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Metastatic de novo diagnosed 20 July

TrenzaloreACTTrenzaloreACT Member Posts: 6
edited August 2020 in Newly diagnosed
Hello, I was diagnosed on 20 July with grade 2 stage 4 De novo BC.  As many of the ladies on this forum have mentioned regarding their own experiences , it’s been a wild roller coaster ride.  The diagnosis of BC was confronting in itself, to find out it had already spread to my hip, well I was just gobsmacked.  I’m 58 and keep very fit by running and going to the gym.  I run around 40km per week and just couldn’t believe I had it in my hip.  I’ve absolutely no pain, and ran in a 10km race the day before my diagnosis.  Well, I could deny it all I wanted, the fact is, it’s in my hip.  The next complete shock was to be told there is no cure.  In the interval between the original BC diagnosis and the PET scan(which showed the hip lesion) I’d been reading and researching everything I could on the various treatments etc.  and preparing myself mentally for surgery, chemo etc.  to then be told that none of it was for me, as it’s metastatic, well that was just devastating.  However, I’ve now received some good news.  My health team has recommended an aggressive approach to treatment.  Since the hip lesion is small and is the only evidence of BC outside of my breast, and I’m young (😂) and fit with no other health issues, they are going to try for cure by starting with hip replacement surgery and radiation, Two weeks post surgery I will start on Chemo for 5 - 6 months and will then undergo a mastectomy.  It’s terrifying, but also gives me hope.  It’s been 3 weeks now since diagnosis and I just want to get on with it.  I see the orthopaedic surgeon on Monday and hopefully have surgery the following week.  I’ve found the comments and discussions on this forum to be such a help, inspirational really, so a big thanks to everyone.
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Comments

  • ZoffielZoffiel Regional VictoriaMember Posts: 3,196
    Hi @TrenzaloreACT. What an absolute bugger of a thing! This a wretched disease and I'm sorry you find yourself in this position. 
    Platitudes are pointless, but good on you for being level headed about it. Good luck. Mxx
  • AfraserAfraser MelbourneMember Posts: 3,510
    Best wishes for your treatment - it’s a long haul but the benefits of knowing you are doing all that you can are significant, for your own well being and optimism. 
  • Cath62Cath62 Brisbane Member Posts: 290
    Sending hugs. What a ride it all is. Thinking of you ❤
  • SisterSister Adelaide Hills, SAMember Posts: 4,938
    No words to make it better but good that you have a plan.
  • PV123PV123 Member Posts: 202
    Best of luck with your treatment @TrenzaloreACT.  My oncologist has always insisted that metastasis in the bone will always cause pain, which is one of the reasons she doesn’t advise anyone to have yearly CT and PET scans, however in your case you had no pain.  Hopefully that means the lesion is very small.  Do you have someone to help you after your hip surgery.  As you mentioned your healthy lifestyle will assist your recovery. 
  • TrenzaloreACTTrenzaloreACT Member Posts: 6
    Thank you ladies, you are the best.  Afraser Absolutely.  I’m so very fortunate to be in the very small percentage of women with metastatic BC for whom a cure would even be contemplated.  No guarantees of course, but I’ll give it my best shot.  
  • jennyssjennyss Western NSWMember Posts: 1,171
    Dear @TrenzaloreACT

    from jennyss in Western NSW (but a former ACT gal - I remember before the lake!
  • DeanneDeanne Sunshine Coast QldMember Posts: 2,150
    Wishing you all the best with this treatment plan. Hope is a wonderful thing to have and I hope everything works out for you. You sound like you are in the best possible position to get through this. I have everything crossed for you. 🤞
  • Caz1Caz1 Bayside , Melbourne Member Posts: 368
    Good luck :)  it’s a long slog, I’m still in mine!
    Just put one foot in front of another and keep going...you sound like you are in a good position to start :)
    Caz xxxx
  • arpiearpie Mid North Coast, NSWMember Posts: 4,883
    edited August 2020
    All the best with your appt with the surgeon @TrenzaloreACT and your surgery  ... you've been dealt a cruel set of cards but great that your team is thinking outside the square for you.  

    Try not to use Dr Google too much - as every case is so unique - and a lot of stuff on google is just either outdated or not relevant.  Record your Appointments on your phone so that you can go over them later - it is easy to miss a part of the conversation due to pondering a previous comment.  Do you have someone to go to your appts with you?  An extra set of ears (and support) is invaluable.

    Take care, stay busy in the meantime and fingers & toes crossed for you xx
  • iserbrowniserbrown Regional VictoriaMember Posts: 4,644
    @TrenzaloreACT

    Sorry to read your post. What a sneaky thing BC can be!
    Best wishes for your appointment and upcoming surgery. 
    Your fitness will certainly help with recovery and any ongoing treatment. 
    Take care and stay safe

  • TrenzaloreACTTrenzaloreACT Member Posts: 6
    Thank you all for your comments, this forum is amazing and so very helpful.  I’m extremely lucky to have a wonderful husband who is supporting me in just the right way for me.  A shoulder to cry on when I need it (usually around 3:00am!) and a ‘let’s get on and deal with this thing’ when I need strength.  Also, due to COVID, we have our daughter living with us, and she has been terrific.  I’d been worried that this might all be too much for her, as she has some health issues of her own, however she has shown me she is much stronger than perhaps I’ve given her credit for in the past.  I’m trying to keep busy and get as many things done as I can before the hip surgery, yesterday we did a big pruning job in the garden, which was a good diversion from endless appointments.  So nice to do something ‘normal.’
  • arpiearpie Mid North Coast, NSWMember Posts: 4,883
    Well done, great that your family is so supportive @TrenzaloreACT.  Yep, when the going gets tough, the tough get going!  No room for wimps!

    Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!). 
    https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
    If you are into arts & crafts, we have a 'Creative Corner' 
    https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
     and if into your garden,  a Garden post as well!! 
    https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078
    And we now have a Fishing post, as that is one of my passions!
    https://onlinenetwork.bcna.org.au/discussion/19494/fishing-brag-pics

    All the best with your ongoing appointments & getting your surgery date confirmed. 
    We have some posts here on what to take with you too, to make it 'easier' for you to pack (tho they lean towards BC surgery, not hip) tho should still be useful.  My 2 tips are taking decent earplugs with you and eye mask (like from planes) as hospitals are noisy places with lights on 24/7! My earplugs of choice are these ones (I use them at home too) .... just squish them to pencil size and shove them I’m. I reckon it is impossible to push them in too far!  They ‘open up’ and cut out most noise, but you would still hear a fire alarm or someone talking close by.

    https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1

    Take care and all the best xx
  • TrenzaloreACTTrenzaloreACT Member Posts: 6
    @arpie thanks so much for the links and tips, they’re very helpful 🙏🏻 
  • Lisa1407Lisa1407 Elwood, VictoriaMember Posts: 183
    Hi @TrenzaloreACT, I was in your position about 3.5 years ago (aged 51). I had multiple hip lesions, so hip replacement was never discussed. I had muscular pain around my hip for about 12 months before diagnosis and was seeing a physio regularly.  I didn't have initial chemo or mastectomy. I ended up having mastectomy a few months later because the breast tumours (more than one) continued to grow and have been on many oral drugs since then. The good thing is that although there has been progressions and remissions and more progressions, the cancer has not shown up anywhere other than my hip. Good luck with your treatment and please keep us posted about how you get on with your treatment. xx
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