What does Stage IV mean?

RobynK

Being recently diagnosed with Stage IV, bone mets, after 6 years NED (original dx of Stage IIIc), Im having a hard time grasping what this now means.   Do I quit my job, clean out closets, drawers and all my belongings that I've neglected to do while fighting cancer the 1st time around?  Does Stage IV mean I should prepare to die?  Am I living in denial because I have to ask this question?  When I confronted my Onc with a prognosis he sat back and said...well...nobody can say but based on what I know I say 6 months to 5+ years.  How does one take this?  What does Stage IV really mean?  My Onc said that instead of kicking cancers butt we have to learn to live with it.  I don't want to live with cancer, but I want to live.  How do you plan a future not really knowing what your "future" is?   I know that nobody knows, everything can change with a blink of an eye.  With or without cancer, you can be gone tomorrow.  BUT...knowing your Stage IV how do you cope with the day to day living? I just started having dreams about having to tell my family of this new development and in my dreams I'm always saying goodbye.  Like I just don't know when I'll get to be with them again.  Everyone says that once I get treatment going It'll be easier.  How do you tell your loved ones about your condition, when you aren't sure of what it means yourself?  I'm sorry for rambling, I just had to let it out!  My husband and my boss/coworkers all know of my condition but my daughter doesn't nor do my parents or siblings or inlaws. Thanks for providing me a place to ramble....I hope I haven't offended anyone, my apologies if I have.  I just wanted to get some wise words from those that know that I'm just trying to grasp this whole Stage IV thing.

lovinmomma

I am just 6 months into the Stage 4 thing and I am planning on living for a long time. A very wise person told me that only God knows our expiration date. That is how I am living. Yes I have made some changes. I am aware that my days are numbered and letting things slide. I am hugging my kids and dh more. I will be taking a trip with the family in the next few years, depending on finances. I am applying for my advanced death benefits with my life insurance to do mare for my family.

One thing I can do (now that I am more aware of time constrictions) is starting a journal for my kids and writing them letters. I still plan on being around until my youngest (who is 5) graduates from college, gets married and has kids! I am not planning on checking out soon.

heatherpalmerton

Robyn, Ramble away it's okay. It has just been over a year for me. It is a hard thing to grasp and yes it really does suck.  I like Kimberly, plan to live a long time.  We never know what our future will bring. I have chosen to fight this with everything I've got.  I also have scleroderma. Have had it over 11 years. If you were to listen on the stats of this disease I should not be here today. I have begun to declutter which I should have done a long time ago. Just because it is so freeing. As the saying goes "less is more"

Do you only have bone mets? from what they told me bone mets are very treatable. I also have been told we are treated as chronic.   There will be more ladies soon with more wonderful advice. Heather

Reneepals

Robyn,

Its really difficult to get a grasp on reality when first dx'd. But you do...... It will happen. I am still working and will keep on working until whenever. Not gonna lie its really weird to say the least being stage 4. Some days I feel awesome ,no pain, barely think about the cancer. But on days like today, I have arthritis like pain for whatever reason and I get panicky about being Stage 4 and thinking is the treatment still working? This totally sucks for all of us, I hate cancer period. But God is able, like Steph/Tripneg states. I have Faith that a cure is coming, but cmon already. You have the Lord and us that's for sure. I am so sorry if I am being a little funky.... But living with breast cancer is doable, don't get discouraged...

Fitztwins

I am 9 months into Stage IV. I was a stage IIIC. I just knew it was coming back. I had 3 years.

It is a new normal. I don't believe that good attitude will get you through. I believe that we should take all the meds we can to cope (anti depressants, pain meds and sleep aids!). I think that we need to take our good days and run with them.

I believe that a good scream cry in the shower is very cleansing.

I believe that we need to be engaged with everything our doctors want to do.

I have HOPE for a future, I am preparing for the alternative. Do I walk around all depressed and sad? HELL NO! I try to live like a normal person. I refuse to let cancer be my life.

I hold on to all of the positive stories.

I must tell you that I sit next to a 15 BC survivor during chemo. She is a 10 year metster and had brain mets 5 years ago!! She is stable and doing great!!!!! She is my hero. I am going to be like her. That is my plan.

Another thing that I did was start a carepages (or caring bridge). I invited all my family and friends to read it. I talk about my treatments, my fears, etc...It is the easiest way to let them know what is going on. Because lord knows we don't want to talk about it over and over.

