DX stage 4- no aggressive treatment???

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dancingdiva
dancingdiva Member Posts: 475

i have just been dx with positive axial and intramamary lymph nodes in the contralateral side of original huge cancer 2 yrs ago. Had BMX. Pet scan shows no mets elsewhere.

So docs are treating this as chronic..it will eventually spread elsewhere and no aggressive treatment.

I don't get it. I feel like they're just making me wither away. No surgery, no rads ? !

Is this standard when it's discovered elsewhere

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2016

    dancingdiva,

    What is your proposed tx? I see that you are ER+, are anti-hormonals on the table? I have the same hormone profile as you. I have a single bone met. I have never had chemo, though I was offered the option, but chose rads (to the femur) and an AI. I have been NED for almost 5 years. Many women who are ER+ and have limited mets treat only with anti-hormonals and do very well.

    Examine your situation carefully and get a second opinion. This should help you feel confident with proposed tx, or go with a different tx. For me, chemo will always be there if needed and I don't believe that more is always better. Best wishes.

  • dancingdiva
    dancingdiva Member Posts: 475
    edited June 2016

    hi exbrnxgrl, he proposed Faslodex perhaps or something else and keep rads or chemo for later.

    What I don't get is if I had been stage 1 or 2 they wouldn't just treat a recurrence with an AI, they would do something more.

    Maybe it is psychological. I don't feel like this is enough. Faslodex isn't even an AI I think, but what he decides might change. He wanted to get an MRI but I couldn't have one cuz I still have TEs in.

    Happy to hear that the AI has been working for you. Hearing all these women on here just gives me hope.

    I'm still ER+ but the Pr changed to -

    D

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2016

    You are correct, Faslodex(fulvestrant) is not an AI but is used for post menopausal ER+ patients. Here's a quick run down on it:

    http://www.breastcancer.org/treatment/hormonal/erd...

    I know that many feel that they should be doing very aggressive tx and thensome, but since MBC is not curable (sorry, this is the sad reality), keeping it at bay, while maintaining quality of life is the goal. Are some "cured"? The estimates, though they may be outdated, put the cure rate at 1-2% and why this occurs is still unknown.

    I have had 5 years of a virtually normal life. Save for a few months after dx, I have continued to work at a job I love, travel, walked my younger dd down the aisle and seen the birth of two grandchildren. I've also lost my mother, seen my older dd separate from her husband, seen one of my children struggle with and overcome a serious eating disorder. In short, I have lived my life as fully as possible and have not had to deal with debilitating side effects (joint pain and stiffness ? Yes, but fairly easily managed). I will never know how things might have gone with more aggressive treatment, but I have no regrets about the course I chose. Both my primary and second opinion mo's outlined the pluses and minuses of anti-hormonals vs. chemo and left the choice up to me. As I said, I'm not a more is better kind of gal, so for me, less was the right choice.

    Caryn

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2016

    I want to emphasize, again, how valuable a second opinion was for me. It clarified and confirmed everything that my primary mo had outlined. It made me comfortable and confident with my course of tx, thereby removing lots of stress and "what ifs".

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited June 2016

    Hi DancingDiva,

    I know, less aggressive treatment for MBC is counter intuitive, especially for anyone who underwent aggressive treatment for primary/earlier stage breast cancer. It seems like the higher the stage, the more aggressive the treatment should be. And certainly to remove as much cancer from the body (via radiation and/or surgery) while hitting it with some heavy duty chemo. Why not go for NED (no evidence of disease)?

    Counter intuitive to switch from aggressive to low and slow treatment like anti-hormonal drugs for hormone positive MBC..yet that's the current state-of-the art except in a few cases (limited or oligometastatic disease, cancer that's affecting the function of a vital organ or the patient's life). But NED is just one goal and if the effect of anti-hormonal treatment (disease control) is the same as the effect of more aggressive treatment, it makes sense to avoid greater treatment toxicities.

    We in forum 8 typically compare living with mets to a marathon, after the sprint of treatment for earlier stage disease. I know that those with earlier stage disease who had surgery, radiation, chemotherapy, reconstruction and years of tamoxifen and/or aromatase inhibitors don't consider their treatment a sprint - but it is relative to living with mets.

