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Waiting game

SiewliSiewli WollongongMember Posts: 24
I have been diagnosed with breast cancer last Monday. I suspect that I m in Stage 4 as my specialist thinks the lumps have been 12-18 mths. I know my body is feeling pretty bad n getting nerve pain n isomia and yet I m still waiting for lymph nodes biopsy n PET scan to be done. Then another week of delay that I can see my breast specialist for treatment plan or surgery. I m afraid my body cannot wait any longer. Is there a way to get treatment immediately? Is this a norm to wait about 2-3 weeks to get treatment plan?
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Comments

  • ZoffielZoffiel Regional VictoriaMember Posts: 3,303
    @Siewli don't over think things at this stage.

    I know, you are reading this thinking 'Oh, thanks for that helpful hint' 

    You won't know your staging until you have all your tests. Even then, unless you are metastatic, staging is not a particularly helpful tool. 

    Whatever is going on has been brewing for a while. A couple of more weeks can feel like an eternity once you know something is wrong, but testing and screening takes time--regardless of who does it. Two or three week to get a reasonable idea of your diagnosis is quite speedy. Getting a treatment plan can take considerably longer.

    The main thing is to get into the system. Don't be distracted by timelines for other people's disease; what happened to someone else's wife/sister/friend/hubby is irrelevant.  Your particular version of this shitty disease needs to be fully understood before your team can figure out the best way forward for you. It takes time.
    Mxx
  • SiewliSiewli WollongongMember Posts: 24
    Thanks @Zoffiel. Really appreciate your response n encouragement. I hope I still can draw from other people's positive experience n  hang in there n I wanted to get better. This is so hard.
  • Cath62Cath62 Brisbane Member Posts: 768
    Hi @Siewli, it sure is a hard time. I remember the waiting and the anxiety of it all. It is so overwhelming especially at the beginning. So much to understand and learn too on a topic none of us ever thought we would have to deal with. @Zoffiel is right about not over thinking it. 

    Try to keep busy so you are distracted, do things you enjoy and spend time with people who are positive and supportive. If you think too far ahead you will only get anxious. Stay in the present moment. Thinking or over thinking is not going to change what test results. 

    Breast cancer is unique for everyone and everyone's treatment plan is different too. The thing is your drs need to have all the information to form the best path forward for you.  Also just because a cancer is there awhile doesn't mean it is stage 4 at all. Could be slow growing. It is natural for humans to think the worst but the reality is that treatment is so good these days and improving all the time. 

    Hang in there. Sending positive vibes to you. We are here to support you when you get those results. Hope you have a good weekend.


  • SiewliSiewli WollongongMember Posts: 24
    Thanks @Cath62 for your encouragement. First lump biopsy already shown a grade 2 cancer cell..n my 18mm lump has spread to a smaller lump 7mm next to it. Also showing lymph nodes swelling. And I m feeling unwell having chills n pain. It's so hard to go thru it when u are unwell n lost appettite.
  • AllyJayAllyJay Member Posts: 863
    @Siewli we all understand your anxiety in wanting your treatment to start, but as mentioned above, your team need to know exactly what they need to treat. There are many different types, as well as the grade and stage of breast cancer, and each requires a different plan. Just like say, bears. If a zoo is told they're getting a pair of bears and they start preparing for the arrival of grizzly bears. They get in huge stocks of the type of food that they eat, and plan the enclosure for them. Then the truck arrives with a pair of pandas which only eat bamboo, or polar bears who don't eat berries and vegetation, but who need nice fat seals, arrives.....Just as the needs of bears differs, so too the treatment of your particular cancer. They have to clearly identify it, then treat it. Some get chemo first then surgery, others surgery then chemo. Then there are those who don't even need chemo at all. Some get radiotherapy...others not. Some a full mastectomy, others lumpectomy....and other variations of treatments and the sequence of events. Use this waiting time to perhaps cook and freeze some meals and also to move items in cupboards and wardrobes to middle shelves as it's likely you'll find reaching up to get the coffee or whatever will be easier without stretching after surgery. Thinking of you and wishing you all the best with your treatment.
  • SiewliSiewli WollongongMember Posts: 24
    Thanks @AllyJay. I will try to hang in there. Appreciate for the tips of moving stuff to lower area. Thanks.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,103
    Absolutely, @Siewli - definitely don't overthink things and DEFINITELY don't use Dr Google.   A lot of the stuff that pops up there is very old and will most likely not relate to your diagnosis.   It will only scare you.  There is lots of good info on your other post, too - so maybe read that one again, too ;) 

    Try & keep as busy as you can in between the 'waits' - the waiting time between appointments & surgery etc absolutely mucks with your brain even more than anything else! .... Keep doing things you love, that will help distract your mind.  If you can do physical activity as @Cath62 has said - even just walking - it should also help with your insomnia.

