An unexpected birthday surprise

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AlliD
AlliD Member Posts: 3
Hi everyone, I have been on the journey for about a month now. I had no symptoms and given it was my 53rd birthday at the beginning of March, and the last checkup I had was just before I was 50, I thought I should get into healthy birthday habits and do all the checks. 

A week after my test I received the call to advise I needed to have further testing. Since then, time feels like it has flown by and my emotions have been on a roller coaster ride.

Below is a bit long but this is my venting and releasing all the emotions I have had for the past month. 

My GP was the first to let me know the results of the further tests. It was the worst experience I have ever had - all he said was that the results were not good, that I had invasive ductal carcinoma, that I should be better with my checkups, and that he would refer me to the surgeon. He noted the surgeon and their team are really good, but give it a week before I call their office to book an appointment. He did not give me any more information about my results, nor did he advise of any organisations that could provide emotional support such as BCNA, or Beyond Blue etc. My husband and I walked out of the GP's office in a state of shock not knowing what we were truly dealing with. 

Luckily a few days later the surgeon's office called me and I saw them the week after. All was explained - a small IDC, deep in the breast, Grade 2 aggressiveness, hormone receptor positive, next steps etc. The breast nurse told me about BCNA - I looked it up and found so many amazing resources to support people. This is where I felt I could at least understand and have some semblance of control. 

I am the person who is usually strong for everyone else. I am the carer of my older brother who has multiple disabilities, and I am about to be a first-time grandma. All I could think about during the past month was my family and being there for them. While I have put on a positive face I have had all these internal mixed emotions. - loss of control, fear, anger, and worrying if it has spread elsewhere.  I don't feel I can say these emotions to family and friends as they are used to me being a positive and strong person. I have cried alone. 

My anger is not about having the cancer, but how my GP managed the situation. He had all the information about the size, type etc, but did not say anything to us about this - all he said was 'it was not good'. I at the time did not even know I could ask, or even what to ask. I walked out of his office fearing the worst and it was not until I saw the surgeon, and the breast nurse that I felt safer. In saying that he did call me a few weeks after to check to see that I had an appointment with the surgeon. Maybe GPs should be taught how to give this type of news and advise of any supports - or maybe this was just my experience with my GP and other GPs are better. 

I now have the PET/CT results and our focus is the breast only. Operation at the end of the month, and it sounds like it will be radiation and hormone therapy from there. I know the emotional roller coaster ride will continue, but for me understanding what I am dealing with and having a plan at least gives me back some control. 

BCNA - thank you for having a place to support people with breast cancer and where we can be open. 

Comments

  • Katie46
    Katie46 Member Posts: 143
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    Hi @AlliD, from reading lots of posts on here, I get the impression that doctors aren't always the best at giving this news. I count myself lucky that I was diagnosed through the breast screening service in Darwin, and the news was given to me by a doctor and nurse, along with information and reassurance. Hopefully your experiences will be better now you are in the system. I found the early stages of appointments, scans etc the most stressful. Once all that was done and I had a treatment plan mapped out for me I felt much more in control. Everyone up here has been great, and the McGrath nurses have been so helpful, answering questions and helping arrange appointments, and attending my first oncologist appointment. If you have access to a McGrath nurse you should contact them. All the best with your ongoing treatment. Katie 
  • arpie
    arpie Member Posts: 7,803
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    Hi @AlliD - I am so sorry to see you joining out little group - I bet it was the last group you ever thought you'd be joining  :(   Terrific that you have found us and thank goodness for the Surgeon's nurse advising you!!   Once you've had your surgery & get your pathology report & get your 'game plan' you will feel a lot better.  I know I did, specially knowing the little sucker was GORN!

