Hello I'm 40 and recently diagnosed with her2 positive. No family history of breast cancer. My sister and maternal cousin recently diagnosed with lobular cancer. They are having surgery. It's been a Whirlwind recently. The professionals say it's early, the treatment is going to be chemo , waiting for my medical oncologist appointment to find out how long etc. Surgery then hormone tablets. I'm struggling to understand why I need chemo first. If anyone had or has her2 I would be grateful to share your story. Thank you kindly.

@Cheri I am Her2+ and had chemo first. It reduced the size of the cancer so much the Onco asked if she had the right breast 🤣 I loved having the knowledge that the chemo actually worked. I wouldn’t of had this knowledge if I had the surgery first.

@Cheri and other thread contributors thanks for raising the questions and generously sharing your stories - very helpful and demystifies things! I am sorry this is a bit long but I wondered if sharing my experience of neo adjuvant treatment might be helpful to you or others. I was diagnosed in February this year at age 61, HER2 positive, oestrogen and progesterone positive (triple positive) and my cancer type is invasive lobular cancer. I had a lump of just over 30 mm. I had 6 cycles of neo adjuvant treatment- Herceptin, Perjeta and chemo (Docetaxel plus one other) intravenously through a port surgically inserted in my right arm. I understood that pre-surgery treatment would be useful because my treating team would have early insights and data about whether the chemotherapy is working (or not) and benefits included reducing the tumour, insight into drug tolerance and what options for chemotherapy might be effective after surgery depending on my pathology results. I had a mid-way ultrasound and when it showed that my tumour was shrinking, as a patient, I feel that was a really significant benefit. It was encouraging to me, my family and friends.I have found it helpful to mentally set some ‘milestones’ for each stage of my HER 2 treatment regime in my case: neo adjuvant, surgery, radiotherapy, post-surgery treatment. Breaking it up gave me moments to pause and appreciate where I was at - I felt happy to welcome back my taste buds or my hair and fingernails growing back a bit a couple of months after finishing neo adjuvant therapy. During my neo adjuvant phase I was grateful my oncologist was so concerned about making my experience sustainable very early on, taking into account my working life, my spouse’s experience of this and my wellbeing. She was open to tweaking my regime - for example changing to a weekly instead of a big dose every three weeks. In the end I stayed on the conventional treatment cycle.Yes I did encounter side effects - not all at once but I experienced fatigue, dehydration, diarrhoea, mouth ulcers, sore feet and fingers (neuropathy) and loss of taste. I was unlucky and contracted Covid unfortunately very energy sapping. I highly recommend an oncology exercise physiotherapy program, an adapted program focused on strengthening, wellbeing and building stamina; I started towards the end of my neo adjuvant phase but wish I had done so earlier in the regime. I was fortunate to have a very skilful breast surgeon for my lumpectomy and I have completed 15 sessions of radiotherapy at our local radiology unit. I am now completing the remaining treatments: I’m having Kadcyla every 3 weeks. 7 more cycles to go…! Last one in late April if all goes well. I hope you have a positive experience and are kind to yourself if you have tough moments. I feel a little overwhelmed by the kindness and good vibes that have come my way and I am just very grateful for the support of platforms like this, my husband, sons, family, friends and colleagues - especially those who’ve experienced breast cancer who’ve come forward with generous insights and care - and incredibly skilled professionals in every part of the health system who are busting their brains to help. That’s what keeps me inspired to do my bit and give it my best shot.

