Anyone 5+ years with liver mets and ER+ Her2-?
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Gotcha! Thanks. Congrats 5 YEARS!!!!! I want to make that goal!!!
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Shetland- Way to go !!!!!!!!! 5 years with liver mets is a freaking big deal !!!!!!!!!!!!! I know several bone mets ladies are going strong at 5 years, but you don't hear of too many with liver involvement at 5 years. Bottle up your secret and send this way. I am 2 years this month and want a lot more years.
Edited to say---I know you have had a lot of rough patches recently. I am hoping for smooth sailing for you now.
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Thanks, Everyone for the congrats. I wish and hope that we all will change the old statistics, and get many more years. I wish and hope that ER+ Her2- will soon get a treatment as stat-changing as herceptin has been for Her2+. Ditto for TNBC.
P.P.S. Nicole, I apologize. I didn't mean to ignore your question here. I got interrupted and distracted while posting. Thanks for picking up the slack, Sandi!
Thank you, candy.
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Yippee, Shetland, time to make big plans for the next five years!!
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I totally do not want to sound negative here but I will and I do not want to upset anyone intentionally so please forgive me in advance if I do that...but I need to vent...vent to women that understand what I am saying. My family just does not.
It wasn't until the last few days that stupid me realized all the women that I was seeing surviving past 5 years was because they only have bone mets. I understand there a few here in this thread with liver but only a couple or few. I was feeling so hopeful the past few weeks/months thinking "I got this, look at all these women making it more than 5 years"...only to find out it's because almost all of them only have bone mets.
I have seriously been over here in denial. I live every day like kind of forgetting that I have cancer...not just cancer ...but cancer in my liver. I am realizing now the chances of me even making it to age 55 (I turn 51 next week) is like a 80 - 90% chance I won't. I feel like I need to accept this and learn to live knowing this but I just do not know how to.
We moved this weekend...after 6 months since this Stage IV crap began we have not lived in our home. We are finally as of tomorrow be in our own home and Wednesday all our stuff will be arriving..normally I would be so happy about this...and I was until today. We got here on the base and drove by our new base house and I sat then thinking...what is there to be happy about...that I might have 2 years or maybe 3 if I am lucky to even live here with my husband and who knows how sick I will be at that point if I even make it to 3 years.
I feel angry at myself for being so naive not knowing how slim my chances really were because I have 2 leisons in liver. I have been reading peoples posts on this site about how they do great for a year or 2 then most of them the lesions just start over taking the liver and they lose the battle. I am so sorry for venting about this I just feel like no one in my personal life understand the way I am feeling they all just say "oh you have to be positive you cannot talk that way"...really why can't I be realistic does that have to mean I am being negative?
I love you all and I thank you in advance for allowing me to say these things here.
Nicole
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Nicole, many hugs. Here is where you can say things and have others understand. To say our situation is scary and precarious is an understatement. You are new and trying to get your balance. And we all seem to go through it again at times. In my opinion “positive thinking" can be a tyrant. Better to be real. And I think there is a good kind of denial, the kind that allows us to get treatment but to ignore the sword of Damocles over our heads as much as possible. One of the most helpful ways of thinking for me is to remind myself that my future is unknown. If it is unknown, then something good is possible. That's why I started this thread. I wanted to know that five years is at least possible. You will learn, are learning, to live with a very uncertain future. For me it helps to be mindful, to live in the moment if I can, to focus on today. I hope you can enjoy whatever is good about your move, whether you like setting up a new house, or meeting new people, or taking advantage of what your new city has to offer. Sending love back to you.
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Thanks, Cure-ious! I hadn’t actually thought of doing that, but now that you mention it, maybe I will. Maybe I should. Ah, heck, why not.
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Thank you Shetland for your understanding and realistic yet positive thoughts. I really understand what you mean when you said "thats why you needed to start this thread, you wanted to know 5 years was at least possible" I guess I need to take faith in that. ((((hugs))))
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Nicole- I totally understand you. I am a Christian and I know God has my future in His hands. He controls this cancer and I will live for however long He wants me to. But I am a realist also. Organ involvement mets has a less favorable outcome than bone only mets. But each person is different and reacts differently to the treatments. And just think that BCO posters are just a sample of the MBC patients out there. We are only hearing from a few on this Thread.
Yes it is hard, so damn hard, to think of our mortality. I too think about " Will I see ___ or is this the last time I will do ____". And no one that is not going thru it themselves cannot truly understand it. We live a different existence with this disease.
