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Time span from diagnosis to treatment

Vix1963Vix1963 Crib Point, Victoria Member Posts: 12
Hi- need advice or reassurance please 
-Overdue BreastScreen Dec 22.
-Received call from BreastScreen Jan to come in for further tests/ lump found.
went to hospital and had two scans, 3D mammogram, ultrasound and 3 biopsies under ultrasound/local anaesthetic. 
-Called back 1 week later- confirmed invasive lobular Cancer Of L breast- HER-2
Referred to Family GP That day,
Family GP referred all test results to 2 hospitals- one close to my new home at beach and one close to my family jn Melbourne and where all medical records are (I still have to have a hole in heart To be repaired and post cervical cancer checks)
I deferred appointment with specialists at beach hospital til feb 22 as I received an earlier appointment to meet specialist at Melbourne hospital (Austin/Olivia Newton John wellness centre) and thought to check it out first (I’m told two opinions is good idea)
Halfway down the freeway to Austin hospital I get a call to say specialist has gone home sick- my appointment is. Cancelled and I’m back on wait list for an appointment again. No idea when my next appointment will be
i haven’t seen a specialist yet
have no treatment plan
and it’s nearly two months since my original mammogram
Am I right to be panicking and frazzled that the Austin hospital has STILL not gotten back to me for an appointment and treatment plan?
Should I just forget the Austin and go to frankston on 22nd?
Makes me Feel like maybe what I’m diagnosed with isnt a big deal to the hospital. Alternating between panicking and total absolute apathy   
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Comments

  • Julez1958Julez1958 SydneyMember Posts: 402
    Hi there
    my cancer was also lobular was not picked up on mammogram , I discovered a lump , turned out to be 5.5 cm and in the end I had a double mastectomy , radiotherapy and reconstruction.
    I found the lump end of August (2020) saw my GP next morning (on a Monday) and had mammogram and ultrasound that afternoon , and biopsy 2 days later.
    My GP booked me in the see a breast cancer surgeon she recommended ( I took her recommendation and was very happy) a week after she got the biopsy results and he confirmed it was cancer.
    I then had MRI of both breasts and a number of staging scans to see if it had spread ( it hadn’t).
    I actually lost  a week as I got a cold and with Covid everyone was very nervous.
    I had my surgery 7 weeks after I received my diagnosis.
    It felt like I had a radioactive ticking time bomb in my breast and even though my surgeon assured me my cancer was low grade and extremely slow growing I was freaking out , so I can understand your anxiety.
    I couldn’t relax until I had a surgery date .
    I had all my treatment as a private patient but I understand there are protocols for time to  treatment from diagnosis  no  matter whether you are public or private.
    Maybe see if you can do a Telehealth with your GP tomorrow ( Monday) to discuss?
  • arpiearpie Mid North Coast, NSWMember Posts: 6,122
    edited February 13
    Gosh @Vix1963 - I am so sorry you are having such a tough time of it.  xx Big hugs coming your way.  What a shame your appt was cancelled due to the surgeon being ill :( 

    Hard tho it is - Try not to panic or overthink it - being frazzled is totally normal tho .... the tumour really shouldn't be growing much in the next couple of weeks - but the fear that it is, is palpable & real. xx  Just take one day at a time, one hour at a time, if necessary xx. Keep as busy as you can, doing things you love doing.

    Mine was Lobular (which can be fairly slow growing) & was also missed by MG just months before my GP found it by accident.  That was in late Oct. I live in a regional area - and by the time I had another MG & US to confirm it, it was mid Dec & I finally had my biopsy on Xmas Eve and received my diagnosis on Jan 5.  I was lucky to get in for surgery in mid January, when I also found this forum.

    Your final treatment plan will only be formulated after your surgery & your surgeon receives your actual tumour pathology.  Sometimes, it can be 'different' from the biopsy pathology, as different parts of the whole tumour is 'checked', not just the random biopsy 'stabs'.  

