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Topic: Just Diagnosed Stage IV BC Mets to Liver - Doc says 6 months!!

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. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jan 1, 2013 12:57AM

plamont wrote:

Can anyone tell me that I have hope of enduring this battle longer - I am not ready to go -  I was diagnosed in late October 2012 with Breast Cancer - surgeon very flippant about the whole matter saying my tumor was only 2.5 cm and all I needed was a lumpectomy - I kept telling him I was in a lot of pain and he told me it was all in my head - people who are recently diagnosed with breast cancer imagine all sorts of pain -  after a battle with the surgeon - I went to get an mri in the U.S. as no tests were ordered in Canada - I also got an ultrasound which showed no spread of cancer on my organs - - results showed a 9cm tumor - so I flew back to Canada and he rescheduled a simple mastectomy on Nov 12th - again saying it wasn't necessary as mri's are often wrong and he didn't believe my tumor would grow that fast - well I have invasive lobular cancer - he only removed 7 lymph nodes but 6 were infected and my tumor was 7cm - I finally got to see an Oncologist on Dec 21st - I told her of my pain - she ordered a CT scan and xrays - showed I have numerous spots on my liver - she suspects its cancer and has ordered an ultrasound in 3 days as its New Year's - so staff is slim to none.  She prescribed me 200 pills of Oxi for the pain.  I was suppose to start dose dense treatment on Jan 2nd - but she says we need to hold off - as this may not be the best chemo for the breast cancer as she suspects it has now spread to the liver - so she wants to retest by ultrasound - she says she will have the results on Jan 7th - and another week of waiting won't make a difference - I have been hearing that for months - I have been waiting to do chemo since Nov 12th - I wanted to do chemo before removal of the breast - but the surgeon said that was wrong and I needed to remove first - I never got to meet with an Oncologist in Canada so I didn't get proper advise - although the Oncologist now says it was most probably right to remove the breast first - I don't think they will say otherwise - as what is done is done - I can't seem to see that was correct as it just gave time for the cancer to spread to my organs. 

I was so upset today at hearing I have spots on my liver - she had told me I had a 68 percent chance of surviving the next 5 years on December 21st - but she now tells me with treatment I may only have about 6 months if it has spread to the liver - and it is hard to say.  She said there is no cure and they cannot operate as there are too many spots.  I can't stop crying - my children are devasted and my husband is stunned - 6 months ago I was swimming 50 laps a day and now I sit in pain hoping for a good day.  Is this really happening to me?   I read many of your notes on Liver mets and it seems that you ladies are coping - and some have had it since 2006 - Is this true?  You are my inspiration - I just want longer to spend time with my family - I'm too flippin young to go yet - just feel robbed - was suppose to take early retirement in 2013 - wanted my freedom 55 but not this way.  Any advise would be greatly appreciated.  Are there any good clinical trials ?-  I have found that you really do have to be your own advocate - its not the battle with cancer but the battle with the medical system to get diagnosed early and proper treatment.  God bless you ladies  I don't think there are any braver ladies than you all - I pray for you - unfortunately God doesn't seem to be listening to my prayers - but I'm not giving up and will keep praying

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Jan 1, 2013 01:45AM SPAMgirl wrote:

I was almost gone within my first 6 months because my 1st chemo didn't work. My onc felt my liver every week and scheduled my CT at 2 months instead of 3. Since it wasn't working, I only had about 2 weeks to live. They changed my chemo and it thankfully worked for me and I had tremendous regression in the first week. I don't want to scare you, but a lot of it is finding the right chemo. It's inexcusable that it's taken this long and they want to wait even longer.

I'm not in a very good mood because it seems like most of my friends on this board are starting the New Year in awful shape or with bad news. I have a lot of naughty words to call your doctors, but I'm going to be good.

