Forum Discussion

nurserach's avatar
nurserach
Member
15 days ago

Triple positive HER + grade 2A

Hi to everyone!
I'm newly diagnosed with a grade 2A triple positive breast cancer, at age 40.
So, from what I can understand (and I’m an experienced registered nurse… but not in the area of cancer)
I have a 2.5-3cm tumor in the right breast.
PET scans/u/s/ ct with contrast and biopsy show an invasive carcinoma insitu.
no nodal involvement or metastasis seen on any scans, hence the 2A. 
I am having 12 weeks of paclitaxel chemo weekly, plus herceptin and perjeta added in every three weeks.
The herceptin will continue for the year, every 3 weeks.
i have opted for a mastectomy (single) and immediate reconstruction using implants after the chemo has finished in 12 weeks. 
so no radiation after surgery.
i will then be put on the oral meds for 5 years.
I was just wondering if anyone had a similar diagnosis, and how their treatment went.
I am up to number 2 of the chemo this week (10 to go) 
I opted to pay the $6000 for the perjeta, on top of the herceptin and paclitaxel.
i just want to get through the chemo part, as it really scares me!!!
Xx
  • Suki's avatar
    Suki
    Member
    14 days ago
    I have top cover, but I was out of pocket for both the surgeon and anesthetist.  I had been recommended and chose to go with a private specialist breast oncoplastic surgeon and am very happy with the result.

    Surgeon was $4K out of pocket for the following (she wasn't on my health fund list, so I expected out of pocket):
    - breast recon (bilateral) following mastectomy
    - skin sparing mastectomy (bilateral)
    - sentinel node biopsy

    The anesthetist was $1,700 out of pocket for the following:
    - consultation
    - anaesthesia for mastectomy
    - surgery time (3hrs 10mins)
    - physical status modifier ASA.3

    The Medicare rebates are low (this is generally the case for all women's health). 

    As a proportion, the surgeon's "out of pocket" was better value.  The anesthetist was on my health fund list, but chose not to participate in my health fund gap plan and I felt their out of pocket proportion was unreasonably high.  I did mention it to both the anesthetist and surgeon, but got no where - I didn't want to delay surgery finding another anesthetist that my surgeon was happy with, so I just went with it.
  • nurserach's avatar
    nurserach
    Member
    14 days ago
    Thanks so much Suki!
    it sounds very similar to me!
    my oncologist has filled out a form for my private health, and we are waiting to hear back from the CEO with their decision.
    just a question re private health.
    I've got top cover, and work in theatre as a nurse ( so know the surgeons/anaesthetists)
    Were you out of pocket a lot for the mastectomy with direct implants?
    My surgeons participate in the access gap, so my health fund is saying the most they can charge ( if they do) out of pocket is $500.
    im just trying to prepare, as I might need to try to access my super if I need to.
    thanks again!
    your story gives me a lot of hope xxoo
  • Suki's avatar
    Suki
    Member
    14 days ago
    Hi @nurserach

    I am a fellow stage 2A triple positive patient.  I was 47 at diagnosis with a 2.5cm tumor and no node or metastases on scans.  Treatment happened over the full year of 2024.

    Like @Tri, I had 6 rounds of neoadjuvant TCHP chemo.  If you have private health, get your oncologist to claim for the Perjeta on your behalf - my private health paid for mine.

    After chemo, I had a bilateral mastectomy (skin sparing) and direct to implants.  No radiation.

    I had a complete response (pCR) to the TCHP, so then had 11 subcutaneous injections of Herceptin (Trastuzumab) after surgery.  I am now on Tamoxifen (anti-hormone pill) daily for at least the next 5 years (may switch to an AI at some point).

    I found the recovery after surgery was ok, so I would say that chemo is the hardest part as I don't cope well with being "sick" .  It is a weird situation where you have no symptoms from the cancer, but the treatment makes you feel rotten!  Exercising every day (even just a walk) kept me sane and physically strong.

    Make sure you let your onc know of any chemo side effects, as they can suggest remedies.

    You will get through this.  Feel free to ask any questions.
  • Afraser's avatar
    Afraser
    Member
    14 days ago
    Hi @nurserach

    I was close but not quite - mastectomy, 4 rounds of A/C, twelve rounds of paclitaxel, 
    herceptin for 12 months, letrozole (hormonal
    therapy) for 10 years. 

    Chemo can affect people very differently. Fatigue and nausea are the most common side effects, I didn’t have either. A pattern usually sets in by week three. Losing one’s hair also affects people differently - unwelcome for everyone but can be deeply distressing for some. I assume you may have been advised about cold cap - works for some but not everyone. Irritating chemo
    side effects can include loss of tastebuds and bloody nose, usually ends pretty promptly with the end of chemo. Peripheral
    neuropathy starts with tingling in fingers and toes, can be painful and while it also
    may clear up after chemo, it doesn’t always. It’s important to report any neuropathy symptoms to your oncologist and discuss ways of limiting impact. 

    There’s an end to chemo. Focus on the end! Count the sessions down. After six, you’re half way there!

    Oh, 12 years on, no evidence of disease. Best wishes. 

  • Tri's avatar
    Tri
    Member
    14 days ago
    Hi @nurserach
    A warm welcome to the network although I’m so sorry about your having this diagnosis and going through this experience - hoping you are getting lots of care and nurturing at your end and sending warm thoughts your way 🌸🌻 a big salute to you as you are a nurse - such huge respect for all the work you and your colleagues do 👏❤️
    Here’s a link to the BCNA triple positive specific group thread https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbc  you might find useful some of the posts useful - you can request to join and once @Mez_BCNA joins you in to the group you should be able to see the posts. 
    I was a “Triple Positive” and it is now 9 months on from completing the entire chemo and immunotherapy regime - all good and feeling strong. I have a daily Aromotase Inhibitor tablet (called Letrozole) to reduce oestrogen. 
    My presentation was similar to yours except my tumour was on the left side, it was 3.8 cm and Invasive Lobular Carcinoma (ILC). 
    My regime was slightly different to yours although sounds like the same key drugs.
    I had Neo adjuvant treatment by IV drip - 6 cycles of TCHP - DoceTaxel Carboplatin Herceptin and  Perjeta - each cycle was 3 weeks apart. I found it manageable but not without a few side effects, particularly the feeling of jet lag 🥱 and some neuropathy. But good news is we are all wildly different, so fingers crossed you might have fewer symptoms. On the other hand, in case you start to experience any fatigue, changes in your palate, hair or nail loss and upset gut, remember to be super kind to yourself and seek or accept all offers of help, food for your freezer and anything that gives you the chance to manage your symptoms ☺️🌸!! 
    My usual exercise routine was hard to maintain, so I found enrolling in the hospital’s Oncology exercise rehabilitation program (with the physios supervision) a really helpful way to get through the long haul. 
    After my Neo adjuvant treatment, surgery (a lumpectomy) and radiation therapy, I continued with Herceptin for another 11 cycles (each 3 weeks apart) and a chemotherapy drug (a compound called “Kadcyla”), I had the extra chemo because whilst I had a good partial response to the Neo adjuvant it wasn’t a complete response. A lot of people’s tumour disappears completely after the Neo adjuvant treatment so the targeted treatment/chemotherapy has been very effective in the Triple Positive cohort! So all up it was about 14 months from start to finish for me.
    Sending you all good wishes - just sing out if you have any questions about the treatment.