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Topic: Stage IV ~ Really Scary Now...Liver Mets Too!

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 18, 2012 11:41AM

zendagirl wrote:

Hi everyone,

I was originally diagnosed in the spring of 2005 and went through the chemo, surgery and radiation.  Then, I was diagnosed stage IV in the fall of 2009, and I have been sailing along fairly well with only bone mets.  Last Friday I recieved bad news, I now have 4 spots on my liver.  On the bright side, they are on the small side.  My oncologist laid it out on the line statistically and said that I may have a couple of years.  Ugh.  I've been able to stay pretty positive, but it's getting harder.  I am married and have two children ages 10 and 7.  I want to have many more years to watch them grow, but I've seen the scary statistics.  Anyone out there with liver mets that have out lived the 2 year death sentence?  I am sure there are, but would love to hear from some of you.

I have been reading various posts out here for a while, but decided it was time to jump in, register and post.  Peace and strength to everyone.

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May 18, 2012 12:05PM Moderators wrote:

Hi Zenda,

We're so sorry to hear this news! Thank you for posting and reaching out; you'll surely be getting some really positive and inspiring posts soon from other ladies here who're going through what you are.

(((Hugs)))

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...

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May 18, 2012 12:15PM Mzmerz wrote:

Zenda

I am so sorry.  I don't have anything to add, but you sound like a strong person.  I also have young ones, my youngest is 8, and I want to see how she grows up!  Ignore the stupid 2 year stat, you are not a stat, you are a person, and you can smash the stat!

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 18, 2012 12:21PM ibcmets wrote:

Zendagirl,

Very sorry about the liver progression.  I hope someone experienced with this posts shortly.  I do have bone mets from the start, but not liver.  I still get scanned every 6 months and I'm sure they will be watching you more closely now.

Terri

6/2009: ibc,stage IV bone mets, ER/PR+, Her2-, 1/2011: BMX/Recon, Femara & Zometa;10/13 Aromasin/Afinitor

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May 18, 2012 12:29PM andreal wrote:

Zendagirl,

I never post but just wanted to let you know that I was diagnosed with liver mets FEB08.  They said I probably had 1 or 2 years, but I'm now past the fourth year mark.  I started with the hormonals, and then got 1 and 1/2 years out of Taxol/Avastin, and have most recently been on Abraxane.  I have 2 children who were almost the same age as your's when they found the liver mets, so I share your pain.  They are now 12 and 10.  I so hope that we can be there for our kids for a much longer time!  My doctor says there are lots of options!

Dx 2/12/2004, 2cm, Stage IV, 3/20 nodes, ER+, HER2-
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May 18, 2012 12:37PM sincitydealer wrote:

Hi Zendagirl,

My Mom has had liver mets for over two and a half years now, and she's 84-years-old.  I wouldn't pay any attention to those stats.  They're old, and there's new treatments that have been developed in the past few years.

I hope Marybe pops in here soon.  I think she's been living and doing well with liver mets for around 14 years.

Peggy

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May 18, 2012 01:07PM reesie wrote:

I've had liver mets since Dx (along with lung, bone, skin, pleura) in Oct 2010 so I'm almost 2 years now and my lung,skin, and breast tumors are resolved, one pleural effusion resolved, the othe smaller, liver smaller and bones healing, progressed, now healing again. I'm actually doing really well right now and plan for any more years :)

Marie - It's A Great Day To Be Alive. Dx 10/29/2010 ER+/PR+, HER2- Stage IV mets to bones, liver, lungs, skin, pleural effusions

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May 18, 2012 01:46PM Suebus wrote:

I have been living with liver mets for 2 years. I feel great, the liver tumor has shrunk and they dont even mention it on the PET/CT scans any more. I am still on hormones, tamoxafin for two years and I just changed to Femara due to slight progression on my hip bone. Dont look at stats it will make you crazy.

