We are 162,722 members in 80 forums discussing 128,055 topics.

Help with Abbreviations

All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Just Diagnosed Stage IV BC Mets to Liver - Doc says 6 months!!

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 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: Dec 31, 2012 09:57PM

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

Log in to post a reply

Page 2 of 2 (42 results)

Posts 31 - 42 (42 total)

Log in to post a reply

Jan 2, 2013 10:10AM BilateralBeauties wrote:

30 days after my treatment for Stage 1 ended, I started having massive pain, some vomitting and a very difficult time. It turned out to be my gallbladder. Before we figured this out, we spent time looking for more cancer, almost determined to find it. Then I got to a GI specialist and with one little test we knew we had an answer and we moved to surgery on the gallbladder at warp speed. Remember the pain might be unrelated. Try some alternative therapy for pain management like acupuncture, healing touch or others. I also was doing chiropractic treating it as muscle and bone and not cancer. So while you wait to get it all sorted out, look for pain relief in places other than a pill. Storming heaving for you. Good Luck.

Dx 8/23/2011, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 9/6/2011 Lumpectomy: Left, Right; Lymph node removal: Sentinel, Left, Right Chemotherapy 10/12/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/8/2012 Breast Hormonal Therapy 3/8/2012
Log in to post a reply

Jan 2, 2013 10:52AM Chickadee wrote:

You need to try to find some peace until you have a treatment plan in place. The waiting is awful and I think you've been treated shabbily. However, my opinion, don't go looking for miracles in third world countries. The charlatans operate there for a reason....no oversight and desperate cancer patients who cling to hope and are willing to pay cash. Nothing wrong with eating healthier, but no one food or substance or weird treatment can cure cancer and anyone who swears it can is a liar. If you want to travel to another country consider one of the US major cancer centers such as MDAnderson. There is nothing they aren't trying.

You haven't even begun conventional treatment. I have liver mets, none of the targeted therapies are appropriate for me, however I just saw my onc today and I continue stable and have a really good prognosis for more time. All my blood work is nearly normal and she feels we can go to 4 months for a scan instead of every three. I'm 3 and a 1/4 years out from my original diagnosis and 18 months out from the liver progression.

A couple of the treatments I tried were either useless, or, as in the case of Afinitor, were horrible. Xeloda is a choice for many of us with liver mets and hormone receptor positive. It's working we'll for me.

Lets see what your next appt brings......and don't be afraid to call BS on the Doctor if they can't justify and explain thoroughly the prognosis and the treatment plan. No you won't be cured, yes your lifespan will be shorter, but you should expect to work with professionals who regard you as having a chronic disease which they will do everything to fight with you and for you. Buying time is what we do.

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-
Log in to post a reply

Jan 2, 2013 12:21PM Rosevalley wrote:

Your post made me cringe.  We are even close to the same age! I was diagnosed in 2007 stage 3A, had chemo, radiation double mastectomy- the works. All that after a clear mammogram 8 months earlier. Then the cancer came back April 2012, widespread mets to bone everywhere, rib fractures etc.

I asked what my prognosis might be since I have 3 kids still at home. The oncologist said 1-2 years. My bone biopsy from the pelvis showed complete metastatic replacement, no bone marrow left. He started me on a drug I had not ever tried faslodex, and zometa. In 6 months of treatment my scans are clear. So now he says you're responding great and you will be with us for a while, how long I don't know. Rule number 1- you have to try the treatment first to see if it will work. How well it works is hugely varied by each individual and the kind of cancer they have.

So have hope. You need more information, tissue from the tumor, markers ER, PR, Her2Neu etc, how aggressive (grade) etc. Don't panic. Take someone with a level head with you. Write things down, ask questons. If something seems improbable get a second opinion. If the surgeon is an ass, change to someone else. If they won't listen, keep changing until you find someone who will. It's your life and you will need to fight for it. Lots of folks on this board have liver and bone mets and have lived for years, use their insight and experience. Make your doctors tell you why they are choosing a certain course of treatment and how they will follow to see if it is working. Good luck. have fortitude and faith!

