Newly Diagnosed - surgery and treatment pathway

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Mez_BCNA
Mez_BCNA Administrator, Staff, Member, Moderator Posts: 901
Moderator moved @Kaz64 from activity section to 'Newly Diagnosed':

After a routine mammogram and 2 follow up needle biopsies, last week I was diagnosed with a high grade DCIS & a grade 3 14mm invasive carcinoma er+/pr+/her- in the same breast. It is the first time I don’t want to be in the highest grades!!! 🙃. My next appointment is with a breast surgeon later this week. I intend have my treatment through the public system which will probably be at Peter Mac Moorabbin. I have some private health cover but doubt I could afford to use it because of all the out of pocket costs. I am also a strong believer in the public system. Against all the usual advice, I googled the senior breast surgeon I will be seeing for first appointment to find only one google review stating that unless you go private this specialist will have zero care factor😔. I gather this specialist is the one that sets the course for your future treatment even though they may not be the actual surgeon if you go through the public system?? I am now nervous about time it might take to see another breast surgeon if this meet doesn’t go well or I think I need a 2nd opinion. Is it even possible to go to a second breast specialist given that breastscreen only provided one specialist kit? Does anyone have any recommendations for a patient focused breast surgeon in Melbourne - preferably south east. I have been advised that my expected course at this stage would be an MRI followed by surgery to take (at least ?) the lumps & some lymph nodes. I have had other symptoms that suggests it may have spread further. Is it possible/likely I may get a Pet scan. If so would that normally be done before or after the initial diagnostic surgery?

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  • arpie
    arpie Member Posts: 7,668
    edited July 2023
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    Hi @Kaz64 - I am so sorry to see you've joined our exclusive little group - but we've 'been there, done that' so we pretty well know what you are going thru xx ...... There is a wealth of knowledge here & hopefully, we'll be able to help you thru the next few weeks & months xx

    I am not in Vic, but others will jump on & advise you in the areas you've mentioned.xx

    Try not to get ahead of yourself re meeting your specialist surgeon - and definitely try not to allow that one review to cause a barrier before you meet the surgeon  .... it may have just been a personality clash with that one person.  It can happen ..... You could look at the 'lack of comments' on the surgeon as being 'good' - cos if there were a HEAP of dodgy comments, THAT would be bad, eh?   Whoever your surgeon ends up being, they'll be doing their very best work on you, as they absolutely want the best outcome for you too xx.  

    Yep, definitely stay away from Dr Google totally for anything medical ... as everyone's case is totally unique & a lot of stuff that pops up 'first' is often old & out of date too.   

    I went private for my surgery & public for Radiation & Oncology .... and I can't fault either, tho as you said, with private, there are often 'gaps' to pay, even with full private health cover .... which I was advised of early in the piece.

    When you see the specialist, take a list of things you want to discuss - as it is easy to forget to mention some things, if not written down, in the emotions of the moment.  Take a trusted friend or family member with you as well as an extra set of ears - and I'd suggest that you record the initial meetings on your phone too, to 'go over' later on at home, if you need to, specially after your surgery.  Always ask for copies of any reports, too .... 

    Jump onto this thread that explains a lot of areas on the Forum - we even have some 'fun threads' re pets, gardens, art & craft & even 'funnies' (god knows we need a laugh!). There is also a link to another thread for some 'tick sheets' that you can download (at the bottom of the page) to fill in prior to your appointments, to 'self assess' your mental health & other stuff xx.  Sometimes, it is easier to tick them off & give a copy to the surgeon/Onc to go thru with you - rather than have to 'say it out loud', which can be quite confronting & upsetting.
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Take care & all the best for your meeting with the specialist xx
  • Julez1958
    Julez1958 Member Posts: 1,149
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    Hi @Kaz64
    I am in Sydney and had my treatment ( mastectomy , radiotherapy , reconstruction, oncologist follow up ) in the private system but both my breast cancer surgeon and plastic surgeon (who were amazing) operate in the public system as well 
    I know of  many ladies who had their treatment in the public system who were happy .
    I have heard a lot of good things about Peter Mac.
    Regarfing “ bedside manner” of Doctors, some are better than others.
    I didn’t initially “gel” with my oncologist but as time goes on I am much more comfortable with her - I think she is just naturally reserved whereas my surgeons are both extroverts.
    There is a wealth of info on this website it can seem a bit overwhelming at first but you know the information on  here is credible ( unlike much of what you will  find on the internet which a friend of mine once referred to as a “ library with no librarian”.)
    Take care and feel free to ask anything on here - we all “ get it” in a way someone who has never had the diagnosis of BC never really can .
  • Kaz64
    Kaz64 Member Posts: 2
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    Thanks Arpie & julez1958 for taking the time to reply. You both helped me feel more at ease with my appointment today. 
  • arpie
    arpie Member Posts: 7,668
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    All the best, @Kaz64 ..... and it is funny - I didn't 'gel' with my first Onc (tho buddies see him & just LOVE him!  Weird!) so I swapped after 2 meetings to my current lovely Onc and am very happy with her, 5 years later ....