    I've changed the metaphor to an obstacle course, because of the changing and challenging nature of managing both treatment choices and side effects plus disease symptoms. I'm constantly strategizing with my oncologist and we're always learning something new after 24 years together.

    For some folks, it's possible to live long and well and to avoid more aggressive treatments.

    I hope you are in that category and enjoy both a good quality of life and confidence that you're getting good care.

    The thread below examines current MBC treatment options. The combination of faslodex/fulvestrant with and AI for those newly diagnosed with MBC is a fairly new recommendation and may be worth exploring with your oncologist.

    https://community.breastcancer.org/forum/8/topics/...

    well wishing, Stephanie

  • Heidihill
    Heidihill Member Posts: 5,476
    edited June 2016

    I would seek a second opinion. Contralateral lymph node metastasis is maybe not really distant metastasis. In this sense a curative approach may be appropriate, particularly if it was spread through the lymphatic system and not through the bloodstream.

  • zarovka
    zarovka Member Posts: 3,607
    edited June 2016

    The main purpose of aggressive treatments (radiation, surgery, chemo) are to stop or prevent metastasis. They don't treat metastatic cancer with those "aggressive treatments" because the cancer has already metastasized.

    I believe in functional medicine, where you at least try not to undermine the body's ability to fight the cancer. I nearly fell off my chair when my medical oncologist told me that I wasn't going to get the aggressive treatments. I was expecting to get into a debate. However, once you are stage four, they are trying to minimize symptoms and keep you healthy. I felt scared and blessed simultaneously once it sunk in.

    Once I understood what I can do to fight cancer with good clean living (stress reduction, diet and exercise), my gut feeling was that I was better off avoiding treatments that would weaken my body and sap my strength.

    One detailed study of "everything else you can do" is Anti-Cancer a New Way of Life.

    I agree that metastasis may not be clear in your case. (have they done a full body CT scan and bone scan)? It is very important to get the diagnostics right to correctly determine stage. These forums are full of stories of having been incorrectly staged. But even if I was stage III, I would consider avoiding the surgery/chemo/radiation thing if my doctor can offer a reasonable alternative. There may be options.

    >Z<


  • cive
    cive Member Posts: 709
    edited June 2016

    My MO told me chemo like I had the first time (ACT) wouldn't work because my mets would be immune to it since it didn't kill them the first time. I am on Femara only, although I was offered Ibrance. Should I change my mind, it will still be in my arsenal.

  • pajim
    pajim Member Posts: 2,785
    edited June 2016

    DancingDiva, what you describe sounds like a "regional recurrence". NOT mets. In theory that means cure is possible. I don't know the exact definition of "mets" but axillary nodes would definitely be considered regional if they were on the same side as the original tumor. Other side??? I would third the idea of a second opinion.

  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited June 2016

    Fourth! You need an aggressive ocologist who will fight for you and not against you!

  • dancingdiva
    dancingdiva Member Posts: 475
    edited June 2016

    omg, thank u for all ur responses. I don't know what I would do without these forums filled with women (mostly) so I guess people who have so much knowledge.

    All I've done is a petscan that showed axillary and intramamary nodes on the opposite side. Intramamary nodes are supposed to be in breast tissue, since I have a BMX this is like whaaat???? The little that was left I guess.

    I was sent for an MRI last wk and good thing about p I asked the tech about the magnets in TEs or else I would have been undergoing the exam with my TEs trying to move and magnets trying to come out of my body. I was mad!

  • bears9
    bears9 Member Posts: 1
    edited July 2016

    I agree, get a second opinion at a comprehensive cancer center. A locoregional recurrence (which sounds like what you have) is not considered Stage IV by most oncologists. My daughter, 25, had a recurrence in her skin, axillary lymph node, and supraclavicular lymph node on the opposite side and they are treating her with systematic chemo. (She is TN though so treatment might be different.) Although chances are much higher that it will spread, right now they are considering this curable. Hang in there and fight!

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