Mastectomy in Stage 4?

Hi, I've been metastatic for 2 years, have only had initial chemo and have been on herceptin and Perjeta for almost 2 years. My recent mammogram showed that my primary tumour has recurred and there are 2 new tumours near it. There are no visible mets as of 2 months ago. My oncologist wants me to have a mastectomy and to start tamoxifen. I have an appointment with a surgeon in a couple of weeks. Has anyone else here had a mastectomy in stage 4, and do you feel it has helped? I really don't want to go through this trauma if it is not going to extend my life.


  • primekprimek Broken HillMember Posts: 2,819
    If untreated the tumor will just continue to grow and eventually break through your skin wall. It may be a new primary tumor (with different pathology even). I understand your reserve but I don't believe they would suggest the surgery if they didn't feel it of no benenfit. Kath x
  • JennyJenny Member Posts: 92
    Hi @Annielou, I haven't had your exact experience  of having stage4(metastatic) and then a mastectomy being advised. 
    Mine was a smaller surgery. Perhaps this'll be helpful to fill in a little of the picture for you,  maybe with  stories from others here.

    For me,  after years of bone mets, with good sensitivity to Her2Positive treatment (same  as your mets, I guess, cos you're having Herceptin and Perjeta), a couple of years ago I had a very slowly growing spot showing up on mammogram.  

    The core needle biopsy showed DCIS. (I think DCIS is sometimes called a Stage O breast tumour because it affects duct cells only, not other breast tissue.)  I was given the usual DCIS option of No Surgery or Surgery (lumpectomy).

    So, OK, Stage 4, but not out... I was happiest to have a little lumpectomy, and felt pretty lucky it was a solo tiny lump. I think DCIS can sometimes be more complex, e.g. lots of spots. (That may have given me a mastectomy decision.)

    After the surgery the other information that the tumour pathology results gave us was that, as @primek has said, the receptors on the DCIS tumour cells were found to be a slightly different tumour cell receptor type to my original diagnosis.

    So my oncologist and I have been able to work through, as best we can, the best drug match for tumour sensitivity, maybe why your doctor has advised tamoxifen.

    Wishing you well for any biopsies and path results. I also went from the medical oncologist to the  oncology breast surgeon then back to the medical oncologist for this bit. For me,  fitting a lumpectomy in with my ongoing regular treatment was not as big a picture as what you and your team are considering for your best ongoing health.

    Hoping you have the chance to talk through the info with as many people as you need. I pretty much wore people out with questions (it was also confusing for my family) until we could put things in perspective,  yet it was worth it to feel focused on Op day.

    For you now, most brilliantly, the mets have taken a back seat, and yet  there's new crummy (to put it politely) stuff to work through. Hoping there may also be some pleasant things to enjoy in the next couple of weeks of Spring before you get to talk things through with the surgeon. Jenny x

  • annielou52annielou52 Member Posts: 4
    Thanks Kath and Jenny. When I saw the surgeon she said I couldn't have recon because I have inflammatory breast cancer and it often recurs - as indeed it has after the ultrasound said it was just scar tissue last year. Also that I would need radiotherapy to the chest wall. Then after having the core needle biopsies the breast nurse said I may need chemo first if my triple neg receptors change. Getting more complicated and time consuming for a stage 4.  My results should be ready on Mon, the nurse said she would speak with the surgeon at clinic on Tues, and she will let me know the results and the surgeon's thoughts at treatment on Wed. It is a very long wait, I had ultrasound August 1. Oh well.

  • annielou52annielou52 Member Posts: 4
    Sorry mean triple positive of course!
  • primekprimek Broken HillMember Posts: 2,819
    Well you couldn't have a skin sparing mastectomy and reconstruction. It might be something that can be looked at later with fat and skin transfer from elsewhere at a later stage. Hope surgery goes well for you. 
  • Lisa1407Lisa1407 Elwood, VictoriaMember Posts: 29
    Hi Annie
    I was diagnosed Stage 4, with two large breast tumours and mets to hip bone and femur. Breast tumours had different pathologies but they decided to treat all as ER/PR+ on a clinical trial. On the clinical trial the breast tumour that was not ER/PR+ was monitored closely and as soon as it started to slightly increase in size they took me of the trial and I had an immediate mastectomy (without reconstruction due to the likelihood of recurrence as well). I was relieved to have the breast tumours removed because of the different pathologies. Just meant I had one less thing to worry about. Also, the debate about whether a mastectomy at Stage 4 improves longevity is still widely contested. So, If I was you I would have the mastectomy if advised - anything that may help is worth it in my view. Good luck with your decision. Lisa xx
  • annielou52annielou52 Member Posts: 4
    Hi Lisa, thanks for your reply, very interesting that the tumours had diffferent receptors. That's what I couldn't understand, my Onc said she would keep me on the herceptin and Perjeta even if the breast tumours came back HER2 negative, because she said that was obviously keeping the mets controlled. I got a call from the Onc office today to see her tomorrow, so I guess I will find out more then. Cheers
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