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Overwhelmed by what I do not know..

FernwehFernweh Caboolture, BrisbaneMember Posts: 49
edited January 17 in Newly diagnosed
I have been diagnosed late last year, by chance, during a routine check up.
I am 36 and what was originally thought to be a 1cm cancer, apparently turned out to be a 8cm cancer with lymph nodes affected! 😒
I am having a mastectomy next week and then radiations and chemo (pretty scared about what to expect, but trying to take it day by day) I just don’t know what to do practically… I read people talking about cancer nurses and was wondering what they do and how do I go about accessing their services?

I want to be prepared and I am scared to miss out on great support just because I don’t know it exist or how to access it. 

I live in North Brisbane, but have no family in Australia (except my partner) and just very recently moved to the area, which is fine as we are not very social, but grateful if there is anyone local that wants to virtually connect.

❤️

Comments

  • AfraserAfraser MelbourneMember Posts: 3,850
    Welcome! I am sure you don’t want to be here but it’s a friendly place and people are happy to share their experiences and tips for getting through it all. It’s worth remembering that cancer is a collective noun! All of us have our own variations and differences, what one experiences doesn’t necessarily apply to another. But we do all know what it’s like and empathy is an important factor.

    The mastectomy is usually pretty straightforward and often not very painful. Fluid drains are a bit of a pest and time with them can vary a lot. I didn’t have radiation so can’t advise but chemo is a bit of an unknown until you start. I was lucky, had few reactions and worked throughout, others have a much tougher time. You might want to plan for any hair loss. Many find it easier to shave their head, or cut their hair very short, to minimise the falling out process (usually a couple of weeks after starting chemo). Your scalp
    may start feeling uncomfortable too, very common. I chose to wear a wig but many get creative with scarves or just embrace the skin! 

    I did see a counsellor for a couple couple of months and found it invaluable. Everyone is, quite rightly, focussing on your physical issues but the mental ones (not necessarily depression but often confusion, what should I be doing/not doing, what’s happening to the life I planned?) are often significant. I found an experienced other (not a friend or partner) was terrific in helping me clear my thoughts, and get on a new (and better) way of thinking. Your doctor may provide a referral (worth getting a regular GP for the duration) or a Breast Care nurse. I didn’t have one of the latter - some find them wonderful, others not so much - but the senior oncology sister where I had chemo was super smart and very helpful. 

    Try not to overload yourself at the start - this stuff takes some getting used to. Day by day is the way to get through. Let others know what assistance you want and need and also what you don’t need!! Even those near and dear sometimes have absolutely no idea what to do and need a little guidance from you! 

    Best wishes. 
  • gumnutgumnut far north coast NSWMember Posts: 658
    Hi @Fernweh
    I live just over the border in the Tweed area but as you are in Brisbane you will possibly be going to one of the major hospitals in Brisbane and they will most likely link you with a breast care nurse when you have your first visit.
    From what I understand there are some excellent hospitals in Brisbane and I am sure there will be groups that you can also join if you wish to - this information will also be available at the hospital or through your breast care nurse.
    Otherwise you can call (or go online) to McGrath https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/ to find your nearest breast care nurse if you wish to. 
    Just take things one step at a time, there is plenty to think of and do. You may find that it is helpful to take someone with you to appointments as it can be a bit of information overload and often it is hard to remember all that is said.
    @Afraser provided some very good advice above  :)
    Perhaps if you do another 'New Discussion' titled something like 'Looking to connect with anyone in the North Brisbane area' you might get some connections
    Take care, best wishes  <3<3
    ps I found MooGoo products lovely to use when going through chemo
  • Julez1958Julez1958 SydneyMember Posts: 346
    Hi @Fernweh
    it is true that at first the information if overwhelming.
    I was the first in my family and friends to be diagnosed with breast cancer although I knew of people who had it that were slightly removed including friends of my sister and friends of friends.
    My GP gave me  the diagnosis and booked me in with a breast cancer surgeon two days later, her best advice was to take my husband to the first appointment with him as I would likely not take everything in.
    I actually spent most of the appointment having an “ out of body” experience - like it wasn’t really happening to me.
    I went through the Private system here in Sydney and ended up having a double mastectomy with radiotherapy ( no chemo) , DIEP flap reconstruction and now on hormone therapy.
    I am 63 and everyone’s journey is different - there is a lot of info on this website including fact sheets, podcasts and of course this wonderful forum where no question is ever too silly,
    You could ask to join the young women’s private group on here ( see below) as you will have some specific issues as a result of your stage in life.
    As others have said, take it one step at a time , and remember we have one of the best health care systems in the world .
    Take care.
    🌺
  • FernwehFernweh Caboolture, BrisbaneMember Posts: 49
    Thank you everyone for your lovely messages. I have spoken to a nurse today before my medical and she gave me some very good information.. definitely feel better on that front. I am also going thought the private system here and the team has been great so far.

    @gumnut I lived in Pottsville for 3 months late 2020, while making my way up here. We loved it! 

  • Cath62Cath62 Brisbane Member Posts: 762
    Hi @Fernweh, I live in Brisbane (northside)  so if you want a local and virtual contact please feel free to email me. You can do that via my profile and the email icon. I was a private patient too. 

    I was diagnosed in 2020 during lockdown. Aggressive cancer cells grade 3 but early breast cancer. I had a lumpectomy and wide lobal excision. 2 lymph removed, 4 months chemo, radium and now tamoxifen. I also have the brca gene test but it was negative. It sure is a ride and so overwhelming but a treatment plan helps and once treatment starts it feels a bit better because something is happening. 

    In April I will be 2 yrs from diagnosis. I am well and managing but I get a bit tired and a bit of brain fog on occasion. 

    So good you reached out on this site. Everyone is helpful and so supportive.  There is a group who meet at Strathpine but most were 10yrs on and don't really talk about breast cancer and they were also much older than yourself but they were nice ladies. There is a young womens group in here too so you may want to join that.

    Good luck and please contact if you want to chat.
  • FernwehFernweh Caboolture, BrisbaneMember Posts: 49
    Thank you very much @Cath62. Interesting re the link between melanoma and breast cancer.. would love to know more after this initial stage is over.
  • Keeping_positive1Keeping_positive1 Member Posts: 381
    I also was diagnosed with melanoma in the March then had ultrasounds to see if in anything suspicious in lymph nodes at that time, but results came back good.  Then in November of the same year i was diagnosed with breast cancer and already in lymph nodes (this is how quickly it can travel) my doctor was completely surprised!  Some others on this forum have had the same regarding melanoma then breast cancer following.  
  • Cath62Cath62 Brisbane Member Posts: 762
    Hi @Keeping_positive1 I had 3 melanoma over a period of 12 years prior to breast cancer and my 4th Melanoma 12 months post active treatment. My message about melanoma is get your skin checked yearly.

     Treatment of melanoma is surgery initially and if caught early that is generally the only treatment. My 4th Melanoma was found in November and was caught early and I have an 8 cm scar as a result.  It is on my right bicep- same side as my bc. 
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