Forum Discussion
HER2 positive diagnosed Dec 24 -
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.
25 Replies
Did your lump shrink during the chemo and your indent resolve?
HiIce_Ti
I am very sorry to know about your diagnosis.
It’s great that you’re asking questions and being offered alternatives.
I was triple positive and finished the treatment plan almost identical toAnna15 and with a similar partially near complete response. A colleague had a complete (total) response and the surgeon couldn’t find the tumour at surgery. After the neo adjuvant chemo and surgery she had immunotherapy.The reason I opted for the chemo was because the data and trials seemed to indicate a good longer term outcome. I was also told having chemotherapy before surgery has additional benefits to shrinking the tumour - they can assess whether the specific drugs are as targeted and effective as they can be for you, by seeing how your tumour or lump responds mid way and before surgery and again after surgery. Also, the chemotherapy can attack any cancer cells in “distant sites” (if they are lurking there).
I found a decision tool on the Breast Cancer Trials network once I had already started chemo, but it might be helpful to you to compare different options. It’s just good to understand what treatments other people are experiencing too and why they might be different to you.https://www.breastcancertrials.org.au/breast-cancer-resources/neoadjuvant-patient-decision-aid/?srsltid=AfmBOop-At08xMVuBWf-8e3e4pMFKgTLdizAFQKpYtWO8SjhJJ6ANKMt
Ice_Ti wishing you all the best
Yes after the 6 rounds it had shrunk and I got a >90% pathological response to the chemo. That helped my lumpectomy to be less invasive. I have a scar under my left breast but so my indent is still there. How are you going?
My treatment was, 6 rounds of TCHP every 3 weeks, <90 % response to the chemo which helped shrink the lump. Then a lumpectomy, then 15 fractions of radiation followed by some TDM1 infusions (Herceptin and chemo together due to not getting a complete pathological response) to take it to a year of infusions.
Firstly I am so sorry this is happening to you. How are you going processing it all?
Well I have finished my active treatment on NYE, so now I take a daily letrozole tablet, monthly Zoladex injection and Six monthly infusions to help my bones after the side effects of treatment. Glad to not be going to the hospital every three weeks but gee what a difference 15 months can make. I just feel tired, body aches but hey it could be worse. Hope you are doing ok. What is your treatment plan?I'm still having trouble accepting it all. I haven't started treatment yet. I was diagnosed with Triple Positive BC. The dr wants me to do TCHP chemo. My lump is 2 cm on the underside of my right breast. The scans show no spread. But some surgeons say I can have surgery first. So I'm still confused what to do. I'm really scared of doing the TCHP chemo as I hear its really brutal. How did you do on it? Did you have reconstruction with your lumpectomy? I'm concerned about that too as I have small breasts (A cup).
- Hi @Anna15I hope you’re doing well. I wanted to share a bit more about my journey with my bilateral mastectomy, as I know it can be so helpful to connect with others going through similar experiences. My surgery lasted around four hours, and I chose not to have immediate reconstruction. Like @Mareealso I also want to mention my family history—my mum had ovarian cancer, and my aunt battled breast cancer. Because of that, I’m currently looking into genetic testing for the BRCA gene. If I find out I have it, I’ll be considering having my ovaries and fallopian tubes removed for peace of mind.As for the healing process, I think it’s important to remember that everyone’s experience is different. I actually found my recovery to be a bit easier than I expected! Once I woke up from the anesthesia, I felt pretty good (thanks to the lovely meds!), and within an hour, I was up and walking around—even went to the coffee shop with my partner! I only stayed one night in the hospital and was back home the next day. I took the prescribed painkillers for just a couple of days, and then I switched to panadol when needed. Staying active really helped; I walked on my treadmill and did my physiotherapy exercises. My drains were out in a week, and by six weeks, I was cleared to start running again! I know everyone’s journey is unique, and I was fortunate to have a relatively smooth recovery without work pressures. Looking back, those six weeks feel short compared to the big picture of life.About my Oncotype DX test results—turns out I have a 2.7% increased benefit from chemotherapy, which is a little higher than the original prediction of 1%. I had a strong feeling that I should consider this number, even though I was given the option to skip chemo. Statistics can be a bit daunting, but this one hit home for me, especially since I belong to the one in seven who has been diagnosed with breast cancer. Like @Afraser, I feel statistics sit differently for me now I have been one of them. For me, it’s all about giving it my all to prevent any chance of recurrence. My husband is wonderful and completely supports my decision, but he has a different mindset. He thinks if he were in my shoes, he might skip the chemo to focus more on living in the moment. It’s interesting how everyone has their own perspective on what brings peace of mind.Whatever you decide will be the right choice for you, and I’m here cheering you on! Like you, I dream of living a long, vibrant life—traveling, making memories with my kids, and watching my beautiful boy grow up. I truly believe that even if our old selves feel distant, we’ll get through this together and find joy in life again, appreciating every moment.Remember, you’ve got this! Please keep us updated on how you’re doing. We’re all here for you, supporting you every step of the way! 💖
- Hi Anna!I hope you’re doing well. I wanted to share a bit more about my journey with my bilateral mastectomy, as I know it can be so helpful to connect with others going through similar experiences. My surgery lasted around four hours, and I chose not to have immediate reconstruction. Like @Mareealso, I also have family history of cancer —my mum had ovarian cancer, and my aunt battled breast cancer. Because of that, I’m currently looking into genetic testing for the BRCA gene. If I find out I have it, I’ll be considering having my ovaries and fallopian tubes removed for peace of mind.As for the healing process, I think it’s important to remember that everyone’s experience is different. I actually found my recovery to be a bit easier than I expected! Once I woke up from the anesthesia, I felt pretty good (thanks to the lovely meds!), and within an hour, I was up and walking around—even went to the coffee shop with my partner! I only stayed one night in the hospital and was back home the next day. I took the prescribed painkillers for just a couple of days, and then I switched to panadol when needed. Staying active really helped; I walked on my treadmill and did my physiotherapy exercises. My drains were out in a week, and by six weeks, I was cleared to start running again! I know everyone’s journey is unique, and I was fortunate to have a relatively smooth recovery without work pressures. Looking back, those six weeks feel short compared to the big picture of life.About my Oncotype DX test results—turns out I have a 2.7% increased benefit from chemotherapy, which is a little higher than the original prediction of 1%. I had a strong feeling that I should consider this number, even though I was given the option to skip chemo. Statistics can be a bit daunting, but this one hit home for me, especially since I belong to the one in seven who has been diagnosed with breast cancer. Like @Afraser, since having breast cancer statistics feel so much different than they did before. For me, it’s all about giving it my all to prevent any chance of recurrence. My husband is wonderful and completely supports my decision, but he has a different mindset. He thinks if he were in my shoes, he might skip the chemo to focus more on living in the moment. It’s interesting how everyone has their own perspective on what brings peace of mind.Whatever you decide will be the right choice for you, and I’m here cheering you on! Like you, I dream of living a long, vibrant life—traveling, making memories with my kids, and watching my beautiful boy grow up. I truly believe that even if our old selves feel distant, we’ll get through this together and find joy in life again, appreciating every moment.
Remember, you’ve got this! Please keep us updated on how you’re doing. We’re all here for you, supporting you every step of the way! 💖 - 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!
- TCHP stands for DoceTaxel, Carboplatin, Traztuzumab (Herceptin), Pertuzumab (Perjeta)
- Hi can I ask what TCHP treatment stands
- Dear @Anna15 and all respondents,
from jennyss in Western NSW - 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 Alliancehttps://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 🌸🌻 - 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.