    As it is such a sneaky beast, most of us would have had their cancer growing for some time before it was 'discovered'  .... Did you find a lump yourself? Or was it a GP or was it Breast Screening?  What state are you in - pop it into your Profile - we may have other members living nearby that you could even meet up with, covid willing? 

    Just take one day at a time, one hour, if necessary.  

    I hope you have supportive family & friends around you to help you thru this anxious stage and your ongoing treatment - once you've got your surgery date & treatment plan afterwards - you'll be surprised at how much 'better' you'll feel.

    Take care

  • SiewliSiewli WollongongMember Posts: 24
    @arpie Thanks for the encouragement. I just put in my location. Yes I found the lump myself as it was itching alot and did a self check and straight to GP that I found hard lump. Now I'm blaming myself for not doing self check regularly or ultrasound yearly for early detection.
  • AfraserAfraser MelbourneMember Posts: 3,856
    @Siewli
    Don’t blame yourself! Whatever we did or didn’t do, the challenge is to deal with what is now. Think of all the things we can’t check!! It’s exhausting to maintain a constant check on every part of our bodies that might suddenly malfunction. Keep your energy for the next steps. As everyone says, you’ll find it a bit easier with more knowledge and a plan. Best wishes. 
  • SiewliSiewli WollongongMember Posts: 24
    @Afraser yes I shall look forward. Thanks for your response. I must eat well and keep energy up for next steps.
  • Julez1958Julez1958 SydneyMember Posts: 356
    Hi @Siewli
    Your heading definately resonates with me!
    I was diagnosed with breast cancer in my left breast in August 2020 after I found a lump only 12 months from a previous mammogram.
    The bad news was it was 5.5 cm but the good news was it turned out to be slow growing ( lobular , ER positive) and had not gone to my lymph nodes.
    Because of the size of the tumour my breast cancer specialist got  me to have a variety of scans including a PET scan and before each scan I was convinced this would be the one that showed  I had stage 4 and was going to die soon.
    It turned out I had stage 2 and after a double mastectomy and radiotherapy ( didn’t need chemo) I am on hormone tablets for 5 years.
    My understanding is that less than 10 percent of breast cancer is stage 4 when diagnosed and the survival rate for breast cancer these  days is very good  but statistics are often no comfort when you are playing the waiting game and your mind is going to dark places.
    All the best with your results and treatment - I found once I had a treatment plan I calmed down a lot.
  • SiewliSiewli WollongongMember Posts: 24
    @Julez1958 Thanks for the response and encouragement. I had a 18mm lump and next to it is a 7mm lump. It shows as Grade 2 cancer cell and shows lymph nodes have swollen plus I am feeling unwell with the nerve prickling pain at random places. Can't help feeling helpless in this waiting process. As what all the ladies mentioned above, I just need to wait for treatment plan to be out.
  • SiewliSiewli WollongongMember Posts: 24
    It doesn't sound good that I received a call to book in for Dr phone consultation regarding my lymph node biopsy result n I m heading for PET scan tomorrow morning..it seems I keep getting bad news...
  • arpiearpie Mid North Coast, NSWMember Posts: 6,103
    Concerning as it sounds to you, Try not to get ahead of yourself and the results  @Siewli..... take lots of deep breaths ... Do you have a breast care nurse to chat with?  

    All the biopsies, tests & scans are just tools of a more accurate diagnosis ...... it looks like your team is being very thorough.

    All the best for the scan and the results xx. 
  • SiewliSiewli WollongongMember Posts: 24
    @arpie I don't have a breast care nurse yet. I m so nervous for my PET scan as I can feel pricking pain head to toe these 2 weeks. Can't help thinking I m in worst case scenerio.
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