To HAVE treatment or NOT

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Odette130672
Odette130672 Member Posts: 10
edited February 2018 in Stage IV/Metastatic Breast Cancer ONLY

Dear Metastatic Breast Cancer Members,

The most important decision of my life needs to be made within the next week and I seek your thoughts and honest opinions please.

Just before my 37th birthday 8 years ago I was diagnosed with invasive lobular cancer to my right breast. Unfortunately from misdiagnosis over a 6 month period by the time I was properly diagnosed I had a 5 centimetre in diameter breast tumour with 5 smaller tumours in the right breast that had also spread to my lymph nodes. Based on this misdiagnosis I was informed that I had a high chance of reoccurrence and so two and a half years ago my cancer did unfortunately return.

Fast forward to today, after 12 cancer related surgeries and numerous treatments I find myself in a position where I need to make the most important decision of my life and I need your honest raw opinions please.

My breast cancer is in my bones, gallbladder (which had to be removed) liver and is now metastasising in my skin very quickly. At today's count I have 28 small breast cancer lumps that are on my body. A new one is coming up each day.

I have been informed by my oncologist today that there is one remaining treatment available to me, which is again going through IV chemo therapy through a port in my chest. Upon questioning my beautiful oncologist at lendemanding the most honest answers he can provide I established the following:

With or without treatment it is highly likely that I will only have 12 months left.

There is no evidence to guide or compare that if I have IV chemo therapy that it will give me more time.

My husband who I have been with for 28 years has left me and in order for me to enjoy life to the full I must sell our home within the next 3 months.

There are a lot of things I still want to tick off the bucket list and I want to have quality of life for the rest of my time.

I want to experience another man, I want to dance until the sun comes up, I want to look and feel sexy and not feel and look like a sick cancer patient. I want to live like I'm dying tomorrow.

A decision needs to be made, so I ask my cancer friends, WHAT WOULD YOU DO?

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  • Maaaki
    Maaaki Member Posts: 110
    edited February 2018

    Did you try imunoterapy? In Europe (Germany and Austria) there are some centers where they combine hypertermia and imunotherapy with very good results. Especially skin mets can be treated localy with hypertermia and very low dose radiation at University of Freiburg. And the most important is that you will not feel bad like with chem

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  • Odette130672
    Odette130672 Member Posts: 10
    edited February 2018

    Hi Maaaki,

    I found a researticle recently in relation to the treatment you have mentioned. Unfortunately this is not currently available in Australia so I would have to travel to Europe as a private patient which would be at my own expense and I’m sure you can imagine the costs associated with that. It’s not viably possible for me unfortunately.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited February 2018

    Odette, I'm sorry to learn of the progression of your disease to this point. I have not walked in your shoes except for the part of dealing with mbc. Just not to the extent that you find yourself now. It sucks, and that husband thing sucks, too.

    It sounds like a part of your spirit is telling you go for broke. Lose the house, say no to chemo and say yes to whatever remaining months of feeling reasonably okay you have to do those things which you want.

    As women, we are often taught to "do the right thing". " Follow the rules". "Listen to the doctors". We are taught, "someone else knows better than you. Someone else has the right answers."

    You don't need our permission to do what you want to do. You don't need anyone else's okay. If you can accept the consequences of saying no to further chemo, and if that is the direction in which you are inclined to go, then make.no.apologies. Call it going rogue, call it being a maverick. It may be scary. It may be freeing. If you make your mind up that this is what you want to do, don't let society's idea of preserving "life" define you.

    I wish you the best in your decision making.

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  • Maaaki
    Maaaki Member Posts: 110
    edited February 2018

    Dear Odette,

    I wish you all the best with your decision. Do what you feel like doing. I am researcher and I believed in chemo. I did it at the beginnig at stage 1 with no lymph node involvement and it did came back anyway. For some it can work and for some not. Did you try some alternatives? Such as Intravenous C? Or ulipristate acetate? Or CBD? Google it, it Can be helpful

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2018

    Odette,

    There's not enough information for me to chime in. What is your tumor pathology? What treatments have you been on? What IV chemo is your MO recommending?

    Without knowing any of these things, my advice is to get a second opinion. That 12 month time stamp is an opinion. I mean, it's a trained opinion, but no oncologist has a crystal ball. IV chemo isn't scary - I've been on four, and have had pretty good quality of life.

    So, what I would do is to get the second opinion, fire up the new treatment (knowing full well that I could stop it if I don't like it), block my husband's phone number and get a divorce so that my funds are unencumbered, sell the house and rent the cutest single lady studio apartment I could get my hands on, and go out and do all the things I've wanted to do: travel, meet new people (maybe a cruise?), and let everyone know that I am looking for a partner in fun.

