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Stage 4 Breast Cancer Survivor---Seeking encouragement and Hope

spoonchek's picture
spoonchek
Posts: 30
Joined: Nov 2009

I was just wondering if anyone knows of any positive, optimistic stories about women living with metastatic breast cancer (to bone)being treated with Herceptin and Zometa and living an actual life of some years. This is my situation and I am struggling not to feel as though my life is running out like an hourglass. I've heard a couple of stories about women surviving for some years on these treatments but I thought I'd throw it out here to see if anyone can provide some positive feedback on the subject.

I appreciate whatever anyone can offer as I'm having a very difficult time managing my way through each day without despair taking over and paralyzing me.

Teri

fauxma's picture
fauxma
Posts: 3531
Joined: Dec 2008

Teri
My heart goes out to you. I know that we have some Stage IV ladies that will be popping in and telling you how they are doing. It is so hard to just hear the word cancer and I can't imagine how I would feel if I heard stage 4 and mets.
But I have had several primary cancers and the way I cope is to try and enjoy each day as a gift. It works 99% of the time and they are a gift. For whatever time you might have, you want to relish it, live it, and make the very most of it. Follow your treatment plan and do whatever you can to help you through the despair. Because you want quality as much as you want quantity. None of us knows where these cancers will lead us or when we will die and as long as you are here you should be able to embrace your life, your time. I know that this is all easier said than done. You may want to work with a counsellor or therapist. And don't be afraid to ocassionally vent, rant, cry. This can also help to relieve the stress, the fear. But what you don't want is for this diagnosis to rob you of all the todays you still have ahead of you.
My prayers are being sent to you that you find peace and that our sisters here will share their positive and uplifting stories. I know that Kathi here has a inspiring story as do several others.
Stef

spoonchek's picture
spoonchek
Posts: 30
Joined: Nov 2009

Thank you so much for your words Stef as I read them and take them into my heart. Just joined this website today in search of connections and so you are my first and I'm very grateful. You are of course correct in focusing on my "todays" and not worrying about the quantity of "tomorrows" I have ahead of me....again as you said, a tough task at times. Thank you for your prayers and thoughts.

Teri

jennytwist
Posts: 711
Joined: Sep 2009

You've come to the right place for lots of love and sharing!
I know someone who has had your same diagnosis. She's been on various treatments over at least five years and is still doing fine! I know she goes on and off chemo at different times - when I found out about my BC she was there for me and encouraged me to come to her support group. As I live in a different town and am back to working full time I haven't visited her group yet.
It's OK to be overwhelmed, angry, sad, discouraged! Take any and all the help and support you can get! Stay positive - you'll find you can come here anytime and someone is always here to "listen" and give encouragment! We're all in this together! I'll keep you in my prayers!
-Jenny

spoonchek's picture
spoonchek
Posts: 30
Joined: Nov 2009

God Bless you for taking the time to reply and write your words.....It so helps to get a reply so compassionate and caring....I can't tell you how much I appreciate it as I've been struggling so much lately to get through each day.

New Flower
Posts: 3917
Joined: Aug 2009

welcome. Yes I have met several stage IV breast cancer survivors at the acupuncture training seminar.
I was surprised how optimistic and good-looking they were. I draw an inspirational example from knowing them. We have several ladies with similar diagnosis here as well. I hope they will respond to your post.
I myself have had stage IIIC and still recovering from my treatments.
Hugs

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Teri, just wanted to welcome you to the site. I don't have the same dx but am in the process of going through treatments now. I have completed my chemo and just started radiation. You will be glad you came here, this site is filled with compassionate, caring, supportive, and knowledgeable women, along with a few men. We're here for you 24/7. I'll send well wishes your way too!! Take care.

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

There are plenty of women who live many years with metastatic breast cancer, especially if the mets is to the bone alone. There are women on these boards who have been around for over a decade and more who are stable and live extremely full lives with mets. I totally understand that you feel so scared and despairing. Please post here and get to know these wonderful women. You are not alone.

Mimi

Sunrae's picture
Sunrae
Posts: 808
Joined: Oct 2009

Just wanted to welcome you to this site too. I don't have the same dx as you either. I'm fairly new here, recently diagnosed with 3 tumors in right breast and node involvement, on hormore therapy to reduce the tumors so I can have surgery. I'm sure you will find ladies here who have had a similar dx as yours. There are incredibly courageous and caring people here who really have the heart to help and support all of us. Sorry that you're going thru this. Please know that many people here are with you in your struggle and our prayers are with you. Hoping for better days soon for you.

m_azingrace
Posts: 399
Joined: Jul 2009

My DX was made in July. Stage 4, with mets to bone, so it seems we are on similar paths together. My oncologist is "cautiously optimistic" that I might look forward to years of continued health. What I have is a chronic disease that can be treated and managed. I'm on Femara and Zometa. I seem to be tolerating both well. Except for the cancer, I have no other health issues, so that's a real plus.
This is a terrific support system here, with many gracious ladies willing to be our gentle guides. Hugs to you. Gracie

Tux's picture
Tux
Posts: 541
Joined: Aug 2009

Welcome, Teri. I have not had the same dx as you, but I wanted to let you know that I am thinking of you & praying for you.