Best of luck. I hope you find the right chemo and you will last much longer than 6 months.

mets to liver, bone and brain Radiation Therapy 3/6/2010 Breast, Lymph nodes Surgery 9/2/2010 Mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Chemotherapy 9/27/2010 AC + T (Taxol) Dx 2/20/2012, IDC, 2cm, Stage IV, Grade 2, 4/16 nodes, mets, ER+/PR-, HER2+ Hormonal Therapy 2/20/2012 Arimidex (anastrozole) Targeted Therapy 2/27/2012 Herceptin (trastuzumab) Chemotherapy 2/27/2012 Navelbine (vinorelbine) Radiation Therapy 3/17/2012 Bone Chemotherapy 4/6/2012 Halaven (eribulin) Hormonal Therapy 11/5/2012 Faslodex (fulvestrant) Targeted Therapy 11/5/2012 Herceptin (trastuzumab) Targeted Therapy 11/5/2012 Perjeta (pertuzumab) Chemotherapy 11/5/2012 Taxotere (docetaxel) Chemotherapy 4/1/2013 Adriamycin (doxorubicin) Chemotherapy 6/17/2013 Xeloda (capecitabine) Targeted Therapy 6/24/2013 Tykerb (lapatinib)
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Jan 1, 2013 01:46AM - edited Jan 1, 2013 09:08PM by KeepingFaith69

I am so sorry to read this.

I don't have any advice to offer other than stay tuned into this site as the women are knowledgeable, helpful and caring.

I am fairly new to this as well.
I offer you gentle Hugs and pray that there is a tx available to kick the cancers butt!!!

Pae xo. I surrender to God and the Angels and I choose PEACE. Dx 8/16/2010, <1cm, Stage 0, Grade 3, 0/13 nodes, ER-/PR-, HER2+ Dx 12/31/2012, Stage IV, ER-/PR-, HER2+
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Jan 1, 2013 02:22AM LuAnnH wrote:

grrr...I keep typing and this stupid program keeps deleting my responses.  I had a mascectomy first in 1999 because then that was how it was done.  My onc told me it was so they eliminated the large amount of disease and then used chemo & rads to fight off anything that got away.   Little good that did me.  Can you seek out a 2nd opinion?  I know you want to get the ball rolling but it is much better to be comfortable with your onc than to jump into something you are uncomforatble with.  You said you can to the US for scans, is it possible to come here for tx recommendation and have those tx at home if that makes you feel better.

The one thing I do know, there is no doctor that can tell you how long you have left unless you are within weeks of dying.  Have your cry and then put on your big girl panties and start finding a way to beat this.  Use us as a sounding board or a venting board, we are here for you no matter what!

LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jan 1, 2013 02:46AM Kaelia wrote:

I truly hate when doctor dare to put a time stamp on your life, especially when you haven't gotten a chance to a treatment/chemo yet. I would agree with LuAnn; a second opinion would be good because not one doctor has all the answers. From then on, they could start you on a tx and see how you do. I was diagnosed with liver mets about 2 months ago and have had 3 chemos so far, surgery (masectomy) will come afterwards for me. I see it's different for everyone. But again, please get some recommendations on a combo of chemos for you. 

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Jan 1, 2013 03:05AM JillThut wrote:

I agree you want to have an oncologist you can communicate well with.

I have been living with extensive liver mets since 10/09.

My initial onc said without treatment...6-9 months and with treatment we might be able to triple that. I am currently a year past his best prognosis.

bone, liver and brain mets Jill Dx 10/6/2009, Stage IV, mets Dx IDC, Stage IV, Grade 3, 0/8 nodes, mets, ER+/PR+, HER2-
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Jan 1, 2013 03:25AM Angela-R wrote:

Do not take the doctors dire words seriously. If at all possible, get a second opinion and find an oncologist you believe in. People live for years with mets. Do NOT lose heart, please.

I feel so much for you and your family, what a shock. Most of us have had a slower progression, and time to accept each development. Counselling can be a wonderful thing, as can anti anxiety medication. I hope you can find a medico you trust, even just your gp, and get started on a treatment plan.

Keeps us informed. You will always find a supportive ear here.