    Your range of emotions are totally normal xx But if you feel yourself getting very sad or overly worried, give our helpline a call on 1800 50 258 for a chat.  Just talking with someone who KNOWS all the ins & outs, will help.   Also, consider listening to Charlotte Tottman's Podcasts - she is a BC psychologist who was diagnosed in 2018 and had a double mastectomy & stayed flat.  She was surprised that the diagnosis hit her as hard as it did, as she'd been counseling women for YEARS on helping THEM get over the shock ... This disease actually mucks more with your BRAIN than your body, I reckon!  So she really 'gets it', more than any others (who haven't experienced it themselves.)  Below is her story in PDF form.  And the podcast link is here:
    https://soundcloud.com/search?q=charlotte tottman

    Make sure you Click on 'view 22 tracks' and start with No 13 (which is the first episode of Series One - weird that they've put Series 2 'first'!)   They are really good as she talks more as a BC survivor, not a Psychologist - and they are very easy to listen to!
    I was like you, but a tad older, 63 - fit & well & had absolutely no idea that I had this little bugger in my breast, threatening me!!  Don't beat yourself up about not being checked earlier - I'd had 2 yearly checks for 10+ years & a clear Breast Screen check just 4 months before my fabulous GP found it, almost by accident.  (When she said she'd check my boobs at the same time as having a pap smear ... I told her I'd had a clear result just months before but she checked anyway - and just as well, eh?!)  So the mammograms, whilst 'good' - are not infallible - specially if you have dense breast tissue (ask your surgeon if you do.)

    We all 'act strong' on the outside, but it is important that your husband and family know that you are feeling a tad fragile on the inside - I hope they step up to the plate & support you well xx.   

    Your GP can definitely do with upgrading his people skills!  Or, consider changing GPs if you are in a multi GP Clinic!  Maybe even contacting the Manager of the Practice & letting them know that you were disappointed in the way he delivered the news (when you are up to it!) xx   Also, ask for copies of ALL THE REPORTS that will be coming thru after each visit to the specialists.  Get a big box & store them all in there .... scans, blood test results, everything - so you can lay your hands on them, if/when you need to later!

    Being in Bega - does that mean you have to go to Canberra for your surgery?  (I have a nephew down the south coast & they see an Onc in Bega but have their treatment/surgeries in Canberra!)  If you have to travel more than 100k from home to see your medical team and/or treatment (or weekly travel adds up it) you can make a claim for fuel & accommodation costs ...  Join the Living in Regional, Rural & Remote Group - we have a lot of info there on claiming back travel & accommodation expenses (via IPTAAS - Isolated Patients Travel and Accommodation Scheme.)  Lots of forms to be filled in by the GP (to the referred specialists) and also getting them signed off by the specialists each visit & if you travel for scans ..... Once you do it online, it is even better.  You have 12 months to put a claim in and the specialist's referrals last for 2 years.

    In the mean time, try & keep yourself busy (and away from the computer & Dr Google) doing things you LOVE doing!  Cook up some meals & freeze them, so you have 'ready made' when you get out of hospital!  Get out with friends, try new things as you wait for the surgery day xx.  Remember to be kind to yourself too xx  

    Check out this post ... there are lots of 'other areas' on the forum that may take your interest ..... show us your gardens, your furkids, art & craft ..... and check out the 'funny bits' as well, as we all need a laugh now & then! xx.   At the bottom of the post are some downloadable docs on self assessing yourself, both physically and mentally .... print them off & keep a copy for your team to check out as well!   (Sometimes it is easier to give it to them to read, than to talk about it with them. xx)
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest 

    If you continue this thread for all your active treatment .... it will almost be a 'diary' to look back on later!  ;) 

    Take care & all the best - it is a bit of a conveyor belt to start off with - appointments every other day!  
  • AlliD
    AlliD Member Posts: 3
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    Thank you for the suggestion to ask for copies of the reports, and also for the information on the Living in Regional, Rural & Remote Group.

    Luckily the Bega Hospital has a specialist breast cancer centre and they are a great team. When I had my first visit I knew I was in very good hands. The breast specialist and McGrath nurse explained everything, and now that I am 'in the system' it does feel like I have some control.

    The Radiation Therapy will be in Canberra. 

    The NSW IPTAAS is such a great initiative - the Breast Screen NSW team gave me this information. The people who work at  Breast Screen NSW are so very caring. 

    I am going to make the time to listen to Charlotte Tottman's Podcast. 

    It's a journey, but with every step forward, I will progress and I will be stronger for it!