Newly diagnosed

TinaW
TinaW Member Posts: 153
edited October 2016 in Newly diagnosed

Hi

I'm 41 and was diagnosed with breast cancer a couple of days ago.  I'm waiting to see a surgeon and its all a bit unreal at the moment.  I live at Mount Tamborine and would love it if anyone can offer any advise as to how the public system is here on the Gold Coast.  I do have private but the out of pocket expenses are so high that I want to try public first as it would just be another additional worry.

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  • Casjsa
    Casjsa Member Posts: 181
    edited March 2015

    Hi Trina,
    I'm Cas, I live down on the Gold Coast at Arundel (the Helensvale end).  I'm 53 and I was diagnosed with breast cancer in early October.  I nearly had heart failure at the cost of one surgeon and his cronies.  Fortunately I was recommended a different surgeon by a family member who is a citologist (medical scientist).  I went to Dr John Gault who is at Bundall.  He was half the price of the other surgeon I saw.  I was operated on at Pindara, it wasn't horrendously expensive, I have top hospital with Medibank Private and only $250 excess.  I'm a student so most of my specialists have bulk billed me so no out of pocket.  I know that no one tells you these things you just have to figure them out along the way.  You can email me if you like and I'll tell you what I know so far.  I've had my mastectomy (one side only), had the CT scan, bone scan and I'm just getting ready to see an oncologist about chemo.
    My email:  casjsa@****

    Cas xxx

  • Ammo4
    Ammo4 Member Posts: 21
    edited March 2015

    Hi Tina. I am 45 and a stay at home mum with 4 children aged 14 down to 6. So i can certainly feel your pain with the expense of it all. I was all set to go back to work to help out now my youngest at school but that will have to wait now. We were told to wait in the waiting room of my surgeon while an appointment was made for my head to toe bone scan and mri. The receptionist couldnt tell us wot it was going to cost and i said to my husband not knowing the cost waz more terrifying than the actual cancer. In the end she did find out and it was under $200 as she arranged for us to only pay the gap thank goodness. My surgeon bulk bills which helps and i have Medibank Private. Paid $500 excess for my mastectomy and lymph node removal. Have since had another surgery to put a port in and paid nothing. Just had 2nd dose chemo and no bills and they gave me lunch and morning tea. Dont be afraid to ask questions aboutcost, my medical team are always happy to discuss. Hope this helps. As if we dont have enough to worry about. Wishing you all the best x

  • Ammo4
    Ammo4 Member Posts: 21
    edited March 2015

    Hi Tina. I am 45 and a stay at home mum with 4 children aged 14 down to 6. So i can certainly feel your pain with the expense of it all. I was all set to go back to work to help out now my youngest at school but that will have to wait now. We were told to wait in the waiting room of my surgeon while an appointment was made for my head to toe bone scan and mri. The receptionist couldnt tell us wot it was going to cost and i said to my husband not knowing the cost waz more terrifying than the actual cancer. In the end she did find out and it was under $200 as she arranged for us to only pay the gap thank goodness. My surgeon bulk bills which helps and i have Medibank Private. Paid $500 excess for my mastectomy and lymph node removal. Have since had another surgery to put a port in and paid nothing. Just had 2nd dose chemo and no bills and they gave me lunch and morning tea. Dont be afraid to ask questions aboutcost, my medical team are always happy to discuss. Hope this helps. As if we dont have enough to worry about. Wishing you all the best x

  • Casjsa
    Casjsa Member Posts: 181
    edited March 2015

    Hi ammo, can I ask where and who you went to for chemo please?

    Cas

  • Ammo4
    Ammo4 Member Posts: 21
    edited March 2015

    Sorry i did mean to mention that but forgot. I am in country South Australia and have to travel to Adelaide for appointments and chemo. Not much help for you sorry but feel free to ask me anything. Happy to help.

  • Casjsa
    Casjsa Member Posts: 181
    edited March 2015

    Oh, true, that is a bit far away for a day trip :)  I know that the oncologist assigned to me will bulk bill my appointment/s with him and I think my Medibank insurance will cover the actual chemo.  I just hope it doesn't go on for 18 weeks like I have been reading of other people. I'm not having radiation thankfully.  How long is your chemo scheduled for?  How are you coping with any side effects if any?  Did your hair start falling out just before the second round?

  • Casjsa
    Casjsa Member Posts: 181
    edited March 2015

    Oh, true, that is a bit far away for a day trip :)  I know that the oncologist assigned to me will bulk bill my appointment/s with him and I think my Medibank insurance will cover the actual chemo.  I just hope it doesn't go on for 18 weeks like I have been reading of other people. I'm not having radiation thankfully.  How long is your chemo scheduled for?  How are you coping with any side effects if any?  Did your hair start falling out just before the second round?

