New to MBC. How to stay positive when every Onc meeting seems to bring less certainty?

odette
odette Member Posts: 7
Hi,  I'm new to online forums, so here goes.  I was diagnosed stage 2 grade 2 BC in 2014 aged 36. Find out 27/12/23 metastasised to my bones at age 46.  Married, 3 kids (9,11,12). It's not hormone receptive anymore, so treatment is looking like chemo,  after hip replacement and radiation.  I enjoy a laugh and some practical tips on how to keep going with this new norm.  
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Comments

  • Afraser
    Afraser Member Posts: 4,370
    This is not at all what you want, but humour and tenacity are good allies in your strategy! I don’t know how long your chemo treatment might be but can only encourage you to be as optimistic as possible about seeing it through.

    Have you had chemo before? If so, you may have similar reactions so can be prepared. If not, while nausea and fatigue are common side effects, some (like me) don’t get them at all. Hair loss is also common - personally, I went the wig road, good quality synthetic, light, easy to look after, helped to feel ‘normal’. 

    Others will be better placed to advise on dealing with diagnosis and treatment with children. Their capacity to accept and assist, in appropriate ways for their age,  is important in the wellbeing of you all.

    Best wishes. 


  • arpie
    arpie Member Posts: 7,567
    Sorry to see you join our select little group, @odette.  That is really bad luck, having the recurrence from 10 years ago  :(  xx

    All the best with your treatment plans odette ..... we have members who are 10+ years into their Stage 4/Mets journey ..... A girlfriend in Qld had her Mets located in her hip - she had the hip replacement surgery & is pretty well back doing whatever she likes now - traveling the countryside in her caravan, making & selling her handmade Sterling Silver jewellery ..... She had radiation but not the chemo - and from memory is on Letrozole.   She makes all sorts of art & craft stuff and loves going hunting for opal (anywhere) or gems up in Northern Qld.

    I wonder if any of the newer Immunotherapy drugs may be thrown in the ring for your treatment?  Some with Stage 4 have even been trialled on Keytruda (immunotherapy usually used for Long Cancer & Melanoma - but having a good effect on some forms of BC as well!). It could be worth mentioning to your Onc.

    Try & keep as busy as you are able whilst you are waiting for your treatment/surgery ..... maybe cook up & freeze some meals in readiness, so you have stuff when you get home xx. 

    You may like to join the Young Women's group - with your kids ..... various organisations (like Canteen and Red Kite and Camp Quality) where they give kids a chance to be kids & have fun with other kids who's parent may have cancer.  Your hospital Social Worker should be able to point you to local organisations who may be able to help too.

    take care, take one day at a time ... try not to get too far ahead of yourself re the treatment & side effects - all going well, you won't have any xx
  • Julez1958
    Julez1958 Member Posts: 1,114
    Hi @odette
    A metastatic breast cancer diagnosis is no longer the certain death sentence it once was - there are many ladies who have lived many years in treatment for this disease and new treatments are being developed all the time.
    It’s cliche but try and live one day at a time , savour the good times and always have something to look forward to.
    Consider joining the” Living with metastatic breast cancer” private group on here for more targeted advice and support.
    Take care 🌺
  • Abbydog
    Abbydog Member Posts: 482
    Dear Odette,
    I'm not in the same position as you, as yet.
    Unfortunately and fortunately for me I've known many women with BC at my workplace (a large hospital)
    When I got BC, I had been 'well informed' of experiences.
    A friend on my Ward, became Stage 4, in 2020.
    She had a hip replacement, with a specialist Orthopod.
    She has been doing very well since. A lovely lady, she always manages a smile.
    She also gave me lots of advice on diagnosis (2020), and Reconstruction, and an insight to her world.
    All the best for your Surgery and treatments to come, I hope all goes well and you respond well.
  • Joanne213
    Joanne213 Member Posts: 10
    I want to know how to stay positive as well as I just diagnosed breast cancer and the lump is big and still not know if it has spread out...very worry and want to just give up 
  • arpie
    arpie Member Posts: 7,567
    edited January 10
    AWESOME list there, @Cath62 ..... for ALL OF US!  