I am SO sorry to see you join our exclusive club, @Cheri .... hopefully someone that is Her2+ will jump on soon xx. Like your sister, mine was Lobular ... Like you, there was no family history of breast cancer (any cancer!) in my family (mine all died from heart attacks) - so it is a bit of a shock! You can be angry, sad, frustrated - all at the same time & these are totally normal reactions to the diagnosis. Charlotte Tottman (a BC psychologist who was diagnosed herself a few years back) has amazing insight into her own reactions to her diagnosis - and was amazed at how hard it hit her, even tho she'd been counselling others for years ..... it was only after SHE was diagnosed, that she fully understood just how much it changes you ..... She has a very 'easy' speaking manner and most can identify with the emotions that she went thru at the time too.You can check out both 'seasons' of her podcasts here:https://onlinenetwork.bcna.org.au/discussion/25505/season-2-podcast-series-what-you-don-t-know-until-you-do-with-dr-charlotte-tottman#latestDirect link to the podcasts here: (Start with No 13 - the very first episode.)https://soundcloud.com/bcna/sets/what-you-dont-know-until-youRe chemo prior to surgery - this is fairly standard with some cancers, to reduce the tumour size prior to surgery ... Is your Oncologist/Medical Team aware of your sister & cousin being diagnosed recently as well? They may be keen to see if there is a genetic link? Have you been genetically checked as part of your treatment so far? Do you have daughters? You may also like to Check out this thread, it has a heap of info on the Blog & other areas that you may also be interested in .... be it art & craft, gardens, meals, pets etc - even funny bits (we all need a laugh, now & then!) There is also a link to some 'tick sheets' where you can print them off & 'self assess' your mental & physical 'state' ..... to take along to your Team Meetings - sometimes it is easier to give them a copy, than to actually talk about how you are going xxhttps://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latestTake care and all the best with your Onc appointment next week xx. Let us know how you go - you can use this thread as a bit of a 'diary' of your treatment & emotions xx

Hey @Cheri Welcome 😊 like you im Her2+, but im not hormone + Im having chemo first, in my 2nd cycle now.. I took the advice of my Oncologist without hesitation. He assured me neoadjuvant is the best way to go.. 🤞🤞Keep us updated😊

Hi @Cheri I was hormone positive and didn't have chemo before surgery, but that was 11 years ago, with a reasonably large tumour. It's fairly common now to have chemo first as this may reduce the scale of surgery required. I also had one cancerous lymph node so chemo for me was largely to eradicate any cancer cells beyond the breast. Best wishes.

Her2 positive | BCNA Online Network

21 Replies

IlonaC
Member
2 years ago
Hi Cheri
I just got diagnosed with her2 positive and they started me on an aggressive chemo treatment to reduce the size of the lump pre surgery.
1st round done mild symptoms so far.
Good luck with your treatment I hope the symptoms improve for you
Tarma
Member
2 years ago
@Cheri Thankyou Lovely 😊

And I absolutely agree, this and the my journey app, I love them ❤️

Catch up soon xxx
Cheri
Member
2 years ago
@Tarma ahh sorry to hear about the side effects, glad you are coping though. I think chatting to people (like here) and supports groups and loved ones definitely make the journey a little easier or bearable. I'm going ok...let's see how I go next week.

Hoping your side effects simmer down , xxx
Tarma
Member
2 years ago
@Cheri hey girl 👋

I've found chemo pretty tough, im having just about every side effect in the book, except nausea lol .. but im coping ok atm .. sorry I can't be more positive lol it's a tough gig but im half way there now so that's something to be happy about 😃

How are you going? Keep me updated 😊
Cheri
Member
2 years ago
@Tarma how you going with the chemo? I am having my second one on Tuesday.
Cheri
Member
3 years ago
@Blossom1961 @Afraser @Tarma Thank you all for your responses, it gives me such reassurance. Thanks for sharing your journey, may all be well with you all
Afraser
Member
3 years ago
Hi @Cheri

I was hormone positive and didn't have chemo before surgery, but that was 11 years ago, with a reasonably large tumour. It's fairly common now to have chemo first as this may reduce the scale of surgery required. I also had one cancerous lymph node so chemo for me was largely to eradicate any cancer cells beyond the breast.

Best wishes.
Tarma
Member
3 years ago
Hey @Cheri
Welcome 😊 like you im Her2+, but im not hormone +
Im having chemo first, in my 2nd cycle now..
I took the advice of my Oncologist without hesitation. He assured me neoadjuvant is the best way to go.. 🤞🤞

Keep us updated😊
Blossom1961
Member
3 years ago
@Cheri I am Her2+ and had chemo first. It reduced the size of the cancer so much the Onco asked if she had the right breast 🤣 I loved having the knowledge that the chemo actually worked. I wouldn’t of had this knowledge if I had the surgery first.
Cheri
Member
3 years ago
@arpie Thanks for your response. Yes, I have told the medical team about my sister and cousin. They will most likely carry out genetic testing aswell. Yes, I have 2 girls. I will check the video out, thank you. So good to hear from someone who has been through this experience, I appreciate the information and your response.

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