Surreal

Ali78
Ali78 Member Posts: 3 ✭
in Newly diagnosed
Conversation with my GP and Diagnosed with breast cancer yesterday at 46 years old. When they called and suggested I have a support person attend it was a bit of a give away. However i  was still hopeful it was all benign. This is the very beginning of my journey in which many incredible women have been. I am seeing a surgeon today and further scans and tests to follow to determine staging and treatment. 3am and I can't sleep with so many what ifs running through my mind. I would love to seek advice for this incredibly early stage, what questions to ask my doctor? What self care did you do that you found helpful? What supports did you have in place that worked for you? What would you do differently if you could? I guess I am in a land of limbo for a few weeks and desperately trying to have a positive focus on what's in my control. 
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  • arpie
    arpie Member Posts: 8,197 ✭
    edited November 21
    So sorry to see you joining us here, @Ali78 ... we can all remember when they 'got the news' ..... I was out on my kayak, fishing (having already made a 'follow up' appointment after my biopsy) so when the GPs office rang me & suggested I book an appointment .... I knew too.    It is so confronting and confusing (as you look & FEEL healthy) but this little sucker is growing sneakily without our knowledge .... so needs to come out.

    Where abouts are you?  (Suburb/city/town)  We may have members nearby who can point you to specific support groups and services in your area.  (Go to your profile & just add your region.)

    Whack up any questions that you may have .... we'll do our best to answer them honestly and help ease your journey.   I'd suggest you listen to the Charlotte Tottman podcasts of her own diagnosis/surgery/recovery - she is a specialist Breast Cancer Counsellor who was diagnosed herself about 5 years ago - and she was surprised that her own reactions were different from what she'd thought they'd be, given her conversations with her clients!  She is very easy to listen to - and she now knows exactly what it is like 'as a patient'.
    http://www.drcharlottetottman.com.au/my-podcast.html

    Re Questions to ask - this is out of the Breast Cancer Booklet put out by Cancer Australia 
    https://www.cancer.org.au/assets/pdf/understanding-breast-cancer-booklet


    The standard treatment for breast cancer caught early and if the surgeon obtained clear margins around the tumour is lumpectomy followed by radiation and possibly hormone suppressing meds. Some may require chemo.  Not everyone goes thru all those treatments tho.

    IF you don't feel comfortable with your surgeon today, don't be afraid to ask to see a different surgeon. You need to be totally at ease with your surgeon.

    Does your surgeon work in the Public System as well as Private? If you go Private for surgery, ask for a Fee Quotation.  I went private for surgery (with a fairly large $$ gap to pay, but I had the surgery just days after meeting the surgeon!)  Then I went public for both my Radiation & Oncology, with no fees. 
    Ask for a copy of the pathology report (ALL reports), as even if you can't understand it at this stage, you will have it for future reference.  Your pathology report (after your surgery) will define your future treatment.
    If you have radiotherapy at a private centre there may be a big out of pocket expense, ask to go public if at all possible. Your surgeon will refer you to a Radiation Oncologist and also to a Medical Oncologist. 

    Also, a    sk them what treatment they would suggest if it was their mother/sister/wife .... How long you'll be in hospital .... 

    Check out this thread - it may cover a few of your questions already ..... definitely take someone with you to ALL your meetings until your active treatment finishes.   Also consider recording them on your phone so you can go over it again later - as it is impossible to remember everything that has been said.   Then you don't have to take notes (as you miss bits then too, when writing stuff down.) 
    DO take a list of questions with you (even 2 copies - one for them & one for you, so you can tick them off as they are addressed.) 
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

    Self care - I just did what I love doing, right up to the surgery day & then as soon as I was able - I got back to it afterwards!   You need to keep yourself busy once you are able .... It may take a while to get back to 'normal routine' but just take it slowly ..

    Try not to get ahead of yourself with the 'what ifs' ..... and definitely stay away from Dr Google - as a lot of the info is totally out of date or not even relevant to your own diagnosis xx

    Take care & all the best for today xx

    Just found this, for making the 'next day' easier ..... get it all ready the evening before! 


    And other Self caring tips from a buddy who is a psychologist xx


  • Cath62
    Cath62 Member Posts: 1,482 ✭
    Hi @Ali78, big breaths for all this. These first few weeks are overwhelming. You have now joined our little club and none of us want to be in it but here we are. It's great to reach out and continue to do so as you need to.

