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Gerry2's avatar
Gerry2
Member
22 days ago

Stage 4 breast cancer

I have been diagnosed with stage 4 breast cancer recently, lungs and bone involvement.  Hormone receptive high.  After reading up about it I was feeling very upbeat.  Then I met my oncologist, she was very positive and I was feeling at peace and ready for anything.  But after a lot of thought, and knowing I am on borrowed time, knowing all the blood tests, scans, and injections for my bone cancer (and lung) for the rest of my life, meetings with oncologists, GP and allied health workers and with only a 50% chance of living for up to 5 years I'm seriously wondering if it's all worth it for me.  When will I get the chance to live my life fully when I will constantly be reminded that my time is limited?  

Knowing the side affects and how the doctors change the meds to try and find the right ones when I feel I don't have time or the energy to put my heart and soul into something that will kill me anyway.  

I don't feel depressed, over whelmed definitely, sad for sure but I can feel the real me leaving already and becoming just another statistic.  

My breast care nurse is wonderful, the oncologists have been lovely and supportive and everyone involved has been amazing.  But, the thought of going through all the treatments I have to go through and the end result will not be a cure and no certainty that I will be one of people who die within the first year is too much.  

I'm not afraid of dying but I am afraid of becoming a struggling cancer patient who will die. That's how I see my reality.

I am 65 and have had a wonderful life.  I have no regrets, just a simple and happy life.  I have no grandchildren but I live an active busy life in retirement and I know with all the treatments, appointments, the ups and downs I don't think I will have the time or will or energy to be the person I am now.  

I sincerely hope someone out there can understand and perhaps give me some hope that after awhile my new "norm" will be ok and that I don't forget who I am.

Gerry xx

anxiety

22 Replies

  • Gerry2's avatar
    Gerry2
    Member
    12 days ago

    Oh boy I always seem to be complaining.  No one to talk to as everything closes down during the weekend in Qld and I've already had that experience the first week of starting Tamoxifen and ADK6/4 trip to emergency to Nambour hospital.  Lung infection, kept me overnight and sent me home with antibiotics for a week.  

    So finally feeling OK until today.  Suddenly I had zero energy.  I could barely crawl into bed.  I thought I was doing so well up until then.  It's day 11 and other than the lung infection I thought OK the meds are tolerable. 

    I was told this could happen but I had no idea!  Obviously doing too much and should be resting more.  How long does this fatigue last?  

    Today I'm back to thinking is this treatment worth it if I can't live my life.  How do people cope.

    Thanks for reading

    • arpie's avatar
      arpie
      Member
      12 days ago

      So sorry to read you've had such a crook time of it Gerry2​  Big hugs xx
      Yep, don't over do stuff .... be kind to yourself & hopefully you have family & friends who can step up to the plate to help you around the house & garden xx

      Listen to your body - my hubby used to put himself to bed on about day 2 after his chemo for a good couple of days.  I'd give him whatever he wanted to eat when ever he wanted it (as often you don't feel like the standard 3 x meals a day.)  It really doesn't matter WHAT you eat, so long as you eat 'something' in that 'off period'. xx Keep up your fluids.

      take care xx. You can do this xx

    • cranky_granny's avatar
      cranky_granny
      Member
      12 days ago

      Gerry2​ I get where you’re coming from. I’ve had a couple of chest infections on the combo.  Had a couple of holidays from it over the years. I’m on Ibrance 125 mg and anastrozole. Just gone back on it after my longest break in 6 years. It’s a bit like starting all over again. Difference being I know what to expect. Doesn’t help that I have had the general anaesthetic last week fir my little opp. Thankfully I just started the week off Ibrance. Don’t start again till friday after bloods, oncologist and monthly jab of    Denosumab. Hate to think how I would be feeling if I was still taking the Ibrance.  
      The opp and post treatment is certainly a surprise.  2 litres of fluid a day. 2 doses if metamucil   Plus 2 doses of lactulose all the soft fibrous food i can tolerate. Struggling to fit it all in. Amount of gas is disturbing. Good thing is the opp went well. No results yet not sure when. Back to post surgery clinic on 23rd.as well as the lung specialist. I will be spending the whole day at the hospital.   Start with a 10am appointment then another at 1pm.   The whole lot is exhausting. 
      Do you know why I persevere. Im not dying till I die and I’m not ready yet. 
      that doesn’t mean that on the bad days, thoughts of why do I bother don’t creep in. Just over the years I’ve mostly managed to steer those thoughts away. My mum used to say count your blessings name them one by one ( or she’d sing it.). Or look around you at where you’ve come and how much further you could go. Even the healthiest, fittest people don’t know when their time here is up.   
      You can get calendars that have inspirational quotes on them. I’m lucky one of my daughters posts a good morning with encouraging words every day on Facebook. 
      start each day with positive warm thoughts and finish the day with the same. Every little bit helps. 
      There have been times when that thought pattern happens too often and thats when the psychologist is so helpful  mostly she lets me ramble on subtly throwing in a helpful comment  you don’t realise thats shes done it but I always come away feeling so much lighter and brighter after her appointments. 
      Not sure what strength of meds you’re on but maybe they can reduce it. I know I can go to a lower dose of the Ibrance if needed.   
      Try not to  beat yourself up. What you’re going through isn’t easy and sometimes only just doable. 
       

