hi everyonei first had breast cancer in 2013. This week i found out I have bone & liver mets. I'm 45.I am petrified and lost and angry and scared and so so sad. But mostly completely heartbroken for my husband. My big question is: has anyone refused chemo? My instinct is to do live my life as well as I can be. I know how sick chemo makes you.And if I decide this how on earth do I explain this to my husband, family & friends?Any advice much welcomed thanks ❤️ x

Hey @etta You know, I was seriously considering refusing chemo when my cancer came back. At the moment my situation, as far as I know, is rather different because mine was a local recurrence which is, in theory, treatable. Mind you, all the palaver I went through in 2006 didn't seem to work, so...If it happens again, and it probably will, I'm telling all and sundry that I've run out of chemo options. If you tell people you are considering refusing the pressure is absolutely bloody relentless. As in it never, ever, stops. Everyone hopes that they will be the one who makes you 'see sense' and the smugness when you capitulate has seen me ditch two people who were part of my life for over twenty years.So, if that is your decision, and I can see why you will be considering it, tell no-one. Is that good advice, I don't know. But if you share your uncertainty you will be exposing yourself to a situation where many people think they know better. Think things through, take your time and make sure you truly have the strength of your convictions before you make up your mind.Good luck. Marg xxx

Hi EttaI found this article in Healthline, hope it helps.Piak How I Didn’t Let Cancer Stop Me from Thriving (All 9 Times) Written by Anna Renault on June 19, 2017 Anna Renault is a published author, public speaker, and radio show host. She’s also a cancer survivor, having had multiple bouts of cancer over the past 40 years. She’s also a mother and grandmother. When she’s not writing, she’s often found reading or spending time with family and friends. Surviving cancer is anything but easy. Doing it once may be the toughest thing you ever do. For those who’ve done it more than once, you know firsthand that it never gets easier. That’s because every cancer diagnosis is unique in its challenges. I know this because I’m an eight-time cancer survivor, and I’m once again battling cancer for the ninth time. I know that surviving cancer is amazing, but thriving with cancer is even better. And it’s possible. Learning to live while you feel like you’re dying is an extraordinary feat, and one that I’m committed to helping others accomplish. Here’s how I learned to thrive with cancer. Those three dreaded words When a doctor says, “You have cancer,” the world seems to turn upside down. Worry immediately sets in. You may find yourself overwhelmed by questions like: Will I need chemotherapy?Will I lose my hair?Will radiation hurt or burn?Will I need surgery?Will I still be able to work during treatment?Will I be able to take care of myself and my family?Will I die?I’ve heard those three scary words nine different times. And I admit, I asked myself these very questions. The first time I was so scared, I wasn’t sure I could drive home safely. I went into a four-day panic. But after that, I learned to accept the diagnosis, determined not only to survive but also thrive with my disease.What does surviving cancer mean?Google “surviving” and you’ll likely find this definition: “Continuing to live or exist, especially in the face of hardship.”Through my own cancer battles and in talking with those impacted by cancer, I’ve found that this word means many things to many people. When I asked what surviving means within the medical community, my doctor said surviving cancer meant: You’re still alive.You’re going through the steps from diagnosis to treatment.You have multiple options with the expectations of positive results.You’re striving for a cure.You aren’t expected to die.When speaking with fellow cancer warriors in my many times in the hospital waiting room, I found that they often had a different definition of what it meant to survive. To many, it simply meant: waking up each daybeing able to get out of bedcompleting activities of daily living (washing and dressing)eating and drinking without vomitingI’ve talked with hundreds of people undergoing treatment over the past 40 years in my journey with different bouts of cancer. The severity and type of cancer aside, I’ve found that my survival has also depended on factors beyond the disease itself, including: my treatmentsmy relationship with my doctormy relationship with the rest of the medical teammy quality of life outside of my medical conditionsMany people over the years have told me that surviving simply means not dying. Many said they never considered there was anything else to consider.It’s been a joy for me to discuss ways they could thrive. It’s been my pleasure to help them see that they could live a productive life. It’s been really awesome to convince them they’re allowed to be happy and experience joy while battling cancer.Thriving while dying from cancerIt’s an oxymoron to live while you die. But after eight successful cancer battles, I’m here to promise you that it’s more possible than you know. One critical way I’ve thrived through and in-between cancer diagnoses is by committing myself to my health and disease prevention.Over the years, knowing my body when it feels well has helped me identify when things aren’t right. Instead of wishing it away or ignoring my body’s signals for help, I act.I’m not a hypochondriac, but I know when to go to the doctor to be checked. And time and time again, it has proven to be my most fruitful tactic. In 2015, when I visited my oncologist to report severe new aches and pains, I suspected my cancer had returned.These weren’t the usual arthritis pains. I knew something was wrong. My doctor immediately ordered tests, which confirmed my suspicions.The diagnosis felt grim: metastatic breast cancer, which had spread to my bones. I started radiation immediately, followed by chemotherapy. It did the trick.My doctor said I would die before Christmas. Two years later, I’m living and thriving with cancer again.While I was told that this diagnosis has no cure, I haven’t given up hope or the will to fight and live a meaningful life. So, I went into thriving mode!I will continue to thriveHaving a purpose in life keeps me alive and determined to fight. It’s the bigger picture that keeps me focused through the hardships. I know it’s possible for anyone out there fighting the great fight.To you, I’d say: Find your calling. Stay committed. Lean on your support system. Find joy where you can.These are my mantras that help me live a great life every day and thrive: I will continue to write books.I will continue to interview interesting guests on my radio show.I will continue to write for my local paper.I will continue to learn all I can about options for metastatic breast cancer.I will attend conferences and support groups.I will help educate my caregivers about my needs.I will do whatever I can to advocate for people with cancer.I will mentor those who contact me for help.I will continue to hope for a cure.I will continue to pray, allowing my faith to carry me through.I will continue to feed my soul.And for as long as I can, I will continue to thrive. With or without cancer.

