HER2 positive diagnosed Dec 24 -

Anna15

49 fit and healthy and then what the!  Noticed a dimple in left breast, straight to Dr, all the tests and within 18 days was having my first round of chemo 2 days after Christmas. 2 cm lump left breast, HER2 3+ positive, they don’t believe it is in my lymph nodes just one enlarged from the biopsy. Just finished 2nd of 6 rounds of chemo. Then plan is a lumpectomy, radio and then endocrine therapy. Reading all the threads of HER2 positive it seems like a long road ahead. Did anyone choose a double mastectomy to avoid issues in the future? Would love any suggestions, advice, feedback for anyone going through a similar journey. 

Tri

Hi @Anna15
I am so sorry to hear about your diagnosis at such a vital age and stage of your life 🌸❤️; I can imagine the disruption it must have caused let alone all the other emotions.
Your diagnosis and treatment protocol is almost identical to my diagnosis (January 2023). I finished all aspects of the treatment in April ‘24.

You ask a great question- I was recommended a breast conserving lumpectomy too. 

We know it’s highly dependent on personal circumstances - which are incredibly variable (who knew how diverse breast cancers could be!) - but in case it helps you contemplate your options here’s a summary of my experience and individual profile (early breast cancer (invasive lobular carcinoma), HER2+ and 3+, one (left) breast, not thought to be in the nodes based on the biopsies, MRI, PET, US and CT, 3D mammograms, no family history).
 Like you I was recommended Neo adjuvant treatment (TCHP), lumpectomy, radiation therapy, adjuvant treatment and then ongoing endocrine (hormone reducing) treatment. 

The lumpectomy recommendation was discussed again during the Neo adjuvant phase after an MRI (could have been an ultrasound). This scan established if the TCHP I was having was effective and how the tumour was responding to the treatment (it had shrunk from 3.8cm to 1.2cm), with the conclusion that it was, and would therefore also be effective on any cells that might be present in distant sites. This informed a decision to remain on track for the lumpectomy.

After surgery, I discussed the pathology report with my oncologist. Front of mind was whether anything in my results suggested more surgery might be needed to reduce the risk of recurrence. Whilst I had some remnants of the tumour still present, further surgery was considered unnecessary. 

The factors we discussed included that I had a low Ki 67 score, no cancer in the nodes pathology, I would be having radiation therapy to the site and completing the HER2+ treatment. We discussed how targeted treatment has been researched in the KATHERINE trial. 

I concluded that although no one can guarantee we won’t have a recurrence it seemed to me that the medical team and I had done all we reasonably could given my profile. 

I think many of us will always have a level of worry about recurrence but with the information I had to hand, I am comfortable. 

Hope this helps and in the meantime wishing you all the best whilst you’re at this stage of your treatment ❤️🌻.
Last year BCNA started a triple positive discussion group 

https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbc

which you can jump into as there’s a few folks in the group in active treatment phase ☺️🌸🌻

Anna15

Tri, thank you for your response. So helpful. Very similar stories. I too believe I have a low ki score 25%. Just have time to ponder during chemo to decide what is best for me. I lost a maternal grandmother to BC but as this is an hormonal type I don’t believe family history comes into play. Just want to be informed. Thank you x

Suki

Hi @Anna15

Sorry to hear of your diagnosis.  I was a similar age to you (47) and diagnosed with HR+ HER2+ (triple positive) in Dec 2023 - 2.5cm ductal cancer in my left breast.  I too started chemo between Christmas and New Year - it is a tough time to be having treatment when everyone else is happy and relaxed.  Hope your side effects are minimal.

@Tri has provided great info.  TCHP is hard and long, but effective.  I had a different surgical pathway due to widespread calcifications in both breasts and an LCIS diagnosis prior to invasive cancer.  I chose to have a bilateral mastectomy (skin sparring) direct to implants with sentinal node biopsy through the private system, which my surgeon agreed was best due to my history.  I didn't need any radiotherapy as no lymph node involvement and complete response to chemo.

