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Is there anyone under 30 in Perth recently diagnosed with bc?

AshleyAshley Member Posts: 5
edited November 2019 in Newly diagnosed
I’m 27 and I’m getting treatment in Perth. I’ve been diagnosed with stage1 grade3 HER-2 positive breast cancer in July this year. (There is no family history.) I had surgery and just got first chemotherapy with paclitaxel and herceptin. I still have 11 more weekly chemo to go and I feel quite lonely being one of the very few bc patients under 30. It’ll be nice to talk to someone going through similarly difficult time at the moment as young women with bc may share different difficulties to the majority of the others. 
Please leave a comment if you are in 20s or early 30s with bc! 
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Comments

  • CRMCRM MelbourneMember Posts: 67
    Hi Ashley, I'm sorry that you have to go through this at such a young age.  I'm 32 and in Melbourne, also diagnosed stage 1 in July this year.  My cancer was ER+ PR+ so thankfully I have avoided chemo but I do know the awkward feeling of being the youngest person in the waiting room!  Wishing you all the best with your treatment xx 
  • youngdogmumyoungdogmum Gold Coast Member Posts: 247
    edited November 2019
    Hey Ashley! I’m 27 and finished treatment in September! I’m in Qld although I followed a girl on Instagram who was 25! She’s the youngest in Perth ever treated at RPH apparently. Her username is Samantha.roza and I believe she was her2+ as well! She has had a really hard time but I’m sure she would be more that willing to meet up with you, us youngens tend to stick together!

    I was stage 2, grade 2 lobular er/pr+ but no her2.. diagnosed February this year, I had a mastectomy first, then did AC and Palitaxel total 8 rounds over 4.5 months and then 5 weeks radiation. I’m now using zoladex and letrozole for my long term endocrine therapy. 

    Chemo was the hardest thing I’ve ever ever done and I haven’t had an easy life to be honest so that’s saying something. You WILL get there!!!! Trust me. I did not think I’d be here in November looking back at the worst of it in July sobbing. It is NOT easy and no one else except my husband and mother in law understand (and my two fellow breastie girlfriends) 

    There are alot of issues that the older ladies simply don’t understand. It’s no offence to anyone on here but it’s true. We’ve had ALOT taken from us this young and I hold anger about it still, but am slowly moving forward with my life. 

    I had two friends during my treatment similar age which really really helped, one was in Sydney and one at the same hospital as me. We all had different subtypes of BC!

    Feel free to reach out to me on Instagram. There’s a big community of us youngens around the world on there using #youngbreastcancer 

    I have been unable to locate anyone this young with my subtype of lobular in Australia so completely understand feeling isolated. I detest waiting rooms now after all of the staring. However I have a wonderful story - I inspired a lovely lady aged 50+ I would say to go through with chemo! She saw me and didn’t want to do it but broke down in tears when she saw me. 

    Ive posted a fair bit about my treatment this year on this site so have a search for anything I’ve written, but I’m not very active anymore, part of my trying to move forward and live my life now. 

    Take care xx 
  • youngdogmumyoungdogmum Gold Coast Member Posts: 247
    @Ashley so you see the reply :)
  • AshleyAshley Member Posts: 5
    @youngdogmum

    Thank you so much for your reply. It is definitely different kind of difficulty having breast cancer at younger age. I wouldn’t say harder. It’s different. Things like changed look, fertility issue, financial/job issue are main concerns but what most worries me is that I think I may never be able to get married. I’m single and I know I will have to confront with more problems when meeting someone in the future, such as opening up about my cancer, my huge scars, uneven boobs, and the fact that I’m quite likely to get recurrence and possibly infertile. I already gives me headaches thinking about my life after treatment. 

    On the other hand, cancer patients with young children would find going through treatment, working and parenting at the same time extremely challenging. Mums are amazing. 

    I’m lucky enough to have work to go back to though. It’s my dream job and currently this is the only thing I look forward to. 

    I just had my second round of chemo and I feel horrible but with my parents’ support, I’m trying to stay positive. 

    It may be emotionally challenging to put life back together after treatment finished. Please don’t forget that you are a strong person. You have overcome effing cancer. Whatever comes in life from now, how much worse can it be? I do think it’s unfair and I have been depressed but I believe I will be a much stronger person after this. Keep in touch xoxo.

