My expected life in years?
Hi Ladies,
I am hoping someone can help me and answer a question I have.
With this DX, what are my chances of living a long healthy life. ?
I am only 44 and all I think about is dying and how many years I have left. It never leaves me for an instant. I get all different responses from a "stat" view but I wonder if any of you can tell me your experiences, people you have heard of and generally a good reassurance of my expected life.
thank you so much
Liz
Comments
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Your expected life in years? What would you like it to be? 20 years? 30 years?
I have somewhat similiar stats... and I'm still alive 3 years later.
Unfortunately, no one can guarantee us anything. Try to do the best with what you can control (treatment, taking care of yourself) and you are just going to have to let the chips fall where they may and let the rest go. Try not to drive yourself crazy with the regrets and "what ifs".
If you are the type of personality that tends to be overly anxious and dwell on the negative, talk to your doc about anxiety meds and work on some natural methods too..like journaling, exercising (mood boosting endorphins), seeing a counselor, meditation... whatever works for your personality.
The Big C can be a hard pill to swallow, but please don't let it stop you from living your life. Hugs to you!
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Good response from SusansGarden. I am stage IV and two years out from dx. Except for a 3 1/2 month medical leave from work at the beginning, my life is pretty much back to normal. Neither my primary onc, second opinion onc nor radiation onc can tell me how long I will live. That's fine with me as I plan to keep living until such time as I can't. Focus on staying healthy and enjoying your life. If you're having trouble moving beyond thoughts of dying, counseling can be very helpful. Yes, bc is a hard pill to swallow but don't borrow trouble until it comes knocking at your door.
Caryn -
Hi Lizrose - I think I may have an idea of where you're coming from. For months post diag I thought about BC all the time. I ran the stats over and over in my head. Someone on one thread said it is like BC radio and the dial is tuned to it 24/7 and that is all you can hear. Over time the volume goes down gradually and eventually it mixes in with all the other stuff going on in your life. Noone knows what is ahead for them, but if I were a betting person I would wager that you will have a good long life.
I had a complete breakdown post dx. My PCP physician recognized the signs of anxiety and depression and put me on meds. I also met with a counselor for several months to help me work through things.
It is going to take some time for you to start feeling better. I wise dr told me it might take a year or two for me to accept the diagnosis. He was so right.
If I can be of any help to you just let me know. -
Lizrosa, sorry to hear you're going through this--first the Dx, Tx, and then this anxiety. I know I had it. In terms of practical answers, have your doctors provided their estimates? In my case, my tumor was also also stage 1 and the docs talked about the risk-of-recurrence, which means the risk of the cancer returning. This does not equate to the risk of dying from the disease, because I could have the cancer return, be treated, and continue on my normal life expectancy and die of something else, like heart disease. Your doctors will be the best source of info, though some people also use the website CancerMath.net.
But I found, that even with my doctors' input, I found myself focusing on the risk of it returning, vs. the probability of it not returning. i.e. if I had a 20% risk of it returning, that meant a 80% chance of it not returning, yet I focused on the worst case scenario. I drove myself crazy, post-Tx, trying to live the perfect lifestyle, eat all organic, all the time, etc etc. In fact, I had so much anxiety I went through a 6 week period of intense insomnia--practically no sleep at all, every night for 6 weeks, yee! (which, incidental, is not all the fun or healthy). Ultimately, I found help talking to a counselor a few times. Do you have access to any support? My local cancer support center has free counseling sessions, along with support groups. I also found a guided imagery support group for cancer patients, and met a wide range of patients, some going through Tx, some long-time survivors. The first meeting I met a couple 13+ year BC survivors, someone who had a BC recurrence and was 8 years past her second treatment, and other long-time survivors of other types of cancers. It felt good to gain that perspective. I can't say that I immediately turned around my attitude, but over time it did. Believe it or not, there are days when I don't even think about BC at all.
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I think you have a very, very, very good chance, no excellent chance of living a long and happy life!!! I know it is hard, the worry but keep trying to push it out of your head.
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It is a hard pill to swallow. I hope you had a chance to use one of the calculators to answer your question. It's been a year and a half and I probably think about breast cancer nearly daily. Counseling may help you process it. I wish you the best.
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Hi Liz,
Yes, this can be a derailing experience. I didn't do the math for you, but I had a worse diagnosis, and once I got that sorted out, I realized I would most likely be here for the long haul. My nightmares were about finances, not about cancer. I have my own business, so guess where my worries are?
Anyway, your focus should be to maximize your odds of survival by doing the recommended treatment, and then a reasonably healthy lifestyle. I use the word "reasonably" because there are things such as "slouchfests", girls nite out, and pastry shops. Exercise is very important, but we should all be doing that anyway.
