Diagnosed today fluke pickup

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NewBoobsPLS
NewBoobsPLS Member Posts: 87
edited February 2020 in Newly diagnosed
Hi all, Just reaching out to get recommendations on best place to go for treatment.
Diagnosed today after getting fine needle biopsy on Monday. Stage 3 5mm. Core biopsy and fine needle lymp nodes today checked. I had a CT scan under contrast which came back clear, pffeeeew. Getting results Monday from core biopsy. Where is the best place to get chemotherapy? I live in Sydney south west.
Thinking I'm going to get double mastectomy as I have no problems/worries and I think it best to just take all the possible tissue. Always wanted a boob job so it's my silver lining that is keeping me positive.

Any suggestions help tips on best doctors etc.
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  • CRM
    CRM Member Posts: 92
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    Hey @NewBoobsPLS  really sorry that you are here. I have no recommendations for Sydney as I am in Melbourne but just wanted to let you know it sounds like you are grade 3, and fingers crossed not stage 3 pending the results of your lymph nodes. The stage is a scale from 0 - 4 of how advanced the cancer is and the grade is a scale of 1 - 3 of how aggressive the cancer is.  If you have a 5mm tumor and no lymph node involvement it should be stage 1.  I hope it isn't patronising for me to explain that I just thought in case you are telling family and friends there is a big difference between stage 3 and grade 3. 

    I have no doubt the other women on here can give you some Sydney-specific advice. Wishing you all the best xx 
  • CRM
    CRM Member Posts: 92
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    I should also add that finding your tumor by fluke when it is only 5mm is fantastic.  You have every reason to stay positive :) 
  • NewBoobsPLS
    NewBoobsPLS Member Posts: 87
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    @CRM thanks for the help. So much info has come at me these last few days. The dr said it was aggressive and it's been there about a year he thinks. My nodes are showing significant thickening so he thinks it's likely they have been compromised. I'll be sure either way to get the correct staging and grade on Monday. Sorry if I offended anyone with my mix up of stages and grades. I swear he stage 3 though. 
    I'll definitely be talking a pen and paper in next time.
  • arpie
    arpie Member Posts: 7,668
    edited February 2020
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    Sorry to see you here, @NewBoobsPLS - welcome to the club that no-one really wants to join  .... but you'll have lots of support & tips on getting thru this.

    Try not to get too far ahead of yourself at this point in time & be guided by your medical team.  Do you have a Breast Care nurse assigned to you yet?  They are a mine of information.  The biopsy gives a basic diagnosis - it is only after surgery & pathology that the team will discuss your long term treatment with more certainty.  The surgeon often has a 'team' that he works with & is confident with - so chat with the surgeon first up.

    Take a good buddy with you if you can - both for support AND a 2nd set of ears.  Also, record your meetings on your phone, so you can review it later.  It is almost impossible to remember everything that is discussed.

    Going public with surgery & chemo/rad onc/Onc is very cost effective as it is almost free (going private can cost a lot, even if you have medical insurance.)  So do your homework in the mean time, contact your private health insurance to see what you are covered for.  I was out of pocket up to $6000 with 'gaps' from surgery & treatments prior to Rad Onc & Onc.

    Whereabouts in SW Sydney are you ..... town/city?  Members may be able to guide you towards services available there.  

    Take care & All the best for your results xx
  • jintie
    jintie Member Posts: 114
    edited February 2020
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    Sorry to see you here.

    All breast cancer diagnosis have different treatment plans.  It all depends on the type of breast cancer you have - whether your 5mm lump is DCIS,  locally invasive or Lobular etc, whether there is lymph node involvement, the hormone receptive status and so on.  

    Has your surgeon mentioned chemotherapy to you?  If not, I would suggest waiting until you know what your treatment plan is before finding out best place to have chemotherapy.  It also depends on where your oncologist is too.

    My mother had a 19mm invasive but no lymph node involvement and she just needed a lumpectomy.  She will be going on hormone treatment and is currently being assessed to see whether she’s suitable for a trial where she won’t have radiotherapy and they just monitor her For the next 10 years instead.  She is 67.

    Her close friend was diagnosed with DCIS which was something like 2mm in size. She had a lumpectomy and radiotherapy and that’s it.  No further treatment.

    I, on the otherhand had 22mm invasive, multifocal involvement (which means that I had cancer in other areas of the boob) and lymph node involvement so I had to undergo chemotherapy, radiotherapy and then had bilateral mastectomy plus hormone treatment.  I will be having my ovaries removed next week.  I’m now 42.

