Metastatic BC Patients - Know Your Options and Don't Give Up

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willscas
willscas Member Posts: 3
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I was diagnosed in February of 2012 with IDC, Grade 3, ER+, PR+, HER2+.  Had a lumpectomy and sentinal node biopsy - all 4 nodes removed were positive.  Subsequent scans in March 2012 revealed spread to my liver, bones, and lungs.  My oncologist gave me the news that Stage 4 is considered incurable and they generally recommend a course of palliative treatment to manage the cancer, but not with curative intent.  I was only 40 years old with two young children and refused at the time to accept that palliative was my only course.  My oncologist agreed to an a more aggressive chemotherapy regimen...6 treatments spaced three weeks apart...Taxotere, Carboplatin, and Herceptin.  After 3 treatments, I had a PET scan which showed no evidence of cancer in my breast or any of the organs that it had spread to.  I have had another PET since then with the same clean result.  My surgeon has gone from stating that it is "unlikely" that I will achieve a complete response to treatment, to agreeing to perform a mastectomy and recommending preventative radiation therapy.

There is only a small percentage of women who achieve long term remission with Stage 4 breast cancer.  However, I think all of us deserve the chance to be one of those, which will require more physicians to be willing to think beyond palliative.  It also requires us, the patients, to thoroughly educate ourselves on all the treatment options so that we can more effectively partner with our doctors to develop a plan that takes our treatment goals into account.  Who knows - maybe if more of the medical community treated Stage 4 with curative intent (where warranted), the small percentage might become a larger percentage.  Even if we don't achieve long term remission, more women are living longer than ever with this diagnosis thanks to more and more therapy options being made available.  Of course, every situation is different and we must decide what treatment is best for us and what we can tolerate.  I have accepted the fact that the likeliehood of my cancer returning is high and will be on Herceptin and living scan to scan for the foreseeable future, but I am grateful that my oncologist was willing to venture outside of the palliative "box" and agree to a more aggressive approach.  For myself, I refuse to be written off as another Stage 4 case whose fate is inevitable.  I have too much life left to live and don't intend to leave without a fight.

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Comments

  • Racy
    Racy Member Posts: 2,651
    edited October 2012

    Thank you for posting your story of hope. You have advocated well for yourself. I pray that you continue to have no evidence of disease.

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  • TallM
    TallM Member Posts: 1,596
    edited October 2012

    willscas-you are a fighter & the Drs can gues & estimate based on experience & studies but they don't always know or get it right. I'm glad you helped open their eyes & took notice of you & your situation. We do all deserve that chance to fight. Best of luck to you & thanks for posting. "Don't ever give up."

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  • HLB
    HLB Member Posts: 1,760
    edited October 2012

    Thank you for this post! You are right and I struggle with the term palliative. I know its not true, but it makes me feel written off. I think its wrong that some oncs simply wait for symptoms instead of doing TMs to catch mets sooner. I think they do it because oh well, we won't be cured anyway. May I ask what the difference in tx would be? I mean, what did he want to do before you convinced him to be aggressive?

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  • nanabolini
    nanabolini Member Posts: 61
    edited October 2012
    I am very interested in  your posting.  I had stage 1 breast cancer 3 years ago, had a lumpectomy, and 7 nodes removed (all were clean).  No other scans were done probably because it looked like they got it.  Now 3  years later after a recent CT scan and PET scan I learn I have tumors in liver, lung and bones.  I am offered pallative care, no treatment possible.  They don't know yet if cancer is matastic from the breast cancer and it seems unlikely? since it was contained at the time. You had cancer in the same organs -lung, liver and bones - found only a month after your surgery.  I wonder how advanced these cancers were.   Mine, I'm told are advanced,inoperable and incurable .  I'm thrilled for you and may those Pet scans remain clean.Smile
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  • HLB
    HLB Member Posts: 1,760
    edited October 2012

    Nana, I'm not sure why they think it seems unlikely to be breast cancer mets because it sounds to like its very likely to be that. If so, yes, it is not curable but certainly there are treatments that many of us live with for many years! Good luck to you. I am only a few months in to the mets and its so emotionally draining and devastating. It has gotten a bit better over time and hopefully will continue to. I wish the op would come back. She's right though, and if you're not satisfies with what the dr is saying get a 2nd opinion. There are many pple with extensive mets who get stable with tx and sometimes even NED for awhile. Don't give up. Good luck to you.

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  • willscas
    willscas Member Posts: 3
    edited October 2012

    HLB - I did not get far enough with my oncologist about her palliative chemotherapy plan to know precisely what drugs and what dose she would have started me on had I agreed to that plan, though I am pretty confident it would have been Herceptin paired with a taxane (Taxol or Taxotere) at a lower dose that what is normally given in the adjuvant setting. 

