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Topic: Stage IV-Can you go into remission, or be cured?

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Feb 21, 2011 08:14AM

amontro wrote:

Has anyone ever really survived Stage IV?  I have a long way to go in my treatment. Herceptin has been working for 2 years so far.  My oncologist expects it to escalate and then I'll have to get chemo.  Is there a chance of remission after chemo?  Is there a chance of a cure for Stage IV?

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Feb 21, 2011 08:26AM konakat wrote:

Hi Amontro,

Breast cancer is incurable, whatever stage.  There are rare instances when a Stage IV woman goes into remission (no evidence of disease/NED) for many years.  The scary statistic is that only about 20% reach the 5 year mark after being diagnosed as Stage IV.  However, there's no reason that you shouldn't assume that you are in that lucky 20% and may life quite a number of years.

It is wonderful that Herceptin is working so well for you!  I do hope it continues for a long time.  But more often than not, the cancer will spread.  However (again), every woman is different, there isn't a hard and fast rule.  Always go on the assumption that you will keep living until you are told otherwise.  Best wishes,

Elizabeth

Elizabeth's Mantra: When in doubt, eat cake. When you haven't a clue, add ice cream. Elizabeth's Mets: Liver, bones, brain (yuck), and lungs (more yuck). Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
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Feb 21, 2011 09:15AM ElaineD wrote:

As Elizabeth has said, we cannot hope for a cure. But we do hope to stay as stable as possible, for as long as possible. Your onc is right-it will escalate, to the point where you will need to be on chemo continuously-if lucky we sometimes get short breaks to allow our bodies to recover some strength, and give us a rest from the endless side effects. It's  hard thing to accept-but if you can work at accepting and understanding this basic fact, you will find living with the disease can be manageable for periods of time. Sooner or later the treatments cease to be effective-our bodies become immune to the drugs (a frighteneing thought!), which is why your onc expects your symptoms to worsten. However, there are a number of chemos which can be tried-some work well for some of us-some don't help at all. It really is just  a case of trial and error to try and establish what can help us.

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Feb 21, 2011 09:26AM amontro wrote:

Thank you for the confirmation. While I still  have my energy, I'm going to have to make life altering changes.  I'm going to see a psychologist that my oncologist recommended.  My boy friend of 17 yrs (we've lived together for 14) is much younger than me and is having trouble accepting that the end is near. He's at the point where he's had true illnesses and hospitalizations of his own and he likes to say that he's sicker than I am.  I'm going to have to move from a 3rd floor condo (walk up) to something smaller without him.  I have to do it now before I get worse and still have the energy.  I  hope this psychologist works out to help me with the breakup and moving.  Can you recommend where I can get help with making lifestyle changes, either on this board or elsewhere?  Thank you so much for your honest responses.

Dx 9/2008, Stage IV, Grade 3, mets, HER2+
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Feb 21, 2011 10:31AM , edited Feb 21, 2011 10:32AM by konakat

Amontro -- please don't make any hasty, life-changing decisions.  I'm just guessing, but you are having to deal with what your onc said (and our posts) and it may colour your decisions right now.  Maybe wait a while and discuss this with your psychologist.  You could very well be jumping the gun and not have to make these decisions for quite a while.

You certainly could post your questions in this Stage IV forum -- I'm sure there are other women that can relate to what you're going through.  Also the Depression, Anxiety and Post Traumatic Stress Disorder board might be a place to post too.

In any case, I hope you find solutions that are the best ones for you.  Hugs,

Elizabeth

Elizabeth's Mantra: When in doubt, eat cake. When you haven't a clue, add ice cream. Elizabeth's Mets: Liver, bones, brain (yuck), and lungs (more yuck). Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
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Feb 21, 2011 10:32AM blondiex46 wrote:

the breakup, are you breaking up because of this?

Original 8/96 - 1cm, chemo, rads. Recurr..9/09...Mets to lungs, chest wall, lymph nodes under arm & chest, cervical & lumbar spine, ribs, hip. Femera, Falsodex, Zometa, Xeloda, Gemzar,Taxotere, Adriamycin,Havalen.WENT OFF CHEMO 7/20/14 Dx 9/1/2009, 3cm, Stage IV, ER+/PR-, HER2-
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Feb 21, 2011 10:46AM Cafelovr wrote:

Wait! If the Herceptin is working, why are you making these decisions?

Do not look at these posts and think that is you...it's not. The cancer I have is different from yours; it's different from Elizabeth's; it's different from anyone. You do not know when (or if?) you will decline.

I'm just saying, don't punish yourself! You are alive and you much enjoy that life!