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May 18, 2012 01:57PM rkt wrote:

Dear Zenda,

 I am working on the two years - I had liver mets show up last October.  Have been through arimidex (17 months), aromasin (8 months), tamoxifen (13.5 months), and am now doing weekly taxol (3 weeks on, 1 week off).  First scans (Jan) after just two cycles of taxol showed liver was clear, same thing with scans in March - I head to Houston for scans next week.  The move to chemo was scary - I did have a biopsy and found that the receptors on the liver mets were same as original tumor, so hopefully, I will be able to make the move back to a hormonal (I think there is one left I haven't tried) in the future.  Are they planning to biopsy your mets?  My doctor said it wouldn't change my current treatment (she wanted me to move to chemo), but I argued that it would be information that would help with the next treatment decision, so had it done.

Will keep you in my prayers,

Becky

Becky, Stage IV, bone mets, ER+/PR+, HER2-, diagnosed June 2008, right mastectomy May 2009, 0/13 nodes, pleural effusion May 2011, mets to liver October 2011

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May 18, 2012 02:04PM justjudie wrote:

Hey Zendagirl,

I was diagnosed as Stage 4 with extensive bone and liver mets just over two years ago. I am doing well and living my life. Im surprised your onc gave you that statistic...there are many of us on this board who are holding our own with liver mets. I hope Marybe responds to your post. I can't recall exactly how long she has had liver mets but its like 10 or 12 years, I think!! A lot depends on how well you Respond to treatment. And there are many. Hopefully you will do well and be with your children for a long time to come.

Judie

Judie

Dx 3/31/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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May 18, 2012 02:12PM chrissyb wrote:

Hi Zendagirl,

I don't have liver mets (yet) but there is a wonderful lady by the name of Marybe who has had liver mets for many years.  She is an inspiration to everyone with her strength and determination and I know she gives not just the liver metsters hope but all who read her posts.

Please ignore the 2 year stat that you have been given, I think they say that to everyone and is sooooo outdated it should be banned!

Love n hugs.  Chrissy 

I found my peace which gave me strength. 52 at dx. (Sugar Glitter Cheeks)

Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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May 18, 2012 02:24PM zendagirl wrote:

Yes, we are doing a biopsy. In fact, I had that done on Wednesday along with a new PET scan. Hoping my receptor status stays the same.

I know there are more chemo options to try, but it's still scary. :(

I don't know since I was originally diag. in 2005, and we hit it hard back then if that affects my outcomes. (?) It appears many here were diag. stage IV right out of the gate. However, since I'm new out here, I may be missing something. I hope that makes sense....

Dx 4/2005, IDC, Stage IIIc, Grade 3, 13/23 nodes, ER+/PR+, HER2-Dx 11/2009, IDC, Stage IV, Grade 3, ER+/PR+, HER2-Chemotherapy 04/15/2005 Adriamycin, Cytoxan, TaxotereHormonal Therapy 08/01/2005 FemaraSurgery 08/25/2005 Mastectomy (Both)Radiation Therapy 10/03/2005 ExternalChemotherapy 03/15/2011 AbraxaneTargeted Therapy 03/30/2011 AvastinChemotherapy 05/14/2012 Doxil
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May 18, 2012 02:30PM mthomp2020 wrote:

I was stage IV at the get go with bone mets and too many liver mets to count.  The liver mets were gone after 6 A/C and 6 Taxol/Herceptin treatments, and haven't returned as of scans this month.  Wish I could say the same for the bone mets!

I noticed that you're HER2+, and you didn't list Herceptin as a treatment.  Have you had Herceptin yet?  If not, it could make a huge difference in your results with chemo. 

Marsha

Dx 5/21/2007, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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May 18, 2012 02:36PM zendagirl wrote:

I'll have to check my records on my HER2 status. I may have that listed wrong.....