With love
Angela

Angela Dx 2/7/2009, IDC, 2cm, Stage IIIC, Grade 3, 16/18 nodes, ER-/PR-, HER2- Dx 4/1/2011, IDC, 1cm, Stage IIIC, Grade 3, 21/21 nodes, ER-/PR-, HER2- Dx 4/23/2012, IDC, 5cm, Stage IV, Grade 3, ER-/PR-, HER2-
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Jan 1, 2013 06:18AM HP_at_Perth wrote:

Dear lady, I know you are in a dark place at the moment because I have been there myself.  I have stage 4 BC with mets to bones.  Most important, pray to God for strenght and don't dispare as He will be with you everyday.  Please do some research on the internet about anti-cancer foods and cut sugar out of your diet completely immediately.  Also get some barley grass, spirulina, wheat grass and chlorella tablets to alkalise your body.  Do a pH test everyday and get your pH at 7.2.  Drink raw vegetable juice everyday made up of mostly carrots, and all green leavy vegetables.  Go 80% raw and 20% cooked.  Don't believe the doctor, life is not in his hands.  Do your research about food. If you need more info, post a reply.

You will make it, just believe, like me.

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Jan 1, 2013 06:26AM redwolf8812 wrote:

First of all, there's still a chance that those spots on your liver are from something else entirely (given the misdirection you've had so far, I wouldn't be surprised if they WERE something else).  Second of all, it sounds like the oncologist was giving you a worse-case scenario.  As you can see, there are many chemos that do work on the liver.  Also, there are other things besides chemo that you can do for the liver.  Check out this website:  http://beatlivertumors.org/Treatment_Options.html

Many women on these boards have been successfully treated with liver mets.  We may not make it to our desired age, but certainly way more than 6 months.

I encourage you to be your own advocate - do your own research, find out the pathology of the breast tumor - you want to know the receptors for ER, PR, & Her2neu.  Also, is there a family history?  The more info you have, the more questions you can ask your medical team.

As for God, don't give up on Him.  He loves you.  This isn't His plan for any of us, but unfortunately when evil entered the world, it ended up drizzling down to all of us.  But He gives us a way out of our turmoil - faith in His Faithfulness.  Consider this something you have to go through right now.  Eventually, things will look and feel better.  Keep praying.  Ask others to pray for you.  Storm the gates of Heaven!  Put the armor on!

Keep us posted.  We care. 

1 Peter 4:12-12 "Beloved, do not be surprised at the fiery ordeal which comes upon you to prove you, as though something strange were happening to you.  But rejoice in so far as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed."

- Penny

...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9) Dx 7/2010, IDC, 6cm+, Stage IIIA, Grade 3, 2/9 nodes, ER-/PR-, HER2+ Dx 11/2010, IDC, 6cm+, Stage IIIC, Grade 3, 2/9 nodes, ER-/PR-, HER2+ Dx 11/2011, IDC, 6cm+, Stage IV, Grade 3, 2/9 nodes, mets, ER-/PR-, HER2+ Chemotherapy 4/1/2014 Gemzar (gemcitabine) Targeted Therapy 8/20/2014 Herceptin (trastuzumab)
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Jan 1, 2013 09:31AM soleil505 wrote:

Being told that you have 6 months due to liver mets makes no sense to me.   Look at the site Redwolf mentioned.  Many of us have liver mets and live longer than 6 months.

If you have numerous liver mets, most docs would recommend some sort of chemo.  The right chemo can shrink the mets.

Sounds like you need the right doctor.

Take care

And I think to myself, what a wonderful world! Soleil Dx 4/4/2011, Stage IV, mets, ER+, HER2-
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Jan 1, 2013 10:08AM tlangston07 wrote:

I totally agree with everyone else..Get the right dr that you feel comfortable with..I was dx in Jan 12 with liver mets and chemo knocked them out..I now have some mets on my lungs and am doing chemo for them. We do not have a expiration date!!  Do not even think that. My onc told me as far as time goes that is between God and myself as it should be.  Please come here anytime and vent all you need..There are some wonderful ladies on here who understand everything you are going thru..Prayers!!

Terry

Dx 1/16/2012, IDC, 6cm+, Stage IV, Grade 3, 1/18 nodes, mets, ER-/PR-, HER2-
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Jan 1, 2013 10:19AM GoldenGirls wrote:

My mother, who had stage 3 breast cancer, went to see her doctor because of pain that wouldn't let up. And ultrasound on her liver found 2 spots that the report very clearly indicated looked to be cancer. A follow-up CT scan was done a couple of weeks later and it was clear. Her oncologist wanted to be absolutely certain, given that her initial test showed liver lesions so he ordered an MRI and found it to be nothing but fat. The pain was later determined to be caused by muscle strain.