Hugs & prayers...

Booberta
Posts: 61
Joined: Aug 2009

Teri-I'm so glad you're here. I've heard great things about Zometa in terms of helping with the bone mets and oddly enough, my surgeon says that studies have shown that it helps to decrease the risk of bc recurrance. Everyone here is pulling for you.

If you want to tell us al little about yourself.

Best wishes

BELIEVEx3
Posts: 24
Joined: May 2009

Dear Teri,
Hope lives here on these pages for you and all of us..............YES I have heard of women living full happy lives with the chronicity of
metastatic breast cancer to the bone..It almost seem counterintuitive mets to the bone and life, but we have come so far with our treatments in the last several years........Do you have a close family member or friend to confide in?To hold your hand when you are afraid and feel like you cannot bare another moment??I hope that you do. If you do not, I pray that you find warmth and comfort here.

Please share your sadness with your Oncologist, sometimes they forget that we need just that one voice from someone that has survived before us....and is still alive. Recently I met a gal that has a sister with stage 4 and bone mets and has been treated for the last 2 years, sometimes including a bit of radiation. She is doing well and recently spent a week in New York shopping and enjoying the theater district........I have had several cancers and such a rare disease that I cannot bare not knowing anyone else with it, that is why I started posting lately. It gives me hope to hear the stories of such remarkable women. I pray this site does the same for you.
Believe!!

RE's picture
RE
Posts: 4606
Joined: Feb 2004

Hi Teri, I am a stage 4 survivor. My mets were not to the bone but to the chest wall and sentinel node. I got the stage 4 dx in 98 and am going strong. I had a recurrance in 07, had chemo and surgery and am doing well today. I live a full live with grandkids who love to play with me, we go camping and travel whenever possible. There is life to be lived and I believe you will get there. I am so glad you found us, you will find that this board is filled with loving caring people who have walked in your shoes and understand.

Hugs,

RE

roseann4
Posts: 994
Joined: Sep 2009

I know someone who has lived with Stage IV for 14 years. She has worked as a Nurse and has been able to continue for most of that time. A women in my support group has lived with Stage IV mets to her lungs for 7 years and is still going strong. She takes yoga once a week and her insturctor sais she is a star. She is in her early 70s! She volunteers her time giving support to chemo patients. I think the key to living with BC is having a full life for as long as we can. We must stay active and not allow fear to dominate of lives. No matter what stage cancer any of us is living with, the future is uncertain. It is also uncertain for everyone else but the difference is that we (bc survivors) know it. My goal is to make the most of each day and live in the now as much as possible. Not always easy!

You came to the right place. Do something nice for yourself today. You deserve it!

Roseann

LC815's picture
LC815
Posts: 155
Joined: Oct 2009

Dear Teri,

I just was diagnosed with metastatic breast cancer (liver mets) a month ago and am taking Arimidex after having my ovaries out. I feel just like you. Very desperate. Today is the first day of being on this board, and I feel a little better already. You're not alone.
HUGS,
Linda

natly15's picture
natly15
Posts: 1930
Joined: Sep 2009

Met a lady today at "Relay for Life" who is absolutely flourishing with Stage IV metastatic breast cancer. I believe she is a 4 year survivor, has a wonderful attitude, beautiful smile and a deep faith. There is a saying, and you will find it quoted on these boards again, " I have cancer, the cancer doesnt have me! I'm praying for you Spoonchek and LC815. Hugs to both you ladies.

LC815's picture
LC815
Posts: 155
Joined: Oct 2009

Thanks natly15 . . . I love the use of your word "flourishing." Teri, RE, a wonderful woman on these boards said something so wise to me (now, I hope I get it right): You are not a number or a statistic. You are Teri and therefore are unique. If you're like me, you get bogged down with the doom. Let's try to look for the light together!
xoxo
Linda

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

Dear Teri, So very sorry to read that you are so down. I can't imagine how difficult this for you. My heart breaks. I know I have read posts on here from others surviving stage four BC. The treatments are getting better and better. Stay strong my friend, we never know whats around the corner that will be the next miracle. Hugs, Eil

Jeanne D's picture
Jeanne D
Posts: 1867
Joined: Mar 2009

I am also so sorry to read this post from you. I will certainly keep you in my prayers! I have had bc twice now and go in next Wednesday to have 4 cysts removed to check. I am praying that they are benign. So, I know how scared you are, or, have some idea. Please take care!

