Here Goes

TabooGalTabooGal Member Posts: 83
edited June 2 in Newly diagnosed

 Hello. My name is Jenny and I live on the NSW/Vic Border. I have gone to post in here a couple of times but backed out. Denial maybe?

On Wednesday I was officially given the diagnosis of BC. I have had a large lump for around a year but I have 26JJ sized breasts and the lump is down along where the bra wire sits. I put it down to thickening because of the bra wire. I recently started Lite N Easy and after loosing around 10kg I noticed that the lump was much larger than I thought. It has its own postcode ;p Its 5cm x 3cm x 2cm.

So I did the mammo and ultrasound and knew when I called for results, that the urgency by my GP to get me in to see her, that something was very wrong. That day I had bloods, CT scan and was booked in for biopsy. All along I was doing as much research as possible. Armed with knowledge I have always found it easier to deal with things. Must be part of the anxiety I have day in and out.

I met my surgeon on Wednesday who gave me the diagnosis. I was alone at the appointment and was in shock, none the less. I guess I was hoping it was just a mass that they just wanted to remove for safety sake. I do remember asking him what type of Cancer and I vaguely remember him saying Metastatic and that its very common. I am booked in for a lumpectomy and node removal on the 22nd. (Tuesday Week). I am then too do 5 weeks radiation.

I've got all of that in my head and ready to deal with. But now I am reading all of the paraphernalia and Metastatic means I have it in other places in my body? Do they know where? Does this mean I will probably have to do chemo after radiation?

I know I am overthinking all of this and should take it one day at a time. I work 3 days a week and also on partial DSP. Being at work keeps my mind off things. I am planning on taking vacation leave for the rest of the week after my lumpectomy. I am so grateful that my oldest of 2 (daughter) is able to travel up from Melbourne to bring me home from the surgery and stay with me for a couple of days.

Another questions. I had been using implannon rod to control my periods, over the years. The last one was put in around 2011 and is still in my arm somewhere. As I have very thick arms I cant feel it and haven't bothered about it. I believe that it has run out of the hormones anyway after all of this time. Is this something I should tell my surgeon about?

I have so many questions. When will I start radiation? Will someone contact me or do I contact them?

I met my Breast Care Nurse but she was heading on vacation to France the next day. I have the number of another one and I will phone her and make contact with her this week.

It's like my whole life is about the Cancer now. I am being strong in front of everyone else but these times at home alone I am terrified.

Sorry if this is all over the shop but that is how my head works. I have been treated and continue to be treated for Depression an Anxiety for close to 20 years and have only recently found a good balance. The Lite N Easy journey was me actually caring about myself. Some days I shake so much it looks like I am having a min seizure.

Usually I am upbeat and cheeky and able to find the lighter sign of things. But tonight I am low.

Any insights would be wonderful.


 

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Comments

  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 845
    @TabooGal so sorry u have to join us here. It sounds like u have a lot of questions and @SoldierCrab will be along soon with a list of resources for u. I would definitely make a list of all the questions I have and would definitely let all your medical team know about the rod. All these hormones can make a difference with your cancer. I would also get a big folder and keep copies of all your medical records and pathology. Thinking of you and sending big hugs. U will find a huge amount of advice and support here. xoxox
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 2,270
    hi TabooGal 

    sorry you have need to be here... 

    Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

    It can be a a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

    The what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258.  The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.


  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 2,270
    @primek
    might be able to answer some of those questions you have posted.... 
    my advice is take it one day at a time .... please know that the forum is a supportive and inclusive group who will support you, accept any tears or ranting and help you work your way through the Roller Coaster ride called Breast Cancer..
    Do you live alone ?
    you might need a bit of help
    There are local support groups your breast care nurse should be able to help you there. 
    Will  your treatment be in NSW Or Vic ? 

    never feel scared to post in this forum 
    Soldiercrab
  • TabooGalTabooGal Member Posts: 83
    thank you @Kiwi Angel and @soldiercrab. the Breast Care nurse organised the My Journey Pack for me and it arrived on Friday. I have been reading reading reading. I do live alone with both of my children living in Melbourne but I have an incredible amount of support from my work friends. and other local friends. I feel blessed in that way. Asking for help is another thing. stubborn? Even though I live in Vic (Wodonga) my treatment will be just over the border in Albury. We have a fantastic new Cancer Centre there. So again I am blessed as to not to have to travel far. Thank you for making me feel so welcome.
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 2,270
    @TabooGal
    one thing Breast Cancer does is teaches us to ask for help to get through this ride.... 
    Great to see your BC nurse is on the ball and got your my journey pack organised for you. 

