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Topic: Stage IV - real-world prognosis ?

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: May 8, 2012 05:52PM

pnut166 wrote:

Hi all ! I`m new here, and it`s actually my wife who is the patient. I hope it`s okay for me to post here ! A brief rundown: My wife is an otherwise healthy 44 yo. She was diagnosed with DCIS in `08. Had a mastectomy w/ TRAM. Began having back pain in November, and was diagnosed Stage IV at the end of December. She had numerous lesions in her vertebrae (and compression fractures) and pelvic bones, some small scattered nodules in her lungs, and a soft-tissue mass in her axilla. That mass was radiated, and chemo began end of January - Herceptin and Carboplatin. She seems to have improved dramatically - her tumor marker was > 2000 in January; it was 64 last week. Her symptoms have greatly improved, and a repeat PET last week showed the lung nodules gone, the bone lesions largely inactive, and the axilla mass reduced. My question at this point is this: even though this isn`t a lot of info, what do you guys think about her prognosis ? Her doctor - while an amazing clinician - will only cite statistics. Nothing in the way of a personal - case prognosis. She (the MD) says she expects remission within three months, and this will improve her prognosis, but not by how much. I am totally confused. I realize "remission" and "cure" are not the same, and that there is no cure. But if she is in remission, doesn`t that mean the disease is not progressing ? We just want to have a general idea of how things may progress and plan for the future - the MD citing "statistics say two years" isn`t really helping. Thanks to anyone for any info - BTW you ladies are amazing !

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May 8, 2012 07:23PM susan_02143 wrote:

The very short answer is, none of us know what the future holds. Your wife might have a cancer that responds well to treatment or she might not. Treatment has kept many of us healthy beyond the statistics.

To me is sounds as though she has had regression and that is a mighty good thing. Revel in the good news when you have some. Enjoy every day as much as you can. Be prepared to fight back when needed.

All the best,

 *susan* 

... and its back. May 3, 2010 mets found. Three years hanging with NED on Faslodex.

Dx 6/8/2005, IDC, 3cm, Stage IIb, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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May 8, 2012 07:57PM BouncingBetties wrote:

I'm sorry to hear about your wife. I'm a stage IV metster and have been from diagnosis July 2011. I have lung, bone, and liver mets. I had a disc collapse and did have horrendous back and rib pain. I had six months of weekly Taxol, and have been on Clasteon since last July. I'm now on Tamoxifen and after having regression, was stable and then started having regression again. My onc says it is good that I know the stats but he doesn't want me focused on them because, as I've been told by many members of my team, and what you need to keep in mind is that your wife's cancer is her cancer - not anyone else's. I see she's on Herceptin so is HER+, so I have no experience with that at all, but can say that at 41, I plan to fight the monster as long as I can and I'm sure your wife feels the same way. Author, Kathy Rich, passed away last month but had breast cancer for 25 years, and lived with mets for 19 of those. I know she gave us on these boards such hope and hope she can do the same for you. Each day that we can keep going is one day closer to a new treatment. My onc reminds me that there is research going on all the time and new discoveries every day. Hope, love and support are so very important for your wife's survival. All of the chemo and meds in the world can't replace having people there to help you, love you and let you feel your feelings. I understand that you want to plan ahead but there is no way for her onc to tell you if she'll have two years or 20 years. I'm a planner and have had to learn to focus more on the moment.

CANCER SUCKS!!! I'm almost out of txt options, Metsisters. 😔

Dx 7/12/2011, IDC, 6cm+, Stage IV, mets, ER+/PR+, HER2-Chemotherapy 08/05/2011 TaxolHormonal Therapy 01/19/2012 TamoxifenSurgery 01/03/2013 Lumpectomy (Right)Chemotherapy 01/25/2013 XelodaHormonal Therapy 07/25/2013 FemaraHormonal Therapy 11/05/2013 AromasinTargeted Therapy 11/09/2013 AfinitorChemotherapy 02/14/2014 Adriamycin
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May 8, 2012 08:52PM Chickadee wrote:

I'd rather have the Doc be honest, they don't know, rather than giving you some number that could mean nothing and might scare the heck out of you.

