Life does not end with a stage IV diagnosis (really!)
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You give me hope Exbrn......thank you. I am still in the rough time phase and nothing seems to be getting better.....
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Exbrnxg
When I saw this topic I immediately click on the tread- as it was completely the opposite as what I read after being diagnoised in March.
As I read your intro and other comments about how women were dealing with a recurrence, I felt strength in knowing I was not going to die in six months. I began reading on this site about other woman and their stories which gave me courage.
One X-ray turned my life up-side down and filled my thoughts with fear. All the professionals that had helped me through my original diagnosis in 2009 told me there is no cure but treatment will work.
Then I read a blog, written by a top oncologist at Stanford, by telling patients that recurrence can be managed through treatment was misleading - coming from a top oncologist at Stanford threw me back into the dark thoughts that occupied my many tear filled days.
When I read the comments on this page about how long woman are living with recurrence I felt tentatively hopeful about my own survival.
I find a sense of kinship on this site. No matter how scared or lost I feel during the day or night, I can always pull up this site and find support from woman I have never met.
So glad you started this thread - even if for my own needs. Thank you.
Annamaria
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Welcome amp! A new stage IV dx is quite a kick in the pants. Stanford is my second opinion facility but I’m not sure what you’re trying to say about the doctor’s blog. Are you talking about metastatic or local recurrence? Treatment can work on early stage breast cancers, for many, but there is never a guarantee. It is unfortunate for those who do, particularly if it’s metastatic, but it does happen. Even if 99% of those with an original dx never recur, someone will fall into that 1% and recur and no one can predict who that will be (those are made up numbers just to illustrate my point).
I wish you all the best
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exbrnxgrl - I should have been more clear about recurrence locally or distance I was referring to metastatic disease of which mine is
The doctors blog was about distance or metastatic disease. He felt that telling patients that metastatic disease was now being treated like a chronic disease was misleading to woman.
I now understand about treatment for my metastatic breast cancer that showed up after 10 years will be treated for as long as the treatment works.
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Exbrnxgrl. Yes this thread gives us hope. Thanks. Question re your therapy. I see you've been on all 3 of the AI's. Did you change due to progression or side effects.
My only side effect so far had been major insomnia. Loving life. This week we are off to Yellowstone and Grand Tetons for a week.
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Hi gailmary,
No, I have had no progression since original tx. I managed on anastrozole for about two years and then had a long run on letrozole. For both of these drugs, the se’s Got worse over the years. I recently started exemestane and am hoping for at least a few years without bad se’s.
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Forty-plus years ago when my mom had soft tissue sarcoma that became metastatic, there weren't as many options out there. She went in about 18 months.
"[The doctor] felt that telling patients that metastatic disease was now being treated like a chronic disease was misleading to woman."
Okay, which would you rather hear? "Sorry, toots, but you'll probably be dead in 12 to 18 months...maybe 2 years if you're real lucky," or "We're gonna treat this like a chronic illness and try to keep you stable and give you a decent quality of life for as long as we can."
I've just entered my FOURTH year (I'm St IV de novo from the get-go). My RO, MO and Pal Care dr told me they're treating it as if it were a chronic condition like HIV, diabetes, MS, etc., and that brings me a great deal of comfort.No, LIFE doesn't necessarily end w/a St IV diagnosis. Altho I'm getting weaker and more tired as the months go by (partly because of age - over sixty now - and unrelenting insomnia), I think I'll still be around six months from now.
There are no guarantees in life. Heck, we could all end up like those unfortunate folks in Virginia....no, they didn't die from cancer, but they all got shot up and died before their time anyway. So if I have a choice, I'll take what I have rather than get shot out of the blue at work - at least I have time to prepare.
L
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lita,
Thank you so much for your post.I agree that unless you truly are in a situation where death is certain, why shouldn’t a doctor impart some hope? Stage IV is clearly not chronic for many but for some, it now seems possible. Lita, you have been through tough times and have done it with grace and good humor and kindness to all. I am also in my 60’s, but I want to be just like you when I grow up 😉 ❤️
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Hi lily,
Sorry to take so long to respond. I know you've had rocky journey with bc and I wish it was in my power to ease your burden. Please know that you are in my thoughts ❤️.
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New ladies, welcome to exbrnxgrl's thread. This is the place I come, not to find false hope or grasp at straws or deal with impending doom. BUT to hear how folk are just getting on and LIVING, even though we all have plenty of stuff going on
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I am riding my bike again after 3 1/2 years. That is huge for me as I have been terrified of falling and breaking a bone or bones.
This past winter, I broke a rib while coughing and it wasn't the end of the world..so bike..be very afraid. You will not scare me anymore!
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Lita, I love you!
Tina
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Lita, I agree with you wholeheartedly.
