55Jlz is newly diagnosed please offer her the awesome support that you all do.

SoldierCrab
SoldierCrab Member Posts: 3,429 ✭
edited February 2018 in Newly diagnosed
  • 55Jlz Member Posts: 2
    Hello everyone  D 
    My name is Julieanne and I am newly diagnosed with invasive cancer no special type Grade 2. I call it 'Julie's Breast Cancer'...this 'no special type' lets me feel that it's not important, even thought I know that it is. My BC was found by my 2 yearly mammogram through BreastScreen. I'll be seeing my surgeon at Princess Alexandra Hospital in Brisbane on 6th March and have been told by BreastScreen doctors that I should have my surgery within 2 weeks. Then we go from there depending on what is found.
    I'm not feeling anything as yet, it feels like just another day. I'm thinking that it will change when I see my surgeon.
    So much information, even on the sites that BreastScreen have suggested I look at. It can be so confusing for a 'newbie' like me. 
  • RomlaRomla Adelaide Member Posts: 560 ✭
    Hi @55Jlz  . The BCNA My Journey kit is a good start for information and also suggests questions to ask the medicos which I found helpful - Breast Screen here gave me my copy.It is great you found this site so quickly as many will hop on to share and support you - you are not alone.It tends to move swiftly once things start - a definitive diagnosis tends to come after surgery where decisions are made about further treatment like chemo and / radiotherapy and possibly hormone therapy. I too felt a bit numb at the outset as I did not know what was happening and things went past in a bit of a blur but during the whole process I felt safe and cocooned with kindness .Just a tip if you can take someone with you to meet the surgeon to provide another pair of ears to remember what is said and make sure you keep good records including dates as well as information etc - the BCNA kit has a useful diary for that purpose.  Be wary of Dr Google as it may create confusion or provide information that does not reflect your reality and cause undue worry - that happened to me. Keep us in the loop as you move through the process and ask away as there is much practical knowledge on here from those who have been through it earlier. There is also much kindness on here to lift you when you are down and a space to say what you may not be able to others and be heard as we have all been there or are going through it with you.You are amongst friends .
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Comments

  • Mollygirl
    Mollygirl Member Posts: 213 ✭
    edited February 2018
    Hi @55Jlz, I'm so sorry you are here but of course you are welcome. Yes, it's quite normal to feel a bit numb at this point. It's the body's protective mechanism as your mind can go crazy with scenarios. Take someone with you to your appointments if you can. It's very hard to take everything in when you are under this stress. 
    We are here for you. Biggest hugs and keep us up to date with where you're at. xx
  • Romla
    Romla Member Posts: 2,092 ✭
    Oops almost forgot the important stuff big hugs xo
  • primek
    primek Member Posts: 5,392 ✭
    edited February 2018
    Everyone reacts differently. I k ew I had breast cancer as soon as I found be lump but tears didn't flow until I saw my pathology.

    Everyone is different. A lot to take in. We are here when you need to ask  more. 

    @55Jlz
  • Crusty
    Crusty Member Posts: 28 ✭
    Hi welcome, im currently having chemo at the princess alexandra hospital but had surgery at redlands the bc nurses and nurses are great at the pa, you’ll get a proper diagnosis after surgery. Alot of information is given to you at first i have a whole folder sitting here from the pa which i look at every now then to make sure i know whats happening.  The initial shock is hard at first . My best wishes to you and your family. 
  • arpie
    arpie Member Posts: 8,137 ✭
    @55Jlz  Hi ya - Join the club (sadly!)   You will find the most amazing advice & support in the BCNA forum ..... 

    I was diagnosed on Jan 5th with a Grade 2, Invasive Lobular Carcinoma (2 tumours) that were found early and small.  I had a Lumpectomy with mini reconstruct on January 17th. (My surgeon isolated the nipple & did all the other 'removals' from under the skin, including the nodes - so only the one scar!  I was AMAZED!!)   There will always be pain re the node removal in particular - but I found the actual tumour removal site 'healed & was less painful' than the node area!   Weird!!

    Before surgery, I had a Sentinel Node Biopsy to identify WHICH nodes 'drained' from the tumours - that way they only take out the ones CLOSEST to the tumours, instead of taking them all out.  (Less chance of Lymphedema further down the track.)   I was lucky - my 3 nodes & all the tumour samples came back 'clear' - but because it is an aggressive cancer, I will be doing 4 weeks of radiation starting Feb 28th which should finish by the end of March.

    So ..... basically - from date of diagnosis to end of 'main' treatment will be 3 months!!!

    I MAY be trying Tamoxifen as well after the radiation finishes - but it is not 'compulsory' for me (for up to 5 years) as I am 10 years+ after menopause - my hormones may not be as active as yours ..... 

    You will be guided by your surgeon & his team - take your phone with you & record the conversation (or take a close friend who may be able to take notes & ask good questions that you may not think of.....) - cos I promise you - you will NOT remember most of what is said!!!  Most professionals are fine to be recorded!  My sister in law came with me & was a real GOD SEND!!  

