Newly diagnosed
Aliesha
Member Posts: 12 New Member
I'm 39 from Hervey Bay QLD I have just been diagnosed with Invasive Breast Cancer HER2 positive and ER positive. Looks like I've caught it early. My first appointment with surgeons is in 2 weeks. I have no information and no idea what treatment may be other then lumpectomy. Anxious and scary with so many unknowns.
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Hi @Aliesha, I am so sorry to see you join our 'little club' - the club that no-one ever wants to join voluntarily.
It is always a scary diagnosis to receive - if you feel really stressed, have a listen to Charlotte Tottman's podcast on her own BC diagnosis/treatments - she is a well known BC Counsellor - so having been thru it herself, knows it 'first hand'. She is easy to listen to.
http://www.drcharlottetottman.com.au/my-podcast.html
You can also ring our Helpline too, for a confidential chat: 1800 500 258
Australian Olympian Raelene Boyle also has a great podcast here too .... she tells it 'straight' - and also very easy to listen to!
https://www.bcna.org.au/resource-hub/podcasts/upfront-about-breast-cancer/upfront-about-breast-cancer/episode-21-raelene-boyle-on-pulling-herself-out-of-the-darkness/
Take plenty of deep breaths and stay away from Dr Google - as it will only muck with your brain xx. Only listen to your medical team, your Breast Care Nurse (when you are given one) and us ... as we've 'been there, done that'.
I hope we'll be able to answer some of your questions and make your 'journey' a bit smoother.
If you print off this sheet below - it gives you an idea of some questions that you may like to put to your surgeon and your Medical Team as you learn what your options are. I'd suggest you record your early meetings on your phone, as it is very difficult to remember everything that is discussed.
Also ask if your appointments, treatment and surgery is covered with 'no gap' - if there is a gap - ask for a quote.
Feel free to check out this post - it covers a LOT of areas that may be of interest to you - and has info on what to take to hospital with you, as well as lots of 'off topic' threads, that allow us to indulge in some of our hobbies!
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest
Living in Hervey Bay - you may need to travel some distances to your appointments, surgery and ongoing treatments ..... living 'regionally' - you should qualify for subsidies on both fuel and accommodation. The PATS fact sheet at the bottom of this post, will show you how to contact the Qld Patient Travel Scheme.
We also have a private group for those living in Regional, Rural and Remote areas, where we share info as it comes to hand. You can join it here:
https://onlinenetwork.bcna.org.au/group/28-living-in-regional-rural-and-remote-areas
I am guessing that your Progesterone may also be 'positive'? ... In which case, you may like to join the Private Group for those members with Triple Positive BC. It is a dedicated area where you can read the others' stories and pose more direct questions to them, in total privacy. They are a great bunch of ladies. Just go here & click 'join':
https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbc
Take care, look after yourself & keep busy in between now & seeing your surgeon xx
Wishing you all the best.1 -
@arpie Thank you, so far no mention of having to travel, but in saying that Ive only spoken with my GP. My biopsy was only positive for HER2 and Estrogen Receptor. Negative for Progesterone. I made contact with the McGrath nurse as I hadn't heard anything from anyone. she got onto it and got a surgical appointment sorted and spoke with the Director of Cancer Unit. I'm doing ok but also struggling, I am recovering from a recent hysterectomy and prolapse repair that has nerve damage. my first follow-up with the gyno has just been canceled until I don't know when. This week, I also see surgical for skin cancer. so a lot going on all at once.5
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Hi @Aliesha
@arpie has given you excellent info.
Sorry to hear of your diagnosis and the tough time you are going through at the moment - big virtual hugs!
I had triple positive (Estrogen, Progesterone & HER2 positive), so similar to you. The good news is that you can have treatments for both the hormone and HER2 cancer cell receptors.
Once you have seen the surgeon, you will likely have a plan and I found that to be very comforting.
Great that you have a McGrath nurse and she could advocate for you.
Feel free to ask any questions xx
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Golly Gosh @Aliesha - you've REALLY been having a rough trot of it xx ... Wishing you all the best with your hysterectomy recovery and next Gyno check up & Skin Cancer issues, let alone your BC diagnosis xx
Absolutely, once you have your game plan, you will feel a lot less stressed.
Try and take one thing at a time if you can ... I am guessing you will need to prioritise the order that you need to get done, (with the advice of your medical teams), so that your body will cope with all the procedures
Take care & I hope that things go smoothly for you from here on xx1 -
Hi @Aliesha I am so sorry to hear about your diagnosis ❤️
I’m HER2+, oestrogen + and progesterone + like @Suki
Even though you’re not positive for Progesterone you might find the Triple Positive discussion group helpful because we all have HER2+ in common.
