A place to talk death and dying issues
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Welcome Treehouse to the club no one ever wants to join.
Maybe your oncologist is trying to be optimistic? Maybe trying to break it to you gently? Maybe have you get used to having Stage IV before discussing your prognosis/longevity? I don't know.
There are stories of people living many years with mbc, some 3-5, some 10 years, some 15, some even more. All of those stats are based on the past. Treatments have been improving, and patients are living longer with mbc.
We had Stephanie who had "advanced breast cancer for 25 years." Stephanie was an amazing lady and a wonderful resource. https://community.breastcancer.org/forum/135/topics/842670?page=21#post_4845847
It's important to get a thorough diagnosis (including the type of breast cancer, hormone status, type of mets, etc,) and find an oncologist you trust. Then a treatment plan is developed. Treatments can be effective or not, and side effects can be minimal or not. Treatment plans evolve to deal with these changes. Your oncologist will guide you through treatments.
I'm not sure if people die of bone mets. I'll let someone more knowledgeable answer that.
I'm sorry for your diagnosis. I hope that you find support and friendship here.
Mominator / Madelyn
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Treehouse, it is really hard to put a number on life expectancy with MBC right now. There are too many new treatments and treatments in the pipeline to pin that number down. I think of it for myself as a totally unknown number. No one else knows so why should I? I just move along living my life as best I can. I'm not sure what knowing that number would mean to my life right now. What difference it would make?
I can't say if an MO would mislead a patient. Some might. My former MO mislead me all the time about a variety of things. He got incensed when I bought life expectancy. I'm almost 70, though, so I don't think anyone would say 40 years to me. Since they just don't know, yours may think, why not give her the most optimistic estimate possible. They all believe in this positive attitude crap.
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Treehouse-I asked my oncologist 6 years ago (when I was first diagnosed stage 4, I was stage 1, at 43, in 2005), what the average life span was, once diagnosed stage 4. She told me if it was only in your bones it was 2 years, if it's in other organs 1 1/2 years (mine was first in my spine, lungs, and lymph nodes). She did say to me though, she had 2 patients that were 10 years out, and one was still working. I stopped working after the first treatment (faslodex) stopped working after a year and a half. I figured I didn't have much time left, since the average for my scenario was 1 1/2 years, and I wanted to spend time with my husband, 4 adult kids, and 3 grand kids. Also, my aunt (married to my father's brother) who was stage 4 from the beginning, only last a year and a half, and my friend's husband was the same. Well here I am, still doing the things I want. I'm 56, and have slowed down walking, and sometimes use a wheelchair if there is a lot of walking or standing (on vacations, mostly), taxotere (my current chemo for the past year) has made me lose all my hair (including eyebrows and lashes) and has lousy side effects, but I'm still here! I always say I'm living with cancer, not dying from it!
Hugs!
Lynne
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Treehouse, you dont die from bone mets only. If it stays in your bones, you will live a long time. Eventually it will spread elsewhere and then the statistic changes.
Lynne, I can’t believe your MO gave you two years with bone mets! I was also diagnosed in 2011, de novo, mets to bone. My MO told me I was going to be around a long time. I thought he was just trying to make me feel better. Yet I’m at still here and doing Well. I keep asking him how much longer I can possibly live at this point. His answer is still “ a long time”. I’m tending to believe him now. Makes for a better life anyway
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Mominator- thanks for the reply. So interesting to read about Stephanie’s “light from around the world”
Jaycee- fancy your oncologist misleading you- this is my own suspicion so its good of you to tell me about your own story
A beautiful Sunset\Mominator. Thankyou both so much for going to the trouble of replying. Isnt it confusing, even with oncologists themselves, one saying you can die in two years with bone mets and the othet saying not!
I find it hard to get round the uncertainty, as I suspect most of us do. Maybe medical science isnt that scientific after all!
Thanks again for all your replies and my very best to you
Xxx
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Abeautiful-Actually, I asked for the average, and it was 2 years with only bone mets and 1 1/2 years with organ involvement (which is what I had from the beginning, in my lungs, now also in my liver). But in the next breath she said that she had 2 patients, 10 years out. Again, I asked her the average, because it is different for everyone. I am 6 years out, and have been on 6 different treatments. When I first asked her how many different treatments do I have left. She said lots, and then answered 10, plus clinical trials. I didn't think that was a lot, if all of them fail after 3 months (about half of mine have done that so far). I even forget I have cancer sometimes (until I look at my bald head in the mirror, which is not often). I live one day at a time, and most are good days. I'm not going to ask her how long I have. I don't want to know. Nobody knows how long we have. I like your oncologist's answer! Believe him! Hugs!
