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ay123's avatar
ay123
Member
2 months ago

Not sure where to turn for advice

Having been recently diagnosed with a 7.7cm tumour in my B-cup breast (luminal A, invasive ductal carcinoma) and no detectable tumours elsewhere, I've been scheduled for a mastectomy next week, followed by radiation, and possibly chemo, age 43.  I don't want to have a mastectomy or subsequent treatment, for a number of reasons.  Psychological firstly.  Not having longevity as a goal.  Not feeling I can physically show up and consent to disfiguring, aggressive and permanently polluting (of body) treatments - feeling that I'd rather die a natural death.   Not fearing death.  Not feeling any psychological aversion to what's in my breast, not feeling any pain or physical inconvenience from it currently. And also because if it hasn't spread in all the time it took to get that big, evidence that I've found seems to indicate it's not going to spread.  (i.e. cancers between about 6cm and 15cm at diagnosis have about equal chance of also having been found in lymph nodes or elsewhere at diagnosis - the 15cm cancers were once 7cm but no greater chance of spread in all that time? Seems the horse has already bolted and is just hiding out dormant elsewhere in body already, or is just peacefully grazing in its own paddock and will never bolt, so either way what's the point in closing the gate / lopping the tit anyway?) I know this is such an unusual way of thinking and I'm having so much trouble getting relevant advice.  If I don't get treatment what can I expect my body to do? I'm also very worried about causing distress to people close to me who still expect me to get these awful treatments, I feel pushed by their expectations to do something major to my body I feel personally averse to, I don't know how to tell them.  Wondering how to not distress others in any way, seems to be the cause of the majority of my own distress. Any suggestions for where to turn for more advice, or if anyone has had similar thoughts, or evidence/articles to contradict the idea that cancer spreads early in its development if it's going to at all, or just impressions about this situation you might like to share, I would appreciate it. 
(I have just started seeing a general counsellor with no cancer knowledge, and have also contacted Cancer Council counselling and made an appointment but that will be in 3 weeks.  I don't think they'll have the medical answers I'm after, anyway. More support and sooner and more relevant could be so stress-relieving.)  Sorry for long post and weird topic.
chemotherapy
depression
invasive-ductal-carcinoma
mastectomy
radiation
  • cranky_granny's avatar
    cranky_granny
    Member
    2 months ago
    Hi there @ay123. 
    It’s a real scary ride when first diagnosed 
    I admit to feeling the same as you in the first days after hearing that dreaded C word. Having lost my husband just 14 months before to cancer. 
    I look back now at all the things I would have missed out on if I had made different choices. 
    Graduations, New grandchildren and now a great grandchild. 
    The choice as to what to do is purely yours to make  
    Counsellor helped heaps. I admit I googled too much in the first days. I now know that most of the stuff it says is very negative and outdated. Im glad I found this site. No one judges we can only pass on our own experience and get good resources from professional through the podcasts which all help us along the way. 
    Yes no one knows whether the cancer has Spread already.
     Mine did spread (metastatic) but I am still here 8 years later with treatment options still available to keep it under control. 
    I now focus on enjoying simple pleasures doing what I want and enjoy. I found out im stronger and more resilient than I thought in the beginning 
    my scars are proof of that and they don’t make me who I am as a person. 
    I do hope you can get through this and definitely contact mcgrath foundation also we have a helpline as well. 

  • brightspace's avatar
    brightspace
    Member
    2 months ago
    Hi my dear many here have similar diagnosis...

    Old chic 55 at DCIS diagnosis15 years later many bc miles later
    For me it was to just have mastectomy no recon 

    One step at a time was my mantra
    ...on with swimming n hiking n uni degree
    Post surgery no pain and minimal scar  for me...need for rads or chemo 

    Everyone is different and there is a lot to take in 

    Pathology after surgery will more accurately determine the next step for your therapy decisions

    We are so lucky to have the most amazing health system options
    Great health profesional offered me the options available and I made the decision with family support

    All the best 
    Bright in hope





  • Suki's avatar
    Suki
    Member
    2 months ago
    Hi @ay123

    It is great you are getting counselling - this is a mental disease as well as a physical one. 

    I may be wrong, but from what I am reading you aren't scared of death but are seeking info on the manner of death to make a decision on treatment or not?  If that is the case, it might be helpful to speak with someone experienced in the palliative care area?  

    Chemo is a systemic treatment with the aim of "cleaning up" any cells that may have spread.  I was definitely freaked out by the thought of having it (and cried when I found out that was the recommendation), but now on the other side I am so glad I had it.

    All the best xx
  • Afraser's avatar
    Afraser
    Member
    2 months ago
    Dear @ay123

    Seeing a counsellor is a good start. That may help you to prioritise a number of strong feelings. If it helps though, many people when diagnosed have no pain or physical inconvenience from their cancer, often felt perfectly fine. That they may then feel very unwell from treatment is an unpleasant and unwelcome irony. But for many, and some much older than you, life is very precious. You are properly concerned about the impact in treatment for you on those close to you. But you might also consider the impact of a protracted and possibly unpleasant death. 

    I’ve had a mastectomy (no reconstruction) and chemo. I don’t consider myself disfigured - I have the record of an illness and the considerable skill and knowledge that stopped that illness. My body has proved remarkably resilient and endlessly wonderful. I got through chemo with no fatigue or nausea, worked throughout. 

    But you are the only one really who can make this decision. Your counsellor may be able to assist you in deciding the degree of risk you are willing to take. Deferring your mastectomy for a few weeks may be preferable to deciding against it entirely. These are hard decisions none of us like making but they are still always ours. Give yourself a little more time to reflect on an unwelcome and unwanted situation. Best wishes whichever road you choose. 
  • Esjay's avatar
    Esjay
    Member
    2 months ago
    So sorry to hear of your diagnosis @ay123! I was 41 when I was diagnosed and it honestly was the furthest thing from my mind.Life was fast paced and I was flat out keeping up with my 3 teenagers. I didn't need anything to interrupt all the fun I was having with them.
      It really does take a while to process all the thoughts that go through our minds and I must admit I felt like you.. with no pain & loads of energy why do I need to subject myself to all this pain & disfigurement?
    But then I had to stop and think.. who do I want to listen to? The wonderful doctors with all their learned wisdom and evidence based statistics or my own ignorant reasonings.
    Invasive cancer is just that..Invasive. it waits for no one and has a mind of its own. Too many lives have been cut short by its willful ways leaving loved ones distraught.
    Ultimately the decision for treatment is your own..it's your life. But remember your family and friends and the medical staff only want the best for you. If that means a chapter of suffering to give you a lifetime of joy then it's worth it. Life is a gift..live it.

    I suggest you give BCNA helpline a call tomorrow..1800 500 258. They are so willing and able to hear your concerns and will help you sort through your thoughts.
    Do you have access to a McGrath breast care nurse?
    If not, look up https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/
    Once you enter your postcode you'll find all the details of a nurse who can be there just for you to answer all your questions.

    Wishing you all the best for all that lies ahead for you. Remember you are not alone, there are thousands who have travelled this road and are again living their best life.