Newly diagnosed bone & liver mets

Etta

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

Etta

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

[Deleted User]

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

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

@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

Hey @Etta, just sending you a huge hug. Xoxo

Brenda5

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

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

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

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

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

Tennille

I 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.

Piak

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.

  
  
  
  
  

  
  

Hankster

Sorry 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 

primek

I 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

Etta

Thank 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 ❤️❤️❤️