Hi I have just been diagnosed

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ChezaH
ChezaH Member Posts: 549
edited February 2020 in Newly diagnosed
What a shock on the 7th Feb to find out the news I had my surgery on the 14th Feb, soooo lucky to be done so quick, not a lot of time to dwell on things. I have been told I have a grade 2 IDC and only 1 lymph was involved. I have seen the radiologist oncologist yesterday and lucky I had joined this group thanks to the BC nurse, and had done some research before I went to the appointment. Wow the charges. I did ask about public for this bit and was told that you have to wait, don't get a specialist etc etc,like to know more from anybody who has had it done on the northern Gold Coast. I asked her about the survival rate for my age, and as I had surgery it was 82% , with chemo only another 2% hormone therapy is 3% at 5 years,   My question is are all the side effects worth it to have chemo if that is suggested to me, as I am not a well person anyways, have other health issues.
I see the chemo oncologist on Tuesday, then doing more research before making a decision.
Any feedback would be extremely helpful. Thanks for taking the time to read this, and good luck with your journey.
what are the show popular tags mean ?? at the bottom
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  • AllyJay
    AllyJay Member Posts: 948
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    For me, the percentage thing iwas this. If I didn't have the chemo, and the cancer returned..would I live and ultimately die with the question of "what if...what if I had taken it and I was one of those 2%?" Also 2% is either a significant number or it isn't...depends how important the situation is. If you passed a shop with stickers of "Sale Sale...everything is 2% off"  you would probably not be impressed. If, however your child attended a large high school with 1000 pupils and a crazy gunman entered and shot and killed 2% of the pupils...that would be 20 children. Suddenly 2% seems inordinately large....especially if your child was one of those 2%. Each of us is different, but for myself, I couldn't live with that uncertainty that I had done all !00% not 98% that I could to prevent a return of this bastard of a disease. We only get one bite of this poisoned apple.
  • Dory65
    Dory65 Member Posts: 323
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    Berchel14,

    "Your surgeon or medical oncologist may talk to you about gene profile tests such as Oncotype DX, Prosigna, EndoPredict or MammaPrint. "  https://www.bcna.org.au/understanding-breast-cancer/treatment/surgery/breast-cancer-pathology/

    Depending on your pathology report and other factors, might it be worthwhile doing one of the genomic assay tests?
    I did Oncotype DX. The result indicated that chemo was of less than 1% benefit and not worth the side effects for me.

    Also, check again re public vs private. You can save your money and go public from now on for radiation therapy and medical oncology etc. I went through the public surgery, radiotherapy and now medical oncology system. My surgeon does both public and private work. She leaves one day per week free for her public patients, so I did not have to wait long after my diagnosis. 10 days.

    All the best. x


  • Afraser
    Afraser Member Posts: 4,388
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    Dear @Berchel14

    Some specific advice in light of your other health issues would be useful. My breast surgeon, when I asked about having chemo, properly referred me to my oncologist (who was in no doubt!). However my surgeon did say that ‘even if it only adds one or two points to increase the chances of non-recurrence, that’s important’. BUT it does depend on what your other health issues are and what chemo may (or may not) do to exacerbate those issues. So worth knowing what chemo regimes are being considered, why those and what impact they may have on you at this time, before making a decision. Best wishes. 
  • ChezaH
    ChezaH Member Posts: 549
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    Thank you

  • kezmusc
    kezmusc Member Posts: 1,544
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    Hi @Berchel14

    Just a quick note on public vs private.  I'm not in your area (I went to Mater Springfield) but I did my chemo and radiation in a private hospital as a public patient. A lot of doctors work in both sectors.
    I saw the same consultant for every treatment as I would have seen paying privately. You absolutely get a specialist consultant oncologist and radonc and there was no waiting time.
    I remember seeing people pay their accounts for radiation and nearly choked overhearing the prices. 