Please don't lose hope! Along with the fact that many women on here do go on to live with liver mets, those spots still haven't been confirmed to be cancer so there's still a chance that they are being caused by something else.

((hugs))

Original dx was in 10/2001. Mets to bones and 2 supraclavicular nodes in 01/2013. Aromasin from 01/ 2013 - 01/ 2014. Xeloda started 01/2014 for extensive progression of bone mets. Xeloda for 19+ months. Currently on AC chemo.
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Jan 1, 2013 10:20AM barsco1963 wrote:

palmont - I was dx with mulitple liver mets from the beginning - 18 months ago! Do not let anyone give you a time stamp on your life. No one has a crystal ball, not even the drs. If it is mets, I pray that you will find a successful tx that will allow you a good quality of life.

It isn't knowing the worst, the worst is not knowing. Dx 5/30/2011, IDC, 4cm, Stage IV, Grade 2, 21/29 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 7/25/2011
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Jan 1, 2013 10:20AM - edited Jan 1, 2013 10:43AM by liv-

so sorry you have to go through this and having an onc that gives you little hope is just too detrimental, you dont deserve an onc with flippant mannerisms.

you need to find an onc that you have confidence in and feel comfortable to ask as many questions as you feel.

dont listen to all the negative and look around for the positive as there are many stage 4 ladies with liver mets for many years and dont look like they are going anywhere soon..

try and get your self together, you are here now and you will need to find the confidence and then you will be able to fight it.

you can do it, your in shock now but you will find the strength to fight this.

move on to another onc if you dont feel confident or not getting what you think you deserve...i certainly dont think you are getting handled appropriately and i would definitely be getting 2nd 3rd 4th opinions.

heres sending you a huge ((hug)) and some  poitive/ confident thoughts for you to get on with the fight.

XXxx

much Luv ~~~~~ xx Liv xx ~~~~~ ........ DX Apr 12 - IBC - 10cm -Trip Neg - Stage 3C - 17/24 nodes bad - Adriamyci Doxorubicin Docetaxel Cyclop - Tac Xeloda Nov + Navelbine Dec 2012 combined Chemotherapy 4/10/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Daunorubicin (Cerubidine, DaunoXome), Doxil (doxorubicin), Navelbine (vinorelbine), Taxol (paclitaxel), Taxotere (docetaxel), Xeloda (capecitabine) Dx 4/13/2012, IBC, 6cm+, Stage IIIC, Grade 3, 17/24 nodes, mets, ER-/PR-, HER2- Surgery 8/12/2012 Lymph node removal: Left; Mastectomy: Left Radiation Therapy 9/30/2012 Breast, Lymph nodes Chemotherapy 11/6/2012 Xeloda (capecitabine) Chemotherapy 12/17/2012 Navelbine (vinorelbine)
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Jan 1, 2013 10:38AM cheery wrote:

I'm sorry it's been traumatic experience for you and your family. The first 6 months to a year is the most difficult, I feel. Hopefully we can address your anxieties here and you can feel more at ease sooner. 

Please find an oncologist you feel comfortable with as he/she will follow you closely on this journey. We need to feel happy and well taken care of:) Having a doctor with poor bedside manners should be the last thing we have to deal with at this point. 

Just so you know, chemo treatment usually comes after surgery/biopsy as the oncologist will prescribe the chemo combo that best addresses the pathology of the tumour, eg ER/PR/HER2 status. Sometimes if you're ER/PR+, you may start off with hormonal therapy first (and hold off chemo). This is to stretch out the various treatments to the fullest so that you may mazimise your treatment options. 

I was diagnosed Stage IV with liver met in May 2008 and have been very blessed to have had a long run with NED (no evidence of disease/remission) for about 4 years until recently. I hope this will allay some of the anxieties that you're feeling. 

Rgds

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Jan 1, 2013 11:24AM Soteria205 wrote:

Plamont~I'm not stage IV. Because I couldn't lie for an hour a on hard MRI table for contrast ( degenerative disc disease), the radiologist wouldn't commit to saying no bone mets on the shoulder. But, I wanted to offer some hope too.

