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Surgery before chemo, for a large-ish HER2+ tumor?

sarahnh
sarahnh Member Posts: 105

Hi - I was recently diagnosed with ER-/PR-/HER2+++ IDC/ILC. Largest tumor is about 3 cm, and at least one lymph node is positive (was biopsied).

Has anyone here with a similar diagnosis been given the option of having surgery first, and chemo afterward?









Comments

  • minustwo
    minustwo Member Posts: 13,004

    I think you'll find that with your HER2+ diagnosis, the docs will want to get you started on chemo right away. Neoadjuvant is the standard of care. Yes, to shrink the tumor, but more important to start killing the HER2 'cells'.

  • melbo
    melbo Member Posts: 266

    mine was purely IDC, but other than that my initial cancer was pretty much the same — 2.8 cm and 1.0 cm tumor with one lymph node. Chemo first — TCHP for me — followed by surgery and whole breast radiation. Chemo is almost always going to be the first choice in this case to shrink the tumors and immediately start killing any cells in your body.

    Just out of curiosity, why do you want surgery first

  • sarahnh
    sarahnh Member Posts: 105

    Thanks - I am just trying to learn about all the possible options out there. The oncologists I spoke with suggested chemo first. However they are all at the same hospital group.

    So I am trying to learn whether that is truly the only option for my type of cancer, or do some people actually have surgery upfront.

    The data suggests that there is no survival difference with chemo first or surgery first. Chemo first can allow de-escalation of surgery in some people (lumpectomy, less nodal surgery), and more tailored treatment afterward. Surgery first allows a complete inspection of the pathology. Some data suggest that having chemo first is associated with a higher risk of lymphedema. So there are pros and cons.

    That's why I was hoping to see whether anyone here has been given the option of surgery first...or even maybe demanded surgery first.


  • AlwaysMeC
    AlwaysMeC Member Posts: 107

    Mine was smaller at 1.8 cm, and one positive node, IDC. The oncologist wanted me to have more options and added Perjeta which is normally required for 2cm and larger.

    While my tumor was certainly small enough for a non deforming lumpectomy, the reason for neoadjuvant treatment is to make sure HER2 specific chemo works and to start getting rid of any stray cells. I ended up with a partial response - complete resolution of the breast tumor, but I still had residual in the node. If I had both removed before chemo, we would not know if more chemo was needed. So now I am on additional chemo of a different type, which is specifically targeted to get anything the first chemo didn't get. I think I would be in a constant state of worry if I had surgery before chemo because I would not know how effective it was.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107

    I wanted to add, is the data you are looking at specifically for HER2 positive? I don't recall seeing anything out there addressing HER2 surgery before chemo. Per my oncologists and breast surgeon, neoadjuvant is generally recommended because of the agressive nature of that subtype -- to make sure it's treated as soon as possible and to confirm the chemo worked.

  • elainetherese
    elainetherese Member Posts: 1,625

    I'm with AlwaysMeC. It's good to know how well chemo worked for your cancer. I was lucky. After AC + THP, all the active cancer in my breast and node was gone. Hence, I just did Herceptin for a year and no further chemo.

    I also had a big lump (5 cm with a lovely satellite), and since it disappeared, I could get a lumpectomy. The surgeon took a golf-ball sized amount of tissue out that had surrounded my surgical clip. No need for reconstruction, which can involve multiple surgeries in many cases.

    Good luck, figuring out your path forward!

  • sarahnh
    sarahnh Member Posts: 105

    Thanks you guys!

    My understanding is, it's common for Stage I HER2 positive cancer to have surgery first, to help prevent potential overtreatment. There is an online interview with my oncologist where she explains that: https://www.healio.com/news/hematology-oncology/20200519/sara-m-tolaney-md-mph

    I'm just trying to make sure I've considered all my options. I would hate to jump in blindly, and then have regret. That said, I am 99% sure it will be neoadjuvant chemo for me. But I am interested to hear if anyone has made the opposite choice!

  • The NCCN Treatment Guidelines are the gold standard. Current guidelines indicate that neoadjuvant chemo is the preferred treatment for HER2+ and TN patients with T2 or larger tumors (i.e. 2cm+) and those who are node positive. For those with smaller tumors who are node negative, neoadjuvant chemo can be considered but is not noted to be the "preferred" option.

    image


  • elainetherese
    elainetherese Member Posts: 1,625

    Hi!