Four years later, I am happy and healthy despite being a "high risk patient". I have taken my career to new places. I just did a personal best Seattle-to-Portland Bicycle Classic. I am more discliplined about exercise than I was previously, and I see the end of five years of anastrazole. I still worry about finances. I do a lot of work with a brain tumor patient organization as a way of giving back.
I found it helpful when diagnosed to imagine myself a year later, fit and healthy, being no worse off than having very short hair and being missing a couple of chunks of flesh. I got there just fine. Good luck! - Claire
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I can't think of one single person I've met in all my years with this disease, who hasn't lived waaaay beyond their projected statistical survival. Stats are just a number....a conceived guess really. Like someone else said above, if I had to bet on it, you're here for the long haul.
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@ Lizrosa:
My wife knows what her trusted doctors told her. She knows what the survival calculators (PREDICT, Cancer Math) say...
It makes NO sense not to bet on her.
I am betting on my wife. Are we supposed to 'pack it in'? Her odds are too good.
We were never given a guarantee in this life-----but we've always harbored HOPE. We have tons of reason to hope.
I am betting on my wife.
And I am betting on YOU. -
"With this DX, what are my chances of living a long healthy life. ?"
I don't think anyone can tell you that. What doctors and risk calculators can tell you is what the odds are that you will die as a result of this diagnosis of breast cancer. Assuming that you've had or will have all the recommended treatments, it appears that the odds are pretty low that this diagnosis will shorten your life.
Whether you then live a long, healthy - and happy - life is up to you!
There's no question that the first year or so after a diagnosis (or after treatment ends) is unsettling and often scary. It's hard to forget that you have faced your own mortality. So it's normal to worry, and to think that every ache and pain is a sign of cancer. But over time those feelings fade. A diagnosis like this does change your perspective on life but after a while it simply becomes another fact of your life, another experience you've gone through.
The best way to live a long, healthy and happy life is to live it, and to not dwell on what 'might be' or what 'could happen' or anything else you can't control. Give it time. See a counsellor if you think it will help. And do things you enjoy so that one day you wake up anticipating something you want to do, and you realize that you haven't thought about breast cancer for days. You will get there, but it takes time.
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Hi, Liz!! I had bi-lateral IDC! Stage 2 b in my left breast and Stage 1 in my right with one positive node! I am almost 9'years out and doing great!! I am taking aromasin and will take it for another 3 years!!! My treatment was very aggressive!! Just remember, hon!, you are a survivor on the day of diagnosis! I have a very strong faith, but I do whatever it takes to make me feel better, through nutrition and exercise!! You can beat this, and you will!! The odds are in your favor!! Take each day, and do something kind for yourself and for others!!! I am lifting you up in prayer right now!!! Kathy
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I was having one of those, "Oh my God, how long am I going to live" kind of days yesterday. I think we all get them. It is normal thinking in post cancer world. Since I was going to clean later in the day, I threw on my Komen Survivor T-Shirt. While driving, I saw a yard sale, and even though it was pouring rain, my intuition said GO!!
The woman having the yard sale greeted me with, "I have one of those T Shirts." She proceeded to tell me she is a 12 year survivor. Then she told me her mom and aunt are survivors and they are now in their late 80s. They weren't expected to live long and they are 30 plus year survivors.
It was the best medicine I could have ever had. Now I am passing it onto you!
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Great story, Denise-G.
I love hearing stories like that. -
Praise God I am alive 19 yrs after diagnosis, and my Faith in God along with family and friends support kept me fighting, so you and all of US are in my prayers daily. msphil(idc,stage2, 3 nodes, L mast, chemo and rads and 5 yrs on Tamoxifen)
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As others have said, there's really no way of knowing but the worst thing to do is worry about it 24/7 because if you live one year, you tormented yourself that entire time and if you live 30 years worrying about it, you tormented yourself that entire time. I think everyone deals with it in their own way. My mother never worried about dying after her BC dx in 2001, just went on to enjoy her life like normal, even planning her retirement years. Unfortunately (or fortunately, depending on how you look at it,) she survived for 12 years after her Stage IIIa dx. She died a few months ago on May 2nd but fully enjoyed every day she was alive until the last couple months when she got really sick.
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Good for your mom! This zen like level of acceptance is not always easy to achieve but it can be done. I'm there on most days, but I fully allow myself to feel the bad feelings too.
Caryn -
Hello, excellent community of wonderful people.
I am going to come at this from a slightly different angle, accepting everything here so far as great, sage advice!
That said, we've entered an interesting new territory with stats and figures. Since I got this sucker 3 years ago (by the way, my stats are very similar to yours, Liz Rosa), things have changed about how the medical community talks stats. First, most of the aggregates are from studies over the last 20 years, of course, because we can't see into the future. Treatments have changed, for better, and worse. They believe more people are surviving than before, yet the DCIS and overdiagnosis trend tends to make those numbers a bit changeable.