Linda J Dx 10/19/2009, IDC, 6cm+, Stage IV, Grade 3, 0/2 nodes, mets, ER+/PR-, HER2+ Hormonal Therapy 07/10/2010 Targeted Therapy 01/22/2010 Herceptin (chemical name: trastuzumab) Surgery 05/28/2013 Prophylactic (also called preventive) removal of the ovaries Surgery 04/04/2010 Mastectomy of one or both breasts: Mastectomy of my left breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side ; Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast Surgery 12/28/2011 Reconstruction of my left breast: Latissimus dorsi flap, Tissue expander placement; Reconstruction of my right breast: Latissimus dorsi flap, Tissue expander placement Radiation Therapy 05/04/2010 Chemotherapy 11/23/2009 AC + T (Taxol): Adriamycin and Cytoxan, plus Taxol
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Feb 21, 2011 11:03AM steelrose wrote:

Amontro...

I agree... don't make decisions now that you may regret. I didn't think I was going to make it through last year and I am now in "remission." There is no crystal ball here... cancer has a mind of it's own. Yes it's always good to re-evaluate things, but I hope you'll keep in mind that you may be around for many years to come! Enjoy your life!

Wishing you all the best... 

Rose.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Feb 21, 2011 11:54AM Heidihill wrote:

Most of the statistics floating around were made before Herceptin came along. So there you already have a greater chance of outliving those years you're supposed to have left. And then you have to understand that any statistic may not necessarily apply to you. That is the nature of statistics.
There's a woman on these boards who has been stage 4 since 1987! For people who live that long in remission, nobody can say if they're cured and that's what I hate about this disease. But in 5 years we may have ways of telling if any cancer cells have survived our treatments for cancer whatever stage. (Yes, you can go on remission with stage 4.) so you may have a lot of years to spend with your bf...

Dx 8/2007, IDC, 2cm, Stage IV, 2/19 nodes, mets, ER+/PR+, HER2-
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Feb 21, 2011 12:25PM amontro wrote:

Blondie - He's much younger than me and I spend more time taking care of him. I don't want to be fussed over, but when I'm not feeling well, he pushes me to take him shopping, fever and all. When he's sick, I have to wait on him hand and foot.  He doesn't like to hear me say that I don't feel good (I don't say it that often), and I can never say that I have cancer, he yells at me to cut that out.  He's totally in denial about my diagnosis and, unless I can convince him to attend couples therapy, I'd rather live alone than be pushed around.

Dx 9/2008, Stage IV, Grade 3, mets, HER2+
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Feb 21, 2011 12:28PM konakat wrote:

Not good being pushed around.  You need some TLC too!  I do hope he agrees to couples counselling.  No matter what, take care of yourself.  Hugs,

Elizabeth

Elizabeth's Mantra: When in doubt, eat cake. When you haven't a clue, add ice cream. Elizabeth's Mets: Liver, bones, brain (yuck), and lungs (more yuck). Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
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Feb 21, 2011 12:35PM justjudie wrote:

under those circumstances, maybe it is time to park him at the curb. Just give it some thought first and be sure that is what you want to do.


Judie

Judie Dx 3/31/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Feb 21, 2011 12:35PM cookiegal wrote:

I'm so sorry to crash here,(Elaine don't hate me,) but there are some social workers who are really good at helping stage 4 patients with life changes.

Jean Rowe gave a presentation at last year's YSC, she is based at Emory University.

She might be able to connect you with someone in your area.

You deserve a cookie!
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Feb 21, 2011 12:46PM ElaineD wrote:

So sorry to hear of the additional stress caused by your boyfriend. Whilst changes should be carefully thought through, it does sound as if this issue needs to be addressed quickly. You have to be kind to yourself, and keep as well as possible-both physically and mentally. Whilst stress may not aggravate/cause cancer (I don't think anyone knows for sure)-it certainly doesn't help us to deal with the problems we face on a daily basis. Please don't think "the end is near"-not even your onc can know that for sure. But it's important to have as much control/peace in our life as we can-there are so many areas in our lives now where we have little or no control. As I said, no 2 people repond the same to treatment-so it's hard for us to say, "you'll be fine"-we simply don't know how you'll thrive. But take comfort from the fact that there is no reason not to hope that you will find a chemo which will help when it becomes necessary. But, before that time, I hope you have this relationship problem resolved-good luck.

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Feb 21, 2011 01:27PM , edited Feb 21, 2011 05:12PM by mackers67

Amontro

Hi

Look on the thread " let's do a role call" it tells u everyone stories it's a couple up from Ur thread..some not great stories but some very good ones!!

Some oncologists/medics are very optimistic abt stage 4 others aren't. I do know there lots of ladies doing very well and continue to do so for years!!! Everyone keeps telling me!!!

Xxx

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Feb 21, 2011 02:52PM Cafelovr wrote:

Ohhhh! You do not need any added stress. Life it too short to be unhappy. My grandmother used to tell me that life was too short to dance with ugly men! You have to do what makes you happy.