Hi Etta - even though you are filled with fear and uncertainty at the moment, try to keep an open mind until you see the oncologist and talk about treatment options. In many cases Metastatic Breast Cancer can be 'managed' for quite a while. My first breast cancer was 2005, and I was diagnosed with bone and lung mets in 2016 - I think the scariest time was the time between the mets diagnosis and seeing the oncologist. Have you ordered a Hope and Hurdles kit from BCNA? It has lots of helpful information - you can order it online or by phone. Thinking of you xx

Etta, it isn't surprising that you feel overwhelmed - it takes time to adjust to the reality of living with metastatic breast cancer. Treatment decisions should be yours only, but try to inform yourself of your options.I was diagnosed with bone and liver mets 5 1/2 years ago. I had chemo and hated it with a passion, but after 6 months my liver mets had shrunk to almost immeasurable and I have continued stable since on Tamoxifen and Herceptin. Very few side-effects. We live with uncertainty, but try to retain hope.Best wishes..... Pam

Ps I know it's 3:40am but I can't sleep any replies very much welcome x

Newly diagnosed bone & liver mets

Etta
Member
8 years ago
Ps I know it's 3:40am but I can't sleep any replies very much welcome x
Anonymous
8 years ago
Hi @Etta, hello from a fellow insomniac. Firstly, a big hug. I hope you're doing ok. Be kind to yourself, you must be in shock at the moment. There are women on here who have had to make the same decisions who would be more useful than me. I just wanted to say that I'm thinking of you. x
Zoffiel
Member
8 years ago
Hey @etta You know, I was seriously considering refusing chemo when my cancer came back. At the moment my situation, as far as I know, is rather different because mine was a local recurrence which is, in theory, treatable. Mind you, all the palaver I went through in 2006 didn't seem to work, so...

If it happens again, and it probably will, I'm telling all and sundry that I've run out of chemo options. If you tell people you are considering refusing the pressure is absolutely bloody relentless. As in it never, ever, stops. Everyone hopes that they will be the one who makes you 'see sense' and the smugness when you capitulate has seen me ditch two people who were part of my life for over twenty years.

So, if that is your decision, and I can see why you will be considering it, tell no-one. Is that good advice, I don't know. But if you share your uncertainty you will be exposing yourself to a situation where many people think they know better. Think things through, take your time and make sure you truly have the strength of your convictions before you make up your mind.

Good luck. Marg xxx
iserbrown
Member
8 years ago
@Etta
sorry to hear your dilemma! It is a personal choice as to how you want to roll with treatment. Have they indicated what affect treatment will have? I have a neighbour who made the same decision as you..........cancer returns, mets in liver, 9 years from original diagnosis and this was her third bout and she didn't want to fight it anymore!