There is now a more activist stance in the field. Breast Cancer Action is demanding answers. Why do 25 - 30% of women continue to succomb to the disease, for instance? Clearly, so much more is needed.
That brings me to the Oncotype. Weren't you eligible? For me, that test gave me my life, and I say that without any exaggeration. My doctor told me to expect a high number based on my age and grade. It came back low/intermediate risk of return. Imagine. 10 years ago, I would have assumed I wasn't long for the world.
Does that mean I am? Well, this is where we all need to get out there and write letters (I've been participating in petitions), and send our money to the good organizations. I just can't explain why my Stage II friend who is the healthiest person I can think of recurred. Or why my friend's DCIS, which frankly I rolled my eyes at a bit when she got it 5 years ago, came back triple neg.
I'd be lying if I said every day isn't defined a bit by my fear of recurrence. Oddly, that fear is shaped more today than three years ago, as like Claire, my life has skyrocketed. The truth is, we live in a different universe caught in a web of incomplete information. She says as she gears up for mammography and MRI this summer. It has controlled my headspace for weeks. Just the sheer fact of having to go is a real control issue for me.
I think you know from trolling around a bit, and if your doctor is any good, from her/him--your stats are excellent, but pending Oncotype, perhaps a little less clear. On the one hand, however, I think dwelling there misses the point of accepting our lives as they are, no matter if we have this disease or not: precious, and fragile.
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Hi Liz: I had the same experience as you and love the early reply you received from "farmerlucydaisy." Your dx was so recent ... it's normal to feel afraid. I was so traumatized at first, I woke every morning with what felt like PTSD, reliving everything.
At the time of my dx, there was an online BC support site (Y-Me) with a 24/7 toll-free support line manned by long-term BC survivors. They made me feel normal and always helped to calm me down. All of them were initially afraid and told me those fears all lessened with time .. and they did. Sadly, last I heard, Y-Me closed down due to lack of funds.
During treatment, I was automatically set up with a psychologist specializing in oncology. She not only helped my frame of mind, but gave me practical suggestions to help me focus on positive things.
No one in life knows how long we have to live. A person might be in perfect health without BC, but die from a tragic car accident or unexpectedly from a brain aneurysm. I was told to think of BC as something to manage. My MO calls it a "bump in the road." I know it feels like a huge "bump" now, but your dx is so new. Give it time and get support.
Professional counseling will help you lessen that anxiety so much sooner. I can't recommend it enough ... and we're all here for you! {{ hugs }} -
Dear ladies
Thank you for all your advice and guidance. Every post was inspiring and wonderful.
Every day is a new day and I am trying every day.
I am still on chemo (had first taxatere last week and now going through agony with the side affects.. Stomach cramps will not go away). 2 more to go and then radio.
Sometimes I feel so ungrateful that I complain about treatment and how awful it is, when in fact I should be saying " Imagine if there was nothing to help me" ? i should be happy and grateful for all the treatment, support, and information where we can be helped.
Not everyone has this.
Thanks again ladies
Liz xxxxx -
Liz,
It is perfectly alright to complain as much as you want about the se's of treatment. We live in these times where there are treatments that help us and if the se's stink then we can merrily complain !
Caryn -
Dear Lizrosa!! I too had side effects from taxotere!! My onc told me to hang in there, that it would kick cancer to the curb!! It did!!! You have every right to complain!! But please hang in there!!! Taxotere really does its job if killing those nasty cancer cells!!! Blessings to you!
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I found my tumor in June of 2012. I have had a double mastectomy, 6 months of chemo, 33 days of radiation and have started
my hormone pills. I am also scared! I have no ideal what to do now! I am afraid to eat because I don't know what I should or should not be eating. I have read so many articles that I am totaly confused!
I would appreciate all help/advice that I can get! Thanks.
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Welcome dollcrafter,
This disease is fraught with lots of "fear" potential. The antidote to fear? Learning, learning, learning! Find credible, science based sources and learn as much as you can about the particulars of your type of bc. As for diet, healthy, balanced and with "treats" in moderation is doable for almost all. Does your breast cancer facility have a dietician or nutritionist available? They can be very helpful. If there are foods that you're not comfortable with, don't eat them. Many women who are ER+ stay away from processed soy but eat tofu or miso in moderation. Many also choose to buy organic when possible. But please, don't be afraid of eating. It is an enjoyable and often social part of life. Take care. -
Hello dollcrafter, and welcome to Breastcancer.org.
To add to the excellent advice from exbrnxgrl, the main Breastcancer.org site has an entire section on Nutrition that covers healthy eating in general, as well as during and after treatment, and nutrition and risk reduction.
Here in the forums, you may want to connect with members who are active on the Healthy Recipes for Everyday Living forum, and the Fitness and Getting Back in Shape forum.
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