Tina
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SandiBeach, here’s to you and the open road!
So, talk about normal life... my youngest grandchild, 15 months, was rushed to the hospital after a seizure and high fever. I received a hysterical phone call from older dd, aunt to the baby, saying she’d been rushed to the hospital. What a long terrible night that was for us. Fortunately, I guess, it was a febrile seizure. Not uncommon, but children who have had one seizure can be prone to them, so we will need to be mindful if her fever goes up even a bit. Most children outgrow it. We found out today that the ER doctor who treated Ellie is the mother of one of my former students 😊 .
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Lita57
Your post is the center theme of the letter I sent to the Oncologist who felt treatment of secondary breast cancer being linked with treatment of “a chronic condition" is some what misleading. I disagreed strongly with him. I encouraged him to rethink his statements.
My surgeon told me that the breast cancer in my rib was small and would be treated like a chronic condition. Personally, I was grateful for the change in treatment strategy.
As I learn more about my treatment plan, it is very similar to treatment plans of chronic illness. If a person quits taking their medication for heart disease - things would change for that persons life expectancy. I am very sure if I refused treatment or quit taking my medication, life expectancy would be different for me.
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AMP, I am coming up on 8 years at stage IV. I did have a bmx (they thought I was stage II), ands rads to my bone met, but never had IV chemo. I have swallowed one AI drug or another for every single day of those 8 years. I guess the hesitancy in using the word chronic is that with bc you can be cruising along with the sun shining and out of nowhere a crazy thunderstorm turns the sky black. Despite my good fortune ,so far, I don’t know if I will ever lose that the death knell could sound at any moment. It stinks
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exbrnxgrl
Being 3 months into my new diagnosis to this recurrence, it helps to read about women like yourself that have learned to live with recurrence of their breast cancer.
Although, they say, each cancer is different and each woman reacts difference which produce difference success stories, some good some not so good, it helps women recently diagnosed to have some hope for their future after the promise of life has now been questioned.
As I read this thread and all the activities woman are pursuing even after a devastating diagnosis, helps me everyday to look at my life differently - with a "day-to-day" promise of life and an new purpose of the day, wee, month and hopefully a long life.
I live on a large ranch with lots of work everyday, take care of my horses, travel to see my family more frequently, headed back to the pool for more exercise/training along with weight training to keep my body strong in my gym.
Summer has arrived at the ranch, this year everything seems particularly more beautiful than ever before.
Enjoy your summer.:)
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I'm going through radiation right now, treatments every day this week and three next week. So far, I've gone to exercise every day this week after my session. Yesterday, after exercise, it was beautiful and sunny outside, so I opened my sun roof and drove through the park with my favorite music turned up. Life is definitely not over!
In about 7 weeks, I'll be "celebrating" 2 years of life with this diagnosis and I don't feel close to my expiration date yet. Sure, things can change in an instant, but today, I am alive and embracing everything good. Not celebrating my cancer but definitely celebrating being alive.
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amp,
I know that much of stage IV can seem hopeless but for some, and hopefully many more soon, we live with this disease. Not always fun and easy, but I like to think I've spent the last ,almost, eight years living with metastatic bc, not dying from it (yet). The “yet" is the pragmatic side of me. I am not at a point where I can be lulled into thinking that I'll never have progression, but I'm not sitting around waiting for it. When it happens, it happens and I'll deal with it then, not a minute before! My greatest wish would be that researchers could find out why I have done so well (and other exceptional responders) in hopes it could help others. Take good care.
Olma,
Good for you! I've been stage IV for a good long while and it is still a very weird thing to live with, emotionally. I have imagined myself chatting with someone at a party. The subject of bc comes up and I mention that I'm stage IV. My acquaintance looks at me I n horror and says “How long can you live?" “Well",I say, “ Some stats suggest 18 months-3 years." More shock and horror on face of acquaintance, “How long have you had it?" “Almost 8 years." Look of shock and confusion on face of acquaintance. “What can I tell you? I'm not dead yet!" I find myself making little “not dead yet jokes” more often than most people around me appreciate. They don’t want ME to utter the word. For me the mental/emotional part has been tougher than the physical part,
I know that many of us are too unwell to live anything even resembling a normal life. So much is out of our control, but if you're relatively well, don't stop living just because you have cancer. I teach first grade and school is out in two days. I'm going to enjoy being outside too!
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your last post is helping me today Ex ❤️ thank you! Needed to read it. Feeling really tired this week and kinda down in the dumps. Words of encouragement always help!! And I have had those convos in my mind a thousand times too!
You hit the nail on the head about the psycho/emotional aspect being so difficult. It’s a constant mindf*ck. I am never “unaware” of my diagnosis sadly.
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philly,
I cracked up when I read “mindf*ck". I rarely swear but that is the exact word I use for stage IV bc!