    Nanabolini - I agree with HLB about getting a second opinion.  If you haven't already, you might ask them about doing a biopsy to determine what type of cancer you are dealing with - that will confirm whether it is mets from breast cancer or something else.  It will also provide information about the nature of the cancer (especially if it is breast cancer) and help them tailor your treatment appropriately.  Breast cancer can change its nature when it spreads - mine did.  I was ER+ and PR+ from the pathology they did on my breast tumor, but when they biopsied the spread in my bones, it was ER- and PR-.  This affected my long term treatment options - the estrogen therapies, for example, won't be as effective for me.  Bottom line - don't give up and don't accept that there is nothing that can be done.  There are a number of therapies now available for metastatic patients and even if they can't put you in remission, they can potentially keep it at bay.  If your doctors aren't willing to go the distance with you, then find another doctor who will - they are out there.  Good luck. 

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  • nanabolini
    nanabolini Member Posts: 61
    edited October 2012

    willscas.  Thank you for responding.  Advice came at a signigicant time.  I'm due to go for a liver biopsy next week, and was thinking about not having it done.  I am already so sick it will be a challenge just to get there...which raises another question.  At the time you were diagnosed with mulitple cancers how were you doing?  Were you sick?  I believe I am beyond any curative help.  I have 3 liver lesions, 3  bone areas and a very large tumor in my lung which is cutting off air from my windpipe.  I am on oxygen all the time and increasingly can't move around.  I don't see any benefit of a biopsy (for me) except to inform the doctors at Roswell Park, a renown  cancer hospital.  I was encouraged by your post, but realize my prognosis may be very different.   

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  • HLB
    HLB Member Posts: 1,760
    edited October 2012

    Nana, sorry to hear about all of that. But I have read on this board that its not so much how many mets you have but its how they respond to tx. If they all respond, you could very well get some good time from a treatment. I don't know if you're interested in alternatives but I made a post in the complimentary forum about a lady I met with who was healed using herbal teas and alkaline diet. She was really bad off with a different type of cancer, but she has been well for 11 years and hasn't seen an onc for 5 years. You hear about people all the time who are written off by Drs and then are healed. Some people don't really believe in alt but I am encouraged by such stories and esp by being able to actually meet someone in person that it worked for.

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  • willscas
    willscas Member Posts: 3
    edited October 2012

    Nanbolini - I am very sorry to hear that you are suffering as you are.  You are right - I did not have symptoms at the time of my diagnosis.  The only noticible symptoms were shortness of breath and a dull ache in my lower back, so I was ill without significant symptoms.  However - I agree with HLB...it is how your cancer responds to treatment that makes a difference in the outcome, and your biopsy, should you choose to move forward with it, will tell the doctors what they need to know to prescribe the right treatment.  You might not be curable, but they could potentially ease your symptoms and give you more time.  Having said all that - cancer treatment is physically and emotionally draining as you know from your previous experience, so only you and your family can decide what course to take for your particular situation.  Just know that if you do choose to fight on, there is always hope.  Stay strong. 

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  • nanabolini
    nanabolini Member Posts: 61
    edited October 2012

    Thank you for repsonding.  I've decided to fight on despite the dismal outlook, started radiation yesterday and will start chemo next week.  The rad doc said MAYBE I could get some relief for breatheing (currently my left lung is completely collapsed) and that decided it for me.  At this point it is a challenge just to get there for the treatments and I almost gave up.  May you continue to have clean scans...Smile

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  • HLB
    HLB Member Posts: 1,760
    edited October 2012

    Good luck to you Nana. I hope this treatment gives you some time and relief :-)

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  • NaniAlice
    NaniAlice Member Posts: 49
    edited October 2012

    I just returned from the oncologist. I too, have a problem with the palliative care program. In fact a friend of mine was told she was terminal with stage VI. Fortunately my oncologist doesn't use these terms. She knows I am a fighter and I want the chance to fight. We never know what tomorrow brings, but why take away are hope today.

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited December 2012

    Got some scary news today...believed liver mets. Just had diep reconstruction in June and stage 2 recon in Nov (this after my 2nd diagnosis of bc) and now, routine 6 month scan showed many spots on liver.  My scan in June before diep was normal so they say fast growing and not curable. Brain & bone scan 12/26 w/biopsy the next week. I'm ER/PR and Her2+. I'm still healing from recon and I'm wondering how treatment will go.  When I went through chemo, rads, herceptin 3 years ago I was in good shape and handled it so well.  Now I'm worried about not feeling strong.  The onc also said this means a port for life..do you all have ports????  It's one thing I truly disliked (not that I liked any of it but you do what you have to do!).  Just want to LIVE!!!  Any info for me?  BC.org has been my salvation for 3 1/2 years!!!! 

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited December 2012

    I just realized my post was the first since October.  I will keep checking for updates on sisters, but maybe look for an up to date forum.  Love & prayers for all.

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