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Newly diagnosed - await treatment plan

Mez_BCNAMez_BCNA VictoriaAdministrator, Staff, Member, Moderator Posts: 264
Original post created by member @Annette77in 'When is your birthday' thread, moved to own discussion in 'Newly diagnosed' category:

Comments

  • Cath62Cath62 Brisbane Member Posts: 762
    Sorry you find yourself here @Annette77. Waiting for results is hard and stressful. Hope you are keeping yourself busy until you find out. Once you have the results your treatment plan can be worked out for you. When are you expecting to get your results?
  • Annette77Annette77 MelbourneMember Posts: 17
    Hi @Cath62, thanks for your message. I’m hoping to get my results next week but I don’t have an appointment. I’ve asked the breast care nurse to chase it up for me when she’s back from leave next week. Everything is taking longer because of COVID and holidays. I managed to get an appointment within a psychologist at the hospital but it’s not until late February.
    I found out at my 3 minute consultation with the surgeon that I have dense breasts so I had a contrast mammogram on Friday to check if there are more lumps. Or if it has spread more within the breast. I feel exhausted from the anxiety and have to sleep in the afternoons.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,096
    So sorry to see you join the club that no-one wanted to join, @Annette77 xx

    I hope your scans on the 31st went well.  The waiting for results really sucks - as this disease really mucks with your brain as much (if not more so) as your body - I hope that you have a lot of family & friend support & that you are able to keep active & busy until you see your surgeon next, for the results.  Do you have a trusted friend to take with you to your appointments?  A 2nd set of ears can be invaluable as there is a lot to take in at your early appointments.   My sister in law asked more questions than I did!  She was a blessing!

    I would recommend that you also tape the appointments, so you can go over them later on, as it is easy to miss bits in the emotion of the moment.  

    With it being a public holiday weekend, most of the normal 'chat lines' aren't available now til Tues, including BCNA's helpline - If you need to speak with someone regarding any concerns, please call BCNA Helpline 1800 500 258 from 9am Tues) - but Beyond Blue is available right thru xx

    Beyond Blue Call 1300 22 4636   24 hours 7 days a week (All calls and chats are one-on-one with a trained mental health professional, and completely confidential)

    Having Dense Breast Tissue can mean that cancers are 'camouflaged' as both the breast tissue AND the cancer show as 'white' on the Mammograms - and are often 'missed' (as happened with mine. My GP found mine 4 months after a 'clear' mammogram.)  I am on a bit of a mission to get BreastScreen Australia to ADVISE ALL of their clients of their breast density at their first screening - as it is in OUR best interest to know that we really need to have an ultrasound AS WELL as the Mammogram - and possibly more scans/tests - for an accurate diagnosis.  Sadly, having dense breast tissue can also result in finding more advanced cancer - which is the MAIN reason that we should be advised of our breast density.

    Once you see your surgeon & have your 'game plan' - you should feel more comfortable, knowing that things are about to happen soon - tho the final game plan will only occur after your surgery & final pathology. 

    Please jump onto this thread, to see 'other areas' in the blog that may help you navigate the blog ..... we even have 'funny areas' to give us a laugh - or you can show us your gardens or pets ..... anything that you'd like to share.  The tick sheets (down the bottom) can help with formulating questions of your medical team ..... 
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest  

    Take care, all the best for your continuing treatment xx
  • Julez1958Julez1958 SydneyMember Posts: 346
    Hi Annette
    The waiting is the worst part.
    I worked myself into a frenzy after every scan and test including MRI, bone scan, brain scan, abdominal scan and to top it all off, PET scan.
    Once I was being wheeled into surgery for a mastectomy ( 6 weeks from initial diagnosis) I entered a temporary “ zen like” state and felt far  much more in control after waking up from the operation.
    I had no spread to my lymph nodes so didn’t have chemo but did have 28 sessions of radiotherapy mainly because of the size of my tumour (5.5cm).
    I ended up having the other breast removed and double DIEP flap surgery and am now on Letrazole for at least 5 years.
    I found this website invaluable and there is an amazing amount of useful material on here.
    There are a few private groups on this forum too that might be worth joining , I joined the breast reconstruction one.
    All the best and remember you can post anything on here, no question is to silly as we have all been there in one way or another.
    🌺