  • AshleyAshley Member Posts: 5
    @CRM
     
    You are so young too. I go to oncology department with my mum and everyone thinks she is the patient lol. 
    I asked the nursing staff if there are any young cancer patients here but it sounds like there is no young female patients at the moment. How lonely? 
    My friends aren’t helpful either. Most of them are too immature I stopped talking to them after cancer. After hearing some ridiculous words from people I thought we were friends (words like you make me depressed stop dumping your emotions, can you not feel your nipple anymore?, you’re gonna be fine it’s not terminal illness, you have short hair anyway so hair loss won’t make much difference, etc.), I stopped hanging out with people other than my parents. I feel very lonely but I’m too scared to hear easy, careless words. 
  • AshleyAshley Member Posts: 5
    @CRM

    I’ll stay strong like you. 
  • youngdogmumyoungdogmum Gold Coast Member Posts: 247
    edited November 2019
    @Ashley 100% it's different just as you say...this is a generalisation of course but assuming a 55 y.o has been in the workforce for ~ 25 years, he/she is likely to have a small mortgage or nothing left at all, a decent superannuation balance and be in a position to live off their partners income or savings they may have. Note to older readers I said generalisation! I realise not everyone in Australia is in this position...

    Us in our 20's... well, we're all just trying to enter the ridiculous housing market Australia has become and if we had any savings for a deposit they are likely to be partially used up during treatment. 
    There is also discrimination in the workforce to consider after treatment, something I feel I was recently a victim of.
    I was eligible for a measly $98 a week from Centrelink, all because my husband earns a whopping (note sarcasm) $850 a week after tax. I am fortunate I had income protection insurance and took that route after learning Centrelink give you basically zero. 50% of my husbands income went to rent each week.

    I am glad to hear you have your parents; I didn't have any family support during treatment but thats my sad little life story so we won't go there. My husbands family were amazing but they are in the UK.

    Friends are hit and miss...I find myself not bothering to reach out anymore almost as proof if they don't contact me, they don't give a shit. They all seem to think everything is fine and dandy now treatment is done, despite me constantly saying there will always be a risk of recurrence and statistically I won't make it to old age like you all.

    Fertility and body image is difficult isn't it; I have a lot of guilt I have taken my husbands chance away at becoming a father...did you have egg harvesting discussed with you at all before chemo? I completely sympathise about your scarring etc and admit I have that easier than you, being in a relationship. 

    Did you reach out to Samantha.roza at all? Another very vocal young BC patient is named Sofie, she's in Brisbane so we've kept in close contact but never met in person, she was 24 at diagnosis....however disclaimer she has just posted a pregnancy so be warned if you're not ready to see that! I find it comforting seeing her instagram though because she is now 12 months post treatment and its inspiring to see where we can head from here. 

    You can ask your breast care nurse or McGrath nurse to contact their colleagues around Australia and see if anyone else your age is currently getting treatment. Honestly having my two pals going through it all at the same time was incredible. Just having someone to text and cry with about losing hair etc who is experiencing it right then and there really helped...however its all still pretty fresh to me so if you can't find anyone and need that person, we can connect on FB/text or whatever 

    Exercise helps a lot for physical and mental symptoms during chemo. I walked my dog 3-5km each day and also started weight training and kept up jogging; I figured if I achieved nothing else that day except walking my dog, well I achieved that. To be outside seeing trees, water etc and then binge Netflix afterwards was very cathartic.

    Take care, don't hesitate to reach out x
  • arpiearpie Mid North Coast, NSWMember Posts: 3,649
    edited November 2019
    @JJ70 - can you connect @Ashley with other young women recently diagnosed in Perth?

    You also may like to join the Young Women's Group (a group where you can discuss ANY issue you'd like to raise!) . Just click on 'join' (under the pink banner, right hand side) and one of the mods should welcome you to the group. @InkPetal may be able to help you too.
    https://onlinenetwork.bcna.org.au/group/10-young-women

    I am so sorry that some of your friends haven't been supportive of your treatment & what you are going thru.    Many of us find that our 'bullshit meter' has been lowered to almost dangerous levels - and our tongues loosened where we also may speak up for ourselves in a very forthright manner too!  LOL   The incredible thing you will find is that the friends you make after your diagnosis will be longterm friends ... whilst some of your 'old friends' fall by the wayside.  This is normal.

    If you aren't coping well with all this, please make sure you ask about seeing a counsellor or psychologist - cos this disease really mucks with our brains.  I've found the emotional side of it harder to cope with than the physical side of it.  I was lucky tho & only had minimally invasive surgery & didn't have to do chemo - so I can only imagine how you feel.  Your Oncology clinic should be able to point you to local people to help - get in early, before Xmas if you can!  You can also talk to people here as well ....  1800 500 258.