My kids are my biggest sadness.

A think a lot of the time I just try to live in the land of denial. LIke someone else said on this board. Everyone likes to say, you could be hit by a bus tomorrow. The problem living with terminal cancer is that we are standing in the middle of the road and we can see that damn bus coming.

Siblings? I know that all of my siblings are heartbroken for me. I really thought I would not be the first one to go. What I do know is that they love me and my honestly about what is going on, will make it easier on them.

My husband? I will save that for another time.

Honey, this is a long hard road. You didn't offend anyone. We are hear to talk about crap like this. I just posted about living scan to scan, and how I can't decide to buy a dress for myself or new work clothes...until I know I will still be working over the next year...

There is 401Ks, retirement, insurance, planning, etc.. that we think about.

So for now just take it one day at a time. Easier to digest that way.

Hang in,

Janis

Crystalady

Hi Robyn,

Janis has really covered it. I found out 4 months ago, on the 10th anniversary of my original BC that I was Stage 4. That really sucked. I had arranged a great night out. 

I am normally a very strong person (that's what everyone tells me), but it is very easy to get down in the dumps. I sacked my original Onc because he kept telling me that if I got secondaries I was going to die. I now have a wonderful young Female Onc who hasn't said the word Terminal once.

We have a chronic disease that hopefully they will find a cure for very soon. We just have to stay alive long enough to be able to access it.

I've read so many articles on these forums about journals, letters, preparing for finalities etc., but one thing I've decided to do is to indulge in something that will bring me a lot of joy.

I have a chest full of clothes I haven't worn in ages.I'm going to give them to the Salvos and I'm going shopping for Baby clothes for any Grandchildren that my kids will have. I might add that none of them appear interested at this point of time. I don't know about you, but time just seems to fly whenever I'm in a baby store trying to find a present for someone. I just love Baby clothes. Who knows, I might even be lucky enough to give them myself, but if I'm not then my daughter can disperse them for me.

The other thing I wanted to say is to stay on top of the pain if you have any. It makes a big difference to be able to cope.I take one that lasts 12 hours.

I get very depressed at times and intend talking to my Onc about it next week. Another doctor suggested anti-depressants. 

Like Janis, I intend to try to claim on insurance to organize better now so I can be ready in case things get worse.

My kids ( although they are adults now) are my strength. I told them when I found out, but only recently told my elderly mother. It turns out she had an idea something was wrong anyway and now is very supportive also.

You're probably sick to death of people telling you to be Positive. I used to love that word...a long time ago. Now I just say to anyone in my situation to be nice to yourself and make reachable goals. Try to have a laugh every day.

These forums give a lot of support and knowledge. Knowledge is Power.

mason204

Robyn, you've put what I've always been thinking into words so eloquently.

I also agree with what everyone here has written.  Personally, as best as I can, I try to live my life the way I would have if I didn't have cancer.  I try to keep it as normal as possible for my kids.  I may indulge a little more on my kids and myself.  I'm going to an overnight spa tomorrow and although, financially, I might not have done it pre-cancer, we'll manage so I'm going.  I still make plans.  I still have goals.  I don't make futuristic plans anymore (where I'm going to live when I retire) but I'm not going to stop planning for the future.

I was told grudgingly by my oncologist years ago that my prognosis with mets was 2-3 years.  It'll be 3 years this August.  Yeah, I'm' worried that I could have 5 months.  But I'm going to keep on plugging away at it to ensure that I'm still here when that date comes. 

Don't give up on your dreams yet.  Even in the almost 3 years that have passed, I've had quite a few dreams come true that I wouldn't have expected to see.

denise1962

Robyn

Janis and everyone has said what I would have told you. It does vary day to day the feelings that come and go, but as someone else said on these boards is IT IS ALL ABOUT YOU NOW that is the best advice I can say. You might not be ready to use those words,but at some point it will cross your mind. There are never any wrong questions to ask. These boards have given my so much support. A saturday afternoon hug is coming your way.

Denise

dreamwriter

I have been stage 4 for over 3 yrs.  I was originally dx with 6-9 mos due to spine mets, lung mets. liver met and bi-lateral pleural effusion.  I had the flu, pnumonia, collapsed lung... and I am still here.... I was diagnosed Dec 20, 2005 and diagnosed stage 4 January 20ish, 2006.  And right now I am fairly stable... a couple new tumours and pneumonia, and UTI to put me in hospital... but Im good, and will stay this road for some time.... no intensions of invoking my Living Will yet.