  • Ammo4
    Ammo4 Member Posts: 21
    edited March 2015

    Yes 2 hours there and 2 hours back. Eespecially annoying for a 5 minute checkup. My oncologist charged over $200 for initial consult but i only paid the gap. I had my s econd dose of chemo Thurs and had apptment with him before i had it and didnt have a bill. I am coping much better this time around. They give you good meds for the following 2 days and i can also take Pramin after which helps with nausea. I havent had to take Pramin this round yet. First dose i didnt cope so well but i also had surgery the day before to put port in so was prob feeling effects of that too. I dry reached a bit but the other end was the problem. I tried to tough it out but ended up a blithering mess and rang my onc nurse who then got my onc doc to ring me. All it took was two Gastro Stop tablets from chemist they workked like magic. Sorry if this is too much info but wish i had known makes life so much easier. I have 4 big doses (sorry dont even know the technical name yet im still a bit overwhelmed with it all) once every 3 weeks. Then not so strong doses once every week. Followed by 8 weeks of daily radiation mon-fri in Adelaide. I will have to stay in Adelaide for that as too much driving :( I have had single mastectomy and after treatment has finished i am having other one off and having both reconstructed all at same time. Wel i am hoping anyway as i have no idea of the cost involved yet. Just coping with one step at a time. As for my hair doc said 2 and 12 weeks and he was spot on. My initial blog was on this as i had to wear a hat last Monday and needed some sympathy. Have a read if u like, the responses really helped me this week. I found the nausea much like morning sickness and need to eat a bit of toast in a hurry to stop it or salty crackers like Saladas. Fear of the unknown is pretty scary  but treatment and support is so much better these days. And this website is amazing. Any more questions ask away Im not much ahead of you with my treatment. Anne-Marie X

  • Ammo4
    Ammo4 Member Posts: 21
    edited March 2015

    Sorry forgot to say my "not so strong doses" once a week for 8 weeks then daily radiation for 8 weeks.

  • Casjsa
    Casjsa Member Posts: 181
    edited March 2015

    Oh this is exactly what I need to know.  I have Gastro Stop in my cupboard already.  I don't know what morning sickness is like so I can't relate to that.  I didn't have one second of morning sickness in a pregnancy that went for 11 months (was overdue 1 month). 
    Oh, so it sounds like you have about 12 weeks of chemo?
    Did they find any cancer in your lymph glands and did you have to have them removed?  Mine were completely clear and nothing on any other CT scan or bone scan.  I can just about cope with 12 weeks and I hope they start at the beginning of December.  I want to be out of oncology by March. 

    I don't care about the hair, I just need to schedule uni and not have to work chemo around uni or uni around chemo.  Uni is my goal and my leveller and everything works around it (including oncology) :)  I'm on the last few units of my Bachelors degree now and I think I can maintain my levels through Chemo as long as I have a few days of feeling ok inbetween infusions.  I'm doing feature writing so most of it is research and debates in Australian history, more research....meaning that I don't have to do face to face interviews with people a lot.

    We will have to keep in contact.  I'll let you know how my chemo is going when I eventually get there.  I'm not booked to see the oncologist until Nov 22 because I have two weeks of intensive workshopping with a publication that I write for this week coming and the following week (can't wait).  Let me know what happens to you.  I'm interested and I'm here to listen and learn (for me, not for publication).
    Cas x

     

  • Ammo4
    Ammo4 Member Posts: 21
    edited March 2015

    You sound like you have a great attitude so you are half way there. Good luvk with your studies and hope you can fit it all in. I was hoping to resume my acvounting studies and am about to look into how to get back into it. May asxwell do something to keep my mind occupied now that i cant get a job. I realky enjoyed it as boring as accounting is. I prob  shldnt tell u bout my lymph nodes as nothing showed up in all my mammos, ultrasounds and scans. After my mastectomy they took 33 lymph nodes from my affected breast side. The surgeon then visits with detailed pathology results and said 9 nodes were cancerous. At least they are all gone now. That is why i am having a good dose of chemo and radiation and both surgeon and onco are extremely positive that they have got it all. Dont let this worry you i only told you cos u asked and it is not so scary it can be treated. Good luck with your workshopping something you can look forward to. Will be thinking of you and will be nice to share storiesand im always here for more questions  x

  • Ammo4
    Ammo4 Member Posts: 21
    edited March 2015

    You sound like you have a great attitude so you are half way there. Good luvk with your studies and hope you can fit it all in. I was hoping to resume my acvounting studies and am about to look into how to get back into it. May asxwell do something to keep my mind occupied now that i cant get a job. I realky enjoyed it as boring as accounting is. I prob  shldnt tell u bout my lymph nodes as nothing showed up in all my mammos, ultrasounds and scans. After my mastectomy they took 33 lymph nodes from my affected breast side. The surgeon then visits with detailed pathology results and said 9 nodes were cancerous. At least they are all gone now. That is why i am having a good dose of chemo and radiation and both surgeon and onco are extremely positive that they have got it all. Dont let this worry you i only told you cos u asked and it is not so scary it can be treated. Good luck with your workshopping something you can look forward to. Will be thinking of you and will be nice to share storiesand im always here for more questions  x

  • Ammo4
    Ammo4 Member Posts: 21
    edited March 2015

    Oh i forgot also to say that when i had my port surgery i stayed overnight and my overnight nurse was wearing a headscsrf and said she has breast cancer with about 3 doses to go. She said the only time she had off work was when she  caught shingles. I think she is amazing and think of her when i feel a bit down.

  • Ammo4
    Ammo4 Member Posts: 21
    edited March 2015

    Oh i forgot also to say that when i had my port surgery i stayed overnight and my overnight nurse was wearing a headscsrf and said she has breast cancer with about 3 doses to go. She said the only time she had off work was when she  caught shingles. I think she is amazing and think of her when i feel a bit down.

  • MaureenTeresa
    MaureenTeresa Member Posts: 3
    edited March 2015

    Hi Tina,

    I was diagnosed at the end of October and I live at Logan Village. I am having treatment as a public patient at the P.A. I just had surgery last Friday and I am waiting for my pathology results. The medical staff have been great and I have no complaints. Perhaps you could ask for a referral to the P.A.