Further Spread

bronmeg1bronmeg1 Member Posts: 12
Hi, I was diagnosed with breast cancer in 2008 & underwent mastectomy & axillary clearance, which showed spread to lymph nodes, so had the chemotherapy & radiation regime.  I was proud of how well I managed, still holding down my job & not having many of the side effects.  Though did go through a rough patch with Taxotere, which got changed to Taxol.  No radiation burns thanks to Vegesorb (vegetable based sorbelene as normal stuff is petroleum based) & I am very fair, so again, happy.  Continued on Tamoxifen. 
Then in 2015, went to my GP with a little wheeze, which I put down to adult onset asthma, being the only female in my entire family not to have suffered.  But no, on a routine check up with the oncologist, lung cancer was found, multiple nodes.  Fortunately was able to start a round of hormone tablets, then as it continued to grow, medication changed & Groselin injections added.  All going good.  Finally decided to take a holiday & tick something off the bucket list.  Came back with a cough & was diagnosed with pneumonia & a virus.  Cough continued despite all sorts of treatments & medications.  Another scan, this time the cancer had grown & more areas in lungs.  To be sure we weren't dealing with another type of cancer and still related to BRCA spread, more tests.  Yay, low & behold I now have the starting of bone cancer.
Am feeling a little woe-is-me at the moment & full of questions & self doubt & persecution.
My oncologist & team is fantastic, but as this latest diagnosis is just days old, I am still digesting & processing.
Is anyone else going through similar & how do you find your happy place again?  I feel everytime I look forward, the cancer makes me stop again.
I did read that there are specific exercise programs for bone cancer pts, does anyone know of anyone dealing with that in the Cairns FNQ region?
Thanks for listening
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Comments

  • socodasocoda LeumeahMember Posts: 1,540
    Hi @bronmeg1, so sorry that you're having such a rough trot. I'm sure the lovelies will come on here to assist you with their experiences. I do know that @Deanne goes to The Bone Clinic for an exercise regime that helps to build bone density. Hopefully she will be able to assist you. Also there is the Online site of The Bone Clinic called Onero online
    http://onero.online/ - which has exercises that you can do at home - as all of their clinics are in South Queensland. Sending you a big hug and hoping that you can muster your reserves to keep up a strong fight. Xx Cath

  • primekprimek Broken HillMember Posts: 3,540
    I believe they may put you on prolia which helps with reducing metasteses of bone.  I do hope they sort the lung part soon for you too. Perfectly normal to be feeling down about the new diagnosis but there is much they can do with bone mets that they can't do with the soft tissue stuff. Are you part of the metastatic breast cancer group.

    http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

    Kath x
  • DeanneDeanne Sunshine Coast QldMember Posts: 1,893
    edited January 4
    Hi @bronmeg1,
    Like @primek has said, your team will probably put you on Prolia which will help with the bone metastasises. I do attend exercise classes for bone strengthening as @socoda has said but I do not have bone metastasises, just bone density issues. The classes I attend are designed and run by an exercise physiologist. Ask your team if they think that seeing an exercise physiologist would be beneficial. An exercise physiologist can design an exercise program suited to your individual situation. 

    I hope that you soon have a plan from your doctors and that will help you to start feeling better and moving forward again. Take care.

    Deanne xxx

  • MollygirlMollygirl Brisbane Member Posts: 98
    Hi @bronmeg1, I can't comment on mets or treatment I just wanted to give you a hug
  • PaynePayne Forster NSWMember Posts: 107
    Hi @bronmeg1, I don't have mets but Im feeling for you.  What a shitty time for you.  Reading other posts from ladies with mets might give you some advice and  encouragement.
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,372
    hi @bronmeg1
     I shared a room with a lady from cairns at BCNA Summit last year,  who is active with the cancer council in cairns they have a phone support line, she had talked about it with me while we were together. I will get some information for you and post it here tomorrow. 
    Soldier Crab 

  • jennyssjennyss Western NSWMember Posts: 20
    Dear @bronmeg1, No experience to add, but best wishes from me in Western NSW
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,372
    @bronmeg1 I have sent you an inbox message. 


  • ZoffielZoffiel Regional VictoriaMember Posts: 1,027
    'Feeling a little woe is me'. No shit, @bronmeg1. BC does good job of toughening us up, but that would have to be one of the greatest understatements of all time. You must be bloody frantic with stress, you are in the middle of the thing we all dread. 

    My cancer returned in 2016, but it was classed as a local recurrence as it was in my armpit and hasn't, as far as I am aware, gone on holidays anywhere else. Yet. Realistically it is only a matter of time, but until then I've done all I can and am now playing the waiting game.

    It sucks to be that far down the track (I was 10 years NED) and then have this filthy disease rear it's pug ugly head again. I so feel for you. Good luck. Marg xxx
  • Lisa1407Lisa1407 Elwood, VictoriaMember Posts: 37
    Hi @bronmeg1
    Sorry to hear your news. Try to stay positive - bone mets are the best mets to have as they can be managed. I am sure your oncologist will put you on an appropriate treatment which as mentioned by the other ladies is likely to include a monthly injection of denosumab. I presume as they realised you have bone mets early on that there hasn't been deterioration of the bone structure, which means bone breaks are less likely. Although I don't have mets anywhere else, I have had bone mets for two years now. In that time, they have resolved and then come back again. But due to treatment they have not got worse in the 2 years and I haven't had further spread which makes me grateful. The cancer journey is definately one of many ups and more downs. I try to focus on knowing there will be another up at some stage, but it is hard and certainly some days I feel dreadful particularly knowing that treatment will never end! I think this is the biggest difference between us and the ladies who do not have metastatic disease. Even though they will feel unwell from radiation and chemo it is a relatively short period and we have to going on feeling unwell for the rest of our lives! I also have a 14 year old and an 11 year old which helps me focus on staying alive long enough to at least see them to adulthood. Good luck with your treatment and I look forward to hearin
  • PaynePayne Forster NSWMember Posts: 107
    Well put @Lisa1407. I am humbled by your comment on the difference between those with mets and those (as yet) without.  I'll keep it in mid especially when I have my down times.  If I knew how to post pics, I would send you a stunning bouquet of yellow roses.
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,372


    A Stunning bouquet of yellow roses on behalf of @Payne

  • PaynePayne Forster NSWMember Posts: 107
    Oh, thank you @SoldierCrab.  The bouquet is exactly what I had in mind. Clever girl.  I hope @Lisa1407 sees them. x
  • bronmeg1bronmeg1 Member Posts: 12
    Thank you everyone for your words & support.  You all make my cry
  • bronmeg1bronmeg1 Member Posts: 12
    PS  The roses are stunning.  Great photo, makes me feel like they are sitting on my desk beside me.  Thank you all so much.  It is nice that there are people who share similar experiences, and can understand & relate to the emotional rollercoaster that is this journey.  Friends, family & medical teams are good, but never quite the same as a shared experience.  :) <3  
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