Newly diagnosed

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kyles1
kyles1 Member Posts: 15
Hello
I'm newly diagnosed as of last week,I see my surgeon this coming Tuesday.
My head is still spinning with my diagnosis.Ive started to write down questions for my surgeon but its so hard to no where to start with it all .
Any suggestions of information I may need would be greatly appreciated..
Sending love to all 💖 

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  • June1952
    June1952 Member Posts: 1,876
    edited October 2023
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    Hi there @kyles1 - welcome to this group no-one thought we'd think of joining.  Congratulations on finding the site.
    You are on the right track - write down anything which crosses your mind, no question is too small or too silly.
    Until you know more about your diagnosis it is hard to think of questions as you don't know what is ahead.
    Do you know anything at all ?  Perhaps you can tell us the type of BC, what they have said is necessary treatment ?
    Do you know if it is a lump ?  Ductal ? Lobular ?  Extensive ? Is the lymph involved ?  The more you can tell us the more ladies can help you.
    Thinking of you.

  • kyles1
    kyles1 Member Posts: 15
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    Hi @June1952 , honestly getting my results at the cancer clinic is a bit of a blur but I do no it's stage 2 carcinoma.I have two large lumps deep in the breast and it's has also spread to my lymph nodes..But besides this I really don't no much more unfortunately..
    I am so grateful for this site and the information on here ... Thankyou 
  • kyles1
    kyles1 Member Posts: 15
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    Sorry @June1952 I have also been told I will need , chemotherapy, radiation and hormone replacement treatment ❤️
  • arpie
    arpie Member Posts: 7,733
    edited October 2023
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    So sorry to see you here @kyles1 .... we'll do our best to help you out & make these first weeks 'easier' xx. Make sure you stay AWAY from Dr Google - as everyone's diagnosis is unique & a lot of Google info is old & out dated just not relevant to your situation.  Plus, it can scare you!

    All the best with your surgeon appt this week - great that you're writing down questions already, as it is SO easy to forget them once in the room!!   Take 2 copies, and give him/her one copy, & tick your list off as the questions are 'covered'. 
    I would suggest that you record ALL your meetings on your phone - as it is almost impossible to remember everything that is said.  Also, try & take someone with who you fully trust - as both support and 'ears' .... my Sister in Law came with me and she was a godsend!  She asked much more relevant questions than I did ... I was like a deer in the headlights ..... I couldn't think of much to ask!  :( 

    If you find yourself feeling really stressed or anxious, ask your GP to refer you to a counsellor - or ring our 'Helpline' here, Mon-Fri, on 1800 500 258 for a reassuring chat xx  You should also be linked to a Breast Cancer Nurse too - and you will be able to put any questions to them too.

    Feel free to check out these other areas in the forum that you may like to join in with comments xx. There is info there on what to take to hospital with you & even 'tick sheets' to 'self assess' how you are going - you can fill them in & take them with you to your medical appointments.
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Charlotte Tottman (a Breast Cancer Psychologist) was diagnosed herself about the same time as me & has some wonderful podcasts to listen to - she is very down to earth & the podcasts are so easy to listen to.
    Start at No 13 (for the first Series) and work your way down, then go back to the top for Season 2 ... (When you click on the link, It will take you to another window, away from BCNA.)


    Take lots of deep breaths xx Keep as busy as you can between now & your Appts .... and take care
  • kyles1
    kyles1 Member Posts: 15
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    Thankyou so much @arpie the information you have let me know will help me so much it is truly appreciated..I will definitely also check out the check list for hospital as that's been another thing I wasn't sure what to take.  The breast screening clinic gave me soft pillows for under my arms so that was a nice start ❤️
    I hope your journey is going well and your kicking your diagnosis butt xx
  • Afraser
    Afraser Member Posts: 4,390
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    Hi @kyles1

    Commiserations, this isn’t where you want to be but welcome nevertheless. I had one tumour and several suspect lymph nodes (only one turned out to be malignant). So...
    it’s likely your surgeon will be looking at removal of the cancer and also chemotherapy. You want to ask if he/she plans surgery first or chemo first (there are good reasons for both depending on the nature of the cancer). Radiation is often used to kill off cancer cells in any breast tissue remaining after surgery or any area close to
    the cancer. Hormonal therapy (pills) helps protect against any development due to
    oestrogen in the body, which may encourage your particular cancer. 

    You will want to get a clear path of treatment and a time frame for critical starts. Your surgeon may recommend an oncologist - you are not bound to this recommendation but if your surgeon and oncologist work together regularly and maintain patient notes (as mine do) it can be very useful.

    Cold caps may help save your hair if you have chemotherapy - ask if it’s available. It doesn’t work for everyone but it’s worth a shot! Ditto ice covers for hands and feet to
    protect against peripheral neuropathy (may be particularly important if you have any of the taxane chemotherapies).  

    Ask, ask everything. This is brand new to
    you and you are justified on asking all questions that matter to you. Most good practitioners are happy to know that their patients want to know.

    Best wishes. 


  • Abbydog
    Abbydog Member Posts: 482
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    AFraser and Arpie have said it well,
    Sorry for your recent diagnosis. It is an anxious time. Writing questions down is a great idea. I do it before most Dr's appointments. Taking someone with you is great too, as they may remember what you do not. I'm not sure if recording is allowed, you should probably ask first. Given that you say your treatment is extensive, you will keep on getting questions. Keep a piece of paper handy.
    There is more than order for treatment. Sometimes Chemo is first. You won't know this until you see the surgeon, probably.
    I had great Doctors, who told me everything I needed. 
    There was no Breast Care Nurse (there doesn't seem to be many of them in SA)
    Things to consider:
     -You may be offered an Infusaport. It is a Port inserted in your upper chest to give IV access for taking bloods and giving Chemo. I had one and recommend it. Some people have a PICC line, for IV access.
     -Consider trying the Cold Cap for Chemo. You may be able to keep most of your hair. I used it and can tell you more later if needed.
     -If you have Income Protection Insurance, and you wish to use it, you should start the paperwork ASAP
    There is usually a waiting period.
     - Ask the Dr's for copies of blood tests, scans etc. It is amazing how often they can be handy.

    Once you know more, you may feel better having a plan. 
    I hope that I haven't caused you any additional stress.

  • kyles1
    kyles1 Member Posts: 15
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    You ladies are all truly remarkable I can't thankyou all enough for your caring support and advice .It makes me feel a little more equipped for what lays ahead of me ..❤️