Dx 4/2005, IDC, Stage IIIc, Grade 3, 13/23 nodes, ER+/PR+, HER2-Dx 11/2009, IDC, Stage IV, Grade 3, ER+/PR+, HER2-Chemotherapy 04/15/2005 Adriamycin, Cytoxan, TaxotereHormonal Therapy 08/01/2005 FemaraSurgery 08/25/2005 Mastectomy (Both)Radiation Therapy 10/03/2005 ExternalChemotherapy 03/15/2011 AbraxaneTargeted Therapy 03/30/2011 AvastinChemotherapy 05/14/2012 Doxil
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May 18, 2012 03:03PM cheryl1946 wrote:

Go to members list and put in Marybe;scroll down and she is 13th on the list. It has been 14 years that she's had liver mets.

Her page is inspiring.

DX 7/6/11 with stage IV at the start;mets to several bones No surgery,rads,or chemo letrozole failed after 17 mos. 2 other hormonals failed; now on to xeloda

Dx 7/6/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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May 18, 2012 04:04PM LouiseBogle wrote:

I'm one year and 6 months with liver cancer and everything crossed I'm not in my final 6 months of life!! Too much to do! Joking aside, like you I have two kids 8 and 9, no one has ever given me a timeframe.
Everyone's cancer is different and if they can't tell you how it started, or how to definitively fix it well then how the hell does anyone know how it's going to behave in your body? Stats are made up of averages and that includes highs and lows.
Thanks Andreal for giving us your story, I find it really inspiring that you are 4 years with mets.
Good luck with everything Zendagirl!

Dx 12/7/2010, ER+, HER2-
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May 18, 2012 04:27PM alesta29 wrote:

Hi Zendagirl

I'm another stage IV from the start with liver mets but you'll find that the liver metsters on the boards are a mix of primary diagnosis and progression.

I'm almost a year out. Living my life, working 2 jobs and 2 kids 12 & 14. Statistics - MEH Yell Give 'em a wide berth.

One thing that you quickly learn about Stage IV is that it is such an individual disease and what works for one person may not work for another so it's all about finding the treatment that works for you.

I know there is a woman who is over 8 years out with liver mets so hang on in there - why shouldn't that be you too?

Laurie x 

Stay in the present and live each day as it comes. Stage IV from the get go June 2011. ER/PR+ HER 2- Liver, lung, bone, lymph, brain, peritoneal and pelvic mets - Man this list keeps getting longer...

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May 18, 2012 05:59PM Chickadee wrote:

Two years and counting........as others have said ignore the Internet stats. Check the bottom of your feet, bet there is no expiration date!

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 18, 2012 06:25PM Anko66 wrote:

Zendagirl, hugs to you.   Liver mets are scary but hopefully this board has given you some hope. 

I can't believe your doc told you two years.  That makes me mad!

Anne

Dx 12/16/2011, IDC, 2cm, Stage IV, Grade 3, mets, PR+, HER2+
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May 18, 2012 06:26PM CoolBreeze wrote:

I think any doctor who gives out those dire statistics should have their license in jeopardy.  Way too many people don't fit that narrow criteria and NOBODY know how long anybody has.

Marybe is on year 8 with liver mets.  There are several others here too that have outlived that number. 

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 18, 2012 07:02PM ma111 wrote:

I agree with the above! Ignore the stats.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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May 18, 2012 07:09PM hydeskate wrote:

Statitics are crap.  I was dx out of the gate with METS to my Liver five or six spots  the size of a penicl head, 2 about the size of a nickel and 1 the size of a quarter.  That was 2008, so that would be 4 years and 6 months.  I also had mets in my lungs left lung was covered in tiny spots and I had like 3 spots in right lung. And I have been off ALL treatment, a chemo holiday since OCT 2009, only thing I take is pain pills, muscle relaxer, naproxen, and evoxac. Way too many surgeries in a short period of time.