    You may want to PM SpecialK. She was diagnosed with HER2+ breast cancer before neoadjuvant chemo became the norm for HER2+ cancer. So, she got surgery first, and obviously, she's still here.

  • redcanoe
    redcanoe Member Posts: 72

    I had surgery first and if I could go back in time, I would have had chemo first. I had to have a dose reduction of my chemo for 4/6 cycles. It would have been nice to know how effective the chemo was and if I didn't have a great response, be offered TDM1.

  • aram
    aram Member Posts: 319

    I had a 3.5 cm tumor and surgery first was not an option for me. I prefer chemo first as if there is partial response Kadcyla can be used which has shown to have better results for partial response.

  • specialk
    specialk Member Posts: 9,211

    sarahNH - I think to understand the rationale for neoadjuvent chemo for Her2+ patients with tumors larger than 2cm or higher risk factors like nodal spread - which is laid out very well in the article you linked and in Beesie's graphic from NCCN - it is important to get the background on why there was a change from doing surgery intitally after diagnosis. As ET said above I was treated from late 2010-2012 for a 2.6cm triple positive tumor with two positive nodes. I had surgery first (BMX), then ALND surgery after the positive nodes were discovered, then 6 TCH, then Herceptin for the balance of the year. Surgery first was the norm, unless you had a situation where margins might be difficult to achieve for either mastectomy or lumpectomy, high risk factors like age/nodes/large tumor. In the fall of 2013 Perjeta was approved for use for early stage patients. Initially it was only approved to be used with a taxane and Herceptin, and only neoadjuvently. The reasoning was to gather information about efficacy. A few years later adjuvent usage of Perjeta was approved and for those who did not achieve a pathologic complete response to neoadjuvent chemo, Perjeta was continued with the balance of Herceptin. Past that point additional trial data showed that Kadcyla was better than Perjeta adjuvently for those who did not have a pCR at the time of surgery following neoadjuvent chemo with either TCHP, or AC-THP. That brings us to the current regimen of neoadjuvent chemo for patients with qualifying clinical criteria, then surgery, then a continuation of Herceptin accompanied by additional targeted therapy depending on what post-surgical pathology shows. There are pros and cons to treatment order. Neoadjuvent treatment can muddy the water of exactly what you have going on because the post-surgical pathology will be impacted by that treatment - you may never have a firm handle on your staging status beyond what imaging showed, and biopsy info. In most cases any difference in staging is unlikely to change treatment. Having surgery first may provide a more clear pathological picture, but then you are going on faith that the adjuvent chemo and targeted therapy is doing the intended job. Because I had surgery first I will never know if my adjuvent treatment was effective. Other than still being here. In your shoes, I would definitely do the neoadjuvent treatment since you don't have anti-hormonal treatment adjuvently as an option. You need to know if chemo and targeted therapy is effective so that consideration is given to what is the best course to follow after surgery. If you have concerns about accurate staging of nodes you can inquire about having a sentinel node biopsy done at port placement if that is an available option. Wishing you the best! Hang in there!

  • Marlowbucks22
    Marlowbucks22 Member Posts: 1

    yes that is the most common way for Her2.

    I am having chemo & operation planned after. I would recommend that. At fist I wanted surgery 1st but only because I didn’t know the facts.

    It means straight away getting those drugs in you to slow the spread of this fast spreading Her2, surely that’s more important than waiting!!!!

    It also means watching how the tumour it self behaves/ shrinks with chemo and that means a better plan for surgery once they see the MRI scan again after chemo.

    It also gives you more time to investigate the right type of surgery for you. My mum rushed into surgery ( ok it was 10 years ago) but choose the wrong way for her.

    It also means more time with your boob, and I have enjoyed that and had time to say good bye to it in its original form!


  • moderators
    moderators Posts: 7,693

    Marlowbucks22, welcome to BC.org! We are so glad that you reached out to join us and share your story and opinion on this topic, thank you! Please let us know if we can provide any assistance to you. As a suggestion, it may help others to know your story better and answer questions you may post if you fill out your Profile (tab at the top right of your screen) with your diagnosis and treatment information and make it public, so it appears under every post you publish. Our Community Help section (left menu) has information and explains everything on how to make the best use of our forums.

    Good luck, and please come back to let us know how you're doing!