Double mastectomy 07/ chemo Adriamycin,Cytoxan, Taxol, Radiation/ 07 Arimidex, 08 Aromasin, 2012 Faslodex, 2014 Aromasin & Afinitor / mets spine, sternum,ribs, skull, pelvis, all long bones 6/2015 mets to omentum, malignant ascites, lung, liver Dx 1/2/2007, ILC, 6cm+, Stage IIIA, Grade 1, 1/17 nodes, ER+/PR+, HER2- Dx 4/2/2012, ILC, 6cm+, Stage IV, Grade 1, 1/17 nodes, mets, ER+/PR+, HER2- Dx 6/1/2015, ILC, 6cm+, Stage IV, Grade 2, 1/17 nodes, ER+/PR+, HER2+ (FISH)
Log in to post a reply

Jan 2, 2013 12:21PM sheryls wrote:

I am stunned at how you have been treated so far!!

I was diagnosed in July 2012 in Vancouver and I was in chemo 17 days after diagnosis.  My tumour was too large to do surgery initially so I met my onc one week after dx and I was immediately put on the chemo waitlist.  I was diagnosed as stage iii at best but once the CT/bone/PET cans were done stage iv was confirmed with various bone mets and something on my liver.  

My onc has not once given me any official prognosis.  Our plan is just to fight this and not start suggesting time limits.

So far I have been fighting for 6 months and aside from the chemo side effects I am definitely alive and active.

Keep positive thoughts, I know that is really tough, especially at 3 in the morning.  And for sure contact the hospital, they should have a breast cancer tumour board and you should push to have your case discussed.  Also, is there a specific breast cancer clinic you can get involved with?  We have one in Vancouver and it includes nurses that work specifically as patient navigators to make sure you get all the tests and treatment you need.  And they are also good at offering support.

Good luck you on this journey.  It sucks that this is how we have to meet! 

Dx 7/13/2012, IDC, 6cm+, Stage IV, Grade 2, mets, ER+/PR-, HER2+ Chemotherapy 7/29/2012 AC Targeted Therapy 10/21/2012 Herceptin (trastuzumab) Chemotherapy 10/23/2012 Taxol (paclitaxel) Surgery 2/5/2013 Mastectomy: Left; Lymph node removal: Underarm/Axillary, Left
Log in to post a reply

Jan 2, 2013 02:06PM bourscheid wrote:

Sorry to hear about your dx.  However, you do NOT have an expiration date as many others have said.  I was dx. stage IV from the beginning in Aug. 2008 with extensive liver mets, mets throughout the nodes in the chest/mediastanal area. Was told to get my affairs in order.  I have been on chemo for most of the last 4+ years with excellent results...have even had two long runs with NED and most recently a good run with Stable. Still going strong! Hang in there!  

Lori Surgery 8/17/2008 Mastectomy: Left Dx 8/18/2008, IDC, 6cm+, Stage IV, Grade 3, 27/29 nodes, mets, ER-/PR-, HER2- Targeted Therapy 10/1/2008 Avastin (bevacizumab) Chemotherapy 10/1/2008 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 1/8/2009 Xeloda (capecitabine) Chemotherapy 9/9/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 1/17/2011 Xeloda (capecitabine) Chemotherapy 11/18/2011 Halaven (eribulin) Chemotherapy 4/23/2012 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 1/9/2013 Faslodex (fulvestrant) Chemotherapy 1/9/2013 Doxil (doxorubicin) Chemotherapy 8/25/2014 AC
Log in to post a reply

Jan 2, 2013 03:36PM SophieJean wrote:

Plamont, Another Canadian touching base here. I'm a liver mets since 2006 lady - also with disease present at get go. Do you have your ER and HER status results back yet from the mastectomy? I tried to read many of the previous posts but am a bit short of time so forgive me if I'm repeating others.

My initial experience was much like yours. Mine was the result of being identified through the primary care system in a small centre and getting referred to an old school surgeon. Our oncologists were "generalists " - not specialists in breast cancer and really having no idea about what to do with mets from the get-go. I did the mastectomy and then lost more time waiting for test confusion to be cleared up before I could proceed to chemo.

On the upside I also had a mastectomy, and there is some evidence that this can slow things down for some women. I would not have been given that option if the mets had been found first. I also did not waste time with radiation - again for me with a fast paced cancer this would not have been helpful. My liver mets (those found at diagnosis - 5 of them) and at my fairly recent recurrence (1 at 8cmX5cm) have never given any pain. The bone mets identified at the last recurrence also did not cause pain. My mets at diagnosis were never biopsied, they were at second recurrence. Thats not to say your pain is not metastatic - more to say that pain is an uncertain symptom. And the best back up diagnosis of mets not biopsied is response to treatment - aka if they go away or shrink on chemo they were very likely cancer.

