Bone Mets Thread
Comments
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Tree, I also have plans in place. I told my dear family what my wishes are from me being diagnosed as terminal and at the end stage of this horrible journey. Of course my dear family doesn't want to hear that, but I have to remind them that not only am I getting older, but I have bc. I am taking it day by day, I actually feel good, besides the arthritis. I try to stay upbeat about it all. And your comment was helpful because it feels good to be able to talk to someone and they answer back, because they are going through the same things you are. Thanks!
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Good Morning Macyhen,
My onc will not venture any guesses on how long I will stick around, "everyone is different"
My neighbor's ex wife was dx over 2 years ago and was told that she only had 2 yrs left.
So Macy don't worry about prognosis or life expectancy. Knowing your Dr's opinion will not make a difference, At this time of life you should just live it as wel as you can.
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You are right Nycchutzpah, When my time comes, it will be my time and that's that. I guess what I really want is for my onc to show the same enthusiasm that she did when I was first diagnosed. Now she seem so solemn when I see her that I let it bring me down. I've gotten to the point that when I see her I try to make her laugh and smile, which she usually does by the end of the visit.
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Macy,
The answer to your life expectancy is that we just don't know. And that is a very good thing. It wasn't that many years ago your onc would have told you that your life expectancy is measured in months, maybe 18 to 24. But today that isn't the case with all the treatment options we have.
As long as your mets stay in your bones it is a very good thing. You don't die from bone mets. But even if it did move to an organ, the treatment options continue to give hope for a long life.
Just think, we have seen women live for 10 - 20 years as stage IV. I just can't help but think that if we are alive 10 to 20 years in the future that they are going to be new treatment options that will continue to help us.
Unfortunately, as Tree mentioned, it can turn on a dime. But with something like 16 different chemo options out there, and a women who is willing to take on those options, you have a chance for many years.
The opposite was my sister. When she got bone mets she gave up. Didn't want to go through all the treatment again like she did when she initially was dx'ed. This was back in 2004-2005. She was gone in less than a year. The treatments make a huge, huge difference. There is every reason to have hope.0 -
I also should have mentioned that you can find prognosis numbers on websites such as American Cancer Society. So if you see those numbers or somebody else tells you about them, don't take them to heart.
First, they are old. They always have to be looking at historical data and women with BC today are making history by living longer and longer lives. They also group everyone together. Whether they chose to treat with all options available or to just give up. And all stage IV are lumped together regardless of where the mets are.
So if someone shows you any prognosis numbers, don't think they pertain to you! Remember, you don't have an expiration date stamped on you!0 -
Thanks AnacortesGi for sharing your sisters journey. Sometimes I feel like giving up, but then I think cannot. I feel to good to give up. While talking to my chemo nurse yesterday she said by looking at my labs it looks like I'm not even on chemo or have cancer. Lol I told her that's because I don't have cancer, she looked at me like I had lost my mind, I just laughed. What's even stranger to me is that after 9 weekly chemo infusions I still have most of my hair, it sheds when I take my braids down once a week. This bc journey is a trip
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I agree with you, Macy, it is a real trip. People look at me now and ask if I'm cured. Like you, I say yes. it seems that way doesn't it? Am I going to,stand there and tell them that I'm treating monthly, which is what I do say, and I say it's kind of a miracle. but alway, in the back of my mind, I know I have cancer. Stage 4 cancer. The killer cancer. I worry. I try not to but can't help it. It's a worthy worry, but I have no intention of giving up. I refuse. Sometimes I laugh at it, at how crazy it is. Other times I cry, asking" why me? What the hell did I do?" There are no answers and I keep on going. But I like a good laugh, I'm cooking again,( what? Me cook?). And am trying to keep joy in my life. Which, for me is, trying to keep a happy head..
OK, back to the study of bones. My cancer also went into my lungs..0 -
"This bc journey is a trip"
Macyhen, you nailed it!
Caryn0 -
macy, the day the onc told me of the stage iv dx, she said something like "with treatment you can live a number of years." My bold response to her: "Define YEARS". Because that could be interpreted SO many ways, right? And she sort of shrugged her shoulders and said, "5, 8 or more." She then said she had a woman who'd been on a 10 year plan and now she was working on a 15 year plan. Now that I know much more about stage iv, I have NO idea what the onc was talking about with these 'plans', but at the time it gave me some hope. Altho, also at the time, I was in my mid 50s thinking I was gonna live till at least 100 like a couple of my grandparents did, so just a few more years at that time didn't sound like much!
I now look at life from a much different perspective, and live much more in the moment. I hope I AM around another 10, 15 years, we'll see. Much of what you'll hear on these boards is if a doctor gives you some kind of grim prognosis, maybe seek other medical opinions. So many of the grim statistics are wrong. You'll also hear that none of us has an expiration date stamped on us, and the oncs aren't gods, they really can't say what kind of time we have left.
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I think the standard answer, if they will give you one, is 3-5 years. But so many women on these boards have far surpassed that.