    It is fine to be upset - it is fine NOT to tell EVERYBODY YOU KNOW .... even some family members!  Some friends may find it hard to accept that you have cancer - some may not know how to respond.  That is normal

    Just remember - Cancer is a 'word' - NOT a 'sentence'!! 

    You can do this!  xxx
  • Sister
    Sister Member Posts: 4,961 ✭
    Hi @55Jlz Sounds like you are very "special" .  Careful about Dr Google but do look at reputable sites so that you can have your questions ready and you'll find lots of info and support here.

  • Brenda5
    Brenda5 Member Posts: 2,423 ✭
    This is the place for any questions you have. Not medical ones as that is what doctors are for but if your symptoms match what some of us have had then we can tell you all about it. Lots of tips on here and if your search can't find it, just post up a question. If things are driving you nuts, then this is the place for a good rant. We don't judge at all. We're here for you. <3
  • onemargie
    onemargie Member Posts: 1,264 ✭
    Hi there @55Jlz it’s always so overwhelming when you are first diagnosed. Take each day as it comes take the advice from your team and listen to your guts too. Try not to google too much. We are all in this shitty boat together but we all manage to keep each other afloat with love support understanding, laughter and hope. Welcome aboard lovely. Margie xxx 
  • 55Jlz
    55Jlz Member Posts: 5 ✭
    Hello my supportive and beautiful friends <3 - Mollygirl, Romla, SoldierCrab, primek, socoda, Crusty, arpie, Sister, adean, Brenda5 and onemargie, 
    I've been hiding away and coming to terms with my diagnosis. I haven't meant to ignore anyone and re-reading all these lovely comments has helped me open up again.
    I saw my surgeon / oncologist on 6th March and after lots of help from a friend, sort of understand the information I was given. Luckily he's concentrating on the surgery information first. Even the dr said there is so much to hear and it will be better to do it one step at a time.
    So...I'm having a lumpectomy on the 15th March. Also am having pre-admission on Monday which will take about 5 hours. Think I'll take a good book!
    Also, so much that needs to be done before the operation on op day. Putting in a wire, dye and I can't remember what else.
    I'm starting to feel scared. I tell myself that it's just another operation, but it's not getting through. Am feeling tired and sleeping a lot, but my daughter thinks that this is because of appointments and information catching up with me.

    Jules xxxxx
  • Romla
    Romla Member Posts: 2,092 ✭
    Hi @ 55Jlz - your lumpectomy is one year to the day after mine.I too was worried and fearful but found extraordinary care and support by all medical and non medical staff . I felt cocooned with kindness.I did not find preadmission diffficult as I was expecting. Once the lumpectomy and I guess sentinel node biopsy is done a pathology report is available to provide a conclusive diagnosis usually a week or so later. If you are having a lumpectomy the current opinion is it is early stage breast cancer and the node biopsy is to diagnose if it has spread to determine if chemo and / radiotherapy are needed. I had microstasis in one node so a course of radiotherapy was recommended.Also my path report revealed the surgical margin was not clear so I had to go back in for re-excision which then provided clear margins.The path report will also reveal size and type of breast cancer - mine was er+ and that means 5 years of hormone therapy. Pain management after surgery was basically paracetamol.They supplied me with a free Berlei post op bra which I didn’t find that comfortable and also a great little pillow to tuck between my arm and the wound which helped greatly.I was also instructed not to lift heavy objects for a while eg shopping , washing - think was a week or so. Re bras the ah bra given to me by a friend was great - no seams and you step into it. They are sold as a type of sports bra in lots of places like K Mart , Target , Best and Less  - they are cheap too .The hospital too will probably give you a huge amount of information pamphlets on many aspects of breast cancer - far more than I was able to absorb so a book is not a bad idea. It is a busy time but you will be managed by experts who will guide you through.TBH the worst time for me was when treatment ended and I no longer had the flurry of activity. Being tired might be the norm for a bit so plan for it a bit if you can. XO
  • Romla
    Romla Member Posts: 2,092 ✭
    Oops forgot - my surgeon recommended I buy Bio Oil to minimise my scar
  • kmakm
    kmakm Member Posts: 7,974 ✭
    @55Jlz Excellent words from @Romla above, and they correlate with much of my experience. I had a hookwire placed, your tumour must be deep like mine was. It's no drama, they numb the area with a local and guide it in with an ultrasound. The blue dye sentinel node biopsy stings a bit but wiggle your toes and take deep breaths and you'll be right! It's over quickly. Then the operation is not too long, mine was two and a half hours.

    My surgeon carefully paced the information he gave me too; I think it's something good doctors do. I think you must be in good hands! Feeling numb to start with is your brains way of cushioning you so you have a chance to absorb the shock, process the information and continue to make practical actions. When that wears off it can be very overwhelming and being tired is a normal response to that. Be kind to yourself, rest, and if there are people around you being kind and wanting to help, let them. Do you have a breastcare nurse to talk to? Mine is great, I always feel better after talking to her. Don't hesitate to call yours if you do.

    And then there's always this marvellous forum. Someone is always here to reassure you, sympathise, assist so don't hesitate to ask/vent/rant/worry/share! Best wishes and let us know how you get on. K

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