Totally confused after seeking second opinion

2

Comments

  • TonyaM
    TonyaM Member Posts: 2,836
    Hi @GinGin, I know a few ladies who went chemo first- didn’t shrink the tumour. By 6mths ,when breast was rescanned,the tumour had actually grown bigger! They needed a mastectomy and then had to do a different chemo.Ofcourse this isn’t the norm but it can happen. So a question might be:how will you know if a particular chemo is being effective ?I had similar pathology to you back in 2003 (neg nodes) had a full aux clearance,lumpectomy,radiation.Cancer came back in the same spot 7yrs later- yes,that can happen too. I then had a mastectomy and chemo + Tamoxifen. That was 12yrs ago and I’ve been fine since. I believe having a really good breast surgeon is important,especially if you need a full node clearance. Mine did a great job and I never got arm lympheodema.
    All these bc decisions are awful. Once you have all your questions answered, go with what feels right for you at this time.
  • GinGin
    GinGin Member Posts: 155
    Hey @Tarma, you are only trying to help and I genuinely appreciate it. Please don’t feel you have given me a bum steer. This is a first for so many of us. I have found reading other’s comments/ personal posts very helpful too. And have found a number of virtual friends as well :smile:
    xx
    Gin
  • GinGin
    GinGin Member Posts: 155
    edited August 2023
    Hi @TonyaM, that’s interesting and good to know. I thought chemo will definitely shrink a tumor and thought the surgeon was being conservative by telling me it’s 50/50 chance of shrinking.

    I happened to just finished reading an interesting article about lumpectomy vs mastectomy and the corresponding recurrence rate. The article mentioned that having a mastectomy does not mean the cancer will not recur (it provided recurrence stats but I can’t recall the % - sorry, am already having brain fog lol). I was under the impression if one chooses mastectomy- the silly cancer will no longer be shopping in our body!

    xx
    Gin
  • Tarma
    Tarma Member Posts: 73
    @Aska my understanding is that your HER2 status is determined by the presence of protein in cancer cells ,, Human Epidermal Growth factor Receptor 2 ,, the more of that protein determines its grade, the higher the level the more aggressive,  grade 3 being the most aggressive and therefore classified HER2 + ... That was my understanding anyways ,, so I was just a little thrown with Gingins grade 3 HER2 neg status.. lol it's enough to make your head explode 🤣  I need to stop .. 
  • GinGin
    GinGin Member Posts: 155
    Hey @Tarma, I managed to find what gene activity testing is on the https://www.cancercouncil.com.au/breast-cancer/diagnosis/tests/tests-on-breast-tissue/#HER2-status and your idea is totally logical! I now understand why Surgeon B says chemo in my case is a ‘maybe’ and he wants to do the lumpectomy on me first…..
    xx

  • Tarma
    Tarma Member Posts: 73
    But while I'm here ,, hears my opinion on your stitch @GinGin I opted for neoadjuvant , I figured it was better to have as much information about how best to treat My cancer as possible.. and if its been removed Before chemo, you have no way to see how Your cancer or you will respond to the different drugs they give you.. and as we know the effects of chemo on cancer cells vary greatly, some even grow during chemo,,,  so, if the worst happens and it returns again some day down the track, you're ahead of the game already because you have a very good idea of how stubborn Your cancer is or isn't.. 
    To me, it was kinda simple,, how can you really fix something if you can't see what your trying to fix .. 
    Anyways that's my 2 cents worth 😃🤣
    ✌️&🩷
  • TonyaM
    TonyaM Member Posts: 2,836
    Hi @Tarma, the trouble is,you don’t know if the chemo is working or not for sure until a few months down the track when they rescan.
    If it wasn’t effective then the cancer is growing and possibly spreading. If cancer returns years later it can sometimes morph into completely different pathology so the original chemo might not be the one of choice.I’ve seen that happen too. Having a mastectomy reduces your risks of a local recurrence to about 1% of coming back in that chest area.
    With a lumpectomy and no radiation,it’s around 30% risk and with radiation afterwards it’s drops down to around 8%. These are the stats given to me for my situation many years ago so don’t quote me but at least it’s a rough guide. Ofcourse there’s no guarantee that a cancer cell might be lurking dormant elsewhere in the body.We’ll never really have 100% peace of mind but over time,you learn to live with it and enjoy life.
  • Tarma
    Tarma Member Posts: 73
    Hey @TonyaM fair point,, as I mentioned , my journey has just started and I'm learning as I go,, info from you lovely ladies who have been there done that is invaluable 😊 
    I'm trying hard to not let this cancer ride completely take over my life,, so far , im failing 🤣🤣
    I might need to stop and fact check a little better before I post again ...
    ✌️&💕T
  • PrisMay1
    PrisMay1 Member Posts: 82
    I’ve just been through my second episode of BC and my 2 cents worth would be go with the surgeon you trust and feel most comfortable with. I’ve know my surgeon for many years now and I trust him and know he gives me the best advice for me while allowing me to make the decisions.  My first surgeon basically told me what would be happening and I didn’t get much choice - although I had little awareness and little time to research myself. Plus it was quite a few years ago! Needless to say I sought another surgeon to follow up and review my annual mammograms.  I wish you luck. 
  • arpie
    arpie Member Posts: 8,198
    @Tarma .... if you are finding yourself feeling a bit overwhelmed by it all (and it happens to us all - as we try to fully understand what is going on & we ALL tend to 'over think it'!) ....

    Please ring our Helpline tomorrow & chat with our lovely ladies there ....1800 500 258

    Also, consider listening to the Charlotte Tottman Podcasts (a breast cancer psychologist who was diagnosed with Breast Cancer herself) and how it affected HER just as much as it affected all of us too xx - and also changed her approach to her clients afterwards.

    I've just started listening to them and they are just great.  They are very easy to listen to. 
    (Check out Season 1 first, then, if you like, Season 2 as well - links below.)
    I am sure you'll find them helpful.
    https://www.bcna.org.au/understanding-breast-cancer/bcna-resources/podcasts/charlotte-tottman-podcast-series/

    take care
  • TonyaM
    TonyaM Member Posts: 2,836
    Hi @arpie, great advice! I’ve listened to that podcast and it’s terrific for someone embarking on this crap bc journey 
  • Tarma
    Tarma Member Posts: 73
    Hey @GinGin how's things?? 
  • GinGin
    GinGin Member Posts: 155
    Hi @Tarma, I am doing well. I had my surgery on Friday (+axillary clearance). Was discharged this morning after the drains were removed. 
    Seeing my surgeon this Friday ( hopefully sooner if the pathology reports are out earlier) to work on next steps, fingers crossed all the nasty stuff has been taken out!!!
    I hope you are staying positive and strong! We can all beat this!
    xx
    Gin
  • Tarma
    Tarma Member Posts: 73
    @GinGin I'm so pleased you're doing well 😃💌

    My nasty chemo side effects 🤒🤕🤧are starting to settle a bit and im definitely feeling more positive and strong than I have been the last 4-5 days 😃

    Today I'm kickin cancers butt!! 

    💟T. 
  • iserbrown
    iserbrown Member Posts: 5,765
    My sister has found Day 3 is the tell tale as to side effects for her