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Carissa_BCNA's avatar
Carissa_BCNA
Member
4 years ago

Newly diagnosed

@Vix1963 message moved from the activity section by BCNA moderator. 

Hi peeps
Last 7 days been a whirlwind-
HISTORY-24 years ago I had two lumpectomies ,one from each breast - both benign. Have had regular mammograms ever since EXCEPT 2020 when Andrews shutdown screening . So it was three years between my last mammogram and this one. So, December 22nd 2021, I had my mammogram. January 20 a BreastScreen call delicately saying that specialists had found a concerning area, could I come in for further tests. Jan 21 I had all the scans, counselling , 3D mammogram and finally 3 biopsies.
January 27 called in earlier than original appt made. Doctors sat with me-have just been diagnosed with Invasive Lobular Cancer in my L Breast- Grade 3, Stage 1, HERS 2/3
Then sent off to my GP for referral to Breast Specialist in hospital.

QUERY- would you recommend a hospital close and easy access to family (that would be ONJ/Austin)
OR hospital close to my home and the beach for respite in between treatments (this would be Frankston Hosp)
what do you suggest? 
Note- Austin is also where I am waiting for my hole in heart to be repaired, and GP says this needs repairing before I start Breast treatment due to clotting bla bla
-which hospitals did u go to? Or highly recommend?
- what’s the time frame for everything now?
they want me to have Chemo prior to surgery (do I lose my thick waist length hair?)
thx for reading 
chemotherapy
hair-loss
invasive-lobular-cancer-ilc
new-diagnosis

10 Replies

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  • Keeping_positiv's avatar
    Keeping_positiv
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    4 years ago
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    @iserbrown many have complained about the roving musicians coming into the chemo room and in patients faces whilst they are having chemo.  It is completely different if a patient puts their name down to take part in the music therapy programs they offer though, and I agree you might find it welcoming in that case.  The music therapy program is not the same as the roving musicians and the choir that comes through.  The music therapy is a separate program and needs to be booked in and there is a timetable and the days of the week and times it runs, and also some get booked out, so depends if there is a space, and some perhaps would come back in on a separate day to take part in that.  For me I never would, because I was over 40 minutes drive just to get there.  

    @Vix1963 I wish you all the best and hopefully your treatment starts very soon.  I had a really great surgeon at the Austin, so many highly regarded surgeons and oncologists who work both privately and at the Austin, and my oncologist was so caring also.  xx
  • arpie's avatar
    arpie
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    4 years ago
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    @Vix1963   Gosh, some serious decisions for you - and the waiting always really SUCKS as it plays games with your brain.  Maybe contact the team on the helpline ( 1800500258 - usually on the blue banner above) tomorrow & ask them for some tips on questions for your surgeon when you see them this week.

    2 months is a 'fairly normal' time frame .... but it is very stressful on you xx. Definitely mention that you are a tad concerned, so that he is totally aware of it ... 

    Take care & all the best for your appt this week xx

  • Keeping_positiv's avatar
    Keeping_positiv
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    4 years ago
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    I also waited 2 months for surgery from diagnosis.  If I had known upfront how drawn out the process is at the Austin I would have never gone there in the first place.  Too bad they have all the extra stuff like a grand piano and roving musicians to entertain those waiting for treatment at the ONJ, but all I wanted was timely treatment.  Can you go closer to home?  I do get a bit angry when I hear the same is happening to others when trying to get treatment at the Austin.  

    It is such a busy place and so noisy with roving musicians and people playing on the grand piano in the waiting lounge and buzzers going off left right and centre.  But if they don't have the ONJ donations then they don't have the extra funds needed to research more, and admittedly the Austin have a lot of funding thrown at them because they keep the ONJ Wellness Centre going.  Truly I never found it a peaceful time waiting there.  I hope you get your surgery soon, or can you change to a closer hospital?  