Find the joy in your move, the new house, the people you will meet. But yes it is hard what we go through. What we think about at night in our beds.
PM me anytime if you want to talk to another liver metester. Take care.
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NicoleRod, I was so taken by your post. I know the statistics for liver mets aren't encouraging, but there is still hope. I have had 7 years, 1 month and 2 days since diagnosis of liver mets, and still doing pretty well. The trite saying of "one day at a time" is true and helpful to me. I'm not going to die today, so I will live today, and so will you. Each day. Bless you!
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There you go Nicole. Schnauzermom at 7 years!!!!! Thanks Schnauzermom, I needed to hear that too.
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Congrats ShetlandPony!! Also, to the other met survivors 🎉. Living 5 years with liver mets gives me realist optimism that it can be done. I’m 21 months from my extensive bone/liver/lung mets diagnosis and my future is unknown, which also means something good is possible🙏 I set a goal at diagnosis with myself to be here for my youngest son’s high school graduation. That will be 5 years with MBC! I plan to do everything I can to achieve that moment.
NicoleRod, I completely understand your feelings and often feel like I’m in denial.....I just pray that it’s a healthy denial. I’m trying to live my life each and every day and be optimist instead of my head covered in bed overthinking negatives. Sometimes researching for hope can be a depressing anddaunting but I need to hold onto the possibility of many more years to come!!! Hugs to you all!
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Shetland, congrats on the 5-year mark! I am right behind you. I have had liver mets for 5 years but due to some delays in mets diagnosis, I wasn't technically diagnosed until December. Thus, I am at 4 and 3/4 years.
Schnauzermom, 7 years is awesome!!!
Nicole, as for starting chemo versus hormone therapy/Ibrance, some of the MO's decision-making is science and some is art. I don't think anyone really knows which is more effective or if there is a difference. If someone is in a crisis, yes, chemo for sure. If not, even with a heavy tumor load, the decision could go either way. It is a case-by-case decision based on treatment history, mets profile, degree of hormone +, quality of life factors, personal preference, etc.
I know what you mean about feeling like we are in a different league than those with bone only disease. We are. It sucks. Honestly, I have found myself disappointed at times to “meet” people with liver mets outliving 5 years, only to learn they didn’t have liver mets most of that time. However, like Shetland says, our future is unknown and that does leave room for a possibility of a more favorable outcome. I am aware of and realistic about my prognosis, but do also keep some amount of hope. One never knows what tomorrow will bring. I just hope that each new treatment helps to extend my life long enough to live until the next treatment comes out. “Conditional survival”, I believe Bestbird calls it.
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I am overwhelmed right now...in a good way. I don't know that I have ever felt so supported, but more than that..so understood.
Thank you, thank you for understanding what I am feeling. I am crying because I feel like you are all here just hugging me and telling me it's ok..it's ok that I feel those things but not even that its just ok but I that you all KNOW what it is to feel it because you all have!!!!
I do "hope" at times. I really do..but I think sometimes like this past day I think I get angry maybe, that I allowed myself to hope. I don't even know if I am explaining that right.
Ok I need a minute to blow my nose and wash my face from crying.
Thank you so much ladies. Its so different hearing you all say these things than hearing everyone else in my life.I really feel loved right now.
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Nicole and others- That is what BCO is to me. A big hug. It is ok to feel like this. Yes I am optimistic and have hope, but yes I feel fear. And rightfully so. And anger is ok too. Fear, anger, sadness. It is ok. And you all UNDERSTAND. I don't talk to my family this way. Only here.
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I was diagnosed MBC to liver only in 2014 after a Ct for another issue.it stayed stable for 2 years so I had a liver resection to remove the tumor. Stayed NED for a year and a half on faslodex then tumors returned .Over the last 5 years they have been gone then returned.The liver is always the first to clear.Now its in the bone and if heart studies are clear I start Doxil
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kickingcancersbutt did you do Ibrance??
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bumping. I too am a liver-involvement-from-the-start gal. December will be one year for me. Currently NED. I’m looking for inspiration too. Thank you for leading the way Shetland.
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I guess my response when to cyberspace
Nicole- I totally get where you are coming from. I think this kind of conversation is just too hard and scary for our loved ones to engage in.