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exbrnxgrl - RE: not dead yet. You too? My ex called the house the other day and asked me "How've you been doing lately?" and I said "Well, pretty good, I'm not dead yet!" That about sums it up. It's realistic, funny and gives a bit of a middle finger to the disease all at the same time. I think it's my new motto. I also think of a Junior Soprano quote sometimes (I was a big Sopranos fan when it was on) - they're talking about a surprise birthday party and he says "What are we, children? Anyway, at our age, it's enough of a surprise that we're alive every morning!" Love the crotchety old man attitude, too.
Dark humor is still humor and it helps to keep a sense of humor in this boat we are in.
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Yip.., Not dead yet is one I’ve been using a LOT recently...My bosses are sidelining me, understandably as I’m about to go off sick and then retire...but I got an email today from the National PE Association I helped to set up saying my membership has ended.... a wee email to my buddy’s on the committee questioning that got an immediate response....
“Delighted you are doing so well, the system has been changed, we’ll sort it, nothing to do with your situation and speak soon!”
Faith restored
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good morning all.
starting the week out a bit down. was diagnosed with stage 4 a little more than 3 weeks ago. still absorbing what it means. i really am still in a state of shock, no reason in the world to have thought i would be stage 4. been having back pain for about 6 months, diagnosed with stage 1 breast cancer for 3 rd time about 3 months ago and next thing i know mri of back shows stage iv. pretty scarey stuff. right now i'm still trying to get all my testing done and preparing for RT to help with pain control. i know there is really nothing more to do right now, except to get pain under control and then start some hormone treatment. and even then, i guess it will take a few months to even know if this is the right treatment for me.
i'm wrestling with so many things right now. i've decided to take a few weeks off from work and try to get my head together. truthfully, i'm physically not feeling great, pain in several vertebrae, and not sleeping well cause of the pain and the fear. however, i really dont want to just drop off the face of the earth.... i would like to continue to work (at least part time). (physically i do not have a hard job, but i have a lot of responsibilty and take my job very seriously.
havent shared too much at work yet as to what is going on. clearly i am not functioning in my usual manner and many colleagues know that i am having back problems (well so does half the world, so why would anyone even imagine that this back problem is cancer.)
will be making a bunch of decisions this week. i know RT should be starting by the end of the week. i believe i will be getting my first zometa infusion this week as well. i think once some sort of treatment starts, i think i'll start feeling a little more in control of what is happening....
thank you all for being there and "listening".
ts54
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ts542001, this is the VERY hardest time. Getting your head around the diagnosis is just pure hell. Breathe, the more relaxed you can be... no matter what the prognosis... the easier it will be on you. Work is distracting and exhausting - everyone is different. Do what is right for you...but do something about the things you can control, if you can’t control it, do what you’re advised to do, but question everything. When you’re satisfied,accept you’re doing the best you can. There is no more.
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THANK YOU!!!
i know that this is the hardest time. hard to get head around diagnosis, but also still in lot of pain and not starting any "real" treatment until pain is undercontrol with radiation. once that is done, i can at least feel like whatever treatment i will be getting (most likely some hormone therapy to start), may start me on the path towards healing.
also of course i worry about everyone but myself. time to start putting myself first!!!
i'm pushing hard, i know i can make this.
ts
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Wild west greetings from the Kimberley region of Western Australia its the dry season and winter sooo mornings are the best
First adventure from Broome was to see the Horizontal falls and the extra bonus of copilot seat to the cygnet bay pearl farm
Tidal flow in jet boat was low at 2metres
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Bright55,
Thank you for the wonderful pics. I love Australia! Enjoy every minute of it
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Hi all. Just checking in since I haven't been on in a couple weeks. Boy, has this thread moved lately! Catching up on all the wonderful posts. NBnotes, good to "see" you again and so glad you got to go on your cruise; beautiful pics! I love your "Living List," too instead of bucket list that I will use from now on.
For all those newly diagnosed with MBC, I want to chime in that this month I am celebrating 4 yrs. of living since my MBC dx. It was rough for me the first year, and I've been fortunate, but life has gone on, and the longer it goes, the more "normal" it seems. Although, dark clouds still lurk in my mind now and then, I try to push forward with as much normalcy and positivity as I can. I was stll working full time until my employer decided to eliminate my position in April, sort of forced retirement for now, but it's been great! Today, we're off to a BBQ Challenge event, and then Sunday, Father's Day celebration for my hubby. Baseball games, camping, hiking, and more to look forward to this summer.
And so it goes... hugs to you all. Happy Father's Day to our fellow brothers in MBC!
Edited: Actually, I realize I haven't posted here in over 2 months! Thanks everyone who commiserated with me about my job loss; it's all good now!
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Woo hoo Bliss
2 weeks to go for me.,..
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