New to this and it is hitting me that it is a waiting game.

LisaJHMLisaJHM Member Posts: 14
edited December 2018 in Newly diagnosed
Hi everyone - I' 45 and was diagnosed last Friday with stage 2, IDC, triple positive breast cancer and saw the surgeon yesterday - we are going to go down the chemo/radiation route first over surgery. I'm waiting to hear back from the oncologist (I've rung twice) for an appointment. The last few days while being scared I felt like I could do something, anything to help progress treatment. today its been frustration leading to mild anger that I can't and have to wait. i'm going to have a heart scan and clip inserted tomorrow but tonight I feel frustrated and upset and guess things are finally hitting me. I just need to let it out and friends are kind but they want to know whats happening so they can plan around me and I couldn't;t get that today. its a difficult time of year for all this I know. grateful for any advice. 
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Comments

  • SisterSister Adelaide Hills, SAMember Posts: 3,653
    Welcome @LisaJHM I can't give you much insight into the process you're going through as I had surgery first, then chemo and rads, but I do hear that it is can be very effective.  As @allyjay says, chemo is heavy duty stuff so there needs to be some baseline measures taken.  You would also be fluffing about with tests if you were doing surgery first.  Just try to take it one day at a time and breathe.  You will get there.
  • FlaneuseFlaneuse BrisbaneMember Posts: 774
    @LisaJHM We all understand your frustration and anger. As @AllyJay ; said, this will become your safe place.

    Few things are worse than uncertainty and waiting - for results, for appointments, etc. Unfortunately you'll face a lot of that. And this time of year is worse than other times because of the "festive" days off getting in the way. I was diagnosed 30 Nov last year so suffered the festive interruptions.

    Friends and family are well-meaning but unless they've been where you are, they don't really appreciate what you're going through. But in any case - let them love you and help you - especially if they can deliver prepared meals! Make your own choices about your priorities.

    Think about what gives you most pleasure in life, that you might be able to use as a distraction on difficult days. 

    Once you've started chemo, you're likely to develop a predictable pattern of how you respond after each treatment. Work around that pattern. to make the most of good days. Don't ever hesitate to call the oncology nurse with questions in between treatments. Be kind to yourself.

    Hugs, Fran
  • LisaJHMLisaJHM Member Posts: 14
    thanks so much for understanding and for the support. I'm so grateful to have found this community. 
  • primekprimek Broken HillMember Posts: 4,766
    We all get your frustration and the helpless feeling of waiting for an appointment. It was 3 years ago yesterday I found my lump and had a biopsy 3 days later. I didnt get my results until the  28th, meanwhile attending a funeral and supporting family members through Xmas whilst  I stayed awake terrified at night of my future. I'm glad you've seen the surgeon and fabulous you are having the scan and clip tomorrow. All these  things lead you closer to your chemo being able to start. Have you a breast care nurse or cancer care coordinator at the hospital of treatment? They might be able to help.
    Meanwhile have a look at some headgear online for when you lose your hair.  Maybe book a dental appointment for a good clean...all reduces risks pre chemo and will help keep you busy. Find out if there is a local wig bank.
    The hardest part of this journey is accepting that we are not in control of many aspects and we just have to deal with each thing as it comes up. Kath x
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,087
    hi LisaJHM

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

    How to post on the main forum – use this link to get to the main forum and begin a new post. https://onlinenetwork.bcna.org.au/post/discussion

     

    Navigating the online community formerly the what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

    Breast Care Nurses

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

    My Journey online tool and other resources. 

    My Journey Online Tool resources
    https://myjourney.org.au/hp/step5

    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. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

     

    How to understand your pathology reports

    https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html



    I see the other ladies have been supportive as per usual. If you have any questions please ask away nothing is silly or stupid in here, it is a steep learning curve when we first get diagnosed. 