Love, Jeanne ♥

JmG86
Posts: 53
Joined: Sep 2009

Teri,
I was diagnosed in 2003 with stage IV, mets to the bone. I have been living a normal, full, active life since. I have been treated with Zometa since 2003, and originally Femara but now Aromacin. I feel great. It's understandable your having a difficult time, but don't despair! I love the saying "You can't just sit around and wait for the storm to be over - you have to learn how to dance in the rain". So I choose to dance, and I choose to sing. I have my bad days, but I can't dwell there, that's a bad place to be. I think everyone has that hourglass - who knows how much sand anyone has left? I'm a klutz - I might fall out the front door tomorrow on my way to work, and that's all she wrote. You never know! But I'm going out that door, there's still so much to see and do. So I'll try not to let the storm scare me, I'll just look for the rainbow. It's there somewhere!

always's picture
always
Posts: 257
Joined: Oct 2009

welcome...even though I wish you never had to be here. I can not add anything to all you told above, but my prayers and good wishes. I love this site. I read the words of encouragemnet from my sisters in pink and I am so proud of them. They make my heart run over. May you find peace and encouragement here as I do continually. You are in my prayers.

becky

CypressCynthia's picture
CypressCynthia
Posts: 3874
Joined: Oct 2009

I had been in remission since 1987, but found out I had bone mets this past March. I am on arimidex and zometa and finished radiation. So far, so good. Let's hang in there together!

pinkflutterby's picture
pinkflutterby
Posts: 615
Joined: Jun 2009

Hi Teri: I was diagnosed with Stage IV with mets to my spine and liver on March 17, 2009. As of October 28, 2009 my breast and liver tumors no longer show in the petscan :) I am still on chemo as there are many tumors on my spine and now on my ribs. I also take Zometa once a month. I am still fairly new to all this so I would also love to hear more stories of ladies living life! I plan on being here for a LONG TIME. My onc also seems very optomistic and says she will treat me as if I have a chronic illness, which I guess I do since you are never cured of Stage IV cancer, I've been told, you live with stage IV cancer - so how about WE LIVE!!!! I am having a very positive day today, but there are many days mostly nights that I am sad, scared, angry and most of all worried about my children if this cancer takes me away from them so I totally understand your despair and we deserve to be scared. Please feel free to post or email me anytime.

My thoughts are with you, Libby

mariam_11_09's picture
mariam_11_09
Posts: 693
Joined: Nov 2009

I am sorry to hear about your condition. I have just been diagnosed and this is all new to me however I wanted to share a favourite poem that is all about just being right here right now with whatever you feel, no matter what it is ....

The Guest House

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.

Be grateful for whatever comes.
because each has been sent
as a guide from beyond.

-- Jelaluddin Rumi,
translation by Coleman Barks

always's picture
always
Posts: 257
Joined: Oct 2009

What a beautiful poem

spoonchek's picture
spoonchek
Posts: 30
Joined: Nov 2009

Just came back today to view my original entry and was so overwhelmed and touched by the responses to my post. From the bottom of my heart, thank you ALL for taking the time to reply to my post. Your comments--all of them--are like hugs to me and something that I cherish and hold very dear. It so helps to read that people are actually living lives in spite of this diagnosis. It seems so difficult many days to have any optimism whatsoever.

I have good friends but its difficult to share my experience with them as its non-ending having "chronic" cancer and I feel like they're exhausted from my situation and knowing how to respond. I find that communicating with others going thru this horrible experience is easier as I know that the other person truly understands.

I am taking one day at a time, praying for the strength to get through another day. My emotions are like a pin ball machine racing from one sad thought to another. I do see a therapist and am on anti depressants but it seems like its no match for my saddness and sometimes bleak outlook. I realize now that I need to visit this website far more often than I have as reading the entries makes me feel less alone. Again, thank you all for your words, they mean more to me than I can say.

ppurdin's picture
ppurdin
Posts: 935
Joined: Jul 2009

Hi,you have come to the right place to talk about how you feel.My faith and family keep me going.I will pray for you to have the streanth to get through this.I would call the American Cancer Society and they can have someone call you if you want.And we are always here on this sight if you need to talk.God Bless you.Love and Prayers.(Pat).

sweetvickid's picture
sweetvickid
Posts: 436
Joined: Nov 2009

Teri
I have no stories for you but I send my love and prayers to you. I am just starting my journey and my Mantra is, 'The will of God will never take you where the Grace of God will not protect you.'

spoonchek's picture
spoonchek
Posts: 30
Joined: Nov 2009

That is lovely and I will remember your Mantra. May God Bless you on your journey and my prayers and love will be with you as well.