    Feel free to rant & rave on any subject on this thread - we all do it sooner or later!  xx

    Try not to stress about the future - we never know when we'll meet our prospective partners or what lies ahead for us in life .... I didn't meet my partner until I was in my mid 30s & ended up moving to NZ for 15 years!!  My husband then went thru major stomach cancer treatment 10 years ago, but even taking him thru all that, didn't really prepare me for my own experience in Jan 2018.  Always remember that your surgery, scars and treatment don't 'define you' - it is your bright personality and way of dealing with things that do - and it is SO GOOD that your parents are being so supportive of you.  Sometimes even family members have difficulty coping!   Just keep getting out & doing the things that you love doing (whilst you are up to it during chemo etc) as life goes on. xx

    It is absolutely AMAZING the crap that comes out of people's mouths who have never been thru cancer.  :(  Some will step up to the plate, but a lot just feel threatened somehow, or think it may be catchy! 

    Check out this thread (it is HUGE!) where I hope you'll get a giggle out of some of the USELESS comments made by the incredibly ignorant!!
    https://onlinenetwork.bcna.org.au/discussion/17916/is-that-right-did-you-really-say-that/p1 

    Take care, big hugs coming your way xxx
  • kmakmkmakm MelbourneMember Posts: 7,870
    I'm glad you added the note about the generalisation @youngdogmum! I'm 53, have $22,000 in super and not a small mortgage... We do live on my husband's wage, but our savings are all gone thanks to BC.

    I do feel the fertility issues the young women have with BC are a particularly harsh blow. My heart goes out to you all. K xox
  • JJ70JJ70 FremantleMember Posts: 983
    @Ashley. Have you been i touch with Breast Cancer Care WA? They run support groups and may be able to make specific connections with some younger women. Are you also interested in being put in contact with some other 20 somethings who went through BC a few years back?
  • youngdogmumyoungdogmum Gold Coast Member Posts: 247
  • kmakmkmakm MelbourneMember Posts: 7,870
  • AshleyAshley Member Posts: 5
    edited November 2019
    @youngdogmum

    Your thread almost made me cry. You get exactly what I’m feeling. I am so sorry you had to go through it all. I’m so sorry cuz I know what it’s like. And yet you reach out for me, leaving such comforting comments, sharing your story. You are such a nice and strong person. 

    The financial issue is a big punch in the face, isn’t it? I did postgraduate studies and got a decent job in June this year and was diagnosed in July. I had absolutely no savings at all. There was no other option but to ask my parents to pay for me. Although I know I’m so lucky to have parents who can help, I feel horribly guilty. I have applied for Centrelink and it’s taking them months to process. 
    My work also has income protection insurance but I was still in probational period when I was diagnosed- I wasn’t eligible. I’m glad to hear that you at least had that covered. 

    Thanks for agreeing with me about bullshit friends. Most of them really don’t give a shit and it really hurts. Yes, they all like to think everything is fine and dandy because otherwise it would make them feel uncomfortable. I tried extremely hard to justify their words and actions, thinking they must find it very uncomfortable to admit that their friend has cancer, they must be in their own hardships, they must be busy, they must have hated me, they must be... etc. (because if it’s justified, it’ll be less painful). However my conclusion was that they simply don’t give a shit and they are hopeless. What if I was in their position? I still don’t think I would’ve simply stopped contacting a friend with cancer. 
    After all these thoughts, I gave up on them. I’ve had enough and there’s no time and energy to waste anymore.

    I didn’t conserve my eggs before chemo because having surgery overseas delayed my first appointment with oncologist at public hospital here. My chemo had to start immediately. Plus, I didn’t wanna put up with hormone injections at this stage. So as the minimal protection for my eggs, I got Zoladex injection a week before chemo.

    I was going to find Samantha.roza but didn’t know how to.. I searched that nickname here but nothing came through. Can you help me find her? 

    I’d love to keep in touch with you. My name is too common it’s impossible to spot me on fb. Let me know yours and I’ll add you!

    Thank you so much and I hope the best for you. 
  • youngdogmumyoungdogmum Gold Coast Member Posts: 247
    I’ve DMd you my details :) 
  • youngdogmumyoungdogmum Gold Coast Member Posts: 247
    How are you going @Ashley??
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