RobynK

Thank you all for responding. You have all given me food for thought.  I can't begin to thank you for your wise words.  Cancer sucks plain and simple. 

lovinmomma:  I will remember that only God knows our expiration date.thank you!

heatherpalm:  Less is MORE!  Thank you for reminding me of that! 

Reneepals:  Living with cancer has to be do-able.  I will try and not get discouraged.

Fitztwins:  I do cry in the shower where nobody can see me.  I will try and take it one day at a time....I just hate surprises and love to plan and cancer doesn't let me do that!  I have to learn to live in "today".  Thank you!

Crystalady:  As a family we laugh alot.  Humor is medicine and I totally agree...knowledge is power!!

mason204:  My kid is what helps me get through it all.   She makes me stronger.  I say we all beat the statistics and tell those people that make up those numbers to put em where the sun doesn't shine!  *GRIN*  Thanks for reminding me that dreams still can come true...

Denise1962-  I have to say that I was born in 1962....a very good year!   It's never been all about me and I can't imagine cancer changing that.  Guess that's something I have to work on or at least feel comfortable with.  Time will tell. Thanks for the Saturday afternoon hug!  I needed that!

dreamwriter:  You are an inspiration.  Thank you.

Gg08:  I would have to start some sort of binder as well as my hubby has never handled any of the bills/finances in 20+ years we've been together!

Thank you all for helping me understand what it means to be Stage 4.  No better way to understand this than from those that live it.  I'm sorry we all have to deal with this but glad there is a place where we can feel we're not alone in our thoughts or fears.  Thank you!!

saint

Hugs, RobynK! I think the first thing we do is cry......do what YOU need to do. No matter what anyone tells you, you will process this in your own time & your own way. But know this:

In the middle of the nite our imaginations will take us far worse places than the reality ever will.......hang tight! 

There are MANY stage IV sisters posting who have been walking this road for years. As your onc said; living with metastatic cancer is do-able! It will be 5 years for me next month! We are here & plan to stay for a long time......we walk the road together!

Be well & stay strong 

Dee2810

Hi!! Think your reply was an inspiration! Very much how I feel though as I'm new to this.. told in feb re multiple mets.. posted details... actually said to doc at time.. 'even if you give me your best average prognosis what am I gonna do with it? I'm a mum and I have a charmed life so I'm gonna ignore it...' but have to prod myself to ensure it's not a denial thing... but it isn't is it? just a determination purpose and will to live eh?! Am so fighting to get my energy back from WBR though at the mo and get really frustrated at times... don't suppose you know anything about how long that takes? anyway ... enough rambling.. just thanks again for the inspiration Dee (0:  

RobynK

Oh Saint, I have been reading many of your posts.  You have no idea how much you help our sisters facing/living with this.   I do cry at the strangest times.  The first time around I was able to keep the crying for when I was alone in the shower.  This time it's so different.  I had a light bulb moment the other day...I need to get a lawyer.  I need to put everything in order.  My DH and DD need direction as I have always handled everything.  So now I have a focus...something to take the focus off of the cancer but back into making everything easier for my family.  I also realize that finding out they didn't get all the cancer the first time around....it's not a death sentence.  I've been living with it and didn't even know it.  So, how can those two words  "it's back" change everything  when the only thing that changed is my knowledge of it.  As someone else said....only G-d knows your expiration date....and I don't believe that cancer is the deciding factor.  It's made me look at my life.  Made me think about what it is I want to do.  It's made me realize everything can change in the blink of an eye.  So Stage IV to me now means, not taking anything for granted.  To really think about what it is that matters to me.  To love and cherish those I love.  To live out my life making good memories for those I leave behind.

Dee...I don't know anything about WBR.  You might want to start a post with your questions and I'm sure others that have experience with it will be around to chime in.  There are so many sisters here that are so helpful and willing to share their experiences.

This place has been such a gift.

Be well and stay strong..

Robyn

Dee2810

Thanks for that tip Robyn... will post a specific request for advice on WBR... and yeah... feel confident I've come to a good place here!