Lynne
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Treehouse, my St 4 de novo cancer spread to my brain last summer. I have more than 20 tumors up there (two of them are over 4 cm in size), and whole brain radiation was only supposed to buy me a couple of months, but here I am. Yes, the mets are growing again as evidenced by increasing headaches and even more dizziness, but I'm not letting it get me down. I'm still on a low dose of steroids to help with brain swelling/inflammation, and I take CBD tincture to keep seizures at bay.
The clock obviously gets "reset" after brain mets crash the party, but once again it's only an average. As to whether or not brain mets "will kill you," my MO said it depends on where they are, how big they are, and what areas of the brain they're impacting. So they won't necessarily kill you either, just make your life miserable: you can lose your sight (which I am), and your ability to walk (I'm also dealing with that), and words/talking become a little more challenging. I'm only 59, but I feel like I'm 89 because I have to walk with a cane/walker all the time and have trouble processing what people say to me sometimes. There's really nothing I can do about this progression. They can't radiate me anymore or it will cause "tissue necrosis" and brain damage.
Yet I try to remain grateful for every day I have. As I've said before, I'm happy when I wake up and can still see a little bit, walk with my cane, and can still string a few sentences together.
None of us knows how long we have. Some of us won't even get a full year fighting this dreadful beast, and others will get well over ten years. There's a woman in my "LIVE" support group who's passed the ten-year mark, and she has ORGAN mets, too. You don't usually live that long with liver/organ mets, or so they say, but this woman is doing just fine. Of course, she's had several different lines of Tx over the years, but it doesn't deter her from raising her kids, traveling, and living her life.
Hope this helps,
L
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Hi Lita
Thanks for such a detailed reply, it was beauriful and it has made me cry , in a good way.
I think I am going to let the matter rest now as I feel, thanks to you and others , that i have asked a question that cannot be answered.
I am both embarrassed , humbled and grateful in equal measure after reading your reply. The word “awesome” is overused these days, even to describe items of clothing, but in its most purest form , I am in awe of your strength, courage , attitude and gratitude.
Thankyou so much ,and for what its worth my love goes out to you and I wish you everything you would wish for yourself.
XXX
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Hi all, due to the deaths recently on bco and one of a super nice girl that I met a couple times at my cancer center through a Facebook group, I am wondering if they knew what lay ahead. For those who passed suddenly (to me at least) and had posted here or there just days before, do you think they knew it was going to be the final trip to the ER for example?
Before I got cancer myself, I thought everyone died slowly, spending months in a hospital (I probably watch too much tv), I’m having trouble wrapping my head around those gone so quickly, seemingly without warning.
Anyone have any insight or are you all just as confused?
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illimae- Having watched several family members die from cancer, it seems to happen slowly, then all at once. They fought and lived for years, losing a little bit of strength and health and independence here and there, more and more. Then , the proverbial “turn for the worse.” I do think they knew going into the hospital that they wouldn’t be coming out. I’m sorry for the loss of your friends. ((Hugs)
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Good question, illimae!
I think any trip could be a last trip to the ER. So many factors: how sick/weak someone already is, if an infection or a complication arises, if a vital organ is shutting down, etc.
I think at some level, both Linda and Kandy knew they were getting towards their ends.
Linda last posted on 1/9/18 that she was going to meet her MO to start hospice. She died 1/11/18.
Kandy first posted on 1/ 11/17 that "Unfortunately things are going downhill." She fought hard that last year. She died 1/18/18.
My Mother started hospice at the end of January. Her doctor recommended hospice because fighting a blood clot was causing internal bleeding. No other treatments were working. She did well for most of February. She was comfortable and happy. She enjoyed the Superbowl. On February 27 she refused any food or drink. I thought she had another week. She died February 28.
We just don't know.
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Treehouse, I hope that whatever embarrassment you felt has diminished. This particular thread has been around for almost 8 years and during that time most of the comments have been filled with compassion and respect for others. No one hears the news of metastatic disease without having many questions! Most all of us benefit from having a safe place to be curious, to ask for wisdom to be shared, to be open about fears and concerns, to find support, empathy, and solace. I'm grateful this topic still exists and that you found it. Perhaps you have discovered that here you can be genuine and real, be heard and respected, and feel comfortable returning ANYtime the need strikes. With lovingkindness to you and all who continue to visit this thread....
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Treehouse, I don't think your MO deliberately misled you. I believe cancer is so complicated and uniquely different in each person, that they give their best guess for each I individual.
I was told almost ten years ago, de novo will bone mets, that I had 2-4 years. At the time the average was 33 months. I did what I needed to do to prepare for the dying part.
Now, here I am, still very much alive and still celebrating life each and every moment. I have learned to live for each moment. I realized nobody knows when it is our turn, only my higher power. I also know, now, that nobody is getting out of this world alive! So celebrate life each and every day, making each moment the best you can.
