible for saving someone elses life you know. When I was first diagnosed I didn't want anyone to know because I was in shock. But now I tell the whole world because I figure if I can get my message out there, I might help someone else. I am pretty sure there are some organisations in New Zealand for other young people just like you who have/had cancer, have you thought about reaching out to any of them? Just a thought. Anyway, I've prattled on enough. Good luck Amber. Hi to everyone else, I hope you are all doing well now that the silly season is over - thank goodness for that, Donna xxx0 -
Hi Donna,
Thank you for your lovely message. In all honesty i feel lucky that I was in a position where treatments and options were available to me, as we know, some are not so fortunate so i am actually okay. There is a reason this has happened and if it means that based on % that by me going through this then the chance of one of my friends, or your daughter as you say,who are my age having to go through it is reduced then bring it on. It was dealt with very early and yes like you say so pleased the practitioners listened. In fact I think they have moved me faster because of my age and they have been so incredibly thorough removing any chance for errors.
Everything happens for a reason and it is now just part of the story and as you say educate and share with others to help be a previvor if needed. May I ask what radiation treatment was like for you? fatigue? did you do anything different with your diet? I am yet to find out what my follow up treatment is once I have been tested for the BRCA gene that will establish what way we go and what the new opttions are.
I have reached out this week to a young woman with breast cancer group in Auckland and I am waiting to hear back from them.. it would be great to meet others in person
Thank you for your message and yes our little Ava will keep us busy but I am lucky to have a very supportive man who loves her just as much
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Hi again Amber. With regards to radiation, I just sailed through mine. I was fortunate enough to be plastered with Mepitel film and it sure is amazing stuff. It's like gladwrap or wallpaper that they stick over the radiated area. It is supposed to stay on the whole time but they do have to replace it every now and then as it comes off with perspiration - you can even shower with it on - thank goodness. With the use of this amazing stuff I didn't get any burns, or even any pinkness. I do know another lady on here Nicki who was allergic to mepitel so couldn't use it. I think you should really push for it if you can!!! I also worked the whole way through Radiation, the worst part was trying to find a park at the hospital and the disruption to my working day. I actually started work an hour and a half earlier every day so the hour and a half it took for me to get from East Tamaki to Auckland Hospital and back again wasn't too disruptive to my job. Looking back now I should probably have taken the last week or two off work as I was very very tired after it was all over. You have a wonderful attitude Amber and will serve you very well. Sounds like you have a lovely partner as well, (and Ava of course). Anyway, nice talking to you again. I will check this site more often in case you want to talk as I clearly remember how I felt in the early days, I just wanted to talk to someone else who understood what I was going through. I was lucky enough to meet Nicki before Christmas and we hit it off, we definately all have a bond. Take care Amber, Donna xxx
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Welcome, Amber! So sorry you're here, but glad you found us. And good on you for spreading the word. I have a friend who's in her late 30s; found a lump and they refused her a mammogram because she was "too young" for breast cancer. By the time she did convince someone 2 years down the track, she was stage III. So I'm really glad you were persistent, have a good team, and you should have a good prognosis! Radiation made me tired (I had IDC, no lymph node involvement and 38 rad treatments) and I got a sunburn, but no blisters. It did peel and when it peeled, it itched. And there's no way to scratch your boob in public (or meetings) in a polite way. I didn't miss any work, but I was really tired. Once I got past the radiation treatments, I was back to normal within a couple of weeks. And I am in love with your puppy!
Jo - glad your trip was good and that your surgery finally got done. It sucks - I had a similar experience at Wellington hospital when they pinned my leg. Grrrr. So glad it's behind you now
Fizz, kt, Kruise, and all the rest (I have a horrible memory...) Sending hugs and good wishes!
Terre
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Hi Amber.
I am sorry that you're here. I was in the same position as you in October 2014, not knowing where I was going with my treatment for my surprise diagnosis. Once I started treatment (chemo & radiation for me), things got a lot better. Chemo was November - Feb 2015. It was challenging but I worked through it and only needed to have a couple of sick days off. I had 25 rads in March/April last year, and wasn't able to wear the film that Donna mentioned (allergy), so I did burn a bit. The Radiation Consultant had me in a bolus (which draws radiation to the surface - not all patients need this). The good news is that once it starts getting better it's amazing how quickly you heal - the redness was gone about 10 days after I finished treatment. Also, I wasn't at all tired - not sure if that was because I was already knackered from the chemo or not. Anyway, we had 7.30am appointments and I was at my desk working by 8.30 (Howick to Auckland Hospital and back again). My MIL also underwent Radiation (15 treatments) and few months before me and was only a wee bit tired afterwards, and she is 75. We're all different. I think that we're lucky to have so many treatment options available to us now. Anyway it's nice to meet you Amber - your fur-baby is gorgeous!
Hi to everyone else - hopefully you've all had a nice break. I have been back at work for this last week. It's difficult when everyone is at home to distract me - or maybe I just need to be less distractable! Hubby is back to work on Monday and my Daughter is back to her course. I've just got to get the boy back to school then I will have perfect peace!
Nikki
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Hi ladies,
Wow, thank you so much for your informative and supportive resonates, something special about talking to kiwi ladies. Your words are encouraging and have out me at ease regarding radiation treatment if that is something I will encounter and my guess likely to do so. I have a great job and very understanding employees who have been so supportive through all of this
just have to be patient and enjoy feeling well while I can. Yes Ava our little pup was just an idea as my partner and I get so much dog envy when we see other people with dogs and with all this we just decided life is to short... She is with my mum in the wairarapa for two more weeks until we move into a place with A backyard.