    Take care and I wish you well. xx

  • Vix1963's avatar
    Vix1963
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    4 years ago
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    After an MRI on Feb 22, I saw my surgeon at Austin hosp the following day…
    small lump on L breast that had initially been detected at mammogram dec 22 was now a lot bigger AND my entire L breast has scattered pellets of cancer with tentacles - so initial plan of lumpectomy/hormone/chemo/radiotherapy has now changed to mastectomy. I’ve asked for both to be removed so they are ‘even’
    surgeon then referred me for bone scan/blood pool study/Ct scan/lymph node biopsies . They couldn’t find my lymph nodes to take biopsy… is that good?
    When I queried my Breast care nurse at Austin she reassured me that maybe this means lymph node as are swollen so no invasive growth but she also noted my surgeon still hadn’t referred me to oncology ( which will be closer to home at frankston hospital)
    I see surgeon again next week to get results of the aforementioned scans etc.
    should I be concerned that it’s getting near two months since diagnosis and cancer already rapidly spreading and still treatment hasn’t started?
  • Jwrenn's avatar
    Jwrenn
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    4 years ago
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    Hi @Vix1963. I had my surgery done at Frankston public hospital  and was very happy with my surgeon. I didn’t get a choice in the public system. I saw a different one at my initial appointment to whom did my surgery. I didn’t need to have chemo but had radiation at Frankston private hospital which didn’t cost me a cent as I was a public patient referred there. I could have chosen to get treated at Moorabbin hospital where I was diagnosed but chose Frankston for convenience. When you’re going daily for radiation the closer the better I think. They do chemo at Frankston too. 
    Good luck in your decisions.
  • Julez1958's avatar
    Julez1958
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    4 years ago
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    Oh dear @Vix1963 you have got a lot on your plate!
    I also was diagnosed with lobular cancer in my left breast grade 2, stage 2, it was quite big and had not been picked up on a mammogram only 12 months prior.They call it the “ sneaky” cancer for a reason!
    Anyway I ended up having a double mastectomy but everyone’s situation is different.
    I am in Sydney and went private - my GP referred me to my breast cancer surgeon who then referred me to my plastic surgeon and oncologist.
    He operates out of St Vincent’s Public  Hospital as well as St Vincent’s Private which is where I had my operations ( mastectomy and later in reconstruction).
    I was in a private health fund but still had quite steep out of pocket expenses but was very happy with my surgeries , hospitalisation s and after care.
    I know of who were also very happy with their experiences in the public system.
    I trusted my GP to refer me to someone good and I was very happy I was at a hospital associated with best practice in breast cancer surgery and care.
    There is a lot to take in at the beginning and a wealth of information on this website ( fact sheets , webcasts etc) as well as this forum where no question is too silly and we all “ get it” as people having faced a breast cancer diagnosis.
    I didn’t have to have chemotherapy but did have radiotherapy and am now I’ve year until at least five years of hormone therapy.
    Take care .
    🌺
  • arpie's avatar
    arpie
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    4 years ago
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    Transferring my answer from Activity to here ...

    Oh my gosh, @Vix1963 - I am so sorry to see you join our exclusive club - but you are in the right spot for support and comfort, when you need it - plus information from those who've 'gone before' xx

    Mine was lobular as well, Grade 2.  It wasn't picked up by my mammogram just 3-4 months earlier - my GP found it 'by accident' when doing other checks on me .... so lucky me!  Lobular is particularly difficult to 'see' on mammograms, specially if you have dense breast tissue, as the tumour shows as 'white' and the more dense breast tissue ALSO shows as 'white' ..... making it very difficult to 'see' on the films, as it is white on white. Back in the 80s, when I was first 'investigated' due to lumps that I'd found, they said I had 'lumpy breasts' and it was most likely cysts. I think the 'lumpy breast' was an euphemism for 'dense breast tissue' but I wasn't advised of that at the time. 🙁 We have an Invasive Lobular Group that you might like to join, where we put up any new information that we find regarding Lobular .... as it is a particularly 'sneaky' one, as it doesn't always show as an actual 'lump' .... until it is bigger.

    I am not in Vic, but I've heard excellent reviews of the Austin - and I am sure that Frankston has an excellent reputation too. Having family and friends nearby is always a bonus (altho just now no visitors are allowed in NSW hospitals due to covid ...) If you are having your heart surgery in Austin, you would then be more familiar with it & how it works .... 

    Re losing hair with chemo - some do, some don't. My husband has just had 9 months of chemo & didn't lose his hair... then changed to a new regime of chemo in Dec & sadly, lost most of his hair 2 weeks later. 🙁 Ask about using a Cold Cap - I understand it can be a bit uncomfortable ... but if it helps you keep your hair, well worth considering.  Gosh, if your Onc says you 'may' lose your hair - it could be an option to have it cut off 'early' and made up into a wig?  Or you could donate it 
    https://www.cancervic.org.au/get-support/wig-service/donating-your-hair

    Only your medical team can fill you in on the time frame, but I have no doubt it will kick off soon.

    Take a trusted friend or family member with you to your appointments & even consider recording the meetings on your phone - so you can go back over it later on.

    If you check out this link, it gives a lot of information on the whole 'forum' - and a link to 'tick boxes' at the bottom, to help you formulate questions for your Surgeon/Oncs. Print your questions off & give them a copy & you keep a copy, tick them off & take notes, as they address each one. https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest 

    The first month (or 6) since detection/diagnosis is always a big blur .... I hope you have supportive family & friends to lean on .... put up any questions that you have - and we'll do our best to address them. xx. 

    Wishing you all the best for both your procedures, and ongoing treatment xx
  • Afraser's avatar
    Afraser
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    4 years ago
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    @Vix1963

    In my limited experience, the hospital depended on my breast surgeon and might have depended on whether I was a public or private patient. Looks like the Austin will be your starting point (good luck with the heart surgery) and that you may have chemo first. You will also be referred to an oncologist who will be able to advise on the chemo regimen and whether you risk losing your hair. You may, so you should also ask about cold cap treatment to try and save it. Doesn’t seem to work for everyone but some people have had excellent results. 

    Best wishes, it’s a lot to face at once but take things day by day.