  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 102
    Hi LisaJHM, welcome to this group where you will find amazing support.
    What you’re feeling is normal, the frustration,also emotions that are attached with that.
    We are all here for you to help and guide you through this new door that has opened up.
    I was recently diagnosed in late October with a triple negative breast cancer, so different to yours but the emotions are the same.
    Ask away any questions and people on this forum will respond.
    One day at a time, I found meditation helpful for me, and talking to people that understand what you are feeling and going through.
    Sending Cyber hugs your way ❤️
  • kezmusckezmusc Member Posts: 1,016
    Welcome @LisaJHM

    Some great advice already from everyone as usual.

    There is nothing that prepares you for that earthshattering diagnosis.  The fear that surfaces at the start is indescribable and  nobody  can truly understand unless they have felt it.  I remember each morning waking up hoping it had all been a horrible dream, unfortunately not. 

    Waiting, waiting , waiting for scans, waiting for results, waiting for doctors that run late all the time.  Frustrating, annoying and frightening...absolutely.  Too much time to think.  

    I think one of the worst parts at the beginning was feeling like you have no control.   Don't be scared to ask questions and don't be scared to say so if you don't like something and tell them if you don't quite understand.  This is your gig.

    I did surgery first then the chemo and rads.  After the diagonsis I found the first oncology appointment to be the most daunting, scared the bejeesus out of me actually.
      Just remember, they will give you a list a mile long of possible side effects. Doesn't mean you will get them.  Some of us get through without too many problems.

    Are you able to access a cold cap for your hair where you are going? 

    I always recommed to take photos of all the good things you do amongst navigating treatment.  That way when you look back that part of your life is not all about the cancer and treatment.

    In the meantime, keep yourself busy, distraction can work wonders.

    You got this lovely. Hugs.

    xoxoxox






     
  • SisterSister Adelaide Hills, SAMember Posts: 3,653
    @Nefertari I only found out about my staging 12 months later.  I knew I wasn't 1 nor was I IV and I don't think the docs  really seem to think it mattered.
  • NefertariNefertari Member Posts: 22
    edited December 2018
    Hi Sister :) all I know  is it  hasn't spread to bones or any where else, so i have been told.
     I did ask surgeon he said 3 and masectomy but now oncologist  said 2  to 3 , due to the  size and I'm triple negative. He has doubts the second lesion is non malignant. 
     I am completly ignorant because everyone's situation is different and their treatment is in different orders.
    Oddly it seems that it is the first question people ask me all the time and I truly don't know?
     I sort of get the impression it will depend on if the lymph nodes have cancer and I dont know when that happens. 
    Did you find out post surgery?
    I'm just concentrating on one visit at a time.
    One chemo down, next is the port on Monday, then  rebiopsy the second lesion again on Thursday. Oncologist wants it done again, he said because of the triple negative result. My head was literally in another world by then far far
    Away....
    Then I  finally have  two weeks break from hospital before second chemo cycle. 
     I am better dealing with small chunks rather than the big picture.
    Nothing has been as bad as I expected so far, the frustration is only that the appointnents never start on time!
     So hurry up and wait fits my experience perfectly. 
    The upside is I get to talk to lots of lovely ladies at various stages on the journey.  Made some good friends already...seen everyones ports etc they are all positive ladies regardless of the Stage.


  • WonkWonk BrisbaneMember Posts: 56
    Hi @Nefertari, to answer your lymph node question. I had a few removed during surgery. I was given the option of paying approx $500 (private hospital) to have them tested while I was still under. This meant that they brought two people in to the hospital to do the tests on the spot. If they were positive for cancer in the lymph nodes then they would have continued the surgery and removed all the lymph nodes.  However the results (because they are done so quickly) are only 50% accurate. This means if the initial testing is negative, it may still change to a positive over the next week. Mine was negative. Seven days later when I went back to the surgeon for the results from the surgery, they were still negative. So that was lucky for me.  All the very best. The waiting becomes very consuming of your emotions. Come to this site and everyone will help you through. I practically lived on here during the first few weeks, and the overwhelming love and support from everyone here is what got me through xxx
  • SisterSister Adelaide Hills, SAMember Posts: 3,653
    @Nefertari ; I got my path results at the beginning of January this year (which sent me back into surgery on 8/1).  I had a 4.5cm lobular tumour which turned out to have spread to 3 nodes (1 fully gone and 2 with micrometastases) but no further spread, OR & PR+ HER-.  I don't remember either my surgeon or onc telling me what stage I was and, from what I read, it could have been either.  It was only at my recent 12 month appointment with the surgeon that I asked him, "By the way..."  It turns out that I'm at Stage II but from the tone of his response, though he was happy to tell me, he didn't seem to think it was that important.  I'm inclined to agree with him as I don't think there's too much distinction between the 2 stages for me but you do feel a bit of a dill when someone asks you and you have to say that you don't know.
  • LisaJHMLisaJHM Member Posts: 14
    Hi Everyone thank you so much for the kind words and advice.

