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Triple Positive IDC > No neoadjuvant chemotherapy offered??


Hi Everyone,

I wanted to explain my situation and hoping anyone in the same situation could answer my questions.. SUPER stressed ! 🙄

I was diagnosed in September 2023 with Triple Positive IDC, ER+ 90%, PR+ 50%, and HER2+ (3+). So Anatomic stage 2B.. Now here is the deal… the biopsy and initial tests showed a mass of approx. 2.1cm. At the time, ER+/PR+ were already confirmed BUT HER2+ result was equivocal (2+). NO lymph node involvement detected at that point.

My surgeon decided to go ahead with a Lumpectomy right away (2 weeks after diagnosis) as he was confident he could get clear margins and a good cosmetic outcome. He mentioned before the surgery that I would need chemo anyway, but never offered Neo-adjuvant treatment ! !

The pathology report came in, and HER2+ was confirmed as 3+… He removed 2 lymph nodes and 1 came back positive with macrometastases (1cm+).

Now here is the deal.. I see almost ALL fellow triple positive patients receiving neoadjuvant TCHP chemo, in order to monitor the response to the treatment. In my case, it's not an option and not knowing whether or not the treatment is working is scary!! My regimen is AC (4 rounds) + Paclitaxel x 4 with Herceptin - Then continue herceptin alone x 14.

I finished AC yesterday.

My medical oncologist is great! However, she is only considering Herceptin as part of my adjuvant therapy. I asked her if I could benefit from adding Pertuzumab. She said the benefit, as shown in the Aphinity Trial, is not really significant. Also PHESO (Trastuzumab + Pertuzumab) is VERY expensive in the country where I am receiving treatments.

So now, I'm left to decide whether it is worth paying USD 50,000+++ out of pocket to add Pertuzumab, as my insurance is not covering it in the adjuvant setting, or if Herceptin alone is 'safe' enough. I am just very concerned and confused… Seeing almost everyone get TCHP or THP before chemo, I'm really wondering if 1-) doing chemo after surgery and 2-) not getting any Pertuzumab is an optimal treatment of my cancer..

If anyone here 'only' received AC-TH post-operatively, I would love to hear your feedback on this.

Thank you so much in advance. I really love this forum!!!

All the best


  • specialk
    specialk Member Posts: 9,234

    Hello! Important to understand the history behind the addition of Perjeta and the move to neoadjuvent chemo for those who are Her2+. In the fall of 2013 Perjeta was initially offered to early stage (non stage IV) patients who are Her2+. It was given for tumors over 2cm or for those who are node positive, and at that point, only for the neoadjuvent chemo doses and then it was discontinued post-surgery. The reason for administering neoadjuvently was indeed to document efficacy, while the drug was new for this population. Since then this has become the norm for stage 2 or higherHer2+ patients. There have been some changes since then, with approval for continued adjuvent Perjeta, or the addition of some other targeted therapies. Also important to note that most Stage 1 Her2+ patients do not get Perjeta and often receive single agent chemo (Taxol) and Herceptin only, and get it adjuvently. I was diagnosed in Sept 2010 with a 2.6cm IDC that was strongly ER+, less strongly PR+, and very strongly Her2+. The norm at that time was surgery first, unless chemo was needed to shrink a tumor for a better outcome surgically. I had a bi-lateral mastectomy (my choice, I was initially offered a lumpectomy) with reconstruction about 6 weeks after diagnosis. Post-op pathology showed the SNB was positive for cancer even though it had been declared clear during surgery. I had complete axillary clearance surgery about a month later and it showed that in addition to the positive SNB I had a much larger positive node up the chain. I had some healing issues, 3 more surgeries, then started chemo - Taxotere/Carboplatin x 6 plus Herceptin, but I didn't start that regimen until a whopping 14 weeks after surgery. Since Perjeta had not yet been approved for patients like me the TCH was all I received. I am a sample of one, but it may provide you some comfort to know that prior to the use of Perjeta the prognosis for Her2+ patients was greatly improved with the addition of Herceptin to adjuvent chemo. I know well the feeling of having to take treatment efficacy on faith since there is no way to quantify the success of adjuvent therapy other than the lack of later recurrence. Was a separate pathology done on your positive node? Was there any discussion on removal of any additional nodes?