I don't make long term plans now and try to do the best I can from scan to scan. I know my liver could revolt on me anytime it wants to or it might just finally respond to the chemo.

Best I can tell you is to start living for today. Trite and cliche, but that's all you can do. Cancer is a thief.

I'm in such bad shape, I'm wearing prescription underwear." Phyllis Diller 1917-2012

Dx 9/1/2009, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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May 8, 2012 09:11PM 37antiques wrote:

I think if you run around thinking "the doctor said two years", well, you'll probably get two years.  But if you look at the fact that she is in remission, and has responded very well, then you probably know as much as you did before cancer came along!  It is very positive that she has responded so well, not everyone does, and lots of people stay stable or in remission for many years.  I wouldn't let some fuddy duddy doctor throw some statistic at me, they are all outdated by the time they come out.  Live, laugh and love, for as long as God is willing to let you.

((Hugs))

IDC DCIS & Mets

Dx 2/27/2007, IDC, 1cm, Stage IV, Grade 3, 0/0 nodes, mets, ER+/PR+, HER2-
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May 8, 2012 09:58PM, edited May 8, 2012 10:00PM by bikergal

I think it depends a lot on the individual.  I believe that for Her2 positive women, the median survival is 3.5 years.  However, I was diagnosed at stage IV (also at 44) with widespread metastatic disease in March 2007, had six months of Taxol, Carboplatin, and Herceptin, and I have been NED (no evidence of disease) for almost 5 years (knock wood), just taking Femara, Herceptin, and Zometa.  You can find many similar stories on the Her2 support board (her2support.org).  I believe that a good response to the original chemo improves your prognosis.

I am puzzled about why your wife isn't getting Taxol or Taxotere.   That is standard with Herceptin and Carboplatin.  You might consider a second opinion.     

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May 8, 2012 11:04PM pnut166 wrote:

She is getting Taxol - my mistake. Taxol, Carbo, & Herceptin weekly, Zometa monthly. Congrats on your victory !

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May 8, 2012 11:12PM pnut166 wrote:

I appreciate everyone`s input. Yes, we do live for the day now - none of us are guaranteed tomorrow. We have small children - one of whom has autism - and would really like an idea of the road ahead for all of us. My son was already receiving very expensive treatment out of pocket before my wife`s recurrence. An honest prognosis - if there is indeed one to be given - would help us wrap our minds around things. Thank all of your for sharing your experiences - that`s why I came here. I am an RN, but admittedly I have no experience with oncology. But I`ve been a nurse long enough to know that some of the best experts in the world on any particular disease are the people who have lived it.

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May 8, 2012 11:20PM, edited May 8, 2012 11:23PM by CoolBreeze

The hardest part about alll of this is learning that nobody can see into the future.  There is no such thing as an honest prognosis as everybody responds to treatment differently.   Nobody knows how long your wife has.  She could be in remission (we call it NED - No Evidence of Disease) for five years or she could be NED never.  She could respond to one chemo for a while and none of the rest of them.  There is NO way to tell.

So, my advice is to just do the best you can to enjoy the time you have this minute.   You just will not know.

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV

Dx 8/17/2009, IDC, 4cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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May 8, 2012 11:24PM Jejik wrote:

I understand your frustration...my oncologist would never give me a prognosis either, he wouldn't even give me statistics. I would ask him about the ones I saw on the internet, including that 97% of women with stage iv breast cancer will die from the disease. He would just say, wel,l there, is no reason you cannot be in that three per cent. I always found this so unhelpful. I wanted odds, hard cold figures so I felt like I had a better idea of what I was facing.

But I think some doctors just don't want to steal your hope, or put an expiration date on people, and as frustrating as it is, I think the reality is, that in many cases, they don't know. For those of us HER2 positive, which I assume your wife is since she is on Herceptin, things have changed drastically since Herceptin started being widely used, so the the statistics haven't caught up to that yet. If your wife is responding well to treatment, that really is wonderful news. Unfortunately, like you said, with stage iv, there is no cure. That means even though the cancer goes into remission, and you can't see it on a PET scan, it is still lurking in the body. When will it pop back up? No one knows.