Hugz Dee (0: 

saint

Hugs RobinK~~~~You are already farther along in your thinking than most of us get in 2 years!!!!! Go with what works! When my time comes I'll know it & THEN will be the time for tears & fears.....right now I want to go live my life, love my people & laugh often! NO ONE knows when it's over! & I have a 16 yr old who has her first boyfriend & is going to her first prom-----I have lived to see this! As long as new tx's are being discovered--what says I won't see her (or her brother) graduate from college, married, maybe even my babies' babies?

.......be well & stay strong! 

beastybabe

Hi

When I was diagnosed with cancer in January last year and then found out in march that it was mets to the spine, and that Im now classed as stage 4, I was shell shocked to say the least.  And like yourself was not really given a time frame.  I was just told that my life would be significantly shorter than I expected it would be.

I remember crying for what seemed like hours, but then I came to this site and have learned that there are many survivors who have lived a long time since they were diagnosed.

So please dont think that just because your doc told you that your stage 4 that its all over, there are lots of things you can do to fight this.  You can do all the conventional treatments if that s what you want or/and you can do natural medicines....what ever works for you.  But dont give up.

I have had stage 4 cancer diagnoses for one year now and so far am doing okay, I have had no progression of the cancer.  Im personally trying alot of natural products to fight this cancer and Im also trying to stay as positive as possible.  As someone once told me that if your believe that your gonna die on a certain day or year that you almost will yourself to make it happen"

Now Im not sure how true this statement is but I dont want to die anytime soon so I belive that I can beat this thing or at least live long enough for somebody to find a cure.

jolimo

hello, I want to say that stage IV does not determine my future.. It only determines that I have cancer. I believe that I will be around when a cure is found. I live my life everyday with peace. I have two girls and a husband and I want to be around for them. I don't let anyone or anything disappoint me. belive that you will be here and you will. Docotrs are here to help us, but they cannot tell us when it is our last day here on earth.

Enjoy life!!!

monica

TINAMAE

Ladies, I need to share some good news with you that I received yesterday , I have a good friend whom I met at chemo  we are both triple negative she is 28 I am 45 my cancer  was treated very agressive and I am ned at this time ,she was also treated very agressive but her cancer  did not respond well to the chemo and now she was told it is back in her liver her brain and her lungs so she started chemo again avastin and something else, she decided to switch drs to be closer to her home in northwest arkansas and so when she did he ordered a pet scan to see where they were and what he thought she would need. so last Friday she did the scan and went in Wednesday of this week and he said the scans show no cancer, she has had a lot of prayer and I tell you it is God at work the dr was so surprised himself . he was almost speechless , so there is hope ladies just hang in there and keep fighting.

Tina 

raro

I spoke with my new oncologist yesterday, and asked him am I deluding myself? I have bone mets to the spine and rib, and possibly thyroid (still need biopsy on that). I told him I know there is no stage V, so what are we really dealing with? He looked right at me and said, "I see no reason why you can't beat this. I'm thinking full remission. Even 5-10 years ago, it might have been a death sentence, but there are more anti-breast cancer drugs and treatments than for any other cancers combined." He didn't want me to have false hope, because we never know how the tumors will respond, but he wanted me to have real hope, because he thinks we can beat this.

I am SO blessed to have a doctor now who spent an HOUR talking with me and never once looked at his watch. :-)

saint

Hugs All---

Raro-----Your onc sounds like a treasure!! I believe the medical profession considers stage IV incurable, BUT so is diabetes, glaucoma & tons of other dx's! There is no reason NOT to believe you are going to survive for years! Thanx to the research being done new tx's are being developed all the time. I probably wouldn't be here if my dx had been even a few years earlier! Keep your hope alive & strive for your dreams! We can live WITH this if we have to, so don't get discouraged if things don't seem to go the way you hoped. I have learned that dancing with the "stable" boy is a close second to dancing with NED!!! We're in this for the long haul-----start filling your dance card!

Be well & stay strong 

marshakb

Robin, all I can say is yes, it makes you look at things and make some decisions.  When I was dx in Dec I was a Realtor in a very crappy market.  Starting to think I needed to look at changing careers.  Then BAM a mets dx with a broken femur and facing 5-6 months recovery time, as well as 4-5 weeks of radiation.  I wouldn't have been able to work anyway so I went ahead and decided to go on disability.  I'll take my social security money I've paid in all these years now since I was easily not gonna be able to work the required 5 month wait.  Not to mention the fact that NO ONE was gonna hire a newly dx'd stage iv person in a new career.  I'm slowly getting my strength back and starting to hobble around on a cane easier so this summer will go back to work at the theatre part-time under the disability guidelines.  I am also throwing things away like crazy!  I am determined to unclutter my life and my house.  haha

I'm starting to think it is OK to let things be about me for a change. 