  • jlgif94
    jlgif94 Member Posts: 9

    Hello @specialk

    Thank you SO much for taking the time to answer! Especially since your diagnosis is close to mine. I really really appreciate it !

    Yes, I read that most stage 1 patients still get only Herceptin. I forgot to mention that from the first needle biopsy, my tumor came back as 20% DCIS and 80% IDC.. and measured initially 2.1 cm. So if we only take into consideration the IDC part, my surgeon probably thought/ hoped it was under 2cm IDC + No positive node at that point (so thought it could be stage 1 and wanted to avoid unnecessary treatments..?) … thus justifying the surgery first (that's just me talking in circle to reassure myself lol). After my lumpectomy, the DCIS was confirmed but as it was part of a 2.3 cm tumor (within and around it) - they couldn't separately measure it. So I guess I can stick with the initial 20% DCIS diagnostic.

    My tumor is strongly ER+ 95%, PR+ >50%. HER2/CEP17 is <2.0 (1.87), that's why it was equivocal before surgery. Signals/cell 6.4 (3+)

    My MO is saying that in the Aphinity Trial, although N+ patients do seem to indeed benefit greatly from Pertuzumab after 8+ years of follow up (as far a DFS is concerned), it actually includes ALL N+ patients (N1 so 1-3, and N2).. Since I have only 1 positive lymph node (as far as we know at least) she is pretty certain that the benefit would not be as significant as a patient that has, say, 5+ positive nodes. And it doesn't really justify paying 50k USD out of pocket.. No effect on survival at all according to her as well..

    Regarding ALND > I asked this question, and he doesn't think I need more surgery. Although only 2 nodes were removed, he said that since the 2nd one (that was a bit more up in the chain) is COMPLETELY cancer-free, they now have enough evidence showing that radiation of the axilla provide similar results in terms of regional control of the disease.. (I also read the Z0011 trial and it does seem to make sense). But in fact, knowing if more nodes were positive could potentially guide my decision towards adding Petuzumab… To answer your question, I didn't get a separate pathology for the lymph node. Only a mention of it being positive for macromets with largest one being 10mm, with involvement of the node capsule BUT no definite extra-nodal extension. Although I'm happy to avoid more axillary surgery and its potential side effects, I am indeed concerned as to whether or not we could potentially be leaving some infected lymph nodes, just as you mentioned you had another positive lymph node that would have not been detected if you didn't undergo more surgery… I guess I'll have to either deal with the uncertainty, or fight for a full ALND.

    One thing I didn't mention is that I'm 'only' 29 years old - 28 when diagnosed 4 months ago. So I was thinking to throw everything I can at it but at the same time I don't want to be over-treated, especially if I take into consideration the SUPER highs bills that would come with PHESGO 😆

    Last but not least, I also did some research on Neratinib.. As HR+/HER2+, I read that I could benefit from this drug after Trastuzumab treatment, if I don't receive Pertuzumab. But here again, this won't be covered by my insurance and it is very expensive as well..

    My comment is now getting way too long (sorry), but the other thing I was reading about is AJCC 8th edition staging and its related disease free survival rates. Also, the outcomes on the Predict tool seem pretty good and this online tool only considers Trastuzumab as part of their algorithm..

    • My TNM is T2 N1 M0 = Anatomic Stage 2B / Prognostic Stage 1B.
    • If I consider my tumor as 1.84 cm - T1 (2.3m -20% DCIS - not sure if we can do that 🤣🤣): Anatomic Stage 2A / Prognostic Stage IA

    Not too bad in the end, right? Patients >30 years old seem to do worst though, based on my research..

    Maybe that's just me trying to downstage myself even further, as my surgeon did say I'm T2 N1.. However, there's got to be a difference between a 2.3cm 20% DCIS tumor vs. say 4.9 cm full IDC?

    But anyway, leaning towards a prognostic stage IA somehow makes me feel more at ease going with Herceptin alone in the adjuvant setting… My next chemo (1st Taxol - 1/4 + Targeted Therapy) is in a bit less than 3 weeks.. I still have a bit of time to decide what to do..