My oncologist says he has several stage iv patients who have stayed on herceptin for years, and have done really well. I hope to be in that group, but am still working on accepting that I may not be. A year and a half after diagnosis, I am still trying to figure out how to balance not letting my diagnosis control my life, but at the same time, making the most of whatever time I do have. Learning to cope with such uncertainty is so hard. I wish you and your wife the best of luck.

I am a breast cancer fighter, not a survivor.

Dx 9/21/2010, IDC, 2cm, Stage IV, Grade 3, 1/10 nodes, mets, ER-/PR-, HER2+Surgery Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy carboplatin, TaxotereRadiation Therapy ExternalTargeted Therapy Herceptin
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May 8, 2012 11:52PM nancyh wrote:

Dear pnut166,

First of all, welcome to the boards.  Sorry to hear the news of your wife's metastatic diagnosis, but hope you will find lots of information and support on the boards.

To the question of prognosis, I agree with previous posters that there are many factors, but want to add that there is reason to be optimistic.  There are many treatments available and while it is impossible to predict how your wife's cancer will respond to treatment, many gals do really well and live for many years (well beyond the published stats for median survival). Some breast cancers are aggressive and unresponsive to treatments while others are slower growing and go into hiding for long periods of time, potentially many years with excellent quality of life.  

Best wishes to you and your wife.  Please keep in touch, let us know how she's doing, and feel free to come here any time for questions or just to vent.

Warm hugs,

NancyH 

Stage 4 in 2009, mets to liver, lungs, bones, and brain.

Dx 8/12/2002, IDC, 1cm, Stage IIb, 3/12 nodes, ER+/PR+, HER2-Dx 4/2/2007, IDC, 1cm, Stage II, ER+/PR+, HER2-Dx 9/1/2009, IDC, Stage IV, mets, ER+/PR+, HER2-Chemotherapy 10/01/2002 Adriamycin, CytoxanChemotherapy 01/01/2003 TaxolHormonal Therapy 05/01/2003 TamoxifenRadiation Therapy 05/01/2003 ExternalSurgery 05/01/2007 Mastectomy (Both)Chemotherapy 06/01/2007 Cytoxan, fluorouracil, methotrexateSurgery 05/01/2008 Reconstruction: Tissue expander placement, Latissimus Dorsi flap (Both)Targeted Therapy 09/01/2009 AvastinChemotherapy 09/01/2009 AbraxaneHormonal Therapy 06/01/2010 FemaraChemotherapy 09/01/2011 XelodaHormonal Therapy 01/01/2012 FaslodexChemotherapy 06/01/2012 NavelbineChemotherapy 05/01/2013 GemzarHormonal Therapy 06/01/2013 AromasinTargeted Therapy 08/01/2013 AfinitorChemotherapy 10/28/2013 Halaven
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May 8, 2012 11:57PM nancyh wrote:

As a footnote.  I've never been NED (no evidence of disease, aka total remission) since being diagnosed with extensive mets to liver, lungs, bone and now brain, however, I have been stable for nearly 3 years with very little impact on my quality of life.

Best wishes again,

NancyH 

Stage 4 in 2009, mets to liver, lungs, bones, and brain.

Dx 8/12/2002, IDC, 1cm, Stage IIb, 3/12 nodes, ER+/PR+, HER2-Dx 4/2/2007, IDC, 1cm, Stage II, ER+/PR+, HER2-Dx 9/1/2009, IDC, Stage IV, mets, ER+/PR+, HER2-Chemotherapy 10/01/2002 Adriamycin, CytoxanChemotherapy 01/01/2003 TaxolHormonal Therapy 05/01/2003 TamoxifenRadiation Therapy 05/01/2003 ExternalSurgery 05/01/2007 Mastectomy (Both)Chemotherapy 06/01/2007 Cytoxan, fluorouracil, methotrexateSurgery 05/01/2008 Reconstruction: Tissue expander placement, Latissimus Dorsi flap (Both)Targeted Therapy 09/01/2009 AvastinChemotherapy 09/01/2009 AbraxaneHormonal Therapy 06/01/2010 FemaraChemotherapy 09/01/2011 XelodaHormonal Therapy 01/01/2012 FaslodexChemotherapy 06/01/2012 NavelbineChemotherapy 05/01/2013 GemzarHormonal Therapy 06/01/2013 AromasinTargeted Therapy 08/01/2013 AfinitorChemotherapy 10/28/2013 Halaven
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May 9, 2012 12:49AM banjobanjo wrote:

Sorry about your wife - it is natural at first to think statistically (we know we shouldn't but we do) but each case is so individual in so many multi-layered ways that it just isn't possible.  Eventually, we all seem to come down to wanting treatment that is effective and bearable and a goal of making the most of what time we have - whether you are a bucket-list person or someone who is contented to continue their day-to-day life as usual (that's me!).  I'm sending you my very best wishes for you wife's effective treatment.

Barbara 'And we are here as on a darkling plain, swept with confused alarms of struggle and flight, where ignorant armies clash by night.

Dx 10/5/2011, DCIS, 1cm, Stage IV, Grade 3, 14/16 nodes, mets, ER-/PR-, HER2-
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May 9, 2012 01:39AM 3littlegirls wrote:

It all depends on how she responds to treatments. It sounds like so far she is doing amazing. Be happy about that.  No one knows what is in store for us but live life to the fullest and hopefully we will be blessed to see an end to this disease.  I really think they are sooo close. 

I have been Stage 4 from the get go 2 years now and I have no SE and living life.  I just had a handstand contest with my girls at the playground yesterday. They kicked my butt but hey I am 41 and can do a handstand.  I have mets to my bones, lungs, liver and lymph.  Been stable the whole time.  

So hopefully your wife will continue to respond.  I've heard you could take identical twins with the same type of cancer in the same places and they will respond differently.  It's a crazy diseaase with a mind of it's own.   

Michelle

Dx 4/19/2010, IDC, 6cm+, Stage IV, Grade 3, 5/18 nodes, mets, ER+/PR+, HER2-
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May 9, 2012 02:11AM Mzmerz wrote:

I'm sorry you have to join us, but welcome.  I am a recent stage 4 and I am still learning.  I learned the most from this board, so ask any questions you may have. Everyone shares their tricks and tips and it helps.

I have young kids, too, so I know about the worry.  I want to be around to see my 8 year old graduate college!

Good luck to you

Amy 

You are stronger than you seem, braver than you believe and smarter than you think you are. A. A. Milne........ Bone mets to femurs and hips

Dx 6/12/2009, IDC, 3cm, Stage IIb, 12/19 nodes, ER+/PR+, HER2-Dx 3/22/2012, IDC, Stage IV, mets, ER+/PR-, HER2-Surgery 07/08/2009 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 08/07/2009 Cytoxan, TaxotereRadiation Therapy 01/03/2010 ExternalHormonal Therapy 02/22/2010 TamoxifenSurgery 05/08/2010 Prophylactic Ovary Removal (Both)Radiation Therapy 03/27/2012 ExternalHormonal Therapy 05/01/2012 Femara
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May 9, 2012 04:28AM Mazy1959 wrote:

Hi pnut, I'm sorry your wife has to deal with this at all.  I agree with what most of the ladies here say. I first had stage 2b in 2003 and then in 2006 was diagnosed with bone mets in my 5th lumbar vertebrae. The last 2 yrs my cancer was considered inactive.  More recently I was diagnosed with extensive bone marrow mets in my pelvis, hips, lower back, sacrum and right femur. I'll be starting treatment for that soon.

I know its hard to understand, but there's no good answer to how long your wife may live. I've had stage 4 for over 5 yrs. Even with this new progression..I'm not thinking I'm dying anytime soon. My oncologist tells me that there is really no remission for me. I was NERD = No Evidence od Recurrent Disease. But I'll never be free of cancer. I live with it and do the best I can. I had to find new interests etc that didnt require me to be real physical etc. I keep adjusting my life as needed to live with as much quality as I can.