      • arpie's avatar
        arpie
        Member
        12 days ago

        You should write a book cranky_granny​  xx. So many good commonsense tips - from your own experiences xx
        I hope all is going well with your own recovery xx

  • Julez1958's avatar
    Julez1958
    Member
    16 days ago

    HiGerry2​ 

    I would encourage you to join the private group on here “ Living with metastatic breast cancer”.

    The name says it all - increasing numbers of women are “ living” with stage 4 breast cancer for many years.

    There are so many different treatments now and lots of clinical trials and research so the future is a lot brighter than it was.

    What city / town are you in ?If you add that to your profile you may get more targeted advice from others on here,

    Do you have a McGrath nurse ?They are a great source of comfort and information for stage 4 patients.

    Please know that  on here you can ask any question and vert away and it is a place of non judgmental support.

    Take care .

  • Gerry2's avatar
    Gerry2
    Member
    17 days ago

    Hi, I wanted to leave an update.  It's one week on from the start of my treatment, tamoxifen, ADK6/4 and Denosumab.  I'm still a bit overwhelmed with all that comes with Metastatic Breast cancer but slowly getting used to the diagnosis.  It is early days but I want to tell anyone who is brand new to this life changing diagnosis that you will start to get used to your new "norm" and that this community was vital for me.  Just knowing that there are people out there willing to listen, give great advice and belonging to a group that is so kind and non judgemental helped me enormously.  

    On my first post I was sitting in the middle of the bed surrounded by so much paperwork on what side effects to expect on the drugs I'd be taking, scans, schedules etc... I was in floods of tears thinking I can't do this.  Information overload is an understatement.  I wanted to give up before even starting.  Thankfully I reached out to all you wonderful people and I'm in a much better head space.

    To anyone new, you will get through the first week and then the next and so on.  Keep reaching out on this forum, please read the inspirational stories and know no matter what there will always be a friendly ear to listen.

    Thank you for all your helpful replies and concern and to anyone new on this forum I want to say you are not alone.

    Love Gerry2

    • Christina_BCNA's avatar
      Christina_BCNA
      Community Manager
      16 days ago

      Hi Gerry2​ , it's so wonderful to hear how this community helped you when you needed it most - this is why we are here - it is true we are stronger together. Please keep us updated with your progress!

  • cranky_granny's avatar
    cranky_granny
    Member
    18 days ago

    Hi thereGerry2​   Metastatic Breast cancer is a shock to your system. I’m 6 years down the track. The range of treatment available is so much better than when the 5yrs was worked out.  
    like you I researched it all and until you dig deeper into those studies you discover they’re older then the new treatments available. 
    As for the side effects yes they’re rough to start with. Because they’re different. With my treatment I was asked to hang in there to see if they settled down to tolerable which they have.  From cancer markers creeping up to now they’re the lowest they have ever been.   I’m 68 now and it’s not the mets that are giving me issues now. it’s all mostly age related and being female  that gives me grief these days. 
     You can only give the treatment a go. Only you can decide whats best for you. 

    • Gerry2's avatar
      Gerry2
      Member
      14 days ago

      Hi Cranky Granny,

      Thank you for your reply.  My problem is at night when I start googling.... I know I shouldn't but I guess I'm looking for hopeful new therapies or ground breaking studies or something.  Sometimes I'm optimistic when I read about people lasting 10 years + but I know that it's unusual.  Other times I read that because it's in my lungs I'd be lucky to live for 2 or 3 years. I know I should stop reading dr google but I'm trying to get a handle on what to expect and because the oncologist says I have a 50-50 chance of making it to 5 years it's so vague.  They don't really give me a lot of information and I think it's because they don't know.  During the day I live my life normally, the meds are tolerable so far but I'm swinging from hope to despair.  How do you stay level headed and hopeful?  Is it because my diagnosis is only a few months old and most people get on with their lives and learn to live with not knowing?  

      I do see a psychologist who's great but it's at night that the fear starts and I can't seem to stop once it's starts.  I would appreciate any advice from anyone who has been through this particular struggle, I'm sure everyone does go through it.  

      Thanks for reading this.  I can't talk to anyone because during the day I'm ok, it's just at night.

      Love Gerry x

      • iserbrown's avatar
        iserbrown
        Member
        13 days ago

        Hi!

        Cranky_Granny mentioned Friday Funnies | BCNA Online Network https://share.google/DbvOHkYwTvYHYT37B

        Helps when you need a break!