Illimae, I have had almost 10 years of staring cancer mets in the face. I have seen LOTS of friends journey on. I believe some people know when it is time. I had a friend who saw an angel the night before he was killed in a hit and run accident. There was a gal I talked to, that I could tell was choosing to let go. Some people just don't want to fight any longer. And that is ok. And, yes, sometimes it sucks....
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My thoughts about how we know or don't know that we are dying continue to evolve. When I worked as a clinical social worker in hospice care, people who found themselves at the end of life would often ask me, "How will I know when I am dying? How much time do I have left?" Generally speaking, and with respect for their level of understanding and psychological state, I would ask them to share what they might already know, suspect, or anticipate about their dying "process" or expected life span. Some people had greater understanding than they realized (or perhaps realized but wished to have confirmed) and others were quite uninformed. (Over the years I no longer was surprised when people were admitted to hospice with very little or no understanding about how they had come to the point of being "diagnosed with a terminal condition.") With those who had cancer, I would share common experiences in the dying process--as well as how each person is truly individual and how there are many factors that might escalate or slow their dying process. And I would remind people that for all that is known about dying, mystery still abides as well. That's a very simplistic explanation of what I typically offered.
I discovered such a wide array of responses--both initially and over time! Some people embraced knowledge and grew more attuned to their bodies/minds/spirits as they moved toward death, others withdrew and seemingly resisted understanding and "acceptance" until the point of death, while others shifted back and forth from a place of understanding to a place of confusion. Obviously I cannot describe all the different responses, but I will tell you: Many people knew intuitively that they were dying and needed adequate supports in place in order to be open about their experiences and to find a measure of peace. Some of those people were denied the opportunity to be fully real and open with others, because the others--whether those be doctors, family, friends--did not want to accept that death was closer and even imminent. (And yes, time and time again, I heard that being genuine and open with very real concerns equaled the "loss of hope.") Some of the people who had very little support (outside of the hospice team) still managed to find acceptance and to die in relative or "total" peace. Some people clung to life, at times desperately, even as their bodies/minds/spirits were shutting down because they could not bear the prospect of leaving behind their lives, their precious loved ones. So many factors influence the dying process, in so many ways we accept and/or do not accept dying.
I believe that many of us are living while we are dying and that we may experience very subtle shifts but also very dramatic shifts toward dying and death. I've known people who followed an expected decline to the point of death, others who outlived their own and others' expectations about their life span, and certainly others who died much more quickly than expected. One of the challenges in contemplating and accepting death is the belief that we are absolutely living until the very end--whether those be days or hours before death, when we are "officially," "actively," and "obviously" dying. But I believe that we can be dying while we are living--just as we can be living while we are dying--and that we (and our loved ones) may not understand or choose to understand that. Then death appears to be sudden, when actually it is not.
As always, I offer my thoughts with hope they might be useful. Take what you need, and with the breath of kindness blow the rest away.
Kindly, and with respect for all of you....
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Good thoughts, Brenda. Thanks for posting.
Tina
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Thanks everyone, I’m not sure what I expected, I guess not many are going to announce “ok people, this is it”. I think I’m a touch too sensitive too, I’ve only been to 3 funerals and I was already 30 at the first one, so unprepared for this stuff.
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illimae—I was 34 when diagnosed stage 4 de novo. It took a long time (3 years) to fully wrap my head around my dx and everything it entails. I’ve been a part of many groups (online, in person, on trips for cancer patients)...watching people all around me (in my new world) die has been the hardest part. For example, I went on a trip with an organization called Little Pink Houses of Hope. There were 9 couples and 4 volunteers. My volunteer (helper) she had bc before but was currently a “survivor.” This was 2014. She found mets the next year and passed in 2016. Including her, we have lost 4 women.
I know you are talking more about at the end of life...look up Holley Kitchen. She came home from the hospital, on hospice, but died two days later. I don’t think she knew she would go that quickly. And i’m Not sure if that is because we “think” we will have more time at the end when all of our options are depleted or if our body does shut down that quickly. A friend of Holley’s, was a friend of mine from the above mentioned trip. She passed after about two weeks.
These two ladies were in TX. I’m in NC. So I also tend to think that with social media, we see the “best” of people. We can’t physically see what their day to day quality of life really is. So maybe a false sense of hope? If that makes sense?
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my stupid phone is acting up...but anyway, Holley and my mutual friends name was Courtney Lasater. She wrote a book about her life with cancer. It’s called “Infused.” Courtney was a hoot so I highly recommend the reading! She had posted on Facebook pictures of her and her little family...like two days before she passed. It wasn’t until I read her book that I found out she hadn’t been out of bed in the previous weeks and her husband had to carry her to the photo shoot, but she was proud that she stood on her own, for just that moment. So that’s what I mean about a false sense
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seriously going to throw my phone out the window...final thoughts....