Crossing my fingers I stay that way, my scan is coming up in about 3 weeks. Although Chemo wouldn't be bad becasue my immune system would go offiline then it would stop attacking me, I was dx with Sjogren's syndrome three months after finishing chemo. Basically when I was on Chemo I had no symptons, 3 month after no more chemo, dry mouth, dry eyes, dry throat, and the doctors...well good news its not cancer...yeah thanks 

http://heidiy13.blogspot.com/

Dx IDC, 1cm, Stage IV, Grade 3, 2/20 nodes, mets, ER-/PR-, HER2-Chemotherapy 03/08/2008 AbraxaneChemotherapy 10/25/2008 AdriamycinSurgery 02/12/2009 Mastectomy (Both); Lymph Node Removal (Left)Radiation Therapy 07/01/2009 ExternalChemotherapy 08/04/2009 Abraxane
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May 18, 2012 08:04PM zendagirl wrote:

Thanks everyone! This is exactly why I signed up for this site. :)

I think the only reason my onc gave those stats is so I realize how serious it is. That way I can fit in the things I want to do, before things take a turn. You know, don't put stuff off.

So, I hope that I can cram a bunch of trips in, then live for many years! That would be sweet.

Dx 4/2005, IDC, Stage IIIc, Grade 3, 13/23 nodes, ER+/PR+, HER2-Dx 11/2009, IDC, Stage IV, Grade 3, ER+/PR+, HER2-Chemotherapy 04/15/2005 Adriamycin, Cytoxan, TaxotereHormonal Therapy 08/01/2005 FemaraSurgery 08/25/2005 Mastectomy (Both)Radiation Therapy 10/03/2005 ExternalChemotherapy 03/15/2011 AbraxaneTargeted Therapy 03/30/2011 AvastinChemotherapy 05/14/2012 Doxil
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May 18, 2012 08:21PM steelrose wrote:

That's how I'm thinking too, Zenda. I'm cramming in as much as I can right now while I'm able. Living fully is a great idea, cancer or not! I was diagnosed Stage IV from the start... liver/spine/sternum. I had anti-hormonal, chemo, then RFA on my liver. Maybe you would be a candidate for RFA? If not now then maybe after further treatment. It's worth asking your oncologist about anyway. I had RFA in Dec. '10 and have been NED since. There are many treatments out there that can shrink those liver mets... remain hopeful and do not pay any attention to those stats!!!!

xoxo

Rose. 

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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May 18, 2012 08:28PM dawn16 wrote:

First of All,  I'd like to say you're onocologist is an IDIOT!!!!!!!I really don`t get it when these experts give us an expiration date.  Like they are F/$(ing God!  How could they even begin to tell you at this point.  I was dx in 2006  Got mets to the bones in 2009,  2010  6 large mets to the liver.  Theyblasted those out At present I`m down to 2x2mm liver mets, that aren`t really causing me any trouble.  I<m doing a new chemo (that seems ok so far)  to try to get rid of them, but my onc, in her opinion right now and with the way I feel don`t forsee any problems.   She`s had patients 0 12 15 years.   Her words are `:I am treating you for a chronic disease, unless this decides to be uncooperative and we start to have serious problems we are going to get along fine.  I`ve been 3.5 years now but I`m scanning every 3=4 months and watched very carefully, so that they do not get out of hand and as soon as anything changes, we switch up.  We don`t wait until things are spirally out of control.  A couple of times we opted to stop and take a 6 week break, then started with something new.  It`s working so far and I`m living a relatively normal quality of life.  I also have an 11 and 7 year old, who are very active.  I don`t miss anything, I`m rarely sick,  my husband works away from hom 6 weeks away, 6 weeks at home, I exercise and try to keep things as normal as possible.  I do get hot flashes and night sweats, and when I feel tired, I rest during the day when the kids are at school.  I opted to quit my job and stay at home with my kids.  My motto:  I don`t think about it unless I have to.  It`s not going to take over my life and if it does take my life in the future, it`s not getting one more minute that.  My thoughts to cancer is:  You can have a little part of my body as long as cancer lets me have a relative quality life.

Hang in there! Go about your life, do what you have to do and enjoy watching your children grow up.  Don`t let anyone or anything take that away. 

