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Stop the ride...going too fast

lovemelroselovemelrose Member Posts: 6
edited September 7 in Newly diagnosed
I found the lump on Saturday15th August. They kept saying cyst. By Thursday I was told over the phone buying a box off nappies it was cancer. 
The bad news kept coming from there. 
It was triple negative. It was grade 3. It looks to be the Angelina Jolie gene one. 

I had 2 surgeries last Tue and Thurs (lucky I found it early and small but it was in 2 nodes)

I am seeing the surgeon again tomorrow then the oncologist later this week. 

All this terminology is a new language that I have yet to discover the meaning for. 

I don't know if I'm stage 1 or 2. Just that its TNBC and Grade 3. Likely 6 months of chemo, they've said radiotherapy and the dr was hinting a double mastectomy and reconstruction. 

I am 38. I am exhausted. I'm confused. I'm scared and I have 2 little girls who need me. They keep saying not to google but it's all I can do. I am terrified. 
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Comments

  • primekprimek Broken HillMember Posts: 5,400
    Have you had gene testing already or are they assuming this?. It generally takes some time for those results and requires 2 blood tests. My surgeon truly believed I had this also but I didn't.  It didn't impact my initial treatment just what I did after.

    It's a whirlwind in the beginning. I hope you have been connected with a breast care nurse.

    There is a reconstruction group on here if you are interested in joining to talk about options and see pictures.
  • iserbrowniserbrown Regional VictoriaMember Posts: 4,314
    @lovemelrose

    There's so much to take in and terminology that is not part of the everyday so concentration on what it actually does mean as well as......

    This link from the BCNA website hopefully will help and also give you an opportunity to absorb and formulate questions for your next appointment

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

    https://www.bcna.org.au/resource/fact-sheet-breast-cancer-pathology/

    and there's also a group within that may interest you

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

    Take care and take a deep breath as there's a lot to take in 
    Keep posting as there's always someone online that may relate to your question and help you out
  • Cath62Cath62 Brisbane Member Posts: 90
    HI, it sure is a fast ride. Processing everything is hard. Just as you find out one thing and try to deal with that, there is something else that comes along it seems. I know it is a ride but everyone here on this side is here for you. It is great yoy joined this group.  Try to use this site rather than the wide google thing. The other site that is helpful is the cancer council if you must. Big breaths, stay busy which is easy with 2 girls to keep you occupied.  Stay in touch here with everyone. Sending hugs ❤
  • ddonddon Member Posts: 329
    Please don’t google. It just terrifies you and right now the shock and fear are overwhelming enough without Dr Google putting His bit in. 
    I just want to reassure you that this part - this early horrifying part - will settle down and you will feel normal again. We all understand the initial terror - many of us are younger( some very young) and have young families who need us. We panic and wonder how we will ever get through the confusion, the sleepless nights and the constant fear. But we do, and in time we accept and go forward. You are in the best country in the world ( a little biased I know) and treatment options are very good. Take one day at a time and try not to overwhelm yourself with stuff that’s out of your control. 
    My oncologist told me recently that my job is to eat good food and exercise and leave the rest to her. That was helpful because those things I can do. 
    Sending a massive hug - you can do this xx
  • CathywCathyw Member Posts: 49
    Yes, try and focus on the here and now, once that's done, then look at the next step...I used to have a meltdown before I started something new...surgery, got through that, then radiotherapy, got through that, then medication, trying to get through that. For me it's fear of the unknown, once I get started on the known, I'm ok...Next for me will be 12 month scan in November...a bit of scanxiety coming up. One step at a time..and know you have lots of people here who are dealing with similar things...reach out if you need...
  • RaichRaich Member Posts: 88
    Big big hugs @lovemelrose. I feel like I’ve been shot out of a catapult and have little control over what’s going on. I have been contacted by several counseling services through the Cancer Council, Canteen, the hospital where I am being treated and the Breastcare nurses at my local Cancer Centre. Chat to your Breastcare nurses and see who they  can put you in touch with. Even chatting to them can be a big help. Xxxx
  • Caz1Caz1 Bayside , Melbourne Member Posts: 276
    Hi @lovemelrose
    this bit at the start is the hardest. The world feels like you are swirling around and you are trying to process a million pieces of information and all the feelings too. Just take it  One step at a time.
    And stay away from google! The best, most relevant info is here at the BCNA.
    @ddon is right, we are one of the top places in the world for treatment of BC. Us and Finland lol!
    Its a fact. And what her oncologist said is gold, control what you can, and leave the rest for your team. 
    There is great support on here, feel free to ask questions and vent.  We all get it  ;)
    You can do this gurl!
    Sending big hugs 

