Forum Discussion
Newly diagnosed
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.
22 Replies
- 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. - @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 lovely
- @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 this
- 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 solidarity - @jennyss <3 Thank you
- Dear @Aliesha,
from jennyss in Western NSW - @arpie Yea Im certainly feeling a little overwhelmed. I think the skin cancer will be put on hold, see what the surgeon says on Thursday.
- 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 xx - @Suki Thank you @arpie has given me lots of info, Ive joined the regional group and book marked everything to listen to and read.
I think knowing the plan will help a lot instead of flying blind. - 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
