Mastectomy/ Her 2 positive

Hi everyone! Hope you're all coping as best as possible especially during these awful times...

Want to share my story and see if anyone else in a similar situation or been through this and has some answers, I know every experience with breast cancer is different but it's very scary and sharing it makes it more bearable.

I was diagnosed with stage 1 grade 3 invasive left breast cancer , HER2 positive in Sept 2020, had 4 cycles of AC so far and started Herceptin/ Perjeta and Docetaxel in Jan 2021, second cycle next week. I'll be finishing it in March, and planning for mastectomy end of March or beginning of April. 
 

I keep thinking of the surgery and all the implications but my surgeon says will discuss all this end of Feb, before my last session of chemo. I did ask him if the reconstruction will take place at the same time with the mastectomy and he said depending on the type of the reconstruction. I was hoping for implant reconstruction, anyone else in this group that chose implants? Was it done at the same time with the mastectomy? How did you feel afterwards and did you need radiotherapy? Have you required a second surgery for the permanent implant? Is it best to go for the nipple sparing or for the full mastectomy? How's the recovery afterwards? I'm only 33 y old, no children but I'm always up and about and like to keep active, I understand the not lifting and minimise arm movements, protect the operated area from trauma but how long til you're back to work... office based.

Thank you  

 

 

 

  • Hello Victoria87, 

    I hope your treatment has been going well so far and that you will soon hear from other ladies on the forum who have had a similar diagnosis and been in a similar position to you before having to have a mastectomy and consider their reconstruction options. 

    When you see the surgeon at the end of February, you will have an opportunity to ask specific questions, for example about the time you will need off work and you will hear from your specialist all the details as to what will happen on the day of the surgery. There is very useful information on our website on this too on this page and you can also find out more about the different types of reconstruction that may be an option for you here. More specifically, you mentioned that you would be considering implant reconstruction and this is something you can find out more about on this page

    Our nurses are also available on this free number 0808 800 4040 if you would like to talk things through with them. Don't hesitate to give them a call - their line is open Monday to Friday from 9am to 5pm. 

    If you use our "search forum" function which is located on the blue banner at the top of the site and enter keywords such as "mastectomy" or "implant reconstruction", you will be able to see lots of past relevant threads on the subject from users who have previously had a mastectomy or opted for this type of reconstruction so don't hesitate to respond to any post you feel would be relevant to you or anyone you would wish to connect with. 

    I hope everything goes well for you and that the surgery and reconstruction all go according to plan.

    Best wishes, 

    Lucie, Cancer Chat Moderator

     

     

  • Hi Victoria 

     

    How are you feeling with the AC? 
     

    I've just had mastectomy with immediate reconstruction on 6th Of January. I had the implant. When I seen the surgeon in December he showed us Videos of how the procedure works and pictures of other ladies who had mastectomy's with and without reconstruction which really helped. 
     

    I'm recovering well still sore and restricted with my arm movement but not too bad. I spoke to my oncologist yesterday and I am to start Radiotherapy in around 3 weeks. There was a query originally as there is a higher risk of the implant being damaged by the radiotherapy(they told me the risk of it failing goes from 10% to 15%) but after a lengthy discussion with the surgeon it was decided that we went with the immediate reconstruction and pray and be positive all will stay well in there :) It was never mentioned to me that I had the option of nipple sparing so not sure about that one. They did mention about tattooing and reconstruction of the nipple so I may look into that at a later date. 
     

    hope I've helped with what you wanted to know but I'm here if you need to know anything else or want to talk 

     

    sarah xx 

  • Hi Sarah,

     

    Thank you so much for your reply, any experience sharing is important, wishing you a speedy recovery

    Can I ask you what type of cancer have you had and if it was partial or double mastectomy? How long did the op take? Was it same surgery for the implant reconstruction?

    The doctors said I'll go on the maintenance treatment of Herceptin for about an year after surgery, possibly Perjeta too, will I need radiotherapy too?

  • Hi Lucie,

    Thank you so much for replying to my post.

    This site is very helpfyl when it comes to info and patients experience in dealing with cancer, plus it gives that reassurance and hope that it's so much needed!

    I've already searched in the toolbar tans read about mastectomy but I've decided to post about it anyway cause I'm looking for someone with a more similar case of mine , which appears to be quite difficult Probably because only 20% of the breast cancers are HER 2 positive...I'm optimistic though because there is targeted treatment nowadays and it hasn't spread to my lymph nodes, it still remains stage 1 The tumour has halved in size after the AC 4 sessions and I'll have my second session of Herceptin/ Perjeta/ Docetaxel next week.

    I know will discuss surgery in detail end of Feb with my surgeon but it's just such a long time till then...

     

  • Aah thank you Victoria recovery not too bad :) 

    Mine is triple negative. I had a full mastectomy with demol matrix Implant all at once.  it took around 4 hours. 
     

    I can't have anything medication wise after as mine isn't sensitive to any hormones. I'm not sure if you will have Radiotherapy. I do know ladies who had hormone sensitive cancers and are having radiotherapy too though so it's possible. I think it just depends on what the oncologists think is the best course of treatment. 
     

    I spoke to my oncologist yesterday and he said side effects from the radiotherapy shouldn't be too bad so made me feel a bit better about it. 
     

    xx

  • Mine is HER 2 positive, so is not hormonal. Treatment involves targeted treatment : Herceptin and Perjeta. I still had to have the AC for 4 cycles and I've survived but the Docetaxel really hit me hard, I've started on 4th Jan together with the Herceptin and Perjeta, so 3 more cycles to go...

    Just got to stay strong  

     

     

  • Aah I see I was thinking that Her2 was a hormone. 

     

    Hopefully your last 3 cycles will go by quickly. It's funny how chemotherapy affects everyone so differently isn't it.. I had the Pacliataxel/Carboplaitin first and got by ok but then had Eparubacin/Cyclophosphamide and that knocked me so much more. If was manageable but some days I felt so nauseous and off. To be fair though I suspected that that was a lot to do with the Filgrastim. 
     
    xx