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.

Comments

  • primekprimek Broken HillMember Posts: 3,201
    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: 96
    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: 6
    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: 6
    Sorry mean triple positive of course!
  • primekprimek Broken HillMember Posts: 3,201
    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: 30
    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: 6
    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
  • LeapfrogLeapfrog Member Posts: 4
    Hi annielou52  I was diagnosed Stage IV with bone mets one year ago and immediately had a bilateral mastectomy as I had a 10cm primary tumour in the right breast and a 2cm primary tumour in the left breast.  I had 29 nodes removed on the right side, all were cancerous and I have extensive mets in bones from skull to femur.  I didn't hesitate about having bilateral mastectomy and the actual operation was easy.  Drains are a bit of a nuisance until they're removed, any time up to three weeks post op but, apart from that, the only problem I had was terrible pain from the bone mets.  You don't feel a lot of pain from the operation because the nerves are severed so the area is numb for quite a long time.  If I hadn't had the bone pain I would tell you I sailed through it and I'm in my mid sixties.  I was ill for three years before diagnosis because nothing showed up on mammograms.  After the operation and removal of the tumours my health improved a lot and I went from feeling as though I was dying to living again!  I didn't have reconstruction because I was too ill and I don't honestly care that I don't have breasts now.  That's not to say I didn't grieve; I did but I'd rather be alive with no breasts than have breasts that are killing me.  
  • annielou52annielou52 Member Posts: 6
    Hi Leapfrog, thanks for your reply. I’m pleased u r much improved after ur surgery.

     The tumours came back with slightly different receptors, new one is PR neg, original is still triple positive. I commenced tamoxifen 3 weeks ago and saw the surgeon again yesterday. I’m still undecided, I’m worried that if I go thru with the mastectomy and radiotherapy that mets will reappear soon after, and the ongoing grief and trauma related to losing the breast would be for nought. If I was not Stage 4 or if it was just a lumpectomy with rads or a mastectomy with immediate recon I would do it. But I know that I would be stressed out trying to hide being lopsided, and I question the impact on my quality of life for however long I have left. I really cannot make a decision.
  • primekprimek Broken HillMember Posts: 3,201
    I guess you need to ask the question what will happen if you don't. ..what can I expect to happen to my breast and will it result in further metasteses quicker.

    Very important you have all that information. A mastectomy is a  relatively simple op and they wouldn't suggest it unless they believed it would 
    A ...increase survival and
    B ....decrease pain and reduce  issues of tumour invasion. 

    And just because stage 4...it doesn't mean you cannot have reconstruction. 

    Kath x
  • JennyJenny Member Posts: 96
    Hi Annie, have just been having a go to get my head around all the new things you are juggling with as you work out your steps to a decision.

    I began this post Sunday night, then I realised the BCNA phone helpline for discussion with breast and cancer nurses and also the BCNA phone counselling service for people with Metastatic Brest Cancer may be a helpful combo for you. The counselling help was great for me last year when my usual healthcare decisions went through a very complex patch.

    This morning I saw a post from @iserbrown with the link to the phone helpline set out very clearly so will, I hope, follow with a quote from her post. If this does not work the BCNA 1800 500 258 number can explain. Sending best wishes as this week gets underway for you, Jenny x




  • annielou52annielou52 Member Posts: 6
    Thank you to everyone who responded. After changing my mind several times I finally got in to my psychologist (I had been discharged previously), who told me I needed to nail down my onc and ask likely disease trajectory with and without mastectomy and radiotherapy.

    My Onc said that some people are considered  “extraordinary responders”, and although it was too early to classify me as one yet, the fact that I had so little Metastatic disease after more than 2 years, and nil for the last 14 months, suggested that I could be one, and thus aggressive treatment was warranted. I was surprised and thrilled to hear this, as I had asked my previous Onc (I’m on my fourth!) if I was oligometastatic, and she had dismissed my question, saying the term was controversial. I then clarified that even though I’ve had mets in 2 sites, liver and bones, I was still oligo. I also said inflammatory breast cancer is considered very aggressive due to skin involvement, she agreed but said that I had still showed a great response. She said it was more likely in people who were HER 2 positive, as I am. So I’m now booked in for 16th this month, which gets me to 6 weeks post op at the end of the year and to commence 5 weeks of Rads beginning Jan. I’m not thrilled about Rads in summer as I live in the sun, but such is life.
  • primekprimek Broken HillMember Posts: 3,201
    So glad you have a plan. 
  • Molly001Molly001 Member Posts: 295
    I'm so excited for you! Good luck with your surgery and rads. 
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