One can lose a lot of time getting testing. Your instincts to get to chemo are good. Once my test results got to a larger centre tumor board and I temporarily moved to get a specialist oncologist I finally felt like things were under control. Once chemo has started your response to it will be what counts. Its reasonable to hope for a remission that might last for many years (mine lasted 6 years). During this treatment time your oncologist can be more systematic about what testing protocols would work best for you.

But... a note of caution - it easy for overworked health care systems to not act if they think there is someone else taking responsibility for the problem. This occurred to me several times - my small town Dr did not act because he thought I had transferred - my big city onc did not act because he though I was still covered locally. I was a low priority for both of them. In Alberta the only way I could change onc's was to change my address - I don't know if thats the case in Ontario. Small towns are covered here by tumor boards - the major cancer centres review your case and test results and recommend a treatment plan the local onc follows up on. If this is true in Ontario (it seems to be so in BC) get yourself onto a tumor board agenda as quick as you can. They also advise on testing/follow-up protocols. Under that system your care will improve quite a bit although you'll have to trust them - you are right, in Canada there's far less tolerance for shopping around. The actual quality of care here is world class - but its less transparent and very evidence driven. You can ask for a tumor board review anytime there is a need to change your treatment plan.

I don't have lobular BC so I can't answer to the difference from the more common IDC. Hopefully that aspect has been covered by other ladies.



Log in to post a reply

Jan 2, 2013 04:11PM SophieJean wrote:

A quick note cause I just spotted your most recent post. I too am off the charts on the "aggressive scale" - I grew an 8cm liver tumor in less than 4 months. But I don't believe I am metastatic because treatment took too long - I'm metastatic because my cancer has the travel bug (genetics). I had a small breast tumor and one positive node and yet - liver mets. . If the chemo is a match for you your disease could very well respond dramatically, regardless of the extent of progression.


Log in to post a reply

Jan 2, 2013 04:31PM Surly wrote:

I encourage you to keep calling hourly or daily, pushing, taking names, holding the health professionals accountable. Ask your onc if he(?) would tell a spouse or daughter that she had 6 months to live, so go home and make plans. Or would he hop to it and try to stop the disease and buy them time? You deserve quick response. 

If the oxy doesn't make you sick or unable to think clearly, I encourage you to take it. Being in pain or discomfort is so corrosive mentally and emotionally. If you can manage your pain and can sleep, you will feel in more control and able to fight. For some reason I was resistant to taking too many pain meds at first. I didn't want to admit I needed them, maybe, but I also felt like I needed to know where the edge of my pain was. I didn't want to numb myself up too much. I stopped that nonsense. They're the only way I can function, and I'd never go without them.

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+
Log in to post a reply

Jan 3, 2013 06:59AM texasrose361 wrote:

Wow I am appalled at that care thus far! Be the squueky wheel that gets the grease girl! Like others said, with the right treatment things can turn around and you may have years left in ya!

Children 9g, 9b, 6b :) Mets to ribs, sternum, femur, esophagus, retroperitoneal LN, lungs, ocular nerve, brain. Dx 7/22/2010, IDC, 6cm+, Stage IV, Grade 3, mets, ER-/PR-, HER2+
Log in to post a reply

Jan 3, 2013 02:07PM JeninMichigan wrote:

I too am appalled at the state of care you have been receiving.    I also just wanted to tell you that I was diagnosed in 2008 with four liver lesions, most of my right ribs, left hip and several chest nodes.   I had Taxotere, Carboplatin and Herceptin and was NED (no evidence of disease) after three cycles.   I have continued with Herceptin and have stayed NED now for 4 1/2 years.   My first oncologist told me he would treat me for quality of life only.    I fired that man and found my current oncologist who said she would treat me aggressively.    My cancer was very aggressive too.   I had no mets that show on my bone/ct scan before my lumpectomy and 3 weeks later they did a pet scan to check out a tiny nodule on my lung (which was only focal scarring) and then I light up like a Christmas tree.   

So, keep at it and don't back down.  I hope you are able to get into another doctor and get going on some chemo quickly.     I hate that they try to give you an expiration date... what a bunch of crap!!!