    My advice is to take one day at a time. There is much to process and the doctors have to get all the information first to be able to treat you correctly. It takes time. It does feel better when you have a treatment plan but sometimes the whole plan comes together after surgery. Be patient and trust the medical people. 

    I had my husband come to my appointments and I always had a note book. The questions you ask depend on what you know now and what you want to know.  

    I told a small group of friends at the start. Just know some friends may be overwhelmed too and family and friends can react in ways we don't exist. 

    In terms of self care. I walked, did yoga, meditation, ate well and lots vegetables and fruit. I am not a big sugar fan so I didn't really hard to give that up. I just did things l liked doing so I was busy. Keep busy so you don't dwell on it all. Easy to say and harder to do but it is true. 

    Once you have your appointment today you will know more. This is step one. After surgery you will know more again and what the next step is. Feel free to update when you get more information but for now deep breaths and don't get ahead of yourself. Stay away from Google too. It really isn't helpful at all and there is much out of date information. 

    Hope your appointment goes well. Best wishes 
  • Suki
    Suki Member Posts: 33 ✭
    Hi @Ali78

    Sorry to hear about your diagnosis - it can be a very stressful time, but you might feel better once you have seen your specialists and have a plan forward. The type of breast cancer will inform your treatment, so you should know more once some pathology is done.  You may have access to a breast cancer nurse, which is an awesome support for queries/discussion.

    I was a similar age to you (47) at diagnosis.  I continued to work part-time through most of my treatment (which was chemo, surgery & targeted therapy), because I wanted to maintain some sort of routine and normalcy and also because it was possible with my kind of work.  However, I know other women who took extended time off work.  

    I also continued most of my exercise/sport, although modified depending on how I felt and what my oncologist recommended (ie not competing and not putting my head in the swimming pool due to infection potential).

    Not sure if you have family/kids.  I have two teenagers, so we decided to tell them straight away and let them know that they could talk to their friends or a counsellor about it (for support).  We also let their school know.  My husband came to appointments and took notes which was great because it is really hard to take in information, particularly in the early period.

    All the best xx
  • Tri
    Tri Member Posts: 223 ✭
    Hi @Ali78 I am so sorry you’re having to go through this, I can’t imagine how this might have felt had I been diagnosed in my 40s. Sending you virtual hugs. 
    There’s much wisdom shared in the above comments by our network friends; so incredibly helpful. 
    A few comments on what I wish I had better understood at the start. 
    I didn’t know that breast cancer isn’t “one size fits all”. And, by extension, my treatment would vary depending on the attributes associated with my specific breast cancer type, the size of the tumour(s), family history and quite a few other factors. 
    My GP suggested that I book a time to see them after my first visit to the surgeon in case there were questions I had not thought of in the surgeon’s rooms or needed more of an explanation about different options.
    You mentioned more diagnostics. When I was recommended to have them I did not know what the difference between the tests were, and how they might be important for future benchmarking - this website could be helpful: https://www.canceraustralia.gov.au/cancer-types/breast-cancer/symptoms-and-diagnosis/tests-breast-cancer
    If you can, clear your calendar so you can prioritise these tests.
    I would ask the surgeon if you have “dense breasts” and just make a note of it, it can be helpful to know when your treatment is over.
    It may not be necessary for you but I wished I could have seen the oncology day ward where I would be going to have my chemotherapy beforehand. 
    Ask your oncologist if your area has an oncology exercise physiology rehabilitation program. They can be so beneficial for both education and feeling safe whilst you maintain fitness during the treatment. 
    Self care is also one of those important aspects but it’s so varied, as we all cope with fear and worry differently. During the lead up I kept reminding myself of all the things I had adapted to in my life and this too was something I could do. I reminded myself of the many, many incredible people who’d been in my shoes and whose experiences have successfully shaped the tailored treatment I would be lucky enough to receive. Basically it was a “glass half full” approach but as that’s how I am generally, I think it helped me face into the treatment because it was authentic for me. 
    I feel, on reflection, that the waiting phase you’re in is probably the toughest, so thinking of you and hoping you can sleep and find out what you need. 🌻🌻🌻
  • jennyss
    jennyss Member Posts: 2,083 ✭
    Dear @Ali78,

    from jennyss in Western NSW
  • arpie
    arpie Member Posts: 8,197 ✭
    Hi @Ali78  You are now officially 'on the treadmill' and it will be fairly hectic over the next month or so - but you'll feel SO much better after the surgery, just knowing that it it GORN xx.  I know that I was!  I was a blubbering mess entering the hospital the previous day (which is totally normal - which was just fear of the unknown!) ... and I woke up with a weight off my shoulders!  (If you click on my 'icon', you can read my 'early' story!)