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I know kaymic that's why I keep coming here. You ladies never fail me and I get very good info from you all. Sometimes I also feel sorry for myself, and ask Why me. But then I think why not me. Maybe by my being sick it will help my daughter's to be more aware and proactive with their health. Right after my diagnosis my eldest dd went to her Dr. And demanded a mammo. They told her that she has some calcification and they will keep an eye on it and give her another mammo in 6 months. Before this she kept asking for a mammo because of lumpy breast tissue, but they told her she was too young. Being on these boards I have learned that bc is not just a elder woman's disease it can strike anyone at any time. I got yearly mammos and even a few ultrasounds in the spot where they found my cancer at that time that they told me it was just a cyst.
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I didn't ask because I knew I wouldn't get an answer. All I said was "when it is time to quit treatment I expect you to be honest and tell me" . He just looked at me and never answered. At that time, I never even thought about my saying enough or my knowing it was time to quit. I have extensive bone mets and haven't been truly stable in these 15 months. Who knows how much our bodies can handle, even with just bone mets, it can be some secondary thing that brings an end to this journey.
For me, after 15 months, I'm glad I don't know and wasn't given a range of years.
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Sometimes I think the onc's don't want to really answer because it may feel like a failure on thier part, as well. They couldn't beat the cancer with their knowledge. They may not want to give timelines out of pride or their own sense of denial. I know my old onc would not tell people their time was near until it was almost too late. I had a feeling that was his style, but I didn't get confirmation of that until I met a hospice nurse and she told me. I need a little more notice, and not an onc who lives on the banks of denial.
Sometimes when I ask my new onc about life expectancy, he doesn't answer and tells me he thinks they will cure cancer in 10 years. Ok, well goodie for that, but what about my cancer now? Irritates me. The next time he says that to me, I am going to confront him on what that has to do with my current cancer.
But one never does know. One day you are fine, and the next day, you are not. That's just how it is.
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Macy, I was told by one doc that I would have about two years.......this prompted me to ask my GP about the possibility of getting a disability pension. He said that I would qualify and got the paperwork done. As he was filling it out there was one question there being about life expectancy being no longer that two years. I asked him at that point what would happen if I lived longer her looked at me and said, in all seriousness, we doctors have been known to be wrong.
That was in May 2009 and here we are, February 2013 and I am still here and still going strong.
My point is, that no doctor can know, even at the very end of life, how long we have. My advice to you and any other who wants to take it on board is, live everyday as if it were your last, draining it of every bit of joy that you can find. Live the day with laughter on your lips and appreciations of the beauty and love that surrounds you. In the end, no matter when it comes, you will be able to say with all honesty ' I lived well and have no regrets'.
Love n hugs. Chrissy0 -
I haven't asked for my prognosis, since I practice living in the day. I completed my 7th radiation treatment, out of ten, today, and am still overwhelmed being diagnosed with staged 4 breast cancer, after my initial diagnosis of stage 1 in 2002. The mets were found on an MRI which I had because of tremors and it was time for my 6 month check-up for lung cancer. I don't know what I feel about being left out of the breast cancer "frenzy." I do know there are a lot of hard feelings from the lung cancer community about the attention and funding that breast cancer gets. Anyhow, I am glad that this group exists and I can come here and join in the conversation. Ginny
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I haven't been overly concerned with how long I might live. Both my mo and RO said in their opinion, I have quite a few years left but both said there are no guarantees. It could be more, it could be less. I truly appreciate their candor. They are not in denial, not hiding behind ego because they can't cure me, they just don't know. My current state of disease gives few clues so I'm not going to worry about it for now.
Caryn0 -
Since yesterday morning, I have had really bad pain on my left side from under my arm all the way down my left side. It hurts badly when I stand, and I can't lift anything at all with my left arm without it hurting my side.
The pain started before I had my first zometa last night, so it's not that.
If I didn't have bone mets, I would think that maybe it is just a pulled muscle (two days ago I had to hobble a long way around the hospital with my cane and maybe I twisted somehthing).
But since I thought my bone pain was muscle pain for a long time before I was dx, I know I'm not good at differentiating pain sources.
I'm currently taking a fentanyl 25 patch plus I just took 600mg nurofen. It just takes the edge off but doesn't really help.
Any ideas? I'd like to wait a bit and see if it gets better by itself, but am not sure.
I didn't bump myself or fall, but maybe it's a stress fracture to a rib? Anyone know what that would feel like?0 -
When my oncologist told me about the mean survival stats (2.5-3 years), I didn't know what to think at first. I was also in the throes of consequences from the Tamoxifen induced tumor flare. Because I was in so much pain and debilitated, I suppose I had a quiet acceptance of it. But as I began to feel better--pain management kicking in and working well--it began to feel a bit unbelievable.
I am amazed at how I perceive this reality. It is ever-changing. I have always been a change agent in my professional life--able to move with the ebb and flow, and often the cause of major tsunamis that washed over professional departments. But I have never been so increasingly flumoxxed by the change I am experiencing as a result of breast cancer. Urgency--then no urgency. Pain--then no pain. End of life feeling as it it's looming--then end of life? Not so much.
I recently told a friend of mine that if I hadto face another major life change (losing my job, having to move, etc.) I feel as if I would break in half.