A friend of mine, who has been such an inspiration through my battle is stage IV. When Holly was diagnosed 10 years ago, her onc gave her 2 years to live with bone mets. That wasn't good enough for Holly, so she changed oncs. This one NEVER gave her a time limit. ( Doctors can't speak for GOD).

Holly is a lovely, lively, active, happy, lady who inspires everyone she comes in to contact with. She is in her 10th year of BC.

DON'T GIVE UP EVER!!!!!

Blessings
Paula

FIGHT LIKE A WARRIOR!!! Dx 7/27/2012, IDC, 5cm, Stage IIIC, Grade 1, 13/16 nodes, ER+/PR+, HER2- Surgery 10/22/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/7/2012 AC + T (Taxol)
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Jan 1, 2013 11:44AM SPAMgirl wrote:

There's a good chance with the right chemo. I believe in the phrase, 'expect the best, prepare for the worst.' You need to make sure that your will and all of those other things are completed now and your friends and family know your wishes if anything dire happens to you. Again, expect the best, but these are all things that need to be done if you die in 6 months or 30 years from now.

mets to liver, bone and brain Radiation Therapy 3/6/2010 Breast, Lymph nodes Surgery 9/2/2010 Mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Chemotherapy 9/27/2010 AC + T (Taxol) Dx 2/20/2012, IDC, 2cm, Stage IV, Grade 2, 4/16 nodes, mets, ER+/PR-, HER2+ Hormonal Therapy 2/20/2012 Arimidex (anastrozole) Targeted Therapy 2/27/2012 Herceptin (trastuzumab) Chemotherapy 2/27/2012 Navelbine (vinorelbine) Radiation Therapy 3/17/2012 Bone Chemotherapy 4/6/2012 Halaven (eribulin) Hormonal Therapy 11/5/2012 Faslodex (fulvestrant) Targeted Therapy 11/5/2012 Herceptin (trastuzumab) Targeted Therapy 11/5/2012 Perjeta (pertuzumab) Chemotherapy 11/5/2012 Taxotere (docetaxel) Chemotherapy 4/1/2013 Adriamycin (doxorubicin) Chemotherapy 6/17/2013 Xeloda (capecitabine) Targeted Therapy 6/24/2013 Tykerb (lapatinib)
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Jan 1, 2013 12:13PM Surly wrote:

I've had liver mets at least 2 3/4 years and likely longer, before diagnosis. It's ridiculous for a doctor to give a prognosis before you've even been treated. There is no reason to think that chemo won't work on you and buy you many years. Do NOT let any health care professionals write you off as hopeless. If they are saying there is nothing to be done, they are wrong. You should seek second and third opinions. Since you've just been diagnosed, you are still learning all the options available. First and foremost, you need to find out if you're ER/PR positive or negative and whether you're Her2Neu positive or negative. Your chemo options will stem from there. This website has a lot of simplified straight-forward information about all the kinds of breast cancer and the various treatment options.

I don't know the Canadian health system, but there are many women on the boards in Canada who might be good resources for you about working the system to your advantage.

Also, be wary of posters who have no profile or diagnosis or treatment info and only a few posts who try to convince you to try certain diets or to cut sugar out of your diet. I'm not sure what they gain from tormenting people in crisis, so just ignore them.

You'll find a lot of good advice and support here. Good luck! 

Pardon me, hounded hope, for laughing from time to time. . . . Mets to bones, liver, and lungs. Brain mets treated with gamma knife. Dx 3/25/2010, IDC, Stage IV, mets, ER-/PR-, HER2+
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Jan 1, 2013 12:26PM Chickadee wrote:

Surly, agree with your take on the one post wonder. That has no place in this discussion.

With my first progression to the liver I was also devastated but here I am 18 months later and functioning just fine. Several treatments didn't work for long. The one I'm on Xeloda has been the most effective and has kept my liver mets stable since last April.

Next time you see these Drs. ask them about targeted therapies (RFA, SIR Spheres, cryoablation, etc.) for the liver in addition to the chemos that are most effective. If they can't thoroughly explain the possibilities of these therapies then you might want to find an interventional radiologist who can. You haven't even begun to fight. Don't give up hope. And don't worry about having a treat when you want one. Chocolate heals all! Well emotionally anyway.