  • primekprimek Broken HillMember Posts: 4,126
    Welcome @TabooGal . Well what a horrible week you've had. You have a lot to take in. I think it's important you get copies of your pathology and scans to help you understand as much about your illness and then you can ask questions.
    Not all breast cancers require chemo...even metastatic ones. If it is estrogen positive you may well qualify for  the new medication just approved which can't stop advancement for years.

    I think also as you were  in shock from the news delivery you might have missed things. ..or misheard things ... so hense requesting copies. Your breast care nurse can then go through things again with you.

    After lumpectomy they will then redo pathology just to be sure and see if in only 1 node or many.  Radiotherapy if no chemo required will be around 3 to 5 weeks after surgery. If you need chemo you will have this before radiotherapy. 

    I would mention  the implanon as it might still have some hormones in it and best removed.

    Whst you are feeling is normal. Most of us did not sleep in tbe first weeks. And yes our life is about cancer and appointments for quite a while but it bevomes less frequent as things stabilise. Let us know how things get on and please call the other breast care nurse tomorrow for suppory. Kath x.

  • TabooGalTabooGal Member Posts: 83
    Thank you @primek I will do all of those things. You have answered so many of my questions. Bless
  • EastmumEastmum SydneyMember Posts: 336
    Hi @TabooGal - welcome to this amazing community. You have already had lots of fantastic advice. I'm just wishing you all the best for everything. I joined this forum in January and have found it to be the most wonderful, supportive and informative place. No matter what your question or concern, someone on here has 'been there done that' and will generously share their knowledge and experience. There's no judgement - just wonderful people, happy to help and often, lots of laughs.
    Keep in touch and let us know how you're going. xxx 
  • kmakmkmakm MelbourneMember Posts: 2,807
    edited May 13
    Hi Jenny. So sorry you've had to join us here. I was a 'lurker' too, and I was much further down the track than you are when I finally joined. It is has been amazingly helpful for me, warm and supportive, and with quite a few laughs as well!

    The beginning is the absolute pits. You sound like you know what to do. Breathe, take it one day, one hour, one step at a time. Meditation, talking to your counsellor - both these things have helped me. I was diagnosed with BC at the beginning of last December, and with (long standing) anxiety & depression in January. It's the latter which has caused me the most grief as I've moved through my cancer treatment (I get the shakes something chronic sometimes). In addition to the cancer that is! You might be ahead of the eight ball on this front, use the skills you've learned It's easy to say but harder to do, but try not to cross the bridges until you come to them.

    Once your treatment is plan is set, and then underway, it gets easier. Humans have a great capacity to get used to things, to normalise them. Yes, your life is all about cancer now and it is SO tedious in so many respects, but what to do? It is what it is, and our generally excellent medical system is going to do its best for you. Your breast surgeon will take the lead in co-ordinating your care, referring you to an oncologist. They will guide you through your treatment. Your breastcare nurse will hold your hand, connect with her asap. If you don't gel with her, get another. They can be invaluable.

    Definitely tell your surgeon about the rod. Don't spend the next ten days wondering what you missed at the last appointment. Your surgeon will understand that you found it difficult to take in. Give them a phone call and ask if they can answer some questions. They might be happy to do so via email, or prefer you to come in for an appointment. If you get no joy, ask your breastcare nurse; she should be able to sort it out for you. Don't torture yourself with not knowing unnecessarily.