    The Austin has an excellent reputation & I think you said earlier that your Heart surgery will be there too?  Maybe stick with it - but the final call is up to you xx

    take care
  • Vix1963Vix1963 Crib Point, Victoria Member Posts: 12
    Thk you for the level headed, calming advice 
  • JwrennJwrenn Mornington PeninsulaMember Posts: 127
    edited February 13
    Hi @Vix1963 the waiting is the worst , isn’t it? I had my original mammogram in November 2019 then the call back to have all the tests in December and 3 days later received the results. That day my gp went on holidays before I was able to get to see him for a referral to the hospital (  Frankston) and as he was working on his own there was no other doctor I could see. So I was in limbo for the 2 week Christmas period , wondering what to do next, scared s##tless if it was growing or how long till I would see a surgeon. Finally had an appointment with a surgeon at the hospital  in January and surgery about a month later. 
    The staff at Frankston were lovely, Rhonda the breast care nurse I saw is great too.

    Maybe you could give the Olivia Newton John centre a call to see if they can give you an idea how long you might be waiting?

    Sometimes we need to be our own advocate. 

    Best wishes 
  • FufanFufan Central Coast NSWMember Posts: 13
    Hi @Vix1963.  I don’t know if this will make you feel any better, but I found a lump in May last year.  Despite many tests and my best efforts, I didn't get a diagnosis until 14 December. I had surgery on 7 January and then the diagnosis changed.  I’ve hit the jackpot: metaplastic bc.  Now I’m facing having chemo delayed because my mastectomy wound is not fully healed.  So we all face different challenges.  I’m doing my best to take it day by day.
    Hang in there!
  • Vix1963Vix1963 Crib Point, Victoria Member Posts: 12
    Omg You’ve had so many roadblocks and hurdles. You’re right, we all have our challenges- hard enough to be dealt diagnosis; it would be ideal if our treatment, consultations and recovery could run smoothly. I hope you heal well  ❤️ 
  • FufanFufan Central Coast NSWMember Posts: 13
     Not fully healed, but I have the go-ahead for chemo to start tomorrow.🤞
  • arpiearpie Mid North Coast, NSWMember Posts: 6,122
    @Fufan..  All the best for tomorrow - drink lots of water afterwards & let them know if you feel crook after you go home.  Take bits to read & even a light jacket - our Onc ward is often quite cold from the Aircon .... 

    take care
  • Vix1963Vix1963 Crib Point, Victoria Member Posts: 12
    After advocating for myself several times with phone calls to management, pleas and formal written complaint my first appointment with breast surgeon was today. 
    Briefly:-
    he said my tumour was small (2.5cm) so early case sonhe felt a lumpectomy to remove 8 cm of my breast ‘should be enough’ followed by chemo. I was quite insistent on full mastectomy one both boobies with SMALL inserts (great excuse to get rid of my 16DDs😬
    however, because I am on thinners and waiting for hole in heart to be repaired doctor feels it best to only remove lump at this stage then decide how I feel after chemo.finished— As to whether I want mastectomy and reconstruction, as he felt full mastectomy was too extreme for a ‘small lump’ despite the fact I gave lobular ca which often returns and already had a large benign lump removed from both breasts 20 years ago. 
    Surgeon elaborated with ‘ I can move things around when I take out lump, and move some fatty flesh from back or flabb stomach to balance the breast out” my warped sense of humour was ...visions of surgeons playing with breast flesh like Patrick swayze playing on the pottery wheel in Ghost ! Hahaha 
    seriously tho- wondering if I should get second opinion 
  • Vix1963Vix1963 Crib Point, Victoria Member Posts: 12
    What I’m trying to say is-what do people think ... are risks of mastectomy, pain & complications better than possibility  of C returning in future if I keep breasts ? Would love to hear what others have experienced  
  • AfraserAfraser MelbourneMember Posts: 3,889
    @Vix1963

    Unfortunately it’s very hard to make generalisations. Risks of recurrence may vary due to the type of cancer, how advanced before surgery, general health, family history and other factors. Complications are simply....complicated. I had a single mastectomy and axillary clearance (17 lymph nodes removed). The mastectomy was virtually painless, I had a persistent seroma (fluid accumulation) also painless but a nuisance and I have lymphoedema (painless too and relatively mild with treatment). The seroma was finally banished and I will be 10 years with no evidence of disease later this year. Worth it? You bet! Is everyone the same? No. I kept my breast as I have no family history of bc, no known gene that will increase the chances and if I were to get cancer again, it’s as likely to be elsewhere in the body as my remaining breast. I feel comfortable about my choice. If I hadn’t, I might seriously have considered removal of both breasts. What others experience can enlarge your knowledge, but only you can decide what’s right for you. Best wishes. 
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