Dawn

Dawn

Dx 12/10/2006, IDC, 5cm, Stage IV, Grade 3, 8/18 nodes, mets, ER+/PR+, HER2+
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May 18, 2012 08:46PM midnight1327 wrote:

I don't think giving somebody a time limit for their final departure is  very helpful. I would rather live each day to its fullest and enjoy it. None of us are guaranted tomorrow, even the doctors what ever our circumstances are.  Our time is precious and we need to make the most of it. I think it can be mentally destoying giving somebody a time frame, but we need to choose to live and beat the odds.  3 cheers for life, we are are worth it girls.

Dx 8/12/2011, IDC, 1cm, Stage Ia, Grade 3, ER+/PR+, HER2-Surgery 08/31/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Radiation Therapy 10/10/2011 ExternalHormonal Therapy 11/23/2011 Tamoxifen
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May 18, 2012 09:05PM radiant wrote:

I've had liver mets for 2.5 years / A HIGH Tumor burden 2.5 years ago. I don't think it's accurate to say you have 1-2 years left - especially since you r her2+.

Pertuzamaub is coming out in July and fingers crossed tdm1 will be here in Jan. For MANY stage 4 liver mets bc'ers tdm1 has brought them to no evidence of disease for years. Heck - lots of women go into remission on Navelbine.

Your onc should NOT have told u that - it's not true. No one knows where it goes from here / and alt tx CAN and HAS worked for MANY.

HTH,

Kim

Kim, Stage IV, triple +. First dx 2005, stage 3C, mets 2010

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May 18, 2012 11:27PM JillThut wrote:

Both liver and bone mets were discovered in me Oct 09. My then onc said without treatment.."6-9months" and with treatment "we might be able to triple that". Well i seriously considered not doing treatment because I was already nauseated from the swollen liver and in pain...so i didn't want to live out the rest of my days sick from chemo. So glad i opted for chemo! It was only bad in the beginning...been doing various chemos since..feel well the majority of the time...and still here! :). And my liver mets are extensive.

bone, liver and brain mets Jill

Dx 10/6/2009, Stage IV, metsDx IDC, Stage IV, Grade 3, 0/8 nodes, mets, ER+/PR+, HER2-
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May 19, 2012 02:46AM cnanthia wrote:

Hi there.  I had liver and bone mets at diagnosis in 1/07.  Got chemo and Herceptin.  Still on Herceptin.  Have been in remission since chemo ended.  It's going on 5 1/2 years.  They thought I had 2 to 3 years.  Keep the faith.

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May 19, 2012 08:29AM zendagirl wrote:

I'm actually HER2-. I put it down wrong when I first created my signature. I have changed it. However, I am going to double check with my onc the next time I see him as I may be miss reading my reports.

Is it better to be positive or negative with HER2?

Dx 4/2005, IDC, Stage IIIc, Grade 3, 13/23 nodes, ER+/PR+, HER2-Dx 11/2009, IDC, Stage IV, Grade 3, ER+/PR+, HER2-Chemotherapy 04/15/2005 Adriamycin, Cytoxan, TaxotereHormonal Therapy 08/01/2005 FemaraSurgery 08/25/2005 Mastectomy (Both)Radiation Therapy 10/03/2005 ExternalChemotherapy 03/15/2011 AbraxaneTargeted Therapy 03/30/2011 AvastinChemotherapy 05/14/2012 Doxil
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May 19, 2012 08:40AM lilylady wrote:

Stage 4 from the start (3/11)  with a tennis ball sized liver tumor-6 TCH completely dissolved it. All subsequent scan shows liver still cancer free. Hav mets in other places but healthy as a horse.

  My original onc told me  I wouldn;t live 3 months...and it wasn;t worth the time and resources to treat me because I had so much cancer. I was working 60hrs a week, playing tennis 3 times a week and taking care of elderly parents...wasn't ever sick.  WHAT AN IDIOT!!! Like the other ladies have said  people respond differently-people are beating the odds every day. Don;t go down that road-stay in the now and live your life---and maybe get a new doctor?

Lilylady

Dx 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+

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