Please feel free to ask any questions and all the best with your treatment.

Anna15

Thank you Suki. I am learning not to get too far ahead of myself with regards to future treatment cause things can change if there is or isn’t a response to chemo. I actually looked at the time of year as a positive cause I have three school aged kids and everything just slowed down. We even managed to get away after my first cycle. Just so nice to hear of other peoples treatment journeys, know that unfortunately many people have walked this road before me but there is light at the end of the tunnel. Xx

Mareealso

Hi Anna 15, I have finished chemo and mastectomy. My cancer was a similar size, lymph node negative  and estrogen receptive however as  another relative also had breast cancer, my medical team thought it prudent to be tested for the BRCA 2 gene . I was positive hence the mastectomy over a lumpectomy, chemo and now on estrogen blockers. As far as I could understand,  the BRCA 2 gene has indicated that I am susceptible to breast cancer of various types including hormone. The BRCA 2 mutation does not lead itself towards any one type of breast cancer. If possible I would be discussing your relative’s cancer with your medical team and asking if a gene test for BRCA 1 and 2 would be appropriate. This may then lead to a slightly different recommendation for your ongoing treatment plan. Wishing you the best!

Anna15

Thanks Mareealso. I did chat to my Oncologist about doing genetic testing. Seems it can open a can of worms. You can’t unknow something once told.seems I will have to decide soon though as it takes about 4 weeks for results and then it would change my surgery. By having a double mastectomy it obviously reduces the possibility of the cancer coming back but can it reappear anywhere else in the body?

SC75

Hi @Anna15

Thank you for sharing your journey. I am truly sorry to hear about your diagnosis. Your message resonates with me. Like you, I was also 49, fit, and healthy when I discovered a lump in my left breast, and it has been a whirlwind since then. I was diagnosed with invasive lobular cancer in my left breast, and there were multiple suspicious cells in my right breast that required further investigation.

My first mammogram biopsy on my right breast was aborted due to a reaction I had. After the second attempt, the surgeon was unhappy with the placement of the markers in comparison to the scan. At a meeting with the surgeon, she offered me the choice between a lumpectomy with radiation or a mastectomy, along with further investigation on my right breast. During that meeting, I asked if I could have a double mastectomy to expedite the process rather than undergo more investigations and genetic testing. I was told that I could. I was concerned about being diagnosed with invasive lobular carcinoma (the "sneaky" breast cancer) along with suspicious cells in the other breast.

I also asked the surgeon which she would recommend between a lumpectomy or a mastectomy for the left breast. She informed me that both options were equally viable; otherwise, she would have recommended one over the other. Thus, I believe it ultimately comes down to personal choice. 

As it turned out, following the double mastectomy, my right breast was clear. However, I do not regret my decision, as I will no longer have to have yearly mammograms. Unfortunately, as one of my lymph nodes was involved (discovered after surgery). I will be undergoing either chemotherapy, radiation and hormone therapy or going straight to radiation and then hormone therapy depending on the results of an Oncotype DX text.

It’s such a hard decision isn't it. I completely understand you wanting to explore tall options before making your final decision. Please know you are not alone in this; many of us are navigating similar paths and can offer support. Each journey is unique, and it’s important to do what feels right for you.

If you have any questions or need support as you navigate this process, I am here to share or listen. Wishing you all the best as you continue your treatment. You’ve got this!