Dx 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+/PR-, HER2+
Log in to post a reply

Jan 7, 2013 06:10AM LadyFarmer wrote:

Well I am sorry to read what you are going thru as I can certainly relate, we all can on one level or another.  I am hoping that since your last post you have managed to get an appt with another oncologist at Princess Margaret Hospital that you intended to phone.  You may want to try Odette Cancer Centre in Sunnybrook Hospital.  I was just there on Dec 31st for Stereotactic Radiotherapy for a small brain tumour and found them wonderful! Smile

I was diagnosed in Dec 2010 with Stage 4 bc with bone mets to my upper spine.  I never did have a mastectomy because they told me that it was too late, since it had already spread, so it wouldn't do any good.  Funny at that time, I would gladly have had them both removed thinking it would save my life!  We tried a couple different chemo cocktails, I would have to look them up, but ended up on Taxol with good results for a good long time.  We stopped when the side effects became too much and gave my body a break for about 6 months as we had NED at that point.  So it came back in Early 2012 and had also spread to my lungs and my liver.  We tried weekly Paclitaxel, but it didn't do enough.  Then we tried Afinitor and Aromasin, but again it wasn't enough and we had progression of disease in my bones so involved all of my spine, my pelvis and hips, ribs and so on, as well as further progression in my liver, and as of Dec 2012 I have mets to my brain.  So we have switched to Xeloda and I am happy to be reading that some of our friends on here have had some good results with it, so hope that hopefully this will be the answer for me!  As we say, everyone has something that will work, you just have to keep trying them and when they stop working, you switch to something else!  In the late fall, we did radiation to my upper spine and right shoulder, and just before Christmas we did radiation to my left femur, right hip and (sacrum) tailbone.  Then on New Years Eve we were lucky enough to get in and have my brain tumour taken care of with pinpoint radiation in Toronto as I mentioned above!  We were so thankful to have it done so quickly and now if we can just get my liver taken care of, we will be so very grateful!  So I am telling you my journey in order to let you know that it is a "journey" and that you need to set your mind in a Positive state that you are ready to Fight and Win!  You need to let your doctors know that they need to be onboard with you, and if they are not, then you will have to move on to one that will.  I did replace my first oncologist, so it is possible even here in Ontario, as you have to be comfortable with your doctor.  It is very important for you to be able to relate to your oncologist. 

I also recommend recording your appointments,Wink as it is so much information for you to absorb, you are on emotional overload, and it isn't possible for you to take it all in or even write it all down.  Of course taking someone with you, goes without saying.  What we have found is that we take our digital camera with us, we get the doctor's consent first of course, and we record on video without actually pointing it at anyone, so we record the conversation.  This way we can listen to it when we get home and we haven't missed anything.  We can refer back to it and take notes if we want to, save it or delete it, but we at least have not missed it at the time.  I would also recommend you go ahead and take the pain pills your doctor has prescribed.  When you take the chemo or the radiation, your pain will lessen, so in the meantime, take the pain pills so that you aren't suffering needlessly.  None of us needs to be in pain.  That is one thing you can try to control, and so be kind to yourself and take the pills.  Your body will tell you if/when you need them.  And it sounds like you are fortunate like myself, and have a wonderful supportive husband, and that also makes the world of difference!  Surround yourself with love and support and positive people.  Don't allow the negative people in your world!  Read positive books!  Plan on Happy Things to look forward to!  You are going to be a Winner!  Now get ready to Fight and Win!  Hugs!Wink

Dx 12/6/2010, IBC, 2cm, Stage IV, mets, ER+/PR+, HER2- Chemotherapy 4/30/2012 Abraxane (albumin-bound or nab-paclitaxel)
Log in to post a reply

Jan 8, 2013 08:07AM liv- wrote:

plamont (hugs) - stuff what the doctor says - fight with all u have.

ladyfarmer - if i ever need to be inspired i know where i will come and read again, right here.

you are a warrior and thanks for sharing even tho you made me cry and you made me smile

thankyou special ladyfarmer


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 Mastectomy: Left; Lymph node removal: Left Radiation Therapy 9/30/2012 Breast, Lymph nodes Chemotherapy 11/6/2012 Xeloda (capecitabine) Chemotherapy 12/17/2012 Navelbine (vinorelbine)

Page 2 of 2 (42 results)