 If I had young children I'd have plans in place for worse case scenario just in case its needed and to lessen the worry about what you will do. I'm a planner..I like to take care of anything I can ahead of time. Hugs, Mazy

Bone marrow mets in 90% of bone marrow.

Dx 3/6/2003, ILC, 3cm, Stage IIb, Grade 2, 2/9 nodes, ER+/PR+, HER2-Dx 12/19/2006, ILC, 4cm, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR-, HER2-Dx 4/25/2012, ILC, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2-Dx 8/4/2012, ILC, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2-Chemotherapy 08/09/2012 Abraxane
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May 9, 2012 05:35AM NNBBFL wrote:

Hi Pnut,

I agree with the others for the most part. You must plan for the worst but hope for the best. But by hope I also mean be proactive and find out as much as possible about your wife's individual diagnosis, ask informed questions and be an active part of the the treatment plan. Statistics can be found on the internet but don't let them define your life. I think the last I saw was something like 23% of Stage IV make it past 5 years but who knows who is in the 23% or what that means for quality of life. I too was recently diagnosed at Stage IV with lung, rib bone and spinal mets. I feel fine and would not even have been diagnosed except the cancer broke through the skin at my rib bone. My point is that at Stage IV it is the quality of life that matters. It sounds like your wife's treatment has been successful - remission is what we all at Stage IV pray for...Cherish it. Life holds no guarantees but is full of promise depending on how you choose to look at it. If you are a reader, you may want to read "The Power of Intention" by Dr. Wayne Dyer. Best wishes to you and your family.

Dx 11/23/2011, IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-Hormonal Therapy 04/02/2012 ArimidexHormonal Therapy 05/15/2013 Aromasin
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May 9, 2012 05:42AM ma111 wrote:

Sorry about your wife.

None of us can really tell you much about the real time prognosis. Stats change all the time and by the time new ones are out there have been new medications put into place that will change the stats again. If she gets NED consider a vaccine trail, www.clinicaltrails.govI was on a vaccine trail and it bought me time. The better ones you have to be NED. I was not NED, but if you look at my dx, you can determine that I should no longer be here, especially since chemo stopped working in December and I have not been on any anti cancer medication since.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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May 9, 2012 07:27AM apple wrote:

I have never asked my onc. 'howlong'?  i'll spare her.  After a mastectomy, 4 chemos, radiation, a couple seizures (not related to breast cancer),,, it;s 4 years later.  I have always felt fantastic.  recently i was diagnosed with brain mets which really knocked the wind out of my sails.. emotionally and the brain radiation really caused a lot of fatigue. 

I feel less hopeful.. but who knows?  Please stick around and welcome.

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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May 9, 2012 10:40AM KSkier wrote:

I too have young children, and have been fighting triple negative mets for 4 years - since the birth of the youngest.

I feel that our longevity (your wife's and mine, as we are responding to treatment) really depends on how long our bodies can stand the treatment.  Often it's the poison that kills the cancer that does in some other organ.  I feel that as long as my body can filter the poison, as long as my liver and kidneys and heart stay strong even though I feel like I've been drinking like a fish, I can go on like I have been.  Some day my body is going to say "stop, I can't take it anymore!" and then the cancer takes over.  

There is no way to plan for this. That's the hardest part. I agree with all of the posters above. 

Dx 8/15/2008, IBC, 6cm+, Stage IV, mets, ER-/PR-, HER2-
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May 9, 2012 10:54AM ElaineD wrote:

Your onc can't give a prognosis, so I don't know how you think we can do this? I'm sure you will read tales of people beating the odds-and whilst they can be a comfort it's a bit like living in denial-hoping that you will be the 1 in however many millions. Of course, someone does have to beat the odds, and your wife may be that 1 person. But I personally think that your onc is correct  in refusing to give you a prognosis. If, for example, she said 5 years (and I picked that number at random), and your wife detriorates as quickly as she improved-then you may hold her responsible-believe me, asking for prognosis is a very hot chestnut. I have never done so-I probably will when all treatment has been exhausted-but until then it seems a poinless exercise, as there is no way of making plans around this disease. We simply have to be flexible.

