Forum Discussion

Donna_B's avatar
Donna_B
Member
21 days ago

Triple positive invasive lobular carcinoma

Hi everyone

Having been diagnosed February 2025 I have had surgery and now have my medical oncologist and radiation oncologist this week.  My surgeon chose not to do neoadjuvent treatment .  This is my second cancer diagnosis with the first being a grade 3 melanoma some years ago.

My surgeon suggests radiation and chemo+ targeted therapy and the five year hormone blocker.

I see alot of women had treatment before surgery and I am wondering if anyone is similar to me and went straight to surgery? What was your treatment after surgery? How did you pull through? 

 

Any advice or information is so appreciated

 

Donna

6 Replies

  • HiDonna_B​ , I’ve also recently joined the +++ club, though ductal, not lobular, carcinoma. 

    How are you going? Have you had any more specialist appointments to confirm your plan?

    Another member of these forums shared this link with me, and I found it so informative to read through pros and cons of chemo vs surgery first. I’m not sure if it specifies lobular carcinoma, but I’ll still share it in case it provides some clarity or reassurance for you, as it did for me: https://myneoguide.com/#/

    I have a small grade 2 cancer, so I’m having a lumpectomy next Tuesday, and then based on the histology on the lump and lymph nodes (plus my genetic testing), we’ll decide on the rest of the treatments. For me it is so reassuring to have the first step in the treatment planned locked in.

    i hope you are able to enjoy a nice long weekend, without this resting too heavily on your mind x

     

    • Donna_B's avatar
      Donna_B
      Member

      Hello youngad 

       

      I am going well thankyou, I so appreciate your message, but sorry to hear if your diagnosis.

      I have had both my medical and radiation oncology appointments my MRI, PET scan, echocardiogram and bloods done, and now just waiting for chemo to start within the next two weeks. All my tests are back but as it's the Easter long weekend I can't ring to see if they need an appointment🤞 but I figure I am just going to enjoy this weekend until Tuesday and not worry. It is what it is right🤔

      I will be thinking of you Tuesday when you have your lumpectomy.

      I was so pleased with mine and the healing and I hope yours goes just as smoothly.

      I hope Easter bunny is kind to you 😄 the weather has been so beautiful 

       

      Donna

  • HiDonna_B I’m sorry to hear about your diagnosis - a roller coaster couple of months for you. If you join and then re-post your comment in the private Triple Positive Group there might be someone with a similar treatment sequence.

    I did not have surgery first but I was wondering if your Triple Positive Invasive Lobular Cancer (ILC) presented as a lump. ILC is usually described as presenting in a line of single cells through breast tissue (string of pearls) but in my case (unusually) my ILC showed up as a lump, so neo adjuvant treatment was recommended to observe the lump’s response and reduce the size of the 3.8 cm lump, this in turn would reduce the amount tissue that would need to be taken in surgery (I was recommended a lumpectomy).

    It’s a good question to ask your surgeon or oncologist why your treatment was sequenced with surgery first.

    I had 6 doses of a combination of drugs “TCHP”, then surgery, then 15 consecutive days of radiation therapy. After radiation I had 11 doses (each 3 weeks apart) of the targeted treatment + chemo called “Kadcyla” (not everyone needs the additional chemo, usually they have Herceptin instead). I was started on my oestrogen suppressing therapy (an aromatase inhibitor tablet called “Letrozole”) after radiation.

    It’s fair to say there’s a huge range of responses that vary for every person depending on their circumstances. For me the first 6 treatments with TCHP were rigorous, in terms of hair loss, appetite and fatigue. After that the next phases were more manageable but I was glad to be doing very part time work. It’s also different for everyone but for me it felt like a long haul of active treatment with over a 14 month period between the first IV infusion and the last (I think that’s typical for HER2+ folks). How I pulled through was probably more accident than design but a couple of things on reflection were important - getting a port a cath inserted (instead of having a canula and big search for a vein each treatment), signing up to an oncology exercise rehabilitation program and learning to plan and adapt my expectations of myself and aligning them with my known pattern of recovery after a treatment (dose). You will be able to do this depending on how you respond after a few treatments. Do be gentle on yourself and prioritise yourself, it’s okay to hold friends, family and activities at bay at the times when you need some space to just “be” and say “yes” to all offers of help, freezer food, dog walking etc. 