I was told by the RO that I had about two years to live, quit your job, say goodbye, don't bother with radiation, and I was stage IIIC! He totally crushed my hope- I thought that I was going to be one of the ones who was cured. I had already done a double mastectomy, axial node dissection bilaterally and a whole lot of chemo. My MO did not believe this. But, I ruminated so much, and was afraid to make a commitment to anything, thinking that I would break a promise. Here I am almost 8 years later. I choose to hope, be positive, look for my happy places because as Molly Ivens said Cancer doesn't give a rat's ass if you are positive, but, it is a lot more pleasant way to live.
I recently spent several hours with a local BCO friend and it felt really great just to talk about all these things without worrying that I was making someone uncomfortable. Most people don't know that I have cancer, so I don't have to listen to any opinions and judgements from most people. I Think this helps majorly with denial which I think is so helpful in the right dosage. Also, by not talking about my cancer, I find out a whole lot of people have misery and disease -just of a different type.
My current MO believes that breast cancer will become a chronic disease just like AIDS is now. I hold onto that hope and as other people have said- I want to hold on until the next great treatment comes along and hope that they figure this thing out in time to save us.
Most MOs care deeply about their patients, sometimes it is not a good match, and some are obvious duds, what a job! It is a science, but, deeply it is an art.
I think that the bookThe Unwinding of the Miracle by Julie Yip-Williams could be good- I have read about 12 chapters so far. I also have read "Being Mortal", "The Bright Spot", "Everything happens for a reason and other lies I've loved,"," How to change your mind: What the new science of Psychedelics teaches us about consciousness, dying, addiction, depression and transcendence" "Illness as a metaphor". and other helpful books
Hugs to you Nicole
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NKB but do you have liver mets?? How long have you had them??
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Nicole- No, I don't have liver mets- just wanted to emphasize that no one knows. Also, don't wait. Lead your life, find your passion and happiness if you can. I have ILC which tends to metastasize later and go to the stomach and bowels, but, also liver. Also, some of the more aggressive cancers (small cell lung, HER 2+ , melanoma etc) have made some of the most progress in prolonging life.
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NKB i get what your saying but my post and this thread was specifically for people with liver mets not just bone. In my original post here and in the replies that people posted we all acknowledge that just bone mets survival rates and what you are dealing with is different. I appreciate what you said and your reply but my whole point was really about liver mets not bone mets alone.
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It is a lonely place to be - I would get angry with people who blah about positivity in response to median survival being quoted to them. I got it easier as after initial shock of death any time between now and 3 years I got median of 5 years after histology was done so it changed my outlook for now. It was a weird and not good place to be , as if one was separated from the whole world by invisible plexiglass wall and when one yells nobody can hear them and just continue with every day life and chit chat.
Just in case for clarity - I do not have liver metastasis and I am her + and I am recently diagnosed so I am not who you folk wanted on this thread. I just thought I could to a degree relate to your rant as I had similar anger and alienation feeling.
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Nkb- I like where you said " Cancer doesn't give a rat's ass if you are positive, but it is a lot more pleasant way to live". When I was first diagnosed my MO said to stay positive. And I read several things, here and other places online, that said a patient does better with a good attitude. This can be a discussion in and of itself. I don't believe in the thought that a good attitude will help slow the progression or even heal the cancer. The cancer is going to mutate and affect the body in a medical way, regardless of ones mental attitude. That being said, your quote is true, in my opinion. It is a more pleasant way to live what life we have left if we TRY to have a positive attitude. I say TRY because I do try, but sometimes it just gets to be too much.
NicoleRod- I understand what you are saying about liver metsters. But it is what it is. There are several on this Thread with liver involvement that have made the 5 year mark. I cannot name them because I have not mastered how to review past posts while keeping my place in my current post. But I noticed that the other day when rereading the posts here. Reread them. You will find some. Not many, but some. I know it is hard to come to that realization about our survival rate. Prayers for your peace about the realization. That is what I want for myself- peace and acceptance.
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Keep posting folks. No matter what topic we are on, it helps to hear how others cope. We eventually get back on topic or refer where best to get support!
I am approaching 3 years with liver mets and I feel well, but some days are dark emotionally. I bow down to my Trig Neg, ILC, IBC, Lepto BCO friends as I feel their road is harder to travel on irregardless where their mets are.
And for those who have made 5 years with liver mets, we (me) really need to hear from you, even if you represent a small percentage of BCO posters with this dx.