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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Jan 1, 2013 12:41PM marywh wrote:



i dont have any real words of wisdom, other than you do not have an expiration date stamped on you and your onc. sounds a little pessamistic(sp?). and dont look at percentages and statistics, we are all so different. Hugs to you.

Dx 1/2008, IDC, 2cm, Stage IV, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 6/15/2008 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/1/2008 Breast Surgery 8/5/2011 Mastectomy: Left Chemotherapy 8/25/2012 Abraxane (albumin-bound or nab-paclitaxel), Carboplatin (Paraplatin) Chemotherapy AC Chemotherapy Doxil (doxorubicin), Xeloda (capecitabine)
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Jan 1, 2013 01:12PM gritgirl wrote:

I can talk about this. My liver mets were all over my liver (diagnosed 2/2012).  I was very lucky that my breast surgeon hooked me up with an excellent oncologist.  My oncologist wouldn't walk stats with me. She says they just don't apply, everyone's cancer is individual.  Screw the stats.

I had 5 months of weekly Taxol and am now stable.  I am HER2+ so get herceptin every 3 weeks. I pray I stay stable.

The best things to do in any illness is, find the best doctor you can, do not look at the stats, and fight like hell to get the tests and treatments you need done on a timely basis.  Doctors and medical folks mean well, but some just have bad bedside manner, and this is frankly a job for them.  For us, this is our lives. Fight and don't stop fighting. Screw that doctor. What an idiot.

www.curetoday.com/community/su... Dx 1/3/2012, IDC, 4cm, Stage IV, Grade 2, mets, ER-/PR-, HER2+ Targeted Therapy 2/10/2012 Herceptin (trastuzumab) Chemotherapy 2/10/2012 Taxol (paclitaxel) Surgery 11/6/2012 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right)
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Jan 1, 2013 01:21PM Fitztwins wrote:

The biggest thing I have learned is that you just don't know. We don't know who is going to respond and to what treatment. Being diagnosed with mets from the get go, your mets have a really good chance to have a complete response to 1st line chemo. (which means knocking them way back, not a cure, but definite regression!)

Depending on your pathology, there are a lot of good 1st line combos that are out there. Do your research.

All hope is not lost. I agree with the others,it is  time for a new oncologist. Any doctor or intern that gives a dire prognosis with this disease is ill-informed and should not be working with BC patients. There are many women here living with liver mets 2,4,6 years and who knows many more out there living longer!

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/19/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 2/1/2005 AC + T (Taxol) Radiation Therapy 5/1/2005 Breast, Lymph nodes Targeted Therapy 6/1/2005 Herceptin (trastuzumab) Hormonal Therapy 1/1/2006 Femara (letrozole) Hormonal Therapy 6/2/2008 Aromasin (exemestane) Targeted Therapy 7/1/2008 Herceptin (trastuzumab) Hormonal Therapy 6/15/2013 Arimidex (anastrozole) Targeted Therapy 9/5/2015 Perjeta (pertuzumab)
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Jan 1, 2013 02:41PM Krystyna wrote:

I do live in Canada, and have been diagnosed with liver and bone mets in Oct.2009. Two years stable on Aromasin, 8 month on Abraxane and currently on Faslodex. Second opinion in Canada is rather difficult, you can ask to put your case on a tumor board. I hope that your oncologist does have a pathology results ,and will start the treatment depending on it. You need to be your own advocate. The system tends to be indolent.

All my best.

Krystyna

Dx 12/18/2006, IDC, 2cm, Stage IV, Grade 3, 3/21 nodes, mets, ER+/PR+, HER2-
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Jan 1, 2013 02:47PM rkt wrote:

Echoing what many have said - doctors can't give a timeline - everyone is different.  My liver mets showed up October 2011.  That was the third time I had progression since first diagnosis (2008), but the first time it went to an organ.  I started chemo in November 2011 (taxol - 3 weeks on and 1 week off), and my doctor ordered scans after two months of treatment.  That scan showed no active cancer in the liver (or anywhere else).  I have been stable since last January (January 2012) and have had 5 clean PET scans.  Am continuing on with weekly taxol - Like others said above, finding the right chemo that knocks your cancer in the liver down is key -there are many choices, each with side effects, but with respect to myself, I can tolerate a heck of a lot of side effects from a medicine if that medicine is able to deal effectively with the cancer.  I will be on taxol until it fails me, then on to the next treatment.  

