Triple positive - HER2 - Newly diagnosed

J59
J59 Member Posts: 5
Hi all
I started my journey 3 weeks ago! It started with a call back from Breast Screen Q.  I received the results, my GP got me to a surgeon the next day & I has surgery the day after! No thinking time I just wanted this sucker out! I have since had a 2nd surgery to increase the margins but all was good.
Diagnosis:
Invasive Carcinoma 10mm Grade 2 Total Score 7
0/2 Lymph Nodes
Oestrogen receptor: Positive 25%. (most women 75-100%)
Progesterone receptor : Positive 5% (negligible)
HER2: Positive Score 3+
I am very lucky that the cancer was very small, found early and hadn't escaped through the nodes.  There will Radium but the question of Chemo - the jury is still out? 
I have seen the Chemo Oncologist who just gave stats on the first visit, (see her next week again) Surgeon says I'm on the border in fact Chemo is over treating but I should probably have the Herceptin as an insurance policy. Radium Oncologist suggested same but you have to have Chemo to get  Herceptin.

I am terrified at the thought of Chemo!  I would value other ladies opinions especially if you have had to have Chemo just to get the Herceptin or if you chose not to have the Chemo just for the benefit of  Herceptin. 
J


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Comments

  • Afraser
    Afraser Member Posts: 4,354
    Can't help with the choice as I had none but I did have both chemo and herceptin. Experiences with chemo vary widely so if it is recommended, think seriously about the benefit not just the possible side effects. Good luck. 
  • LMK74
    LMK74 Member Posts: 795
    Hi J59, sorry your here. My breast cancer is er positive her negative. Can't help with herceptin. I was literally terrified at the thought of chemo.whilst it's far from fun, it's nowhere near as bad as I imagined it would be. I'm nearing the end of chemo with one more to go then I have surgery and radiation. Of you have to have chemo it's not that bad.
    Hugs Lisa x
  • Brenda5
    Brenda5 Member Posts: 2,423
    Radiation will mop up any stray cancer cells around the breast area but what about any that slipped into the blood stream and carried to elsewhere? Do you want to run that risk? Everyone fears chemo but usually apart from a bit of tiredness which you can get with radiation too, and some nausea and hair loss most don't have a huge problem with it. Actually sitting down and having it is the easiest part yet seems to be the most feared. <3

  • Cassina
    Cassina Member Posts: 74
    I had similar and was supported by this support site, Mine was much smaller and I was also borderline, however I was encouraged to have the very best chance and have Herceptin, ( cost to hospital $60,00) with chemo to enhance its working and chemo (taxol) was not too bad. I have worked through and although tired, baldish, some days in bed by 7, not the worst thing and now starting radiation. I think you should give it the very best chance and not a huge problem, the staff were excellent and very supportive. 
    It is the fear of the unknown that scares us! good luck and think carefully
  • Cassina
    Cassina Member Posts: 74
    sorry $60,000, you are worth it!! good luck
  • primek
    primek Member Posts: 5,392
    Yep...can only have herceptin with taxol chemo usually as it is far more effective in combo...plenty of clinical trials support this. So 12 weeks then just herceptin. We get it. Chemo is scary but plenty of drugs to help with side effects. Most people tolerate taxol pretty well. Best of luck. Kath x
  • fairydust
    fairydust Member Posts: 290
    @J59 there is such a misconception around chemo. Years ago there were more side effects. Today there are side effects but not as bad as in the past. My oncologist stated I would probably not get nausea with the chemo she prescribed. If I did there were tablets I could take. I only used tablets 4 times over 16 weeks of chemo. 
    I did have side effects but not anything that couldnt be handled. 
    Yes my hair fell out and I became extremely fatigued but a year and a half later I am here and grateful that chemo and radiation saved my life.