    Don't let the port bum you out. I love mine. It makes IV access so much easier, and you can use both hands during treatment. I'm a knitter, so that's big news for me.

    Despite everything I've waffled on about here, this is your life and your decision. You probably know in your heart what you want to do. For example, you've read this and thought "What twaddle!" - and the decision making becomes clearer!

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  • Husband11
    Husband11 Member Posts: 2,264
    edited February 2018

    As quality of life is obviously very important, I would discuss with your oncologist the treatment options that afford the best quality of life. If the cancer is hormone receptor positive, then consider endocrine based therapies such as aromatase inhibitors, selective estrogen receptor modulators or downgraders, ibrance and other cdk 4/6 inhibitors. Also, some oral chemo's such as xeloda carry less side effects than IV chemos. If your life is not immediately at threat, then you can decide if it is worth the risk of trying less disruptive therapies first.

    One of the ladies on here, Bestbird, put together a very comprehensive stage IV treatment guide. It covers most if not all the main stream options. It is worth reviewing. I believe you need to email her to request a copy.

    See this post for the details:

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


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  • pajim
    pajim Member Posts: 2,785
    edited February 2018

    Odette, my advice is a combination of what DivineMrsM and blainejennifer have to say.

    First, if you choose to start the chemo, you are not required to keep doing it. You can have one dose and say no more. You can say no more at any time. Including now.

    Which leads me to agree with DivineMrsM. Whatever you choose, do not worry about what other people think. The ladies on this site tend to be well-educated about their cancers and know all the possible treatments. So we tend to be on the "treat" side.

    What would I do? I've already decided that I'm not treating until the end. If my research satisfies me that there really is only the one treatment left and it is indeed not going to last me long, I'm not doing it. Time to stop and have a good time with the rest of my life. BUT. A second opinion (and some serious research) is a good idea.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited February 2018

    I think about a situation like yours every so often. If I do find myself in that position I would either explore immune system treatments in Europe or take any medication here in the US that helps my QOL. I would want to feel as good and comfortable as I could and enjoy the time I have left. I wish you the very best.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2018

    I agree with all the ladies esp not listening to what other people think or say. It’s your life not their’s.

    I know several people who had to make the same call. They chose not to continue treatments. They too were given an expiration date but they both lived longer than that date.

    It’s a tough decision and I’m truly sorry you have to make it. BC is such an insidious disease. You have suffered so. I thought about your dilemma and decided if it was me I wouldn’t continue treatments if it meant I would be suffering just to prolong my life a few months. But that’s me.

    A second opinion might be something to pursue. Couldn’t hurt. Oh and by the way I hope your husband gets it back in spades for leaving you. What goes around comes around.

    Sending prayers your way.

    Diane

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2018

    Godspeed to a quality of life that you can do something with. But what to do - I don't know, I just don't know.

    Diane

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  • Odette130672
    Odette130672 Member Posts: 10
    edited February 2018

    Thank you my newly acquired beautiful metastatic cancer friends. I really really appreciate the replies and the raw honesty you have all provided.

    A few of you asked what treatments I have had so far, so I asked my metastatic breast nurse to provide this information to me so I could respond accurately. Please note that this treatment has occurred only in the last 2 1/2 years, previous to this treatment I’ve had 12 surgeries, which included a lumpectomy, breast conserving surgery to find safe margins, of which there weren’t. Mastectomy, hysterectomy, nearly died from golden staphylococcus, 6 months of aggressive chemotherapy, radiotherapy, diep tram flap surgery, god the list goes on. For this forum though these are the treatments over the last two odd years:

    April 2015 Letrozole(Femara) hormonal therapy

    March 2016 Exemestane (Aromasin)- hormonal therapy

    April 2017 Capecitabine(Xeloda) – chemotherapy tablets

    November 2017 Cyclophosphamide/Methotrexate -chemotherapy tablets plus Faslodex Injections –hormonal therapy

    Ongoing monthly Denosumab (Xgeva) injection for bone metastasises.......

    I’ve made my decision. What sealed the deal is today’s chance meeting .....

    For the first time ever (its as though something was sending me a sign/message) I got into a lift at my hospital to attend an appointment, the lift was full, but I noticed a lady similar in age to me, standing next to her mother. She had no hair, looking very unwell (like we have all experienced) with a port on her chest and the surrounding area so inflamed and sore. We exited the lift on the same level and I pulled her aside and told her my story, seeking some form of honesty from her current situation to help me in my decisions.