There is a group on here that perhaps you should join and natter with others
http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

Perhaps talk with the BCNA counsellors as well as tel:1800500258

https://www.bcna.org.au/metastatic-breast-cancer/metastatic-breast-cancer-telephone-counselling/

Take care
socoda
Member
8 years ago
Hey @Etta, just sending you a huge hug. Xoxo
Brenda5
Member
8 years ago
There are some chemo's like the pill one that doesnt actually make you feel that sick. My dad did the whole 12 infusion thing and it didnt do a scrap of good but these pills he is on are keeping it at bay. He is 77 now and he is crazy outside lately gardening. He loves gardening and cooking. He just soldiers on and doesnt worry about mortality any more. Cannabis oil would be of benefit too although it still seems to be illegal and hard to get on script. Just sayin tho it will help.
HIT
Member
8 years ago
Hopefully you have been able to sleep by now. What has happened is what we are all scared of. Maybe more treatment won't be that bad and you can stop at any time. Keep the lines of communication open with your husband (and maybe kids) and don't worry about the rest.
melclarity
Member
8 years ago
Hey @Etta it's incredibly difficult, there just aren't any words, it is frightening...I don't have mets but had a recurrence at the 4yr mark and I remember it was incredibly devastating to deal with and so was the treatment. Did you have chemo at the last diagnosis? I just know this...NOBODY can make that decision for you and I agree with others, if you tell them..the opinions will fly. I was going to not do chemo and I had people say I HAVE TO DO IT, I HAVE TO DO IT FOR MY KIDS. My answer to that was...If I cannot do this for me?? I cannot do it for anyone else. It isn't selfish at all...this is about you nobody else. I'd discuss it with your Oncologist too and sift through your options. Big hugs...Melinda xo
jena
Member
8 years ago
Hi @Etta. I was also recently (1May this year) diagnosed with liver & bone mets. My spine and hips are riddled with the little buggers. I was honestly shocked as I was given the all clear by my oncologist in Feb! There were no indicators at all that I was in such a bad state, although I was feeling inexplicably unwell and had terrible back pain. I can't recall how many times I went to my doctor trying to figure out what the hell was wrong with me - I just wasn't myself.

I started chemo and had my first radiotherapy treatment within a week of being diagnosed. My liver is now clear, pain levels have improved no end and I feel so so much better than I did even 2 months ago.

I'm begin my 6th round of chemo next week - I'm on nab-Paclitaxel. I've really not been sick at all from it, other than high temperatures in the 4th month and feeling icky a few days after treatment. This drug is so much easier to handle than the chemo I was on in 2014 when I was first diagnosed with breast cancer. I do get tired but my energy levels have actually improved! I feel so so much better than I did when I was diagnosed and I believe I am really on the mend. I'm often being told by friends and family how much better I'm looking.

The efficacy of chemo drugs keeps improving and the side effects are getting less. There are support drugs if you need them to help you get through if you do decide to go down the treatment path.

I urge you to talk to your oncologist and other women who have taken the treatment option to be sure you have all the information available to make an informed decision.

We we are so terribly unlucky to get this disease. It's a total shit but we can keep on living good lives. Have you read 'Messages of hope and inspiration for women living with secondary breast cancer'?
https://www.bcna.org.au/media/2474/messages-of-hope-and-inspiration-brochure.pdf
It really helped me, especially in the first week of grappling with my diagnosis. I re-read some of the stories from time to time as they are truly inspirational

Sending you healing hugs and wish your all the very best support in your decision making process. jena
Scooper
Member
8 years ago
Hi Etta. I am sorry that you have been diagnosed with mets. It's a huge shock especially when you have already been through treatment. I was diagnosed in August 2015 de novo. I had a clear mammogram in January 2015. I had major surgery to my cervical spine, a lumpectomy and was put on letrozole which worked until earlier this year. I had another bout of radiation to my spine and then begun a trial at Peter Mac. I have just been taken off the trial as I have had progression with my liver mets. I have not had chemotherapy but will be beginning Xeloda next week. I am currently crippled with anxiety. I am petrified.
i understand your feelings 100%. You have been through it before. I think you need a little time to digest your news. Everyone has their different opinions on what you should and should not be doing. Do what is right for you, your husband and family. Sorry that is all I can offer you apart from my warmest wishes and love to you. Sandra xxx