    By a miracle I got into to see the oncologist I wanted (and my surgeon recommended in the public system) yesterday - on Thursday the clinic staff (and I understand they are under a lot of pressure) said no she wasn't available and that I would be seeing the old professor (who turns out was retiring - which they didn't tell me) and that the oncologist I wanted to see wasn't a breast specialist (which again isn't true - found out after I rang my surgeon to report what was going on). So Thursday was a very black day. I ranted and raved and cried finally to let it all out (not at the staff, in the car by myself) .

    By some miracle on Friday morning the clinic rang back and said that my preferred oncologist would take me on and could I come in at 12. You're right about the oncologist appointment being overwhelming, my god! So looks like I'm up for 6-8 rounds of chemo - every 2 weeks for the first 4 and then every week for the last part.  The tumour is bigger at the moment - which the Dr thinks because I've had a core biopsy (with significant swelling and bruising) followed up a week later with the chip implant (ouch!!!!) which has left it swollen. - it can't have doubled in size in a week!  

    On Monday I have to have my lymph node biopsied (again triple ouch as they can't put local anaesthetic in the site) - the Dr couldn't understand why this wasn't done in the original biopsy but c'est la vie. Also getting a breast MR - the Dr was amazing and convinced the imaging specialist it had to be done before Christmas (he was not happy and could hear him yelling on the phone). The $600 out of pocket for that is a huge hit and I have very kind family who are going to pay for it. Being a single parent isn't always the easiest and especially when illness is involved. I'm lucky that my daughter will be with her father this year for Christmas so she won't have to accompany me to all these appointments. 

    So my next couple of weeks look like this - 24th breast MR/node biopsy, 27th bone scan and CT, 31st followup appt with Dr and then likely start 2 or 3 Jan.  I am going to ask for the cold cap although the Dr said it likely wouldn't work as they are going to hit it hard in the first 2 rounds. She recommended I get my hair cut short asap (try finding a hair dresser who isn't 1. manically busy and 2. open between Christmas and New Years). I've got collar bone thick hair and a very round face - I'm hoping I won't end up looking like Bert Newton :) - particularly as I have a friend's wedding on 2 Feb. But alas that's not what is important, wellness is. Sorry I jest when overwhelmed. 

    I am attempting to make the most of the next week and enjoy myself as know the road ahead is going to be bumpy.  I have started using the term Namaste - I'm not any religion or particularly involved in yoga but when I read what it means it seems really appropriate.
    Namaste :smile:



  • Blossom1961Blossom1961 Geelong, VicMember Posts: 680
    @LisaJHM Yep. Small chunks. I couldn’t take it all in at once and I actually didn’t want to know the stage as I felt that was too daunting. Once chemo was finished I asked them and I was a stage 2B. Just deal with one step at a time. If you want to know ask. Write down questions as you think of them because you will definitely forget them once you are in the appointment. Your hospital may have a wig library so check that out and have fun trying on all the different styles. I was laughing so hard and my daughter who came with me kept looking at me cross eyed. In the end I decided bald is beautiful. Wait until you feel the shower on your bald head - absolutely liberating (almost orgasmic, oops). 
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