Hang in there - when the cancer went to my liver, I was petrified.  I came to these boards and found many ladies who were living with liver mets and doing ok.  Ok is fine with me!  Each time progression occurs, it knocks the wind out of my sails, but then the next treatment starts working, and I am able to deal with this. 

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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Jan 2, 2013 04:28AM plamont wrote:

Thank you ladies for telling me like it is -  I am calling Princess Margaret Hospital tomorrow morning to get a second opinion from one of the top Oncologists - hopefully he will make time for me -  its tough in Canada to get immediate care or second opinions - I have been waiting so long for test results, biopsy, mastectomy - I blame it on waiting that the cancer has spread - as I have a very aggressive form of lobular bc  ER positive, PR positive, Her 2 negative - just looked up my pathology report again - you think I would have it memorized by now - but each time I look at the pathology report it scares the hell out of me.

I think that is why the oncologist I saw told me 6 months - as it seems to be very aggressive from past mammograms etc.

I don't have a lot of faith in the western system these days - has anyone tried to Oasis of Hope or the Issel Clinic ???  I suppose I am becoming quite desperate but I owe it to my family to make the right choices and not sit back and wait for someone to treat me - I have been waiting since Sept 2012 for treatment and every stage seems to take forever - and I still haven't begun chemo.  I know many people say the Oasis of Hope is all about money - but their stats do look much higher than the stats here in Canada.  

I am very scared as I have been in a lot of pain in my back since October 2012 - and the pain is getting worse - moved down into my ribs and lower back now - each day the pain grows - the doctor gave me 200 pills of oxicoydine - so I suppose she is expecting it to worsen -  I try not to take them - but can't even sleep anymore without taking them - I have to sleep sitting up as pain so bad - I have heard that once you start chemo - the pain will subside?  - I think that is why I am looking at going to Mexico for treatment as I do feel this is rapidly attacking my body -  I am a person that is optimistic - I never believed for a minute I had cancer - always trying to think positive - but that little voice inside me is now telling me to accept the fact that this cancer is bad and to do something about it fast instead of playing the waiting game as the clock tics.

My family are very supportive and my husband says we will do whatever we need to do to fight this - if I can buy myself extra time so be it - I'm certainly not ready to go in 6 months.

What are your thoughts on these clinics - every decision I make now is crucial and I have made a lot of bad decisions in the past by having surgery before chemo as I listened to a crappy surgeon who said I didn't need to worry and he would not refer me to an oncologist until after my surgery - big mistake as cancer just spread.

thanks Ladies - you are all my inspiration!  

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Jan 2, 2013 04:34AM liv- wrote:

great that you are getting more opinions.

cancer aggressive!!!!

YOU must be also be aggressive and dont be fobbed off.

xxx

much Luv ~~~~~ xx Liv xx ~~~~~ ........ DX Apr 12 - IBC - 10cm -Trip Neg - Stage 3C - 17/24 nodes bad - Adriamyci Doxorubicin Docetaxel Cyclop - Tac Xeloda Nov + Navelbine Dec 2012 combined Chemotherapy 4/10/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Daunorubicin (Cerubidine, DaunoXome), Doxil (doxorubicin), Navelbine (vinorelbine), Taxol (paclitaxel), Taxotere (docetaxel), Xeloda (capecitabine) Dx 4/13/2012, IBC, 6cm+, Stage IIIC, Grade 3, 17/24 nodes, mets, ER-/PR-, HER2- Surgery 8/12/2012 Lymph node removal: Left; Mastectomy: Left Radiation Therapy 9/30/2012 Breast, Lymph nodes Chemotherapy 11/6/2012 Xeloda (capecitabine) Chemotherapy 12/17/2012 Navelbine (vinorelbine)
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Jan 2, 2013 07:48AM Lemonsoda wrote:

Six months, what nonsense! I was diagnosed 18 months ago with extensive liver mets, and am still here, living a pretty normal life. I had chemo and ongoing herceptin, SIRT which made the liver tumors inactive, and now due to a small progression into 2 lymph nodes, I am on Xeloda and Tykerb and I am trotting along quite happily.