    I LOVED Readers Digest & Laughter, the Best Medicine, @Julez1958 - it was well read by the time all 8 of us in the house had read it.  It was a monthly ritual!  And also the funny quips at the end of most stories, to 'fill in the gap' ....  I actually found a 2nd hand book containing ALL the funnies from RD at that date .... it was SO good!  I probably still have it somewhere!

    I hope you are going OK @odette xx. If you are feeling anxious or sad, please consider Ringing the Helpline on 1800500258 (Mon-Fri) if you'd like to chat xx




  • Cindi
    Cindi Member Posts: 133
    Hi @odette, I want to send you good wishes and hope it turns out well for you, a lot of good advice here.

    and @joanne213 don't give up, I know it's scary but it may NOT have spread, it's hard waiting I know but are you having a lumpectomy soon? They will probably take some Lymph nodes and that way you will know more. I had 3 large tumors removed as well as lymph nodes and luckily the nodes were clear. Even if it is in a lymph node it's NOT a death sentence, many women on here have this diagnosis and get through ok.
     So try to not worry too much, and the advice from @ cath62 is very helpful.
    xx
  • Joanne213
    Joanne213 Member Posts: 10
    @Cindi, thanks for your encouragement. my lump size is big so specialist requested chemo before surgery. I feel so scared and also I still have many scans to do, just finished the MRI today, still have CT, Bone n PET scans...they all sound scary... 

    Specialist feel my lymph yesterday and think they are normal, my ultrasound shows no enlargement of lymph, but I started to feel pain in the breast n also some minor neck and shoulder pain...so scared that it has spread and I googled the symptoms...looks like I have them all...
  • Afraser
    Afraser Member Posts: 4,370
    @Joanne213

    Google is simply brilliant at connecting you with scary symptoms - which in all
    probability you don’t actually have. Those of us a bit further down the track know the extraordinary range of twinges, pains, odd sensations etc that manifest before an important test. Or any time when you are feeling stressed. Anxiety likes to make itself felt! We get used to these ‘ghosts’ and when we do, they usually vanish. Tell your oncologist by all means but give up googling. If it worked, we would have no need of surgeons and oncologists. My early mucking around on Google indicated unquestionably that I had inflammatory breast cancer - I didn’t. The waiting is hard to do but Google is not your friend. Even if lymph nodes were enlarged, it doesn’t necessarily mean malignancy. I had a lot of very enlarged nodes, and all but one were simply ‘irritated’ by the nearby tumour - no malignancy at all. Chemo will also mop up any cancer prone cells, even at extremely early stages. Eleven years on and so far I am well, no recurrence. Take heart, this is winnable! Best wishes. 
  • Joanne213
    Joanne213 Member Posts: 10
    @Afraser.. thank you so much for your support, I just finished MRI today and will have CT, Bone n PET scan next week, hope the injection is not gonna hurt as I got very fine vain n most nurses can't deal with it properly, so even need to use baby needle on me
  • Afraser
    Afraser Member Posts: 4,370
    A good experienced nurse should be able to use a very fine needle. You may want to consider a port - a vein entry point that gets put in place once and is used for blood tests, infusions, whatever. A good nurse or your oncologist can advise. While all the tests are a bit of a whirl, most people feel better just to be doing something!! While it’s important to have faith in your team, don’t hesitate to ask questions or tell them if something is concerning you. Good communication helps a lot. Best wishes for next week. 
  • Abbydog
    Abbydog Member Posts: 482
    Dear joanne213,
    I think your comment is mixed in with Odette's question on Metastasis BC.
    Have you been given a Stage of BC ?
    You may be told that after your surgery.
    Afraser has given good advice above.
    Try not to panic before you know the whole story. 
    Even if you have it in the Lymph nodes, that is not Stage 4.
    That is only after it has spread to other organs.
    The pain you have described, could also come from stress. Which is very understandable.
    The tests you have been ordered are fairly routine.
    To determine if it has or has not spread.
    Most of us have had these extra screening tests.
    I hope that you get good news, ie no spread.
    All the best.




  • odette
    odette Member Posts: 7
    Thank you @Cath62. I loved your list and the advice.  Thank you to all who have respond.  Xxx