    So you can see that different diagnosis have different treatment plans.

    good luck.
  • NewBoobsPLS
    NewBoobsPLS Member Posts: 87
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    @arpie thanks for the info. I'm based in Panania. My surgeon wants to start chemo before surgery. I don't have a breast care nurse yet. Do I have to apply or ask for one? Yer, my personality is a go getter so I get carried away with just getting on with it. For me it is what it is. I'll treat it, beat it and move on. I know that's not for everyone and that's ok. Positive energy. 😁
  • arpie
    arpie Member Posts: 7,668
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    @NewBoobsPLS - I believe your surgeon's nurse should be organising that for you .... 

    Yep, face it head on, but don't overthink it, as it really can do your head in. Just now you are in info-overload and it is hard enough to keep everything 'ordered' ..... but it can really muck with your brain, specially the more you do the 'what ifs' and start guessing on treatment etc.

    Ask the surgeon to write the plan down 'as is' - but it is the Oncologist who will be discussing your chemo with you - as that is not the surgeon's area of expertise.  He will have suggested it, from what he's seen on your tests already - but it is the Oncologist who will tell you what is going to happen & when.

    I am not familiar with services in Panania - but if you add the town name to your profile - others will spot it & may jump on with more specific info.

    Take care - and I hope you get more info with your next round of meetings xx

  • primek
    primek Member Posts: 5,392
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    I went public but in SA. I think your biopsy would be grade 3 (What cells look like) rather stage 3 given it small size. (Stage is to do with size of tumour and lymph nodes) Best of luck with treatment.

    You might find this link helpful.
    https://www.bcna.org.au/resources/booklets-and-fact-sheets/
  • iserbrown
    iserbrown Member Posts: 5,563
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    Oh you have a lot to take in and you are racing ahead in your thoughts but you need to go to your next appointment, take someone with you if you can as a second set of ears, and take in as much information as possible.  They will also explain what they believe is the best course of action and where you may have that treatment. Public or private?
    As noted earlier it is the Oncologist who will determine treatment regarding chemo, radio or zoladex!  
    We are all diagnosed with Breast Cancer but it is very individual, not only type and stage but our age and if we are menopausal and so it goes!

    https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/
    This link will be of help to you learn a little more and there's a link within that takes you to a different page for you to read up on your type of Breast Cancer - you didn't mention it above!

    Take care, best wishes and take a deep breath 

  • Afraser
    Afraser Member Posts: 4,388
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    Good luck for your next appointment and details of treatment. I had several seriously enlarged nodes but only one turned out to have been affected, the rest were just irritated! A second pair of ears is very helpful. Best wishes. 
  • NewBoobsPLS
    NewBoobsPLS Member Posts: 87
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    Hi all, doctor called today with verbal update that moderate all clear so now just looking at surgery. I'm opting for double mastectomy just to be sure. Has anyone done this and reconstruction in the one operation?
  • kmakm
    kmakm Member Posts: 7,974
    edited February 2020
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    Yes. If it's a DIEP it's massive, somewhat less so if it's implants. Ask to join the Choosing breast reconstruction group and you'll find a lot of women who can advise. K xox

    https://onlinenetwork.bcna.org.au/groups
  • NewBoobsPLS
    NewBoobsPLS Member Posts: 87
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    Thank you. Yes requested to join @kmakm
  • jintie
    jintie Member Posts: 114
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    Hi.  Is the surgeon saying that the only treatment that you’re having is surgery?  If so, that is great.  Just be warned - I am not sure what other people’s experiences have been with a 5mm lump - he may think it’s a bit extreme and say no to a bilateral mastectomy.  I don’t know your history so I can’t really comment.

    Wait until you’ve spoken with your surgeon next week.  Mum wanted to chop hers off for a 19mm lump, but surgeon said no and did a wide lumpectomy instead.

    I had a bilateral reduction 7 years ago... (before I was diagnosed 18 months ago) so I know what it’s like to get new boobs - twice!
  • NewBoobsPLS
    NewBoobsPLS Member Posts: 87
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    @jintie thanks for sharing. Yes just surgery at the moment. Surgeon has been keeping me updated over the phone as he has only had verbal results from pathology. We already talked about double mastectomy with immediate reconstruction and he said if that's what you want I'll do it. Not needed but he will. I guess I'm lucky then. The main things that concerns me is that it has all happened in one week and surgery may be as soon as Wednesday this week coming. My next appointment to see him is Monday and he said just Confirm over the weekend thats really what I want. 
    I have so many questions for the reconstruction though. Silicone vs saline, textured vs not.
    Also of concern ifi asked his receptions RE getting a second opinion. She was pretty obvious that she didn't think I should get one as this would delay the surgery.
    My local Gp said she really trusts him. She said he was very good at treating. I'm just scared of quality of reconstruction now. God so much to go through in only two weeks. Aaahhh