K_J
Posts: 2
Joined: Nov 2009

... an amazing story. I live in Fayetteville, GA... I'm 42 years old, soon to be married 20 years and have two beautiful sons - 16 and 10. I was dx with Stage IV Invasive Ductal Carcinoma in February of this year... large tumor in my right breast (4 cm) and metastis to multiple lymph nodes in my right armpit, multiple lymph nodes behind my breast bone and into the bone of my sternum (3+ cm).

In March of this year I stopped eating meat, dairy and all sugars (fake or real)... I started exercising with a trainer to "build myself up" in preparation for the battle ahead (chemo, radiation etc). My doctors (Emory in Atlanta) said my best first line defense was to remove my ovaries, which we did in late April.

I've had no other chemical treatments (yet) and have had diagnostic PET scans every three months. My last one (Nov. 17th) showed no cancer in any of my lymph nodes or bone of my sternum. I'm down to only the original tumor which is now only 1.5 cm!

Doctors have great tools to help us battle this awful disease, but they can't be depended on to carry the whole fight! I just wanted you to know that YOU CAN conquer this monster! Think positive, believe in your own power to heal yourself and amazing things can happen.

I refuse to die because "that's what happens most of the time"... I'm going to throw everything I have at it. Some of the changes are hard, but not as hard as the thought of leaving my boys without a Mother!

I'm so grateful that we have this forum to love and support each other - you go girl!

Kathy

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

I like your spirit.

Mimi

LC815's picture
LC815
Posts: 155
Joined: Oct 2009

Kathy,

From another Stage IV sister, I say, "Thank you." You give us hope! What was the plan behind your dietary changes?

Peace.
Linda

K_J
Posts: 2
Joined: Nov 2009

Hi Linda... I can't believe I forgot to reference this...

When I was first dx... some friends of ours sent us the book "The China Study", by T. Colin Campbell... the entire book is devoted to how diet affects many different diseases, but cancer is a major theme. The book explains the research from the original "China Study"; we all continuously process carcinogens through our bodies and most of them luckily are flushed away... however, research has shown that animal protein we consume can "pull" the carcinogens into our cells and hold them there where they mutate, multiply and eventually become cancerous. The book does not actually call for a ban on animal protein, merely suggests that you hold animal protien to around 12% (double check my percentage). This serves several purposes; helping to keep your bodies oxygen level up (cancer does not thrive in highly oxygenated systems) and to keep your body in a more alkaline state (cancer thrives in an acidic environment and dies in an alkaline one).

Additionally, I have had my ovaries removed which my doctors credit with this remarkable turnaround... yet they believe the cancer will come back. These changes are changes I'm making to ensure that it NEVER comes back!

In addition to the book, I was fortunate to be referred to several "friends of friends" who've kicked this awful disease by changing their diets to include mostly raw fruits and vegetables. I guess all I can really say is "so far it's working for me". And continue to hope that it can work for EVERYONE!

I highly recommend reading this book and would love to hear from others who've experienced a turnaround based on natural therapies.

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

Thanks for referencing this book. I will get it, read it, and try to live it!

meena1's picture
meena1
Posts: 1005
Joined: Oct 2008

I am a 1 year and 4 months survivor of metastatic breast cancer (to bone). i completed Herceptin in July. I am currently receiving zometa every 4 weeks. I just had a Pet scan in October and there was no activity, so I am in remission now. I do not personally know anyone who has survived many years, but we can all live one day at a time. I believe that with the Herceptin and Zometa you will not have any problems, try and let go of the fear. My mantra is "I fought cancer, you cant scare me". Herceptin truely is a miracle drug and together with the zometa, you should do well. Take a deep breath, think positive. You will get through this, there is hope for you and me. You can PM me or post if you have any questions

spoonchek's picture
spoonchek
Posts: 30
Joined: Nov 2009

Hi Meena, Thanks very much for your words. Dealing with my fear is so difficult at times. I've got to work on keeping positive. Going for a PET scan in two days so wondering what will be the results. Very afraid of more bad news as that's all that seems to have come my way for the last couple of years. Congratulations on your Oct scan!!! That's wonderful....how often do you have scans?

Deb1969's picture
Deb1969
Posts: 165
Joined: Aug 2009

I was diagnosed with Breast CA with mets to my liver August of this year.I have had four rounds of AC, will start Taxol Dec 9th. I had a PET scan done early November due to pain I was having in my right side. Radiologist said this scan showed improvement from the last. I try to stay positive, but somedays it is hard.I come to the posts often for encouragement. Ill be praying for you. Keep us posted on your results.
Deb

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