    I hope this gives you a bit of context of why someone might have been recommended Neo adjuvant treatment and also the treatment ahead. It is almost 12 months now since I finished my active treatment and I am grateful to be well and relieved to feel like my energy and physical wellbeing is restored. Sending you big virtual hugs for the next phase. 

     

    • Donna_B's avatar
      Donna_B
      Member

      Thankyou so much for your response, I understand maybe why now. Mine did not appear as a lump and was that sneaky kind of sheet in my breast.

      My surgeon mentioned radiation X 3 weeks and chemo+ targeted therapy then the five year tablet, so I guess pretty similar in ways.

      I guess the panic is the HER2+ and my head just wants something to stop it immediately, but I will find out tomorrow soon enough.

       

      Thanks so much again 

      • Tri's avatar
        Tri
        Member

        You are very welcome- yes that makes sense if you had the classic “sneaky” ILC. 
        HER2 positive and being ILC puts us in the small subset of a small subset! Might be helpful to check (if they haven’t told you) whether you have dense breasts when you have a good discussion tomorrow.
        I understand the focus on HER2 posi I took comfort from the research trials that have been done over recent years and the work done (salute to BCNA) to provide greater access for us to HER2 positive targeted drugs. Treatment has really evolved leading to some very effective and targeted treatments. 
        Hope you go well. 

  • Hi Donna_B 

    So sorry to see you join our select little club - the one we never thought we'd ever join :(   Bummer that this is your 2nd diagnosis tho.  :(   Out of interest - were you given immunotherapy for your melanoma treatment?  I hope you are recovering well from your surgery & have a good support network around you xx

    Did you speak to your Oncologist for their opinion as well as the surgeon, prior to the decision not to have neoadjuvant therapy?  Only some with BC (or indeed many other cancers) have treatment prior to surgery - and it can depend on a whole raft of things ... from the size, grade and stage of the tumour, plus other considerations .... Some who are HER2+ are given it, not everyone tho.
    Here is a document about it it .... it mentions Triple Negative diagnoses, not Triple Positive.
    https://www.eviq.org.au/getmedia/5c597e41-f1c5-43f4-8164-971a1d9b1795/1645-Anti-cancer-therapy-before-breast-cancer-surgery-neoadjuvant-v5.pdf.aspx

    Have you been assigned a Breast Cancer Nurse yet?  You may like to discuss it with her - but as you've already had your surgery, it is more for your own understanding of the decision! 

    I was 'lucky' and with an Invasive Lobular Cancer diagnosis, I bypassed chemo & only needed a lumpectomy followed by radiation & I am just coming off 7 years of hormone blockers.  This disease (as you'll know from your initial melanoma diagnosis) mucks with your brain, even more than your body ..... so it can take a while to become 'comfortable' with the diagnosis & treatment plan.   

    If you find yourself sad, worried, upset - please consider listening to both Charlotte Tottman's and Raelene Boyle's discussions here ....
    Charlotte Tottman is a 'psycho Oncologist' who counsels women with Breast Cancer .... and was diagnosed herself in 2018, having a double mastectomy, no reconstruction. She is Very easy to listen to as she 'get it'.
    Raelene Boyle has had multiple cancer diagnoses .... her video is compulsive viewing! (Copy & paste this link into a new window ...)
    https://onlinenetwork.bcna.org.au/discussions/general-lifestyle-and-wellbeing/listening-to-raelene-boyles-podcast-is-well-worth-it-as-well-as-charlotte-tottma/140928

    Feel free to also check out this thread that has a lot of interesting links in it & info on the forum .... we have some 'social' threads that you might like to check out too!  Also some 'tick sheets' for keeping track of your mental and physical health xx
    A big welcome to all New Online Network Members ..... | Online Network

    Take care & all the best