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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May 9, 2012 11:00AM, edited May 9, 2012 11:02AM by texasrose361

Like everyone mentioned it varies so widely from person to person it is hard to put a real prognosis on this. I was also given the 18-24 months spiel which i surpassed in dec. (18mo) and will exceed in july (24 mos). And you're right the Drs only quote the stats, because they DO NOT have the ablity to tell how well she will do. But with that being said...

We all respond differently to our treatment. I did chemo first just taxotere and had awesome results, first became stable for about 9 months then NED for nearly a year before i had progression- i am on my second go with chemo (Gemzar this time) i feel wonderful and i am handling it well thus far. 

And as you've prob read there are a few women here that are 10+ years past their diagnosis, so try not to focus on the 2 year mark. That type of worry will eat at you. Just focus on being there for her to get through treatments. 

BTW i am only 29, i was 27 when dx'd  

Children 17g, 7g, 7b, 5b :) Mets to ribs, sternum, femur, esophagus, retroperitoneal LN, and lungs. Mi vida en rosa... حياتي باللون الوردي... Mo shaol i bándearg... 我的生活在粉紅色.. Pembe Hayatım.. Ma vie en rose.. החיים שלי בוורוד.. Моя жизнь в розовом

Dx 7/22/2010, IDC, 6cm+, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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May 9, 2012 11:39AM pnut166 wrote:

I totally understand what you`re saying about the onc putting a number on this, and then being held responsible. I know a lot of people view these things this way. But with our experience working in healthcare, we know she can`t put a definite number on anything. And we`re not the kind of people that would worry or give up if a number was put out there - again, I understand a doctor`s hesitancy in these situations. We`d just like an idea; to assist us in planning for our son`s future in relation to his condition, things like that. It`s certainly very inspiring to hear all of your stories, and I thank all of you for sharing them !

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May 9, 2012 01:16PM nancyh wrote:

When I got my stage 4 diagnosis, my onc said, "There is a lot we can do to keep you around for a long time."  She didn't define how long, just that there were many treatment options.  Another oncologist I know said, "Women with metastatic breast cancer tend to live a long time."  It sounded odd to me when she said it, but I think what she meant is relative to other cancers, like say aggressive pancreatic, liver or brain cancer, we tend to do well, often times for years.

I remember when I was first diagnosed stage 4 with tons of mets all over the place, I questioned whether I'd make it a year.  Once I hit the one year mark, I thought wow, I'll make it at least 5 years, then I had a couple progressions and doubt crept in again.  So, I think the reason we're all so elusive about giving even a ball park date range is because it is more a discovery process over time.  You get some wins under your belt, then have setbacks.

One of very wise ladies on the boards said she was going to live like she had 5 years.  She's a smart gal, so she certainly knows things could turn on a dime, but she thought 5 years was as good a ballpark guess as anything. 

Stage 4 in 2009, mets to liver, lungs, bones, and brain.

Dx 8/12/2002, IDC, 1cm, Stage IIb, 3/12 nodes, ER+/PR+, HER2-Dx 4/2/2007, IDC, 1cm, Stage II, ER+/PR+, HER2-Dx 9/1/2009, IDC, Stage IV, mets, ER+/PR+, HER2-Chemotherapy 10/01/2002 Adriamycin, CytoxanChemotherapy 01/01/2003 TaxolHormonal Therapy 05/01/2003 TamoxifenRadiation Therapy 05/01/2003 ExternalSurgery 05/01/2007 Mastectomy (Both)Chemotherapy 06/01/2007 Cytoxan, fluorouracil, methotrexateSurgery 05/01/2008 Reconstruction: Tissue expander placement, Latissimus Dorsi flap (Both)Targeted Therapy 09/01/2009 AvastinChemotherapy 09/01/2009 AbraxaneHormonal Therapy 06/01/2010 FemaraChemotherapy 09/01/2011 XelodaHormonal Therapy 01/01/2012 FaslodexChemotherapy 06/01/2012 NavelbineChemotherapy 05/01/2013 GemzarHormonal Therapy 06/01/2013 AromasinTargeted Therapy 08/01/2013 AfinitorChemotherapy 10/28/2013 Halaven
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May 9, 2012 05:21PM NNBBFL wrote:

Thanks for your post Nancyh. As one also with a recent diagnosis it is great to see posts from others who have pushed that 5yr. mark and past. It validates that numbers are just that--numbers.