My hope for everything todayis that you have a good day--a carefree day with little to no thought of breast cancer--irrespective of the challenges.
Scorchy
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I try to stay as positive as I can, mainly for my families sake. Whenever I am down they constantly ask me what's wrong, and that makes me angry. I feel they should understand that I am facing a life ending illness. But then I think about what they must be going through, they are just as uncertain about this bc shit as I am. I really hate that I have this disease and feel guilty that I am putting my family through this. I am a firm believer that what goes around comes around, and I think I must have done something really bad to someone and now I am getting it back. But for the life of me I can't think of anything I've done. I want out of this funk that I've been in for the last couple of days. Usually I am pretty positive about this whole thing, especially with the help of my anti depression and anti anxiety meds, but they don't seem to be working. Hopefully I will break out of this soon!! Have a wonderful day all my wonderful sisters!!!!
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Well its starting at work. One of the girls complained to my boss because I fell asleep at my desk. Guess I can't take anti anxiety meds anymore. I felt bad for my boss because I could tell she didn't want to say anything to me but had to because of the complaint. My boss is super nice and understanding and flexible. The girl sent me an email (she sits right behind me) and said she was the one who told because she was just concerned about me. Yeah right then why not just ask me if I'm ok! No tell the boss and try to get me in trouble. Well I'm glad I know...I have seen the light!
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Scorchy, well I am one of the ones who hate the word "survivor" I am not one, if I was I wouldn't have metestatic breast cancer....
my dr. knows better to talk to me about how long I will be here....
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Does anyone know if chemo drugs can make you depressed. I started a new chemo this week and I have been down since then. I take Prozac and klonopin and am usually in a pretty good mood. I just can't seem to get out of this depressed feeling. Also I am feeling a little paranoid. Hope it's not the new meds, cuz I don't like feeling like this.
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macyhen, most of the cytotoxic chemo agents do not actually cause depression, but they can cause fatigue, weakness, lethargy, malaise - all of which can seem like depression. Or can cause depression because you just don't feel like yourself. Just having to deal with BC is enough to cause some depression. There are so many possible causes, but the main thing is that you can do something about it. Do you have a counselor or psych therapist? Do you practice mindfulness-based meditation for stress or pain reduction? Do you do yoga, tai chi, qui qong, or other practice? Do you have a solid support group that you can talk to in person, not just here? Your prozac and klonopin may need to be adjusted. Sending you much lovingkindness and hopes for a better day tomorrow.
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Thank you Linda-n3. I have a great support system from my family. I am thinking about doing yoga, and possibly meditation. I would really like to join a bc support group in my area. I guess the fatigue is probably getting to me. I was diagnosed with depression before my bc journey. There are going to be many days where I'm not feeling my best mentally and I'm going to have to figure out how to handle them.
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I asked my dr that because I felt depressed on chemo too. He said it was just the whole cancer thing but I don't think so. I was dealing with it and feeling fine before that. I thought the chemicals were doing something to make me depressed.
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I don't think we will every know how chemo affects the body....I said something about chemo and my brain and my son who is 19 said, what, I said it goes into your brain, he said no it doesn't, I said what you think it goes in every other part of my body and not my head/brain, he said yea.....as I have said people have no idea what we go through, how it makes us feel and what it does to our bodies immediately after chemo, the night of, the next day, etc.....and people just need to STFU and leave us alone...
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Blonde I think your son was right as there are very few chemos that cross the blood brain barrier so affecting the brain is not high on the list of SEs. Having said that, it has been proven that there is such a thing a 'Chemo Brain' caused by the inability of the blood to carry enough oxygen because of the reaction of chemo on the red blood cells.
Love n hugs. Chrissy0 -
thanks chrissy for that...
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My DH asked my MO about my prognosis and my MO said there was no expiration date stamped on me anywhere, Then my MO asked my how long I wanted to live and I told him that I wanted to live long enough to see my youngest DGD get married and he asked how old she was and I told him she was not even born yet. We all laughed and he said he would do his best to make that happen and I agreed to do my best also. I do have good days, bad days and very bad days, but I am still looking forward to seeing little Kelsey get married one day. She turned 1 on Jan. 20, 2013. (I was dx in July 2010.) If I live that long I will be around 83-85 when she is old enough to get married!
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Hi everyone,
I am glad I have come across this forum. My mum has breast cancer with one spinal met on her sternum. She has just finished 2 courses of chemo and will start radiation in a few weeks.
She has struggled through the chemo spent nearly the whole time in bed and has a very negative approach in general and has already decided she will refuse more chemo if it is recommended.
She will not discuss her situation with anyone even members of our family.
She has never had a second opinion and my take on it is that the initial drs involved all gave her different diagnoses. One basically told her that she has 2 yrs to live.
After reading many of these posts I think that that sounds unlikely as they were able to remove all of her breast cancer and it was not in her lymph nodes.
She will have a bone scan again after the radiation.
I am sorry I can't post more technical information but she has hidden all her test results.
I am thinking of gate crashing her next appt and asking the hard questions.
Happy to hear any feedback.
Best wishes to all of you who fighting so hard xxx0