        Just wanted to say that Googling isn't always wise.  It has a lot of opinion, perceptions and outdated information.   As cranky_granny suggested stick to reputable sites such as BCNA,  your Specialists, Government health sites to name a few

        Best wishes

  • iserbrown's avatar
    iserbrown
    Member
    19 days ago

    Dear Gerry2

    It certainly is a so and so when hit with the diagnosis!

    I note one comment you made, pity party over!  It is totally understandable to feel pity for oneself however as the reality of what's next with regard to treatment starts the focus then becomes all about the treatment.

    I have a younger sister who has Metastatic cancer.  After varying treatments they put her on Immunotherapy and at present she is NED!  Scans every 3 months to keep her in check!  We are always fingers crossed as scan and results are due!

    Have you heard of Otis Foundation

    Otis Foundation Retreats | BCNA Online Network

    Something to look forward to

    Take care

    Best wishes

    • Gerry2's avatar
      Gerry2
      Member
      19 days ago

      Thanks for your lovely reply and I have everything crossed for your sister too!  Thanks for the Otis link.  I'll check it out.

      Take care xx

  • brightspace's avatar
    brightspace
    Member
    20 days ago

    Hello Gerry New year greetings

    takes some time  to do those special small and big things you enjoy

    My mantra.... start the treatment... monitor the side effect which are often mild...ask for a reduction in dose if affecting daily activities. When side effects have settled down.....Book the holiday or weekend away

     a few treatments that were daunting  but I have done so knowing that there were many treatments available. Everyone differs in how therapies affect them. We are lucky to have the best treatments a and care available 

    Now lucky to be 11+ years. Forget the 5 % It is only an outdated number 

    All the best

    Bright in hope

  • Daisymoo's avatar
    Daisymoo
    Member
    21 days ago

    So glad you are feeling better now. You can get through this, don't forget to keep reaching out for support x

  • Daisymoo's avatar
    Daisymoo
    Member
    21 days ago

    Hi Gerry2​ that is a lot for you to deal with and contemplate. Thank you for sharing.

    In the end the decision is yours. Just don't forget that if you have a 50% chance of dying you also have a 50% chance of living. And life is great! Also there are many women living longer and longer with metastatic cancer.

    I don't have experience with the type of treatment you are facing, as my cancer was stage 2. But what I can say is that while chemo was rough, I was still able to enjoy many things while I was having treatment. Including family celebrations, short day trips with my partner and even a couple of weekends away. I just had to take things easier than usual (and it gives you an excellent excuse to have lots of naps - day naps are the best!).

    • Gerry2's avatar
      Gerry2
      Member
      21 days ago

      Hi Daisymoo​ and I would like to compliment you on your name!  I've always loved cows!

      I'm feeling so much better today thank you.  After going online and connecting with all you amazing people I'm in awe.... pity party is over for me and will give the therapy, support and confidence from my medical team a red hot go!  

      I think it all just hit me at once but now the shock is over a bit and I have a plan in place I feel a bit more control creeping in.... the worse bit for me was not really understanding what was going on and utter and complete information overload and being afraid I would miss something I was supposed to be doing! 

      Thank you DaisyMoo for your support, it really does mean the world to me, so many have reached out and I will definitely pay it forward to others.  Kindness and compassion and humour costs nothing but is worth more than anything I can think of.

      Love Gerry x

      • arpie's avatar
        arpie
        Member
        21 days ago

        I am SO glad you are feeling better .... we all know how that initial diagnosis feels & what it does to your brain xx. Put your trust in your Team ... they'll be doing their best for you - and we are here for helping too xx

  • arpie's avatar
    arpie
    Member
    21 days ago

    Hi Gerry2​ 

    It is a very personal decision, that only you can make - And very brave if you choose not to have treatment. xx

    Having said that - with the huge advances in medical treatment in recent years (think of  Professor Richard Scolyer who is pioneering new treatment tested on himself) is still getting out there, living as full a life as he can. 
    There are many new treatments - and with DNA analysis it can be tailored to your specific genome ...

    Don't write yourself off yet .... one of my friends who was diagnosed straight up with stage 4 Prostate Cancer (at the same time I received my own 'lesser' diagnosis 8 years ago when I was 64) ... is a few years older than me, so would be mid 70s now - his passion is offshore kayak fishing, for the BIG Pelagics!   
    He is still getting out offshore on his kayak, catching marlin, cobia and yes, even sharks .... and has even caught 5 marlin (all released) in the one day!!
    Admittedly, he is slowing up a bit now but so am I!  (His slowing down is as much from age as anything) .... So he is & has been "still him" for the last 8 years & will continue to be 'out there' for as long as he can - he still has enough energy to do other things he wants to do - and still loves his life.

    Remember - not everyone gets side effects .... 

    Keep chatting with your Onc.

    All the best xx