Linda J Dx 10/19/2009, IDC, 6cm+, Stage IV, Grade 3, 0/2 nodes, mets, ER+/PR-, HER2+ Hormonal Therapy 07/10/2010 Targeted Therapy 01/22/2010 Herceptin (chemical name: trastuzumab) Surgery 05/28/2013 Prophylactic (also called preventive) removal of the ovaries Surgery 04/04/2010 Mastectomy of one or both breasts: Mastectomy of my left breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side ; Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast Surgery 12/28/2011 Reconstruction of my left breast: Latissimus dorsi flap, Tissue expander placement; Reconstruction of my right breast: Latissimus dorsi flap, Tissue expander placement Radiation Therapy 05/04/2010 Chemotherapy 11/23/2009 AC + T (Taxol): Adriamycin and Cytoxan, plus Taxol
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Feb 21, 2011 09:47PM windy2011 wrote:

I don't see any reason or advantage to giving up hope.  Hope springs eternal.  It is a scientific fact that patients do better with a positive attitude.  Kick that man to the curb and surround yourself with people who will love you properly.  No one ever really knows when their time is up.

Dx 12/27/2010, IDC, 3cm, Stage IV, Grade 2, 3/6 nodes, mets, ER+/PR+, HER2-
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Feb 22, 2011 07:20AM JeninMichigan wrote:

Amontro

Please wait a bit and let all of this soak in.    When I found out I had liver and bone mets I remember crying in my oncologist's office and asked her "do I need to sell my house or rehome my animals"   Should I be getting my stuff in order?  She looked at my like I was crazy ... she said ABSOLUTELY NOT!.  She told me I will live a long life.  There is an arsenal of treatments available for me.   She said it is a chronic disease like diabetes.  I will always be on treatment.  However, being Her2+ is a bonus with the options of targeted treatments.  I have been NED (no evidence of disease) now for 2 1/2 years.   In fact, today is my diagnosis anniversary - 3 years ago.    I still live on my farm with my two daughters and animals  and we carry on.    You don't have an expiration date and you can't live your life worrying about dying.   Of course, I have done some things like write a will and start a journal for my kids... but I have not made any life altering decisions other than those things that I probably should have done regardless of the cancer.

Don't give up on life.

Jennifer

Dx 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+/PR-, HER2+
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Feb 22, 2011 07:24AM JeninMichigan wrote:

Armontro

I'll just add that your boyfriend sounds a little toxic for your mental and physical health.   Regardless of the cancer, this type of relationship is probably not healthy for you.  I didn't catch some of the latter posts regarding the relationship. The other thing my wise oncologist told me when I was starting treatment that it is the time to focus on yourself.   Instead of being the caregiver all the time, you need to take care of yourself first.    Wise advise!!! You do need to focus on yourself.

Jennifer

Dx 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+/PR-, HER2+
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Feb 22, 2011 08:43AM vickieteach wrote:

Thanks for your wise words! We do need to just carry on and not think about any expiration date!

Dx 8/2009, DCIS, Stage IV, 0/12 nodes, mets, ER+, HER2+
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Feb 22, 2011 08:53AM Romans8 wrote:

Amoronto:

Yes, there are several women who lived longer on stage IV but survival is not an option as this point. Everyone is not guaranteed to live forever. The disease is incurable but treatable. If your tx is working for now, then live with the present. When it comes to a point where it does not work and has to be changed, then you make your decision then when that time comes. Living in fear on what the future may hold or holds will make you depressed, scared, and angry. Live on a day by day basis and make the most out of it. You can go to a counselor; but you can hear from a lot of stage IV women here who continue to live and tell their daily struggles with this disease.

Hugs to you and God bless you!

Dx 11/9/2010, DCIS, 2cm, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2-
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Feb 22, 2011 08:58AM Romans8 wrote:

Amoronto:

With regards to your boyfriend, make a wise decision. You need to take care of YOU and not HIM. So the choice is yours.

Dx 11/9/2010, DCIS, 2cm, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2-
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Feb 22, 2011 10:23AM LC815 wrote:

I say, go ahead and move, but keep bf around for the good bits.  Does this sound evil and manipulative?  It shouldn't.  When you don't feel well, then you'll be free to not answer the phone.  When he's not feeling well, then . . . .well, I guess  you won't have to answer the phone then, either!  He'll have to learn to take care of himself and you'll have some peace.  On those days when it's clicking, and the both of you are on an upswing, you can get together.  Eventually, you'll both get to a point where you've learned to meet in the middle -- or not, and then the bigger decision can be made.   I've been with my boyfriend for eight years.  We've never lived together, and I think that's one of the reasons we've been successful in our relationship. 

Just thought I'd present another way of looking at the relationship part of your post.