    Deciding on chemo or not is never easy.  Have a chat to the onc and see what they say then you will be in a better position to decide.  I think when nodes are involved they will generally recommend it.  I had 5 nasty ones so chemo was pretty much a must do and the added benefit was %11.   They'll take into consideration your age and any other health problems also.  Ask a zillion questions lovely.

    xoxoxoxoxo
  • kamada
    kamada Member Posts: 70
    edited February 2020
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    Just a comment on those overheard prices. I have gone private for both chemo and radiation to get the Dr I wanted and for convenience. My chemo didn’t cost me anything because of Private health cover and my med. oncologist works on a no gap basis. Radiation is costing me though.  I have to pay the full amount up front (which is probably what you heard quoted and made you nearly choke @kezmusc 😳😂) but the 80% Medicare rebate is put in my acct overnight which brings it right down. All up 6 weeks of radiation is costing a bit under $3000 but we chose that to minimise the inconvenience and stress of hours of travel each week and hopefully minimise any fatigue. Hope that gives some help with making a decision @Berchel14. Hope you are able to find a good balance between your treatment and the limitations of the lupus. Btw 3 weeks in to radiation and no fatigue worth mentioning. Exercising is a big help there  😘
  • jennyss
    jennyss Member Posts: 1,970
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    Dear @Berchel14,
    Great info above, and I'm sure there will be more valuable advice, so I will just say

    from jennyss in Western NSW
  • ChezaH
    ChezaH Member Posts: 549
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    thank you

  • ChezaH
    ChezaH Member Posts: 549
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    kezmusc said:

    Hi @Berchel14

    Just a quick note on public vs private.  I'm not in your area (I went to Mater Springfield) but I did my chemo and radiation in a private hospital as a public patient. A lot of doctors work in both sectors.
    I saw the same consultant for every treatment as I would have seen paying privately. You absolutely get a specialist consultant oncologist and radonc and there was no waiting time.
    I remember seeing people pay their accounts for radiation and nearly choked overhearing the prices. 

    Deciding on chemo or not is never easy.  Have a chat to the onc and see what they say then you will be in a better position to decide.  I think when nodes are involved they will generally recommend it.  I had 5 nasty ones so chemo was pretty much a must do and the added benefit was %11.   They'll take into consideration your age and any other health problems also.  Ask a zillion questions lovely.

    xoxoxoxoxo

    Thank you
  • ChezaH
    ChezaH Member Posts: 549
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    kamada said:

    Just a comment on those overheard prices. I have gone private for both chemo and radiation to get the Dr I wanted and for convenience. My chemo didn’t cost me anything because of Private health cover and my med. oncologist works on a no gap basis. Radiation is costing me though.  I have to pay the full amount up front (which is probably what you heard quoted and made you nearly choke @kezmusc 😳😂) but the 80% Medicare rebate is put in my acct overnight which brings it right down. All up 6 weeks of radiation is costing a bit under $3000 but we chose that to minimise the inconvenience and stress of hours of travel each week and hopefully minimise any fatigue. Hope that gives some help with making a decision @Berchel14. Hope you are able to find a good balance between your treatment and the limitations of the lupus. Btw 3 weeks in to radiation and no fatigue worth mentioning. Exercising is a big help there  😘

    thank you appreciate all the advice I am getting It blows your mind a bit LOL
  • eightdays
    eightdays Member Posts: 27
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    Thinking of you and hoping for the best as you navigate all this. Eightdays.
  • HunnyB
    HunnyB Member Posts: 10
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    Hi @youngdogmum
    I had my first appointment with Icon at GCUH this week. Fortunately I don’t need chemo just 3 weeks radiation. I do have private health which will cover me for radiation. I didn’t know Gold Coast Private was even an option for radiation which is odd because that’s where my surgery was done. After your experience with Icon & visiting the dept at Gold Coast Private, if you had the choice would you still go to GCUH. Sorry to ask this but I’m still very overwhelmed by it all.
    xx
  • youngdogmum
    youngdogmum Member Posts: 250
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    @HunnyB if it’s several thousand dollars definately not... a few hundred maybe? GCUH was fine otherwise. If you’ve got no out of pocket which is quite unusual as private health doesn’t cover all of it from what friends have told me, then sure go to the private :) 
  • youngdogmum
    youngdogmum Member Posts: 250
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    Basically what I’m saying is there is little to no difference except sitting about waiting a bit longer. If this is going to annoy you and you can afford the out of pocket gap if there is one, head to the private. If not, go public, same treatment same radiation therapists. I live really close to GCUH so getting to and from isn’t an issue but if you have to travel from Tugun for example to then have to wait maybe 45 minutes a few times, private makes more sense. Most of my waits were less than 10 minutes :)@HunnyB