    Keep updating this post with your progress .... All going well you will be assigned a Breast Care Nurse soon ... and she will also be your 'go to' person for lots of questions & answers, as well as us - as we've 'been there, done that', so know exactly what you are going thru & feeling. 

    In the BCNA link I put up the top, is a bunch of 'tick sheets' that you can use to self assess your own mental and physical health along the way (if you become a tad concerned - which is also totally normal!) .... You can take them with you to your appts as sometimes it is easier to 'show them' stuff, than talk about it xx. We also have a wonderful Helpline that you can call too, to have a confidential chat on 1800 500 258 (Mon-Fri 9-5.)

    I hope you have good family & friend support. You may be surprised who will 'step up to the plate' and who may 'step away'.  Sadly, it happens xx

    Take care & all the best with your ongoing appointments.
  • cactusk
    cactusk Member Posts: 72 ✭
    Hi @Ali78
    This forum was and still is such a source of wisdom, comfort and a safe place to vent, share - it really is such a resource.
    In the early days, I formed a WhatsApp group for friends and family. After each significant moment (appointment or result or decision) my bestie updated this so that my nearest and dearest had up to date info at the same time, and I didn't have to go through the same story over and over. It really helped me keep people in the loop who cared about me, and meant I didn't have to worry about people not knowing. As others have said above, this bit is a whirlwind but as the path forward becomes clearer it really is a step by step process.
    All the best to you,
    Kelly
  • Beginner
    Beginner Member Posts: 8 ✭
    Hi Ali78 - sorry to hear your news. I was diagnosed at a similar age (44j.

    Thinking of you and wishing you well in your treatment. I felt much better once there was a plan to treat the cancer. It was a relief to have the cancer surgically removed. 

    I did have to go through chemotherapy as well (though not everyone does). I ended up taking leave from work to go through chemo and I am glad I did.

    I am back at work now though and am on hormone blocking medication long term.

    One of the things that helped me during this period was changing my diet to be healthier (adding more vegetables and protein in particular) and keeping as active as possible. During chemo I only went walking but since that has finished I am also doing strength training which I feel has improved my wellbeing. Also, having support from family and friends helped me to feel better during this difficult period.

    All the best.
  • Ali78
    Ali78 Member Posts: 3 ✭
    Thank you everyone for your suggestions and personal experiences. I've written them down in my journal. I have a full day of tests tomorrow MRI, CR and full bone scan. These tests do not worry me. I have Chrons disease and have had more MRIs than I'd like to admit. The limbo waiting period is not a fun place to be but I realise it's part of the journey. I will have a plan come 2nd December at my next surgeons appt. My husband will be away however my mother-in-law is coming with me. My mum died of endometrial cancer 4 years ago and my Dads prostate cancer is trending in a negative fashion. I was unable to have children due to complications with Chrons disease, however I have a beautiful relationship with my 16 year old step daughter with whom lives with her mum. 
    So I am trying to keep myself busy. Busy with work, I work within community and find it incredibly rewarding. I love exercise and smashed out a spin session last night...infact I am doing a course to be a gym instructor. My sleep isn't great  but I'm trying to get it back to normal. Focused on well-being, keeping busy, wirk, gardening, beach walks with my dalmatian, yoga and meditation. I feel like a roller-coaster this week some says I feel like I've got this other days I'm a mess. I had to stop HRT last week and no doubt that is playing its part....perimenopause and hormones have a lot to answer for. 
    Overall, I am positive and just keep on keeping on xx
  • arpie
    arpie Member Posts: 8,197 ✭
    Wishing you all the best fro your scans tomorrow xx. @Ali78.  Good on you for keeping yourself busy (it really does help). It sounds like you have a full list!  

    Woohoo on becoming a gym instructor!!  Feel free to share your tips with me on gentle exercise - I need to get fit for a big kayak fishing trip mid next year!  ;)  

    Yep, it can be a bit of a roller coaster - and definitely check out the Charlotte Tottman podcasts - they will cover most things that you've thought of so far ....

    I hope your sleep issues resolve - chat with your GP about that.  I used to read for at least 30mins before turning the light off - but was advised to 'use the bed to go to sleep' .... just go to bed & turn the light off, no reading or watching TV!  My staying awake now until 2am have reduced dramatically!!  Less than once a week now .... which is amazing, as it was virtually every other night prior to that!  Give it a go.

    take care & all the best xx

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