    Caz x
  • FLCloverFLClover Member Posts: 386
    Hello @lovemelrose

    I was diagnosed in Feb this year at the age of 39, found it myself and was also initially told it’s prob a cyst. They then found two
    more in the right breast, and one in the left. No family history and got tested for BRCA gene due to them not being able to find any other reason (got results recently and am negative 🥳). To say I was shocked and petrified is an understatement. I still get flashbacks from those early days, esp after my double mastectomy. Those feelings don’t stay. Make sure you have a medical team you trust 100% and you’ll be just fine. It’s very hard to go through but it does get easier, and you will start to feel a little more ‘normal’ pretty soon. Leave google for now and get any info you need from this site and from your medical team. Just remember one thing, you can beat this without a doubt. That’s all you need to tell yourself. I also have a young daughter and she is my biggest motivation, as well as myself. Keep in touch 🍀❤️.
    Mon Xx
  • SisterSister Adelaide Hills, SAMember Posts: 4,712
    @lovemelrose I think this period that you're going through is the hardest.  I remember veering between despair and numbness.  Once the treatment actually starts, you should find that you are a bit more centred.  Maybe still very scared and anxious but the out of control kind of feeling should settle a bit.  Your job now is to manage your health and well-being as best you can - it can be difficult with young children (and I guess by the nappy comment, you've got at least one very young one).  It's very hard to stay away from Dr Google but I would advise it, too.  There are a few good sites out there - mostly ones that are similar to this.  Remember that a lot of what you may read when googling is based on old data and stats.  Breast cancer treatment has come a long way in a short time and I believe that is extra true for triple negative.

    You may wish to join the young women's closed group on this forum.  Take care.
  • AfraserAfraser MelbourneMember Posts: 3,190
    Taking something to occupy the time is a good idea, whatever you most enjoy. It can be a bit slow especially on a busy day. You may feel sick but then again, you may not. I never felt sick through six months of chemo. My neighbour couldn’t make it home without nausea. It varies a lot. You’ll be given anti nausea meds with the chemo and also meds to take at home if you need them. I gave them up entirely after four treatments, but they can be immensely helpful if nausea is a problem. You will work out after a couple of weeks how your own cycle of side effects works - many people experience fatigue, usually in the middle of the cycle but it’s not invariable. Once you know your own reactions, it’s much easier to plan for good days and not so good days. Most day oncology centres offer snacks and tea/coffee. Best wishes. 
  • Cath62Cath62 Brisbane Member Posts: 90
    Hi again,  regarding tips for chemo there are some on the site here. I have 4 chemo rounds to go (3 after today). I have never been nauseous which is grest. 

    I have found having meals prepared ahead helpful if you can do that or have a friend make a couple for you.  Handy for days when you may feel a bit weary.  

    I drink lots of water to help my veins on the day before chemo and my chemo day especially. I think it helps me as i have gone through chemo without a port.  

    Exercise really does help. I walk most days and try to do some pilates type exercises as well. As much as I have plenty of tired days I do find that exercise makes me feel better. 

    Until you start chemo keep busy. Chemotherapy is a scary word when you don't know what it involves. I try to tell myself each time I do that the chemo drugs are like a healing light that will destroy any random cancer cells and not affect my healthy cells. I use meditation and relaxation techniques to visualise the chemo healing me.  I also try to tell myself that chemo drugs as re just like any other course of drugs used to make people better. For example we take antibiotics and finish the course to ensure the bug doesn't come back. So we do the chemo to treat the cancer and make sure it doesn't come back.

    Be kind to yourself and try to rest as well. We are all going through a big deal and it's ok to take time for yourself. I hope you have some supportive people around you to help at home and with your girls. Sending hugs x


  • FLCloverFLClover Member Posts: 386
    Nice @Cath62, I love the visualisation method 👌🏻. I did the same with radiotherapy. I think it helps a lot 😊
  • ZoffielZoffiel Regional VictoriaMember Posts: 3,054
    My best tip for chemo is to request a port. Your team may have suggested it,  but if they haven't, enquire. Chemo like pro, none of the endless stabbing and jabbing. A caveat here, they don't always work like they should, but having done the shit show with and without,  I can't recommend them highly enough. Good luck. Mxx
  • LocksleyLocksley Macedon Ranges, VictoriaMember Posts: 182
    Hi @lovemelrose sorry to see you here.   The ladies on this site have wonderful tips and suggestions.   I was diagnosed in April 2020 and many times I have said to myself it's like a rollercoaster I want to get off.  But I have found taking one step at a time helps me.   Write down your appointments and any questions you have because so much information comes flying at you so fast.   I hope you have a support network at home to help you.  Sending you hugs xxx
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