    The beauty of this forum is you don't have to pretend here! I have six people in my house, inc four kids, that I have to put on a 'face' for, and being able to rant/vent/sob here has been a lifesaver. We've got you Jenny, we'll hold your hand. Hang in there. Kate xox

    PS Well done on the weight loss! Don't give up on that front. My efforts to lose weight through cancer treatment have been successful and thinking about it was sometimes the only thing that distracted me from BC. Absurd, but true!
  • primekprimek Broken HillMember Posts: 4,126
    Also sorry about my typos. I'm a phone typer and was late getting tea started as wanted to finish the post so no rechecking.  :D :D

    Also continuing light and easy is perfect. Weight reduction is recommended for bc patients plus the ease of ready meals will be invaluable. 
  • SisterSister Adelaide Hills, SAMember Posts: 1,456
    Welcome to the forum @TabooGal .  It's such a shock, isn't it?  I don't have anything to add to what is here but if you're unsure of any information you've been given then ask - surgeon, bc nurse or your GP.  You won't get the definitive answers about your tumour and the nodes until the biopsy comes back from the operation.  Then, after recovery from that, your suggested treatment will be outlined for you.  Not everyone chooses to, but it can be a good idea to take someone you trust with you to your appointments.  It's easy to be focusing so much on one thing that you don't hear the next.  And take a list of questions so you don't walk out forgetting the one thing you really wanted the answer to.
  • TabooGalTabooGal Member Posts: 83

    @eastmum Thank you for your welcome. I think its all starting to hit me. I was up much of the night crying and find myself unable to go to work this morning and face people. The being strong and tough whilst I told everyone has faded somewhat.

    @kamkm Thank you also. The brave face you talk of is slipping at the moment. I will make contact with the other Breast Care nurse today and also phone my surgeons office to see if they can email me copies of all of my test results.

    @primek You never need to apologise to me about typos. I work as a receptionist in a very busy office and my emails to pass messages onto staff are often jibberish. Over the years they have all learnt to work out what I am typing.

    @sister Thank you and also thank you about the results to my surgery being the definitive answer for my treatment path.

    Every one of you has taught me something I needed to know. I am honoured to know you all and thank you so much for your support. I suspect I will be on here often and hopefully you can get to see the brighter and funnier side of me. Bless you all

  • SisterSister Adelaide Hills, SAMember Posts: 1,456
    @TabooGal I bought a 2 ring zip up binder from Officeworks (well, I started with a binder, then upgraded to a lever arch folder) and some clear sleeves.  I put EVERYTHING bc in that, and have it divided into things like "treatment", "work", "well-being".  You collect a lot of bits of paper on this rollercoaster and it's good to keep them in one spot.  It also means that I can take the whole thing with me when I go to an appointment and know if I have to refer to something, I have it there.
    The other thing that has been good is in the beginning I "appointed" two really good friends as gatekeepers to tell everyone else and with the instruction that I didn't want to be inundated with people visiting, ringing, etc to see how I was.  Then my husband set up a blog for me (I'm sure I could have done it eventually but he wanted to do something practical) and I post updates and general life musings on that.  I passed that address out to anyone (including work colleagues) who I thought would be interested.
  • kmakmkmakm MelbourneMember Posts: 2,807
    edited May 14
    I've set up a variety of WhatsApp groups at different points. One message goes to all, very useful. I got my husband to deliver info and news when I didn't want to or feel able to. Everyone seemed to understand and was respectful. With the exception of my sister who felt the need to abuse and criticise me from her holiday in New York when I had just finished chemo and was preparing for my bilateral mastectomy & reconstruction. I blocked her on our private channel. Now she can only communicate with me on the ones we share with other members of the family. No abuse so far...

    Someone is pretty much awake here at anytime of the night. So don't feel you have to cry alone. There's a thread called Who else can't sleep? that @Sister started ages ago. It has many contributors! Big hugs, K
  • TabooGalTabooGal Member Posts: 83
    I ended up not going into work today. I needed sleep without tears. As I don't have any leave left I will be in the same space as a lot of you beautiful ladies. Not sure how I am going to pay the bills. The first thing that will go will be the Lite N Easy  :sweat: I rang the surgeons office to ask the receptionist to email me copies of my reports. She didn't like that idea
     She suggested I get the when I see the surgeon post surgery. She is going to ask the surgeon about my implanon rod and get back to me. My concern is I have no idea where it is in my arm. Fat arms.  ;) left message with another BCN. Hoping she will get back to me. Fingers crossed. 
    @Sister @kmakm thank you for the awesome suggestions. Bless
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