My advice is, get an onc with a positive approach, and do as much research as you can to find the best treatments, including local treatments for the liver, them bang on the table and stand your ground till you get what you want. You will be celebrating plenty more new years! Keep in touch and use us to get any info you need. Anne

ER/PR+ Her 2+ Diagnosed Stage IV July2011 Dx 7/7/2011, Stage IV, Grade 2, 7/14 nodes, mets, ER+/PR+, HER2+
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Jan 2, 2013 11:17AM kayrnic wrote:

I'm not necessarily opposed to alternative clinics, but I wouldn't base my decision on statistics. Statistics can be manipulated and are not always what they seem to be.

Kay ---bone mets Dx 11/14/2001, IDC, 2cm, Stage IIA, Grade 2, 0/9 nodes, ER+/PR+, HER2- Dx 3/9/2012, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jan 2, 2013 11:34AM lanagraves wrote:

As others have said, there is no expiration date stamped on you. As to alternative treatments, I am not against them as long you are receive current best standard of medical care along with them. Many people live with mets for many years, as evidenced by the personal stories of those on this board and elsewhere. I am relatively new to Stage IV, but am currently NED (we think). I plan to be around for many, many more years. My inspiration through this has been a dear friend I work with. She was diagnosed with cervical cancer in 1994, a single mother with 3 kids at home. She was treated and given hormone supplements afterward. In 1998, she was diagnosed with Stage III hormone positive breast cancer. Not long afterward, they found mets on her shoulder and spine. Treatment again. She went to NED. In 2002, the beast reared its nasty head again, in the other breast and lymph nodes. Treatment again. She has been NED ever since, works every day, and lives a very normal life. There is hope. Never give up.

It appears my battle is not over...but I never was afraid of a fight... Dx 2/9/2012, IDC, 4cm, Stage IIIA, Grade 2, 4/12 nodes, ER+/PR+, HER2- Surgery 2/13/2012 Mastectomy: Left, Right Chemotherapy 3/15/2012 AC + T (Taxol) Radiation Therapy 7/15/2012 Breast, Lymph nodes Hormonal Therapy 9/27/2012 Dx 9/28/2012, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jan 2, 2013 11:53AM exbrnxgrl wrote:

I am so sorry for the frustration you're feeling due to so many delays. I am not familiar with the Canadian medical system but do whatever you need to do to work it to your advantage, including being loud and persistent as a Rottweiler ( no insult to the breed). As to alternative tx, do your research and then decide how you feel about it. We have an alternative forum on this board and you might start by looking there. Other than trying to lead a healthy lifestyle, my treatment has been conventional. To be honest, I haven't seen any credible evidence, other than the occasional anecdote, that alt tx for stage IV results in miraculous cures. There have been a few stage IV women who have used alt tx and, being honest, they have either passed away or stopped posting, taking the secret of their miracles with them. I hope this doesn't stir up controversy and I could be completely wrong, but this is just my observation. Wishing you the best.
Caryn

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole)
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Jan 2, 2013 12:26PM tammie wrote:

I have to say I was told at dx with inumerable mets to bone and liver that i had one yr. tops and as i sit here typing this 15mo. later im stable and doing well.. I know i'll never be cancer free and i hope everyday that things remain as they are.. I dont know how the medical system works in Canada but there are many women on this site that may be able to help with that, if possible i would consider a new Onc. as if your doesnt have hope for you thats gonna impact tx i fired DR jerk that said i was dying and love my current Onc... I know the beginning of this is soo overwhelming BUT dont give up HOPE.. Hoping they get you into some treatment that turns things around quickly for you.. Wish there was more i could do or offer as the beginning of this path is so tough.. Sending big hugs and positive vibes your way <3

Everytime the wheel turns round bound to cover just a little more ground!! Dx 10/8/2002, IDC, 2cm, Stage IIB, 0/7 nodes, ER+/PR+ Surgery 10/29/2002 Lumpectomy: Right Radiation Therapy 5/8/2003 Breast, Lymph nodes Dx 9/7/2011, Stage IV, 0/7 nodes, ER+/PR+ Radiation Therapy 9/12/2011 Bone

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