  • Annette77Annette77 MelbourneMember Posts: 17
    Still waiting for results. My GP followed up and was told the report has been written and the doctor will tell me the results in a few days. In the meantime, I have developed an infection in the biopsy site and have started antibiotics and stronger painkillers. I’m having a lot of trouble sleeping, partly because my breast has been so sore. Thanks, everyone, for your messages of support. They make me feel less alone.
  • Cath62Cath62 Brisbane Member Posts: 762
    Thanks @Annette77 for letting us know. The waiting is so hard especially when it's all written up and it's the doctor you need to communicate with you. 

    Re the sore breast, do you have one of those boomerang pillows. I found this comfortable when I had surgery. I hope the infection settles quickly for you now you have antibiotics. Hang in there.
  • Annette77Annette77 MelbourneMember Posts: 17
    Well, I got the results yesterday after chasing up the doctor through the breast care nurse and my GP. The contrast mammogram didn’t find any more lumps but the lump is bigger than they told me from the earlier mammograms and ultrasound. 3cm rather than 2cm. I’m having surgery next week, then wait until 2 February to get the results and treatment plan. I’m feeling much better now I have a surgery date and know there doesn’t seem to be other lumps but a bit scared that it’s larger than they told me. The lump is still sore but that’s probably from the infection. The antibiotics have helped a lot.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,096
    That's a Bummer about the bigger size @Annette77 - but good that you've got a surgery date.  Try & keep yourself really busy between now & then, doing things you love doing .... and stay away from Dr Google xx

    Not long now & it will be gone xx take care & all the best xx
  • Annette77Annette77 MelbourneMember Posts: 17
    I had my surgery last Thursday. I felt really good on Friday, so relieved it was over and the lump is out! Feeling a bit more pain and very tired yesterday and today. The pain meds I had during surgery must have worn off. Trying to avoid thinking about the pathology results and the wait until 2 February to find out. I’ve had so much support from family and friends and the wonderful women on this website. The silver lining to a dark cloud! Thanks, everyone.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,096
    edited January 15
    Good to hear you are going well, @Annette77 - that feeling of being tired can also be caused from the anaesthetic .... just make sure you keep taking those pain meds ..... it is easier to 'keep on top of it' than to start from scratch again with deep pain, if you haven't been taking them.

    Terrific that you've got lots of support around you xx.  As you are 'able', get back to doing the things that you love or even think of taking up a new hobby too .....

    Do the exercises that have been suggested .... and all the best with your pathology results - make sure you have a buddy with you & even consider recording the ongoing meetings re your game plan .....

    take care
  • Cath62Cath62 Brisbane Member Posts: 762
    Great to hear you are ok @Annette77. Having that cancer out is a relief. February seems a long time to wait for pathology. I had mine the next morning after surgery as they did a sentinels node and second node biopsy during surgery to provide results immediately. Waiting is hard but try to keep a bit busy somehow post surgery depending on what you can do. Fingers crossed on those results for you. 
  • Annette77Annette77 MelbourneMember Posts: 17
    Thanks! I think COVID has slowed pathology down a lot. The doctor said he might call me at the end of next week or the week after if there are some results by then. I’m planning to walk in the gardens today, which is one of my favourite things to do. My apartment doesn’t have a balcony and I’m craving fresh air. 
  • Julez1958Julez1958 SydneyMember Posts: 346
    Hi there
    The waiting is the hardest part.
    I didn’t find out about my pathology report until 2 weeks after the mastectomy as my case had to be discussed with the hospital multi disciplinary team.
    I had no cancer in my lymph nodes but the lump was 5.5 centimetres so my treatment plan was radiotherapy , hormone therapy ( Letrazole) as I was ER positive , and I was advised chemotherapy not required.
    Everyone’s case is different but 
    once you have the treatment plan you will feel a lot less anxious.
    All the best.
    🌺
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