    So just go in with your gut feelings and see how you go xxx
     
  • Aska
    Aska Member Posts: 67
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    Hi Kaz
    It is a bit of a rollercoaster!
    I was diagnosed 3/4 this year and 2 days later had a zoom consult with the surgeon I chose without knowing much about her. I went private through Epworth Richmond, her rooms are opposite,  but she operates at Peter Mac in the public system.  If you want or need a second opinion  she is fantastc.  Also specialises in oncoplasty so did some plastic surgery at the time if removing tumour. Her name is Sophie Nightingale.
    Happy to answer more questions. 
    Good luck x
  • Fufan
    Fufan Member Posts: 123
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    It must be a thing with oncologists: I was apprehensive about mine after the first appointment, too.  But we get along fine now.  The moral: don’t make judgments about specialists too soon.  Try to keep an open mind, as I’m sure they do want the best outcome for you.  Hang in there, and best wishes.
  • mell45
    mell45 Member Posts: 26
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    Hi @Kaz64 you can definitely get a 2nd opinion. You can also see a surgeon in their rooms privately but be operated on in the public system. I am also in Melbourne but unfortunately my surgeon does not take new patients. Best wishes.
  • Kaz64
    Kaz64 Member Posts: 2
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    Thanks for your replies @Aska, @fufan & @mell45
    The initial surgeon appointment went well though and put my mind at ease. Fortunately the surgeon was nothing like the google review suggested. 
    MRI tomorrow then I meet with breast care nurse, physio and doctor (surgeon? ) next week before a mag seed or two are implanted. The operation will follow. Although the surgeon I chose to have my jnitial appointment with will not be performing the surgery as I am going public. I am told that the particular surgeon is good. Funny I am a little concerned that the surgeon is male. Not sure if I’m being sexist but I tend to think that a female surgeon will be more particular about breast surgery - probably why I prefer to see a female doctor for smear tests / - I expect they have a better appreciation.  It’s all getting a bit real now. 

     
  • Fufan
    Fufan Member Posts: 123
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    Don’t know about this male doctor thing.  I’m 76, and think of myself as an early feminist.  I've had two babies, many internal examinations, a hysterectomy, and a thing called duct ectasia, which involved a lot of fiddling around with my breast.  All done by men.  No worries. Probably by chance, my breast surgeon and oncologist are both women.  But my GP is a man, and he’s great.
  • MicheyV
    MicheyV Member Posts: 2
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    Hi sorry to hear of your diagnosis and the negative review for the proposed surgeon.  If you do have private insurance perhaps you can look online if there are other surgeon's who subscribe to a minimal gap fee payment ie: $500 and still have surgery private and after care public.  I would still go ahead and meet him/her and form your own opinion.  It is difficult to start again with another surgeon but so important you feel comfortable with your care team. 
  • arpie
    arpie Member Posts: 7,668
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    @Kaz64 - great that your appt went well ... do you meet up with the actual surgeon before the surgery?

    My surgeon is a male & was just terrific - head of Dept and associate professor and VERY good at his job & lovely manner, explaining everything & very empathetic - but having said that - both my Oncs (Rad and Medical) are female (after ditching the first one who was a guy that I just wasn't interested in me as a patient ...) I've been very happy with my team.  I hope you are too.  I think statistically, there are usually more male surgeons than female ....    

    take care & all the best as you move forward xx