    Warmly,

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  • kathleen1966
    kathleen1966 Member Posts: 67

    I had surgery first and then chemo. I was given a choice as the breast was coming off regardless. This was because my DCIS amounted to 7cm and was throughout the ducts. I had multi tumors, the largest was 1.6cm. Also Paget’s disease on the nipple. 4 positive lymph nodes at surgery. 15 removed. I had chemo and then a year of Herceptin only. No other treatment. I wanted surgery first because I wanted it out. I wanted to think of chemo as getting rid of microscopic cancer cells. It’s true that having chemo after surgery meant that there was no way to know if the chemo worked. But surgery also revealed the true state of my cancer, which was a stage 3a. My lymph nodes did not show up on My ultrasound, MRI and PET scan. Both have positives and negatives.

  • barbojoy
    barbojoy Member Posts: 47

    @Kathleen1966 me too! My largest tumor was 1.9 cm & DCIS was about 7 cm and I had pagets - Left as well. I had a DMX first, then chemo and up next is radiation. They only removed 1 lymph node during my mastectomy and it was positive (hence the need for radiation). I haven't seen many others with a diagnosis so close to mine. I am however, also ER+. Anyway.. nice to online meet you.

    @SarahNH- If you are having doubts or concerns about the order, I'd suggest a second opinion. My first opinion team at a cancer center recommended surgery, then chemo then radiation. I got a second opinion at the University hospital and they also recommended surgery first. It reassured me. For me, chemo was harder than surgery and I am glad I had the surgery first. Good luck!

  • LuvPups0611
    LuvPups0611 Member Posts: 5

    Barbojoy- I was just reading some of your other posts, wondering which type of cold capping did you use. I am scheduled to begin TCH treatment in two weeks and I’m so apprehensive about doing the cold capping. Also how were your SE’s with TCH? Very nervous about this journey I am about to embark on.

  • sarahnh
    sarahnh Member Posts: 105

    I hope barbojoy will reply to luvpops0611's post above!

    But meanwhile I want to pop in and say thank you to everyone for their posts. I read them all, and it has been helpful and comforting. I am currently doing neoadjuvant TCHP, and will have surgery afterward.

    luvpups0611, I am doing TCHP and cold-capping with the Paxman system. My goal in cold-capping is to help prevent permanent hair loss, but I personally don't care about temporary baldness. I am diligent about capping during the infusion, but I don't follow any of the at-home instructions. I wash my hair whenever/however I want, wear ski-hats which rub against my scalp, etc, and keep my hair buzzed at a #2 clipper setting. I had my third TCHP two weeks ago, and so far have retained maybe 30% of my hair? The thinning is pretty uniform, no bare patches, and I don't look bald, but definitely "thinned". I hope that helps! Please feel free to ask me questions if you want (either on the board or by PM).


  • katg
    katg Member Posts: 206

    I wanted to chime in as a Her2 + breast cancer gal. I also got a genetic return at my cancer hospital adding in BRCA2. I am Hr+ amd PR-.

    I had a 5cm tumor and chemo was suggested first to shrink the tumor. 12 rounds of Taxol/carboplatin each week and i of the Red Devil. Then 27 days of a cancer pill Talzenna. It shrunk my tumor by 1/2. Knowing i was going to have a mastectomy, the chemo was to kill cells. My tumor at surgery was close to my pectoral muscle but the three sentinel nodes on that left side were clear. Vascular too. I am now on Femara daily. Started Projeta/Herceptin infusions 4 weeks ago. Every 3 weeks for a year.

    What do we know for sure? Nothing. We do though get what so many mentioned, better and better focused treatments for these funky cancers. My Her2+ status came after diagnosis last July, from my surgery Feb 9th.

    I really thought i would do cold capping. I enjoyed hearing your experience with it. It is all how each of us wants to do it. I finally decided to just let it go. Worrying how it might thin and the cost were just not worth it. March of this year, 8 months after starting to let go of my hair, I have come to accept the women in my mirror who has about an inch all over her head.

    Chemo for me was the right thing to do. Radiation was said my the RAD doctor to not be worth the long term side effects. Not needed. It also means if cancer comes back, i will have RAD does if needed.

  • sarahnh
    sarahnh Member Posts: 105

    Hi - Just popping in to say thank you to everyone who posted their experience and advice. I ended up doing chemotherapy (TCHP) before surgery. My surgical pathology showed no residual cancer left in the breast or nodes. So the chemo really did something!

    For my type of cancer, I've heard that chemo seems to be the dominant treatment. Some doctors and researchers think it's possible that, in the future, patients like me may not even need surgery.