I have lost count of the number of people I have seen pass away from cancer. Two ways I deal with it and try to make sense of it...my faith, but at the same time—it’s all a crap shoot. No real rhyme or reason. And it steals my joy trying to figure it out.
I hate that we are all here. I do appreciate this site and all of the people who share their lives so that we can lean on each other. Hugs.
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I really appreciate Brenda's entry about her observations. I am in a weird inner space, facing the most progression I have had in the four years since stage IV diagnosis. I am not sure what it means to have been through four different chemos, to be feeling pretty worn out from them, and to face more chemo with less of a chance that it will control mets. I knew that at some point I'd elect to stop treatment, but now that choice feels much closer. I will start Gemzar on Friday. Halaven did not work in the six weeks I was on it. From the last month on Doxil thru Halaven, there has been steady growth of mets. This thread is a godsend. One day at a time, eh? Hugs, Mame
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Mame,
I’m sort of in the same place as you. After 4 1/2 years of treatments I am exhausted. Qol is pretty poor.im actually in very little pain, but fatigue is major. I’ve been on Gemzar and Herceptin a couple of months. TMs say it’s working a little. Scan in 3 weeks. But, I do find the “ stop treatment “ idea floating through my head.
Yes, one day at a time.
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Kaption, So good to hear from you. I have always been able to eventually adjust to whatever new state this stage 4 process brings, and to get absorbed in my life again. Its taking a long time this time, as I feel punk and wiped out, have lost a lot of hair and am kind of depressed. I am meeting up with a little group of local friends who are all stage 4 this afternoon. That might help. I don,t have a plan now, and that bothers me. Keep in touch. Hugs, Mam
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Update of sorts: I just had second dose of Gemzar on Friday. My onc was very kind and candid with me about what lies ahead. I am entering the area in which one weighs the pros and cons of chemo, and decides at some point, to stop active treatment. She said that some people never stop, as they want all possible treatment, regardless of quality of life. I am in the QOL camp, and would prefer to feel better and use palliatve care and maybe hospice as early as possible. This past two days was a total wash, as I felt just like I was having influenza. So weak and sick! I am better today, and even went for a 2.6 mile walk, followed by major recliner -time. On Friday, I get dose # 3. The onc wants to do 4 doses in total, evaluate, and maybe try Carboplatin last. I have a biopsy of one of the scalp tumors this week. Its for a study I entered, which offers a 10% chance of finding a more effective treatment. I am open to that, but not expecting much.
Kaption, how's things?
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Thanks for the update Mameme. I’m having Gemzar issues and I think we’ll make a decision this week. I had 2 months, running a low grade fever that sometimes spiked to over 100.5. I had a week of scheduled then 2 cancelled weeks because of fever and blood counts. I guess the flu like stuff is normal after the first treatment, but it’s not not supposed to continue.
Anyway, have a PET/CT tomorrow then a decision. Qol is not great. So much fatigue.
Thanks for the thoughts.
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Kaption, sorry Gemzar is not treating you well.
After my 11th Tx on Gemzar, my feet, ankles and calves have swollen up...another delightful SE Even on my off weeks, my gastrointestinal tract acts up.
My pall care dr says chemo SEs are cumulative, as we all know by now. The longer we're on, the worse it gets. At some point, we have to decide when enough is enough.
It's a hard decision to make. Only you know your limit. No one else does. We will honor and support you no matter what.
L
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Good to hear from you both, K and L. Yeah, I kind of feel, at 67 especially, that to enter a period of no treatment may be a kindness to myself, in qol. It could even extend my life a bit, I have read. There is no "winning" at stage IV, although there may be that in the future. I want to use palliative are and hospice as much as possible, hopefully having some better days ahead. The votes aren't in yet, just musing on what may lie ahead.
K, have you felt flu-ish with those fevers? I would imagine so. You have been a trooper, hanging in there with this stuff. Hugs, Mame
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Mame, I finally stopped running fevers on Monday. Had my PET on Tuesday with only bad news. Progression in liver, bones and lymph nodes. CEA at a all time high. Moving to Kadcyla.
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I haven't been on this site and a while. Have any of you heard any news on bluebird?
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I see that bluebird hasn't logged on since April 27, I hope she is just busy.
After being on the books for 2 years, California's Right To Die law was overturned on a technicality this week after being challenged by a group that has ethical concerns about the law. The State AG has 5 days to file an appeal (which would be Sunday?) and he has said he intends to do so. Knowing I had this option gave me a little peace of mind after what I went through last year. I hope to never want or need to use the law, but I do want the option. I really hope the AG gets this squared away quickly. It's not my intention to start an ethical discussion on whether or not people support Right To Die laws, I just want to make sure that other Californians are aware of the status.
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Oh no Lori. I hope the AG gets it fixed. I'm not in CA or I would write. Please keep us updated.
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