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Diagnosed stage 4

Sharon1111
Sharon1111 Member Posts: 10
edited September 2016 in Metastatic breast cancer
Hello,
I am mother of 2 young girls and just diagnosed stage 4, six months after completing all the adjunctive treatment for stage 1 early breaststroke cancer. I am trying hard to get my head around it all, especially after all signs were good.

I was wondering how long any one has survived stage 4, I have just started chemo therapy again, it's hard not knowing whether it will work or not.
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Comments

  • Deanne
    Deanne Member Posts: 2,163
    edited March 2015
    So very sorry to hear your Stage 4 diagnosis. I am not in your position but I do know that there are a number of ladies on here who are living well, years after a Stage 4 diagnosis. Like everything to do with this disease it is different for everyone depending on your exact situation and how your cancer responds.

    Sending hugs and lots of good wishes for success with your treatment. It must be just so much harder having chemo in this situation. Really hope it works well for you and your family. Deanne xoxo
  • Deanne
    Deanne Member Posts: 2,163
    edited March 2015
    So very sorry to hear your Stage 4 diagnosis. I am not in your position but I do know that there are a number of ladies on here who are living well, years after a Stage 4 diagnosis. Like everything to do with this disease it is different for everyone depending on your exact situation and how your cancer responds.

    Sending hugs and lots of good wishes for success with your treatment. It must be just so much harder having chemo in this situation. Really hope it works well for you and your family. Deanne xoxo
  • JessicaV
    JessicaV Member Posts: 297
    edited March 2015

    Hi Sharon1111,

    I hope so much that you will be there to see your daughters grow up and marry and have children of their own.

    This diagnosis is understandably really scary. But it does not necessarily mean anything more than that you will need more and possibly ongoing chemo/targetted therapy/hormone therapy to kick it out of your system if possible or at least to hold it stable for years. Is/was your cancer ER+/-, PgR+/-, HER2+/- ? What sort of chemo/ and other treatments did you have initially, and what sort are you having now and how often? 

    Have you found a good support group for women with secondary breast cancer?- those are the people who have learnt the best ways to get past the fear and can help you in this distressing stage. Friends in that position say this makes the world of difference. BCNA have PYNKS, and here in Perth they are a brilliant group run by a very competent woman.

    The book about how Herceptin was developed interviewed women who have survived over 20years at Stage 4 and are living well. I have a good friend who is ER+, PgR-, HER2+ whose dozen golf-ball-sized stage-4 tumors in her liver and lungs vanished completely after about a year on Paclitaxel and Herceptin. 

    best wishes, let us know how you are going and how we can help

     

  • JessicaV
    JessicaV Member Posts: 297
    edited March 2015

    Hi Sharon1111,

    I hope so much that you will be there to see your daughters grow up and marry and have children of their own.

    This diagnosis is understandably really scary. But it does not necessarily mean anything more than that you will need more and possibly ongoing chemo/targetted therapy/hormone therapy to kick it out of your system if possible or at least to hold it stable for years. Is/was your cancer ER+/-, PgR+/-, HER2+/- ? What sort of chemo/ and other treatments did you have initially, and what sort are you having now and how often? 

    Have you found a good support group for women with secondary breast cancer?- those are the people who have learnt the best ways to get past the fear and can help you in this distressing stage. Friends in that position say this makes the world of difference. BCNA have PYNKS, and here in Perth they are a brilliant group run by a very competent woman.

    The book about how Herceptin was developed interviewed women who have survived over 20years at Stage 4 and are living well. I have a good friend who is ER+, PgR-, HER2+ whose dozen golf-ball-sized stage-4 tumors in her liver and lungs vanished completely after about a year on Paclitaxel and Herceptin. 

    best wishes, let us know how you are going and how we can help

     

  • Sharon1111
    Sharon1111 Member Posts: 10
    edited March 2015
    Hello,
    Sounds like a good idea to join support group, it may be just what I need. I had a ER+70 with clear margins initially, but now its a ER+50. Chemo is Carboplatin and Gemcitabine. Doctors said that this is most unusual for a mucinous type of tumour to behave like this, as they are not usually aggressive. Here hoping that it will unusually go away. Good to hear that people are surviving so long with stage 4
  • JessicaV
    JessicaV Member Posts: 297
    edited March 2015

    Hi,  just after my BC surgery my daughter had a tiny breast lump that was mucinous  that needed biopsy and then removal, and we were not sure if she was about to go through the whole breast cancer trip along side me. Luckily it  turned out to be not cancer, but at the time we did a lot of reading about it.

    It is a very unusual form of cancer, and hard to get information about, but I remember they talked about pure mucinous type and mixed mucinous type. The pure form is pure mucinos tissue, is slow growing and unlikely to metastasise and has very good results. But if it is "mixed" they have to treat mucinous cancer cells plus whatever the other sort, often IDC that are mixed with it.

    Also my daughter found research that showed that this sort of cancer is harder to spot than many. They are often multiple but the surgeons don't discover that until surgery, and radiographers are more likely to miss metastases on the initial scan for them. The researchers also said oncologists often undertreat them when it comes to chemotherapy,.

    The bone scan and body scan we have before surgery to check for metastases only show lesions over 1cm across, so maybe yours was already there but too small to show up on the scan, and did not get hit hard enough with the original chemo. If they wallop it hard this time, it is highly likely  they will clear it out for once and for all. Which would mean you have an excellent chance of having several more decades of life ahead of you.

    best wishes

     

  • Sharon1111
    Sharon1111 Member Posts: 10
    edited March 2015

    Wow, thats interesting.  As mine was completly missed 19mm, they only picked up I had BC as DCIS showed on Mamogram. My ultrsound came back clear!. The mixed mucinous was only identified after my bilateral mastectomy, which I opted for as there is some family history.  I had 4 x TC, then was on Tamoxifen.  Again I had a check up at Oncology, which was all good, then one week later check up with surgical which was different department who picked up the enlarged lymph nodes.  I keep thinking if I had missed that second appointment I would have been none the wiser! I have a different Oncologist now, who is very onto everything.  Thank you for sharing..