    This beautiful lady has the same cancer as us, she had her port put in 3 weeks ago, during the last 3 weeks she has spent 7 days in hospital fighting infections and feeling extremely sick.

    She too has been told that her treatment may not even give her 1 more day in this world, however, she has a 4 and 6 year old. If she didn’t, if her babies were older, then she wouldn’t be putting herself through this suffering she said

    Many may think I’m giving up, but I’m not. I want to live my life, as I always have, to the fullest. How can I possibly do that when I am poisoning my body with no guarantee that it is even going to give me 1 more day. My best friend Steven wrote to me today, it’s very profound:

    Darling Odette, I am reminded of my favourite saying " life is a banquet and most poor suckers are starving to death"

    I am also reminded of Julia Roberts in Steel Magnolias, "momma, I'd rather have 30 seconds of something wonderful than a lifetime of nothing special"

    I expected your decision, and I'm proud of you for choosing to live rather than exist, and be a person LIVING with Cancer and not a person DYING from Cancer. Take away the disease's power over you and your life and then you truly have won the war! Love always XxS

    I know this is so emotional for everyone on this site, but you are the only ones that can understand what I’m going through.

    I value and encourage any comments, both negative and positive from you. After all, if we can’t say it how it is after living with metastatic cancer, then we will never be able to!

    Love odette x

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  • Odette130672
    Odette130672 Member Posts: 10
    edited February 2018

    I know Diane it’s a decision none of us should have to face

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  • Odette130672
    Odette130672 Member Posts: 10
    edited February 2018

    A beautifully written response. Thank you so much. I’ve made my decision. You will see it in this chat. Thank you and I wish you absolute peace and health as long as possible xx

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  • Odette130672
    Odette130672 Member Posts: 10
    edited February 2018

    xxx none of us d

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  • Odette130672
    Odette130672 Member Posts: 10
    edited February 2018

    I truly appreciate your honesty. Thank you so much xxx

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  • Odette130672
    Odette130672 Member Posts: 10
    edited February 2018

    Pajim- thank you. I thank all of you for responding to this very difficult question. There is no right or wrong answer is there, it’s about how much more you can take and how your remaining time left will be. Xxx

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  • Happy2Be
    Happy2Be Member Posts: 3
    edited February 2018

    Hello ladies :)

    My sister-in-law and I both have had a recurrence of our breast cancers. I don't know what she plans to do yet but I plan to just live my life as fully as I can until the end. I worked in TRAUMA Units all my life and saw so much suffering that it made me decide not to fight the inevitable. I salute those with the energy and ambition to fight this. I really do. I am just not of that thinking. My heart goes out to the younger ladies with small children who really do not have a choice but to treat bc and suffer the physical and emotional consequences. My gawd how awful!. The love on these boards is palpable and I will be watching. We all need love and acceptance no matter what our decision is even if it is not the popular one. I am an upbeat happy extremely affectionate person and will be a loss to the world when I go but, we all go. I would value hearing from others who have decided to do no tx and how they are fairing. I am curious but not too afraid. It is after all a natural process that I just observed my father do in September. He had no tx and went very peacefully with my care and the help of hospice which was wonderful. He never knew he was sick until the day before he died. He had esophageal and stomach mets. I hope to pass with as much grace as he did. I have a wonderful partner who fears my death and I do not know how to help him. I am rather blase about this and act normally (???) so it is possible for him to forget it is happening for a little bit of time to time. I don't discuss it. I just came to these boards and started reading yesterday. I salute the bravery here. I feel I am brave too just in a different way. Any opinions are welcome as I do not pretend to know what is best for each individual. I love and care for you all. Each of you hang in there with what you are experiencing and know that your words heal the soul that is the ultimate survivor.


    Love

    Happy2Be



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  • Odette130672
    Odette130672 Member Posts: 10
    edited February 2018

    A MESSAGE FROM MY DARLING FRIEND

    Darling Odette, I am reminded of my favourite saying " life is a banquet and most poor suckers are starving to death"

    I am also reminded of Julia Roberts in Steel Magnolias, "momma, I'd rather have 30 seconds of something wonderful than a lifetime of nothing special"

    I expected your decision, and I'm proud of you for choosing to live rather than exist, and be a person LIVING with Cancer and not a person DYING from Cancer. Take away the disease's power over you and your life and then you truly have won the war! Love always XxS

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  • Cloudygarden
    Cloudygarden Member Posts: 10
    edited February 2018


    Odette, Thanks for sharing your thoughts, decisions & beautiful words from friend. Wishing you peace, sun, and gentle days. I am facing my decision days after a new spine lesion on MRI. But for now I rest and enjoy each day, later I will decide.

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