    Once again, thanks a lot SpecialK. I don't have anyone around me to discuss this with, and it feels very lonely and overwhelming. It feels comforting to be able to discuss this with someone.. hope you won't find this comment excessively long and redundant 😁

    All the best and take care

  • nnguyen
    nnguyen Member Posts: 52

    >jlgif94 … ER+ 90% PR + 60%

    >My medical oncologist is great! However, she is only considering Herceptin as part of my adjuvant therapy

    Having both ER+ and PR+ (though not necessary for PR+) should ask your oncologist about endocrine treatment in addition to trastuzumab.

  • jlgif94
    jlgif94 Member Posts: 9

    @nnguyen Thanks for your comment.

    Indeed, she mentioned endocrine therapy. I meant only considering Trastuzumab as part of the adjuvant anti Her2 therapy. I should have been cleared ;-)

    As regards endocrine therapy, she mentioned the good old Tamoxifen… considering recent (?) studies such as SOFT, it seems I could benefit from OFS as well so I'll definitely ask about that too.

    I'll only get started on this around April 2024… so let's see ! First I still have to make that decision reg. Pertuzumab 😁

    Thanks a lot!

  • specialk
    specialk Member Posts: 9,234

    jlgif94 - do you know if there is any availability of discounted anti-Her2+ therapy where you are located? If you did decide to try another targeted therapy post-chemo, sometimes the manufacturer will supply the medication at a lower cost for insured patients whose coverage does not include these drugs.

    I am also wondering if further imaging - either ultrasound, PET/CT or MRI - could be used to get a better look at your axilla to determine nodal status. Imaging has a size threshold, so sometimes small things are not seen, but it might provide a measure of peace of mind. Agree that rads to the axilla has come close to equal to ALND with a lesser chance of collateral damage. When I was treated this had just started to be a conversation, but time has borne out that approach.

    Also, your young age breaks my heart - I so wish you were not having to deal with this and having to make these heavy decisions at this point in your hopefully long life! Not fair. I will say though that I applaud the depth of your research and how well you are advocating for yourself. You have probably come to realize that much of this is hard to pin down, decisions are not absolutes, and there are no guarantees. That can swing both ways - less treatment can be enough, more treatment might not be enough. Impossible to know - so you go with what you have and hope for the best. I will certainly be hoping for the best for you!

    I am happy to answer any questions you have, or be someone you can bounce ideas off of - it is indeed overwhelming to not have concrete answers. The lack of control is one of the biggest hurdles to get over. You are doing great, being thoughtful about your choices, keep on going!

  • jlgif94
    jlgif94 Member Posts: 9

    Hi again @specialk

    I will try to look into it, contacting the manufacturer and see what's feasible, Thanks !

    I did further imaging after surgery before starting chemo. I had a chest/pelvis CT scan + bone scan. Not sure if the CT scan would have caught additional positive lymph nodes though… I think I'll just trust that if anything is left behind there, it would only be micromets after 8 rounds of chemo, and rads would be enough..

    Thank you for your kind words.. Being diagnosed so young is definitely tough and that feeling of "it's not fair" is never really leaving me haha. I do try to research as much as possible and advocate for myself.

    Thanks once again for your encouragements and positive thoughts ! I will let you know once I've made my decision regarding anti-her2 :)

    All the best

  • jlgif94
    jlgif94 Member Posts: 9

    Just checking back in…. I decided to go ahead with the dual anti-her2 (PHESGO > Trastuzumab + Pertuzumab).

    Got my first injection 3 weeks ago along with Paclitaxel. 2nd round today… pray for me lol

    So far not too bad. Quite a lot of joint pain / headaches etc. but can't really tell whether these are caused by Paclitaxel or Phesgo just yet.

    BTW, I got PHESGO at a discounted rate just like you suggested. It's a buy one (dose) get 1 free offer… Got a weird feeling when they told me this, seemed like I was a fresh market buying raw food lol. But definitely helped with my decision (and my wallet!!)

    Thanks again for your kind answers!