Anxious Newly Diagnosed

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  • Joleystub
    Joleystub Member Posts: 9
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    @janieboyd we're in fine company!  My surgery has been moved to Thursday 23rd due to a cancellation.   Less time to stress about it.  
    I see you're in Tassie too.  Good luck with your surgery.  
  • arpie
    arpie Member Posts: 7,801
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    Welcome to the blog, @janieboyd - feel free to jump onto the 'Newly Diagnosed' Category & tell us a bit more of your story - then you can add to it & it sort of becomes a 'diary' of your active treatment .... 
    Also, consider joining the ILC Private Group - we put up any new info that is found re Invasive Lobular ....

    Take care, stay busy, start cooking some meals & freezing them so that you don't have to think about cooking after your surgery ....  
  • janieboyd
    janieboyd Member Posts: 3 New Member
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    @Joleystub.  Thank you so much…..So glad your surgery has moved forward…… All the best!!!…….🙌🏼🙌🏼🙌🏼
  • janieboyd
    janieboyd Member Posts: 3 New Member
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    @arpie. ……Thank you so much. If there’s one thing I have learnt so far it is that there is never a shortage of people who want to help you make your journey easier….Thank you!!!🙏🏼🙏🏼🙏🏼
  • Rachelz
    Rachelz Member Posts: 3
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    I’m with you. Diagnosed today IDC er and pr positive. Grade 2. 
    More tests tomorrow MRI and CT another biopsy on Friday and back to the surgeon next Friday. 
    It’s all happening so fast and so unexpectedly. 
    Sending strength and positivity to everyone. 
  • arpie
    arpie Member Posts: 7,801
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    Hi @Rachelz ... sorry to see you've 'joined the club' too .. feel free to add your own post on the Newly Diagnosed so that you get dedicated replies relating to YOUR story.  xx. It can then become a bit of a diary too, that you can look back on later, for all your 'active treatment'.

    Make sure you go with a trusted friend or family member to all your meetings (for support and an extra set of ears) and consider recording your meetings too, specially with your surgeon & late, the Oncs/Lymph specialists - as it is difficult to remember EVERYTHING that is discussed.

    take care & all the best for your tests next week xx
  • WaynesMum
    WaynesMum Member Posts: 1
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    Hi @Joleystub, so sorry that you have joined the club but you are in the right place for support on this journey. I was also diagnosed on 22 April following a regular mammogram. I had. SMX on 10 May and have been surprised by recovery and how little pain I have experienced. I found the first couple of weeks following diagnosis the hardest. Things are easier now that I have a clearer idea of the plan. Things I found that have helped me so far are not to Google, limit which support groups you are a part of (this one is great) and say no to things you don’t want to do. My family and friends have been wonderful, but hanging with my dogs has been the best comfort!

    We are here for you.❤️
  • arpie
    arpie Member Posts: 7,801
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    Hi @WaynesMum - sorry to see YOU join the club too!!  Well done on your recovery - they often say that mastectomies are less recovery time than lumpectomies ....  As with @Joleystub and @Rachelz .... feel free to put up your own post on this category, so that you can share a bit more of your story & have dedicated answers .... followup on your pathology results & ongoing treatment options ... 

    Yes, often, learning to say NO to things is one of the hardest, as many of us women tend to try & please EVERYONE all of the time!  Feel free to share pics of your dogs/fur friends or art & crafts as well (the links are in here):
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest)

    take care xx

  • staton
    staton Member Posts: 22
    edited May 22
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    @Joleystub I went through the exact same thing. My mind went places where it should not go.. I was diagnosed in February. My anxiety was extreme, friends and family are supportive but I felt and still feel I'm alone on this journey. I had so much sadness and grief. My anxiety is better post surgery but I cant shake off the bad thoughts. I am having radiotherapy at the moment and have scheduled some counselling support with the public hospital where I am having radiotherapy. Good luck with your surgery xx
  • Joleystub
    Joleystub Member Posts: 9
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    Update - surgery done to remove the lump and sentinel lymph node last Thursday.  Feeling a bit better psychologically about it all at the moment.  Like someone said, it's the in between waiting  that can now be the hurdle.  Waiting to see the surgeon  for details of the pathology is my next step.  One step at a time 🩷
  • arpie
    arpie Member Posts: 7,801
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    Woohoo, that's great @Joleystub .... I felt HUGE relief  straight after surgery xx. Yep it is the waiting that sucks!

    I hope you are not in too much pain or discomfort - keep the pain meds up to it if you do xx Make sure you don't do any lifting/cleaning/washing/hanging out clothes or picking up pets and kids ...... 

    Wishing you all the best for your pathology (ask for a copy) - then you'll have a better idea of your 'going ahead plan'.

    Take care xx

  • Joleystub
    Joleystub Member Posts: 9
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    Hi Everyone.
    Well its been over a month since my last update and since then I have found that the surgeon removed all clear margins.  My surgery was 6 weeks ago today and after having seen the Radiology Oncologist last week and the Medical Oncologist yesterday, I've felt that there has been some 'treading water' as far as action is concerned.  Am I being impatient?  
    Anyway, my medical oncologist talked yesterday about the Optima Trial before I start any treatment (Chemo) and with all of the information overload, of course I overthought the whole situation overnight!  
    Action going forward though
    Bloods taken yesterday
    PET Scan tomorrow
    Referral coming for cardiologist to have a heart health screening 
    I will talk with my oncologist more tomorrow but just needed to reach out again to all of you in the same boat.
    When do we ever stop 'treading water'?

    #Optimatrial 

    :neutral:
  • byo_boy
    byo_boy Member Posts: 24
    edited July 4
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    Hi @Joleystub - That's great news about your surgery results! Honestly though, I feel your pain. The biggest, most miserable part of this whole journey so far has just been the waiting, waiting, waiting - even worse when you're waiting to get results. We have our initial Oncology meeting tomorrow where we find out what the results of Rebecca's PET scan was and what that means for our treatment moving forward. It's really the unknown that's doing our heads in, since we're pretty proactive people normally who just like to get on with things and so far all we've done is tests, more tests and talk, nothing actually practical yet to fight this thing.

    I suspect, having read literally hundreds of posts on this site and others, that once we start the treatment things will settle down and get into a more "normal" routine, but that still seems very far away right now! The kids do go back to school next week, which will probably help to make things feel a bit more "normal" too, but yeah totally get where you're coming from about treading water.

    Hopefully all your upcoming tests are clear and you can start swimming again :)

    Take care!

    George
  • Alfie
    Alfie Member Posts: 24
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    Hi @Joley and boy_boy

    Yes a huge waiting game. I think you just have to accept it and follow the process otherwise it does your head in. There are reasons for this.

    I am also in the same boat but a little further on. Even the surgery is an investigative process.

    In regards to the Optima trial, do your research. I am too high risk of the cancer returning as it was in 3 of 4 lymph nodes. However I did not want to risk it regardless. 

    Get some prior knowledge so you have an understanding before you see the Oncologist. Although I know it is so much.


    All the best with the Petscan results.
    Take care