Sending you lots of positive energy ❤️🌸🌻
This early phase you’re in is excruciating - where you know you’re needing treatment but are awaiting details of the specifics of that likely treatment.In my case I didn’t realise my surgeon would be asking for more detailed diagnostic tests and scans, after the initial diagnosis by ultrasound.
Later I realised my surgeon needed these results to inform their recommendations about my treatment plan.
But it is nonetheless a time of tremendous uncertainty and, understandably, your recent rough ride medically would be weighing on your mind.
It is a lot to take in, a lot of new information. I didn’t appreciate just how many permutations and combinations there are with breast cancer.The upside is that our treatments are founded on people who’ve given incredible feedback about their responses in the past and now each person’s treatment is really tailored to the characteristics of their specific breast cancer type and it factors in other medical conditions.If it helps to give you an "idea", here below is a summary of how I was recently treated for HER2+ early stage breast cancer; but do bear in mind your surgeon might recommend something different (eg some people have surgery first, some people have a mastectomy instead of lumpectomy, some people do not have chemotherapy, or radiation).
In my case I had a 38 mm lump, no nodes were thought to be involved. So after a battalion of diagnostic scans, biopsies and tests I was recommended 6 doses of a chemotherapy/ immunotherapy combination to shrink the tumour, before having lumpectomy surgery.
I started this in February 2023: each dose was given 3 weeks apart by intravenous drip in the day ward at my hospital.
After a lumpectomy in August 2023 and a short break to rest, I had radiation therapy in October 2024 - short bursts every business day for three weeks.
From what I can gather the next phase for HER2+ folks is decided by the pathology taken during surgery - but most HER2+ people would have up to another 11 doses of immunotherapy (and sometimes - as in my case - chemotherapy is added to it)
I finished that treatment last April 2024.
Before I finished it, in February (2024), attention turned to my Oestrogen positive attributes and I was started on an oestrogen suppressing tablet (called an aromatase inhibitor) which I continue to take daily for the next 5 years.@arpie has set out some great tips and links for you to read up about whilst you prepare for your consultation.
I am so glad you have a McGrath Foundation nurse.
Unfortunately my nurse was not familiar with HER2+ specific drugs and treatments - I think this might have been because HER2+ is less common than hormone (Oestrogen or Progesterone or both) positive breast cancer. She was however very good at coordinating and checking in.
Once I was on my treatment plan the nurses who were on the oncology day centre ward became more prominent in supporting my oncologist and my care.
I am sorry for this long read but hopefully it gives you a picture of how treatment "might" look -depending on your circumstances @Aliesha
I am conscious that the BCNA network has many people who have stood in our shoes and a lot of calm wisdom so it's great you have raised your question. 🌸🌻in solidarity2 -
@Tri Thank you for all the details I appreciate it. I was expecting to needing to do chemo or something before lumpectomy but the director of the cancer unit said as it was small to just see the surgeons first. I had convinced myself to be prepared for chemo but not maybe not at all. this not knowing part is really hard. the wait feels wrong. I see the skin cancer clinic today, but Im assuming they will put that on hold as its not as serious as breast cancer. Ive heard a lot of good things about this breast care nurse so that is great to know I have a really good support/co ordinator person that understands all this1
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@arpie I seen the skin cancer surgeon today, they are going head with removing the 2 skin cancer, will be done within 4 weeks. the nurse is going to talk with the surgeons to see if doing it with the lumpectomy is an option. she brought it up, she had a good chat with me which is lovely2
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That’s great @Aliesha it sounds like you’ve done everything you can to help make a decision or manage your treatment plan.
If you have not been told already, I recommend asking whether or not your breast cancer type is invasive lobular carcinoma (ILC) or if it’s invasive ducal carcinoma (IDC is more common) and also asking if your breast tissue is “dense” or not.
If you have dense breast tissue you could ask a little bit more about the adequacy of the diagnostic screens that have been done, especially if you also have ILC.
In a nutshell, ILC is like a chain of cells rather than a lump, so it’s a bit harder to see. Those of us who have ILC are often recommended to have a “3D mammogram” (Tomosynthesis) and/or an ultrasound for check ups and at diagnosis we have other scans and diagnostics (eg MRI).Even if you have dense breasts but don’t have ILC, people with dense breasts are also encouraged to raise it with their doctor and ask about the sufficiency of the screening.1 -
@Tri my breast density mammogram Bi-rads score was C. thick boobies. My results just say Invas@Tri Breast Cancer. I thought that was IDC, my tumor is a lump can see it on scans and physically feel it. I have had ultrasound, 3D mommogram, biopsy and staging Ct with contrast.2
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Hi @Aliesha, Glad to see you have connected to others within the online community and it looks like you have already received some really good support and information! You may also like to have a look at some of the articles below to help you during this time:
BCNA Helpline team
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@Daina_BCNA Thank you Ill have a read through that.1
Thank you 