OMG Saint, dancing with the stable boy???  LOL  Does he have a brother?  Or cousin?  Hell I'm not picky!!

saint

Sweetie----I'm cloning mine & yours is in the mail-an exact dulicate!!!!!!!   He also knows how to take care with those pesky healing/healed femurs-I've already trained him for you!!!! LOL

mason204

I just wanted to add something I overheard while getting treatment recently....

My onc and some onc nurses were talking amongst themselves.  The treatment area is being renovated so I suppose under normal circumstances they would have spoken in private.  Anyway my onc was telling the nurses that she truly believes in miracles.  One or two of the nurses didn't quite believe her (which is too bad) and she spent the next 15 minutes or so rhyming off some of her cases, where people did a complete turnaround.  She basically said if she hadn't seen it with her own eyes she wouldn't have believed it either.  My onc has been at the hospital for about 20 years and has seen a lot of patients.

Although I probably overheard something I shouldn't have, it gave me hope to believe that anything is possible.  Surround yourself with people who believe in you.

CathleenP

I was told yesterday by my onc that my newly diagnosed metastatic ILC (having survived almost 5 years following mastec, chemo, rads) shoves me into Stage IV. He is not recommending chemo right now, but that could change with the PET imaging later this week. Instead, he says we will treat this as a chronic disease through hormone therapies, more than likely aromatase inhibitors (which I don't tolerate very well). He expects me to live a very long time. I wish I could believe him. Hugs to all of you and hope for a cure tomorrow...

C

keljam1

What does NED mean?  I will pray for you-

hollyann

NED means No Evidence of Disease...It means you are in remission and no cancer can be detected......

Maryiz

What a very positive forum, I love it.  In all of the threads of this healthy discussion, there are quite a few of you who mention cure.  I think that is very positive and plausible for us.  I have been researching for 3 years and most of the literature is pointing to newer and improved therapies, with less toxic effects.  I saw my oncologist last week.  He commented on how strong I look going through chemotherapy.(it could be the steroids,they give you enough, I think I could run the Kentucky Derby in record time).  He mentioned that one of his patients had died this week.  I looked at him with dismay, and then he proceeded to tell me that she died of senility, NOT breast cancer.  She responded so well to chemotherapy that it never reared its ugly head again.  I think unfortunately we all have to cope day by day, but I firmly believe a cure is on the horizon.  Hang in there.  Will you all come to my party? Maryiz

saint

I think we should not wait---but party NOW!  and Everyday!

We all need these wonderful stories---share them & share the hope!

Dancing with everyone---be it a slow waltz or down in the mosh-pit!

Dance now---& keep dancing rain or shine! 

HUGS==be well & stay strong 

Fitztwins

Wow, some amazing uplifting stories!!

So days I think I should go on disability..I am having so much fun in my job...

hollyann

Could not resist posting this.....I just found out that my friend, Victoria, who is 87 yrs young, was diagnosed with breast cancer in 1976!.....She had a radical mastecomy with no recon and is STILL NED!>>>>>I just couldn't resist this post...Even though I said I wouldn't ever post on the Stage 4 thread....I could not resist this great news!......

Jaypee60

This is such a wonderful group of positive ladies!!! I was dx in April with bone mets to the spine and have been through a crueling month of radiation, am now on Abraxine chemo. There are days when all I can think of is cancer, cancer cancer. However, I know those negative, depressing thoughts are not from my God. The enemy uses whatever opening we allow him to cause us misery, pain and hopelessness. I'm using Christ as my example....when He spent 40 days in the wilderness and the enemy continually attacked Him, He fought back with "It is written" and used God's word to banish him. Memorizing scripture has been a huge blessing to me. I want to have it in my heart and mind to do battle and not allow the enemy to spiral me down into depression, fear and pain.  My favorites: Psalm 33:18; 2 Timothy1:7; Psalm 16:8; Psalm 139:13-18. This battle is not an easy one, to be sure, and this board of positive women can give us much strength. Let's continue to lift each other up...we all get down from time to time. You ladies are God's blessing to me.