Dx 11/23/2011, IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-Hormonal Therapy 04/02/2012 ArimidexHormonal Therapy 05/15/2013 Aromasin
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May 9, 2012 08:26PM, edited May 9, 2012 08:27PM by TheDivineMrsM

I had always been pretty healthy until the bc diagnosis in my early 50s.  Up till then I told myself I'd probably live to 100.  I had a grandma who lived till 102 and a grandfather who lived till age 95.

Enter the stage iv diagnosis.  Suddenly those 40-some years I thought I still had disappeared.  I well remember the onc telling me about the bone mets and then saying "I have patients who live years with bone mets".  I stared right into her eyes and said, "Define 'years'".  Oh I was so proud that I had the wits about me in that life-changing moment to ask that question.  Because her definition of 'years' and my definition of 'years' could be two different things.  She said, 7, 8, 10 years.  One of her patients was going on 15 years.

On that day of the diagnosis, to me, that was not enough years!  Since then, I have had to learn to live much more in the moment. It's been almost one and a half years now since I found that lump. Five years might be good, but I still want 40 more.

Once I got the diagnosis, it took months to adjust to the new reality. I find I readjust to it from time to time.

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~ radiation~arimidex~~Enjoy life more because of the uncertainty not less.

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May 9, 2012 09:06PM Cindyl wrote:

The wife of a friend of mine was "given" 6-12 months at dx.  She actually lived 10 more years.  Got to see both of her boys graduate high school.  She didn't get long enough but she got more than she expected.  As it happens she didn't die of the cancer. Ironic and very sad.

Stay calm, have courage and watch for signs.

Dx 2/11/2012, IDC, 3cm, Grade 1, 0/7 nodes, ER+/PR+, HER2-Surgery 03/01/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)Radiation Therapy 04/16/2012 ExternalHormonal Therapy 05/23/2012 Tamoxifen
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May 9, 2012 09:38PM JeninMichigan wrote:

I agree with all the others that no one knows for sure and doctors cannot and should not play God.   My first doctor said I have an 8 percent chance of living 5 years.  My second and current doctor said I will live a long life and that I have a chronic disease and will always be in some form of treatment.  However, with any chronic disease it is all in how we fight the battle.    I was Stage IV from the start with liver and bone mets.   I passed my four year mark in February and have been NED now for nearly four years.   I am always begging for just one more year  before progression but I don't let it encompass who I am.   I also love living in denial and I often believe I will be the one that will live another 40 years.  

Dx 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+/PR-, HER2+
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May 9, 2012 11:50PM pnut166 wrote:

Got her tumor marker back today - down to 42 ! 64 last week, over 2k when treatment started in January. The onc just says " You`re doing good" without elaborating, so I don`t really know how to read "good". The nurses, however, seem truly excited and surprised - a good sign, I take it ?

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May 9, 2012 11:59PM texasrose361 wrote:

Good to hear that! Yup that is "good"

How is she doing otherwise, like with her side effects ect.... 

Children 17g, 7g, 7b, 5b :) Mets to ribs, sternum, femur, esophagus, retroperitoneal LN, and lungs. Mi vida en rosa... حياتي باللون الوردي... Mo shaol i bándearg... 我的生活在粉紅色.. Pembe Hayatım.. Ma vie en rose.. החיים שלי בוורוד.. Моя жизнь в розовом

Dx 7/22/2010, IDC, 6cm+, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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May 10, 2012 06:51AM ma111 wrote:

Very good sign that they dropped so much already.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+

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