Susie

Afraser

That’s the $64,000 dollar question @Anna15! Over 11 years ago, I was diagnosed with breast cancer, HER2+. In fact, it wasn’t the tumour that was HER2+ but the one malignant lymph node (several
looked suss, 17 went but only was was actually malignant). Given size, position etc, a mastectomy was recommended plus a year of Herceptin and then hormonal therapy ( I did ten years). In my case, my oncologist felt that I was as likely to get another cancer elsewhere in my body as in a remaining breast. So a single mastectomy. And so far, so good! I didn’t do reconstruction, use a prosthesis and am happy with that. While older than you, I was as conscious of my body as anyone but also not keen to remove any more bits without a very clear risk. One of the problems about stats is not knowing where you sit in the figures. I had a completely unrelated and common  procedure a few years ago with a one in 10,000 chance of anything going wrong. I was it!! Speedily rectified but it’s made me wary of thinking that 95% is a sure thing or that 5% won’t affect me. The best you can do is talk further with your oncologist, and if you take the test, discuss the results and how best to
interpret them. Best of luck and best wishes for a rapid recovery whatever you decide. 

Anna15

SC75 I am so sorry to hear what you have gone through but thank you for sharing your story. Breast Cancer is so individual, the type the stage it all determines the individual treatment. Luckily or unluckily I have discovered a local mum to me that has walked my exact path a few years before me. Great source of knowledge, quidance but she had a double mastectomy. The operation I have been told is a big one. 10 hours. I would like to get back to somewhat of my old life asap but this will slow things and do I need to put myself through it. Do want peace of mind? Do you ever get peace of mind after being given a cancer diagnosis? I want to live, I want to see grandkids, I want to travel. I want a quality of life back. Now I have time almost too much time to ponder everything. Xx

Suki

So good to hear you are an 11 year survivor and going strong, @Afraser

@Anna15 - my surgery was only 4 hours, with 5 days in hospital and a few more weeks recovery at home.  Your friend might have had a DIEP flap recon (whereas I had implants)?  Great that you have found a support person.

Tri

hi @Anna15 your internal dialogue will strike a chord for many of us. I recall being gently cautioned to keep an open mind and to be prepared for the possibility that, whilst the surgeon was confident a lumpectomy would be appropriate for me, I might have to have further surgery, including a mastectomy, if the pathology results came back with a more complex picture. As it happened in my case I didn’t need further surgery.  I found the state of uncertainty during the neo adjuvant phase challenging but I told myself  that it meant my treatment would be bespoke and truly tailored to me as it would be informed my particular results, as far as possible, and therefore have the best possible effectiveness. You can imagine it was a fantastic day whenever we got a scan done or a pathology report back that shed some light on which path I’d be taking next ☺️
On a side note @SC75 mentioned her cancer subtype as invasive lobular carcinoma or ILC. My breast cancer subtype was also ILC, I am not sure if you are, but just in case, BCNA has an ILC group and it, in turn has a link to the FAQs from the Lobular Breast Cancer Alliance 

 https://lobularbreastcancer.org/faq/
with responses to some of the questions you’re contemplating. 

Also, ❤️ what incredible responses and stories shared above - lots of solidarity here for you now and over the months ahead @An@Anna15 🌸🌻

jennyss

Dear @Anna15 and all respondents,

from jennyss in Western NSW

Triplebreast240

Hi can I ask what TCHP treatment stands 

Tri

TCHP stands for DoceTaxel, Carboplatin, Traztuzumab (Herceptin), Pertuzumab (Perjeta)

Mareealso

Hi Anna15, Sorry it has taken a little bit to get back to you..(life!)To answer your question regarding BRCA 2, Being positive greatly increases the cancer of returning…it did! I ended up with having both breasts removed (no reconstruction) and also having the ovaries and fallopian tubes removed as these also are sites for breast cancer (or tumours)to develop due to being estrogon sensitive. They are not considered metastatic sites but are considered higher risk for breast cancer tumours.  If it metastasises, likely areas appear to be spine, lungs but can really be anywhere.. be your own best advocate for your health! Knowing I had BRCA 2, made me more proactive in getting lumps and bumps seen to despite sometimes being  told “it doesn’t feel cancerous”…I am no longer willing to wait to “see what happens” ….hope this answers your questions and if you have any more, just ask!