S
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I'm not at the 5 year mark but I am at the 1 year mark of de novo to liver. I had a PcR to first line chemo , NED, and currently only on Letrozole. I was completely written off at the beginning and treated with palliative intent. I had a pet scan half way through because we didn't actually know what the spot on my liver was. It was very conspicuous . Even that being said, they assumed it was a met and that I couldn't be helped more than slowing it down. But as surprise had it, Gone.. everything gone. A tiny axillary node was left but was 1.6 cm to start and by the 3rd round it was 7 mm.
How the options opened up for me once they saw that . It was then decided that I would be treated with curative intent, and with all they had. I got my MX, Oophorectomy, and rads. I was termed "oligometastatic" and was told there was hope for me after all .
Just had a f/u with MO and was switched to Letrozole from Tamoxifen since I had my ovaries removed . That is the current plan as of now. Was told I could have Ibrance if I wanted however, they worry about exposing me to the level of toxicity, making me sick, and not actually treating anything. Their worry was that if I came off of it for SE's, then I'd never have that option again and when I could need it. Currently having a PET scan in 4 months and if all clear, then I move to 6 month scans because they worry about too much radiation exposure. So if that's not something hopeful, then I don't know what is. I asked her opinion and she said " I'm optimistic" She also said I may need to be on vibrance one day or may never need it at all
I can understand the fear, because I still have it. I'm only 31 and have a 4year old. I've had a lot of tears and breakdowns over not thinking I was going to be there for my son growing up, and he'd forget me. As days go on , the fear is there in the back of my mind, but I keep the belief that it is possible to do well and survive. I'm not dying today or tmr , or any time soon, so I try to remember that.
so even though I'm a year out only, hopefully this provides some hope to someone out there
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Hi, just bumping this topic to see if any new folks to BCO can chime in!
S
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Thanks Sandi I was going to do that the other day.
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Nicolerod, I understand where you are coming from. I got my final results just this Tuesday. I am 53 with stage IV with mets to the liver. Two tumors, one 7 cm. My original breast cancer had an onco type of 7. 7% of recurrence! Well here I am. My oncologist was very encouraging that since I was HER- , results would be promising. He wants me on ibrance and Faslodex, of course pending insurance and that's a whole different story. He said that even though it may be a long road, I could still have years to come. So my husband and I walked out encouraged and my husband happy that we would grow old together. So like you, I have researched, read comments on this board (good and bad), and have read until I am not sure what to think.
I haven't even told all my family yet. My parents being the last. They are in their 80's. When I completed my treatment the first time, they didn't want to talk about it anymore. Their way of thinking is just not acknowledging and it will go away. I guess that's their version of positive thinking. Some family, didn't even acknowledge it at at all. I was thinking if I can look OK, then my family would not need to know. However, my husband encouraged me to do so. Like you, I feel they don't understand. Luckily, my husband and my sons are very supportive. Unfortunately, one of my sons does not know, because he is in the Navy and is at Sea and can not be reached. But not sure I want to distract him from his mission. He is a flight officer. My Navy son got married last year and my youngest married this July. I want to be around to see grandchildren. I feel like I need to positive for everyone else. My sister asked how I felt mentally. Between me and you, I have no idea.But I told her, I was totally fine, that this is something I will just have to live with. But I did not tell her that I am so afraid of the side affects, being alone, and the uncertainty. I just want someone to care.
I certainly understand you. Some of what we are reading is scary and sometimes its just hard to be positive. It is very overwhelming. But for now, I think I am going to try to hold on to those who commented that they're fine and living near the five year mark at least. At least for today. Thanks everyone for the positive comments and for listening. Nicole, please free reach out. Maybe we can get through this together.
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karen...thank you for your post. I really felt validated and felt...like you did TOTALLY understand how I feel...especially because A LOT of what you said mirror's exactly mine and my husbands situation. My husband is an Active Duty Marine so I totally get the situation with your son being deployed right now.
You and I are only 2 years apart. I am (just turned last week) 51.
You said your onco type was 7.7?? Thats really low?? mine was 49...I would have definitely needed chemo but we then found out I was stage IV and went straight to Ibrance/Letrozole and Faslodex (and Lupron to shut down my ovaries). I hope your insurance will cover it all. My MO that I had when diagnosed chose to go all out and follow some new studies that concluded saying Faslodex and Letrozole with Ibrance is good. I haven't met any one else who's MO will do Let with Faslodex. However now I have new MO because we moved (husband got stationed) here in Virginia.
I have 2 tumors in Liver as well. Mine at last PET in August was 1 tumor was 1.7 x 1.4 cm and the other was 2.2 x 2.1 cm.
Karen what GRADE is your cancer?
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