I’m so lost

tamazahriel
tamazahriel Member Posts: 3
edited December 2019 in Newly diagnosed
Hi all, I am newly diagnosed with Breast Cancer. I am 34 years old and I have 3 children- 9,8 and 4. Because I have been in shock for about a month and the stress of it all has got me lost. The doctor who gave me my results seemed to just be ticking boxes when he showed me my plan. He did not explain the hormone receptor test and what it all means. All I know is that I am positive with all 3 receptors and I am a grade 3. I’ve just been told that I need surgery and depending on the surgery- If it isn’t good I’ll be heading to chemo but if it is ok it’s radiotherapy. I feel so lost. I was just bombarded with so much information that I do not even understand it all and to make matters worse, I tend to freeze when I hit a stressful situation :( sorry for the long post. Just wanted to talk about it 

Comments

  • Afraser
    Afraser Member Posts: 4,441
    It’s like being spoken to in a language you simply don’t understand at first - combination of shock, fear and denial. Utterly ‘normal’ and completely confusing. Particularly with young children in the picture. It can help to take a friend or unflappable relative with you for discussions with your medical team, someone who can remember or write down what is said but also ask questions on your behalf if required. Others on this site will have some good advice about telling your children and letting them know, in appropriate ways, what’s going on. Chemo isn’t fun but for many it’s doable and not as bad as they had feared. Important thing is to feel confident about your medical team and the advice they are giving - to feel that way, you need to be able to talk to them about your feelings and your questions. It does get easier as you have a clear plan about treatment. Hard as it is to see the good side,  your bc has been found and it can be treated. This is a good place to ask questions (none are silly) and to let your feelings out safely. Best wishes. 
  • tamazahriel
    tamazahriel Member Posts: 3
    Thank you so much afraser :) I think I needed that reassurance. Appreciate it more than you know :) thank you 
  • Sister
    Sister Member Posts: 4,961
    It's so frightening to get the diagnosis and if you've got young kids...well...it's hard not to think the worst.  If you have a partner, relative or good friend who is clear-headed and you trust who can come to appointments with you, it makes it a bit easier.  I found so much went over my head or I forgot simply because I couldn't focus properly.  If you don't like your surgeon, ask your GP to refer you to another.  It's an important relationship and one in which it's essential that you have confidence.  Regarding the kids, my advice is not to keep secrets - they are way scarier than the truth - but make sure the information is age appropriate and let the older ones know that they can ask questions and get truthful answers.  Better that they come to you than fret because someone else has said something.  Have you been advised about a Breast Care nurse - it seems to be a bit hit or miss who has access to one but it may be worth enquiring as they can help you navigate the system.  Re: chemo - not something anyone would choose to do but you can get through it if you need to.  A few have bad side effects, some get through with minimal problems, most of us are somewhere in the middle - nothing like the movies.
  • iserbrown
    iserbrown Member Posts: 5,729
    A couple of links from the BCNA website to help you through 

    https://www.bcna.org.au/understanding-breast-cancer/talking-to-family-and-friends/

    https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/

    The one above has a link for pathology to give you depth of understanding 

    And a link to a group with others similar age to you

    https://onlinenetwork.bcna.org.au/group/10-young-women

    Yes easier said than done, deep breaths. Keep away from Dr Google

    Take care 

  • PV123
    PV123 Member Posts: 202
    Hi @tamazahriel
    I agree it is so confronting when you first get the BC diagnosis.  I agree with Afraser, it really helps taking someone with you. The other person can write all the info while you ask the questions. My BC is positive to two receptors, that is oestrogen and HER2.  When I was diagnosed late last year, I found the wait between diagnosis and surgery the most difficult. My GP was also a good source of information.  She said to me that “BC is very well researched and funded.  The outcomes and success rates for BC are very good so be positive and go ahead with the treatment suggested by the oncologist.” 
  • Michele B
    Michele B Member Posts: 136
    Ladies here have given you very sound advice. I just wanted to wish you all the very best and to reassure you that you are never alone,  thwre is always someone on here to off support and advice.
    Take care
    Michele xx
  • Brenda5
    Brenda5 Member Posts: 2,423
    Your results aren't as bad as you think. Do you have a breast care nurse who can explain it and support you? https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/
  • kezmusc
    kezmusc Member Posts: 1,553
    edited December 2019
    Welcome @tamazahriel

    I know what you mean about freezing.  My brain goes into a zoned out zombie fog when there's something I don't want to hear, so I have to wait a bit and hope I can decipher it later. Mostly I just ask to be given information in dumb terms please :)

     If you can access a breast care nurse definitely get on board with her.  They are brilliant at decoding the language for you and can be a really helpful liason between yourself and the surgeon if you are too worried to ask questions.

    You learn pretty quickly that you are your own best advocate along the way.  If you are not happy or don't understand please please say so and always ask what the choices are.  Sometimes we feel there are no choices, but there may be alternatives.  

    Best wishes lovely. 
    xoxoxo



  • primek
    primek Member Posts: 5,392
    Usually if triple positive then you would be having chemo and targeted therapy. However your surgeon will be able to explain this and hopefully you'll be linked with a breast care nurse very soon. 
  • ara
    ara Member Posts: 28
    Hi Tamazarhiel,
    I am 35 with 2 kids a 3year old and a 1 year old and got diagnosed with HER2+. I just wanted to tell you that it is completely normal to zone out. What I do during doctors appointment is I record the whole thing so that I dont miss anything especially if you feel you have trouble comprehending things. Second, its normal to be scared with chemo but dont be its not as bad as it seems.. well of course everybody reacts differently but with me I am sick no energy to eat for 4 days post chemo then after that you are back to your normal self so I just eat my hearts out getting ready for the next battle. I dont know if you are religious... but it really helps if you pray. Just surrender all the pain and worry you have and you will be suprised of the calmness it brings you.
  • Flaneuse
    Flaneuse Member Posts: 899
    @tamazahriel You've received some good advice from some of the women here. Certainly, if you tend to become overwhelmed - and that's normal ! - take someone with you to your next appointment - someone with a cool head who will help you get the answers you need. WRITE DOWN all your questions and the factors you need explained, don't allow yourself to be rushed, and make sure you get answers. Also ask for an email address that you can use to ask follow-up questions or get clarification.

     It's a scary and confusing time waiting to start treatment. As has been pointed out above, there are lots of resources on this site, but don't hesitate to ask specific questions. There will be someone here somewhere who knows what you're talking about.