  • J59
    J59 Member Posts: 5
    Thank you all so much for your thoughts it is very valuable to me in my decision making.  I have been told that I won't be able to work whilst having treatment due to working in a school environment but I can cope with that. Cassini it is good to hear from someone who is also borderline as well and that you opted for treatment
  • Afraser
    Afraser Member Posts: 4,354
    Did the school tell you you could not work? Just interested as I had not heard that schools might do that. Some people can't work or choose not to, but others are able to work through chemo.
  • fairydust
    fairydust Member Posts: 290
    @J59 Hi again I just read you were advised you couldnt work due to school enviroment. When I was going through chemo there was a fellow patient who worked in a high school. She was determined to get her year 12 student through and worked part time all through chemo. 
    Another friend of mine was a school secretary and had radiation first thing in the morning and then went off to work.
    I found treatment tiring but also met ladies who did work through it all equally a lot did not
  • Nadi
    Nadi Member Posts: 619
    Hi J59, I had lumpectomy, chemo with herceptin for 12 months and radiation. It is scary, but it is doable. I NEVER thought I would get through all that treatment, but 18 months on I have now finished everything, am back at work and am doing great. It can be a hard slog, but you will get through it. You will have an amazing medical team behind you every step of the way, and you will have the amazing ladies on this network who will be here to answer any question, address any concern, listen to you vent, and cheer you on when you reach those milestones. Many have gone before you, and unfortunately many will come after you, but you Can do this. While whether to have treatment is a very personal choice, just think about how you may feel if you don't have treatment and it comes back. if you are ok with that, then fine. But if you think it may be hard for you to deal with that then maybe the treatment is the best option knowing you did everything to beat this sucker. I wish we all had a crystal ball, but unfortunately we can only make the best choice with the information we have at the time. If you decide to go ahead and have Herceptin ask about getting a poracath in to save your veins. I am very grateful I had mine.

    All the best, good luck and come on here anytime.

    Nadi
  • J59
    J59 Member Posts: 5
    Good morning ladies! Firstly the question regarding working. No the School has certainly not at any time suggested that I could not work. It was my medical team and mainly regarding Chemo.  This is due to me being the only person in the office at a School, front line & I would come in direct contact with students, parents, customers & there would be no way that I would be able to avoid infections whether it be coughs or colds or more serious. Radium treatment would be fine however the timing of it all would put radium during the school holidays at Christmas time.  I certainly have no issues with regard to not working if Ido go ahead with treatment I would not wish to tire myself out with additional stress of work!  Thanks Nadi for your thoughts.  They are exactly the emotions I am currently working through presently. I think I'm almost there just have some more questions for my Oncologist later this week. J
  • Kat09
    Kat09 Member, Dragonfly Posts: 269
    Hi @J59 , the thought of any of the treatments we face are always scary at the start. I , like you have triple positive BC but have had a different treatment path due to the size and aggressiveness of my tumour. I had 4 x 3 weekly doses of AC Chemo followed by 12  x weekly Taxol with Herceptin 3 weekly for 12 months. Other than hairloss, fatigue was my biggest hurdle especially towards the end of AC chemo. With taxol i found that I was extremely lucky and had very minimal side effects, again except for fatigue towards the end of the cycle. I had my 1st herceptin only treatment a week ago and have had no dramas with that at all. My Breast specialist told me that herceptin would be " my best friend" due to the type of my BC. The chemo has done it's job and my BC has shrunk substantially so radiotherapy is next on the list before surgery. Once you get passed the 1st treatment the others just seem to flow by and the anxiety of the unknown disappears. listen to your Dr and always ask the nurses if you are worried or concerned about anything, they are an amazing support as are the women on this forum. I have a portacath in my arm and although initially it was a little painful and annoying it has made the whole process of hooking up to an IV much easier.   Good luck with your treatment
    Kat
  • LadyAside
    LadyAside Member Posts: 6
    Hey All,
    I'm recently diagnosed through a routine BreastScreen. I was terrified as I thought it was a death sentence. To make matters worse, my sister-in-law died 15 years ago from BC so having that experience made me very pessimistic about my chances. However, I've done some research, visited some amazing specialists, had surgery & am about to embark on chemo, Herceptin, radiation & Tamoxifen therapies. The BCNA network has been an invaluable tool for me & the support I've received has been awesome. I'm new to this forum, but I'm getting lots of positive vibes. Thanks girls & keep it up
    Sharron
  • iserbrown
    iserbrown Member Posts: 5,543
    @LadyAside welcome to the site!  Hope you've received your kit from BCNA.  My diagnosis was with Breastscreen and they gave me the kit on day of diagnosis.  As time went on and I had absorbed it all and got through my first surgery I decided to actually join the forum; looked from a distant initially.  We are all here to help!
    Take care