Do any of you get involved with cancer walks or anything like that? Really loving this network of communication
Bring on a healthy happy 2016
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Amber, I have done the pink ribbon walk and thoughly enjoyed it. I have also been involved in fundraising for NZBCF and the Cancer Society. Hoping to do more this year. Here's my baby Stu.
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aw awesome
I am going to do what I can this year. Awwww baby Stu love love. Thank you for sharing0 -
Stu is adorable!
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Hi everyone,
Just wondering, if anyone else has been in a similar position. I had a partial masectomy on the 9th of December. My follow up appointment was 7th January. Based on my results and that I am only 26 my surgeon wants me to have the BRCA test done. My treatment plan will then be established once we have those results. I have just found out my letter has arrived at the genetic testing place but has to wait for approval then its 60-90 days waiting list before I will get seen. Is that normal? at that rate it will be 3 1/2 months since my surgery before I establish what my treatment plan is.
Was going to go to the gym today, my first time since the surgery but feeling flat
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Hi Amber, I was never offered Genetic Testing (the BRCA test). I would loved to have been able to, it seems standard practice in a lot of countries but not New Zealand, Australia or Canada from what I can gather. To be quite honest with you I wouldn't be happy with that either. I think you should call your Breast Care Nurse. One thing I have learned since my diagnoses is the squeaky wheel gets the oil. In other words hound the hell out of them until you are satisfied!!! I can't emphasize this enough, they are human and make mistakes. If you are troubled by anything (especially a long wait) call someone. Good luck Amber xxx
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Hi Fizzdon
Thank you for your prompt reply. I think the only reason they have offered and want to get it done is because of my age? You are right and we are definitely going to do that, fingers crossed we will have some progress this week
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Hi Amber, I agree with Donna, be the squeaky wheel. I see you're ER+, maybe they can put you on hormonal treatment eg tamoxifen while you wait for the BRCA results?
I wouldn't be happy just to wait that long either. I think it's good to get the test done, but think that you should start on something in the meantime. Having said that, I'm not a Dr.....
I was just thinking of you all today. It's been a bit quiet here.
I had chemo today, plodding on with my weekly treatments. Sometimes I forget I have MBC, then someone like Holley Kitchen or David Bowie dies and it really hits home. I'm hoping this chemo (inconvenient as it is at times) keeps working for a long time and I can keep on my merry way living as if I'm not really sick! Not quite denial but somehow close.
It's great to see the sun back again. I was wondering if we were going to get a proper summer sometime
kt
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PS Stu & Ava are gorgeous
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Hi Amber, welcome to the group. I was 31 when I was first diagnosed and was refused genetic testing as I had no family history. The reason I have no family history is I'm adopted and don't know anything about my birth family. I was diagnosed again at 38 and was again refused. It took a 3rd bilateral diagnoses at 46 before they agreed to test me as I have a teenage daughter. I had to wait at least 3 months to be seen and then it takes several months for the results to come back. As it turns out I don't carry the genes, very few people do although a diagnosis at a young age does raise some flags. I think also ER+ is less likely to carry the gene it's more common in triple negative.
I'm enjoying my chemo break and starting to feel normal again. I'm not really looking forward to starting again in Feb.
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Hey Shazza! Totally off topic, but did you dye your hair? I think I read somewhere you were thinking of doing it.
I was looking at the temparary colours (8 washes) and wondering if they'd be ok while on chemo? Not that there's much for me to dye.
Let us know how you go with your Drs, Amber. Hope you get answers soon.
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Hi KT. I'm booked in for next Thursday for my colour. I'm still trying to decide what to do. I really want to go back to my natural dark colour but my hairdresser thinks that my regrowth will come back too quickly and drive me mad. Guess all will be revealed next week. Watch this space. I'm sure the temporary colours would be fine while on chemo. I'm so sick of being white/grey and I'm sick of no eyebrow
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Just chiming in here KT. I am using the 8 day wash out live colour at the moment, while I decide what to do. I've used it twice so far. Everyone loved my grey hair except or me! Now they tell me that I have more colour in my face - grey hair with freckles was not a good look. Anyway, to me, the chemicals seem to me to be less hash, and kind of fade out, so no regrowth. I stocked up yesterday on them. $4.97 from the Warehouse at the moment.0 -
I never lost my hair as I didn't have chemo, however I am going grey at an alarming rate, my long blonde locks are fast changing into grey ones haha! I have decided to embrace the grey and much to my mothers disgust grow my hair so I will probably look like a witch soon. I thought your hair looked lovely when I met you Nicki!
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Thanks Donna. I don't know, I kind of felt that I was too pale with freckles to carry off the grey hair. Lots of people have said that I look healthier, and my daughter said that I look more like Mum - I must have been looking pretty bad before lol. I'm only using the rinses because I am not sure I want to get into the whole regrowth thing again. Indecision is my middle name at the moment.
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Thanks gals
I've just got home from work.
Good to know you've had success with the temporary colours, Nikki. I figure I will stick with grey and not keep dying it once I have a full head of hair, but thought colours might be nice & help it look fuller while it's still fluff & sparse! But you never know- it depends what colour my hair ends up as.
Good for you for doing what you want with your hair Donna
I hope you have fun choosing your colour next Thursday, Shazza. I hear you on no eyebrows! And I hate having no eyelashes! (Well, only 3....) If I don't wear eyeliner everyday I look like a cancer patient....
Enjoy your afternoon
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