Forum Discussion
Etta
9 years agoMember
Newly diagnosed bone & liver mets
hi everyone
i 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
i 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
17 Replies
- PamelamaryMemberEtta, 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 - SouthgirlMemberHi 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
- EttaMemberThank you everyone so so much for your thoughts and advice.
I see my oncologist next Thurs I will let you know what happens...
This forum is incredible I don't feel so alone love to all of you ❤️❤️❤️ - primekMemberI can only imagine how devastating this news is.
My sister has passed from metstatic breast cancer.
But I want to share her story. She was diagnosed in her 40s and lived to 60. She saw not only her children marry but have children. She even worked helping at the pre-school in the last 6 months of her life so they really did spend quality time with her.
None of that would have been possible without chemo.
All that was available for her tamoxifen and chemo. None if the new treatments available now. She did chemo 3 times.
Yes...she got tired.
Yes sometimes a little fed up.
But she packed so much life and love into her shortened life... and she has grew strong resilient children.
She assisted in helping her husband plan for a life without her...bought an ostrich farm. He misses her yes...but there he still is at 80 years old now still looking after it, a reason to get up every day and enjoy his life.
So yes...it does seem hard. But you have more living to do....You can always stop treatment if life doesn't feel worth it on chemo.
Kath x - HanksterMemberSorry for what you are going through. As said before only you can make the decision. My advice be informed the chemo may extend your life longer than you are ill with it. What ever you decide own it and live every day well. Sending virtual hugs and squeezing tight
- PiakMember
Hi Etta
I 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 day
being able to get out of bed
completing activities of daily living (washing and dressing)
eating and drinking without vomiting
I’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 treatments
my relationship with my doctor
my relationship with the rest of the medical team
my quality of life outside of my medical conditions
Many 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 cancer
It’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 thrive
Having 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.
- TennilleMemberI am 41 and was diagnosed with liver and bone mets (innumerable) in May this year. After some trial and error with treatment i have now completed my first cycle of Eribulin, which so far hasnt caused me too much grief. Hang in there, dont give up yet. Its not over.
- ScooperMemberHi 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 - jenaMemberHi @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 - melclarityMemberHey @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