Peace,

LC

Original Diagnosis 5/04, 2.5 cm. Stage IIB, 2/14 nodes. 9/09 local recurrance and liver mets. Have checked off the following: Arimidex, Tamoxifen, Taxol, Faslodex, Carbo. Now getting beaten up by Gemzar with a Neulasta chaser. Dx 9/9/2009, IDC, <1cm, Stage IV, 0/0 nodes, mets, ER+/PR+, HER2-
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Feb 22, 2011 10:33AM dreamwriter wrote:

Amontro:

Everything you need to know has already been said.  However, I would like you to go through the threads and see how many of us are NED (dancing with NED) or stable (kissing the Stable Boy).  You may find it uplifting that many of us that were told we did not have  long to live go on to have happy long periods of good health.  I have been stable-ish for 4 years and I was only given 1 yr to live.  Those extra 4 yrs have had their ups and downs but all in all I am happy to be here.

Laugh until it really IS funny. Dx 12/20/2005, 6cm+, Stage IV, Grade 3, 18/18 nodes, mets, ER+/PR+, HER2-
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Feb 22, 2011 11:47AM Lowrider54 wrote:

Amontro

With or without the bc, this boyfriend sounds toxic.  The one thing I have learned in my short journey thus far is I have no time or tolerance for drama queens in my life - I remove all stresses I can, control what I can and let what I can't control go - I try to surround myself with upbeat people who like to laugh.  I live alone in a one story double wide modular home - very convienent for me for laundry and cleaning and stuff - I am still working. I see a psychiatrist and am medicated though not overly so. 

I was just given the word at the end of January that I have reached 'stable' after 16 months and 6 days from my diagnosis.  It is still in my bones only and we hope to keep it there.  I know there is no cure but if a treatment can keep me stable or maybe even get me to NED - that is as good as a cure for me!

Wish you the best...LowRider

Smile...it will make people wonder what you are up to...Initial dx 04/99 - CMF; 9/2009 bone mets Arimidex; 6/2010 Faslodex/Xgeva; 8/2011; abdominal wall invaded, ER/PR flipped to TN, Abraxane/Avastin//Xgeva 09/02/2011; 11/2011Xeloda/Avastin/Xgeva. Dx 9/16/2009, Stage IV, 5/25 nodes, mets, ER-/PR-, HER2-
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Feb 22, 2011 12:35PM BeckyOD wrote:

There has been a lot of good advice here and I echo a lot of it. What bothers me most from your post is the boyfriend thing? Toxic is the right word that lowrider said. You are not his mother but he is a selfish child. I'd rather live on my own forever than to be bullied into taking care of a person so demeaning. Cancer IS a big deal and real and cannot be yelled away. If you don't take of yourself you won't make NED which is what we're all aiming for, for a long long time. I say pull the bandaid off and get out of there.
BTW, a third floor walk up? You'll be unhappy with that on chemo. Trust me. I have a two story home. The one flight at this point is tough enough.
Get the help YOU need. You deserve it.

Dx 2/21/2005, Stage IV, 0/18 nodes, mets, ER+/PR-, HER2-
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Mar 7, 2011 02:09PM Livelaughlove30 wrote:

Hey just thought I'd share,
I'm now 30yrs old but was diagnosesd at the age of 24 with stage 4 metastatic breast cancer with no chance of remission,now that was six years ago. Today I can say I have been in remission for two years and the doc wants to take me off chemotherapy and just continue herceptin every three weeks!!! Ladies stay positive things can get better. Much love sister survivors

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Mar 7, 2011 02:21PM Heidihill wrote:

That is great news!!! I love to hear success stories!

Dx 8/2007, IDC, 2cm, Stage IV, 2/19 nodes, mets, ER+/PR+, HER2-
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Mar 7, 2011 02:42PM apple wrote:

just want to say hello and best of luck with your health and decisions.

peace and love, apple - ..... Mary Magdalen Dx 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+
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Mar 22, 2011 07:48AM jcar wrote:

hi my name is jo got diagonsis on 22nd dec 2009 was told i had no cancer in lymph glands ,my doctor said she didnt leave enough margin so i needed to go back into hosp, i ended up with 28 lymphs glands removed 20 had cancer , i have been following your story and yes there are survivors,i know alot of people that have survived breast cancer, but  i lost a friend this week to breast cancer she keep asking her doctor about a lump and he said it was a cyst well by the time she found out her tumor was 8cm and in her bones ,i am so scared everyday of this with lymph glands involved and  i have  er,pr.her postive have had chemo, radiation, hercepton for a year am having 6 monthly zometa for bones take tamoxifen everyday i still feel ok and hopefully it isnt a life sentence i just turned  47

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Mar 22, 2011 07:56AM jcar wrote:

i know that my cancer is pretty bad and there is always hope ,you  have to remember every one is different, as a women that as gone 15months with breast cancer we are amazing people ive had all treatment that i can , so we all just keep living and be strong  , hope you all ok

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