43 Her2 positive er positive

Im 43 and I’ve just been diagnosed with her2 positive er positive invasive breast cancer. There’s a confirmed lump 13mm and I’m awaiting mri results as there’s another larger area of concern that showed on a CEM. No sign of lymph node involvement as of yet even though my under arm aches. The discussions have changed so many times about treatments - first they said probably surgery then Chemo. Today the nurse said chemo might come first. I’m so confused- it’s making me ache with anxiety. My hands hurt so bad. Has anyone else experienced anything similar? What treatment did you have and in which order- I’m keen for a mastectomy and reconstruction. 

  • Hello Smudge24, 

    It must be such a stressful time for you at the moment as you have just received your diagnosis of HER2 positive and ER positive invasive breast cancer but are still waiting for these important MRI results. It must be confusing for you to still have this uncertainty about treatment and to be waiting to know for sure whether you will have chemotherapy or surgery first. I hope that you can get some clarity on that soon. 

    I hope that you will hear from others here who have had a similar diagnosis and that they will share with you what treatment they had and in which order. I've had a little look around the forum for you and found for example  's thread from a couple of months ago which may be relevant to you and which you are welcome to respond to.  also commented on that thread mentioning that she was offered chemotherapy first and was also ER+ and HER2+. I hope that they will pop by on your thread and post their experiences or don't hesitate to comment on that thread or any other relevant thread on the forum. 

    If you would like to talk things through with our nurses, the free number to call is 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

    I hope that you find out more soon about what the best option for you might be and that you get a treatment plan in place and it all goes well for you. Keep us updated if you get a chance!

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Hi Smudge24, I am sorry to hear of you diagnosis, I know what a stressful time it is prior to starting any treatment. I was diagnosed with invasive ductal carcinoma in January. I'm also er positive, pr positive and HER2 positive. I initially thought I was going have surgery first, but it was then decided I should have  chemo first and then surgery. I've had 5 chemo so far with 2 left to go. As far as I know I will be having a mastectomy and reconstruction a few weeks after chemo ends. If you have any questions I'm happy to share my experience so far. I wish you well on your forward journey. Xx

  • Hi Smudge24

    So sorry to hear your news, it’s such a stressful time for you.  Like Pippin, I am also er/pr positive and HER2 positive but I had the surgery first and about to start chemo next week, I was diagnosed in February.  I know it’s a very confusing time but hopefully they will soon have your treatment plan sorted out and you can move forward.  Keeping busy and lots of walks helped me feel less anxious and calmed me down somewhat. Happy to help if you have any questions or just want to chat, best wishes x

  • Thank you Norasand and Pippin24. I’ve had a meeting today with doctor and still need one more ultrasound on one area to see if it’s another small tumor. That’s the determining factor for whether chemo or surgery comes first. The surgery part doesn’t bother me hugely. I think it looks like i’ll be going down the lumpectomy and radiation route. Chemo is the part I feel most nervous about. I’d love to hear how you’ve found chemo Pippin24. If you tried the cold cap, what’s happened to your hair etc. Good luck in starting yours next week Norasand, how do you feel about it? Let us know how it goes. How long is yours? 

  • Hi, I had two tumours, plus cells in breast tissue and one lymph node, so they decided to try and shrink them with chemo first. I was put on EC-T chemo, 3 EC, followed by T (for me this is docetaxel). Had no problems with EC, with only minimal side effects. Tumours had already reduced after these three cycles. Then started docetaxel, which I had been really worried about, as it's stronger and some of the side effects mentioned scared me. However, I've been fine  on this too, still with minimal side effects. I had been concerned about nail damage on the docetaxel, but started using a product called polybalm at the start of my chemo and have had no issues. I'm also now on phesgo injections for a year, due to being HER2 positive. I decided against using the cold cap, as I'm already prone to headaches. I got a lovely wig, which I wear if going out for a meal, or with friends. I also bought some really nice hats from a company called anna bandana, which I wear most of the time. Like Norasand, I go out for a walk every day, as it helps with my mindset and keeps me positive. Keep in touch and let me know how you get on. 

    Norasand, it's great that you've already had your surgery. Hope all goes well with your chemo. Xx

  • Hi , I have 12 cycles of Paclitaxel & trastuzumab, trastuzumab for a year then neratinib, also having radiation but unsure when this will be. Feeling very nervous the closer it gets, I am immunocompromised as I have no spleen, just hoping I can get through treatment without too many problems, really reassuring to hear from Pippin24 experience , I am going to try cold cap and see how it goes, will keep you updated.  Good luck for your ultrasound and future treatments keep in touch and let us know how you get on xx

    Pippin24 thank you, so pleased it’s going well for you, really interested in polybalm have I left it too late to start? Best of luck for rest of treatments, let us know how things go for you xx

  • Hi Norasand, I started using the polybalm a couple of days before I started chemo. This is the advice they give you, but if you haven't, they say to start as soon as you can. If you buy directly from polybslm, they deliver quite quickly. You can get more information about this product on YouTube, which is worth a watch. You can also send them messages with any questions, they get back to you very quickly. Good luck for next week. Xx

  • I am currently undergoing Ec-T chemo, have had 2 cycles so far with 2 more to go. Was really anxious about chemo and side effects but have been fine, some nausea and heartburn only. Am using cold cap and have no hair loss or thinning. Have 4 cycles of herceptin and Phesbo after Docetaxel and have been led to believe these targeted drugs don't cause hair loss.  Does anyone know if this is correct? I have invasive ducal carcinoma and Her2 +, not in lymph nodes, and will be having a lumpectomy afrer chemo then a course of radiotherapy. I am using a product called Talika for eyebrows and eyelashes which you use twice a day and seems to be helping me keep them in place. Happy to chat anytime x

  • Hi Suzyq71, it good to hear that you have been doing well on chemo, with minimal side effects. I wish I had know about the product for eyebrows and lashes. After 5 cycles of chemo, I am now starting to lose mine, so too late for me. I had to have 3 EC and 4 docetaxel, just 2 left to go now.I too was diagnosed with invasive ductal carcinoma and am HER2 positive. I have started phesgo injections, when I went onto the docetaxel. I apparently have to continue with the injections for a year. Also recently told I will be starting bone infusions in August, which will be every 6 months. I will be having a mastectomy a few weeks after I finish chemo. Then radiotherapy and hormone blockers for 5-10 years. Good to hear the cold cap is working for you. I didn't try it as already prone to headaches. Wish you well on the rest of your journey. Xx

  • I haven't been told anything other than the 4 red chemo and 4 targeted drugs. I give myself filgrastim injections for 7 days after chemo. No mention yet of other drugs that I may need to take or bone infusions. Just wishing I was further along this journey. Wishing you all the best going forward xx