So the lady across from me today said she just started Foslodex and Zometa today. I told her I had the same. MBC. Then she proceeded to tell me her Doctor said 5-10 years barring new treatments coming out all the time. She was like I’m 64...5-10 years plus whatever...She was so positive! But seriously I think a lot of us had a very different experience! I think I was told 12 months maybe more...This is stage IV no cure but treatment might help...plus we’ll start u on palliative care for all the pain...😱...you literally thought you’d be on a morphine drip the next week!
Wow! What a difference! Seriously wouldn’t u think and act so much differently if u were told 5-10 from the get go vs. you will be in the minority if u make the magic 5 year mark...😀...so happy these newbies won’t know what it feels like to think they need to “get their things in order.” Just thought I’d pass this positive info along about what doctors really think about the future of this disease. And one of the nurses said they sent a patient to UPMC Pittsburgh for Car T-Cell therapy...😀...
Be blessed and have a happy Memorial Day!
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Rhwright12
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I learned early on that, with all of the new treatments that have become available, the published "averages" are way out of date. So when I was first diagnosed, I took the average and immediately added about a year, since that's what Ibrance adds to whatever AI it's paired with. Then came some other new treatments, e.g. Piqray, add another 6 months; Verzenio after Ibrance, add even more time...etc. etc., etc. And new things coming down the pike every year...
I know folks here have mentioned the fact that some doctors feel like MBC can in some ways be thought of as a treatable "chronic" condition. While I like the sound of that (! ), I'm not 100% bought in yet...
But that is a very encouraging perspective from the woman you met! Thanks for sharing!
My docs have never given me a prognosis, starting with my first stage 2b occurrence in 1994. I was diagnosed with MBC in March 2016. Made it past the average of ibrance 100 w Letrozole and zometa at 3.5 yrs. now on Afinitor 7.5 and exemestane and xgeva. I checked the stats on Afinitor and it looked scary short I decided not to think about it.... denial works for me. Just had by first grandchild on May 7 and am waiting in the wings to hold him! I may live forever!
Statistics are simply numbers and we can all prove them wrong. I have several friends who’ve beaten the odds - 2 with advanced brain cancer. They were given 6 months and it’s been 6 years since they heard those words. Their strength and determination are a constant reminder to me that a positive attitude while dealing with all that MBC throws our way is essential.
Congrats on the grandchild. You are going to love holding him forever. Such a wonderful event in our lives. As to the treatments, we all react differently and so I don't take the predictions to seriously. I think we are all going to live forever.
Cheers, June S.
Hi Heather,
Thanks for sharing this news with us all. We need to hear some positive outcomes with this disease and have hope for better times ahead. I've not been told to "get my affairs in order" and if I had I don't know how I would have responded. Perhaps my oncologist was mindful of my age when she told me about this disease. I was 39 when I was diagnosed, whereas so many of you on here are older than me. I want to reach the same milestones and grow old. When I first met my oncologist I actually asked her how long I had left and she said "many years". Whether she meant it or not, I don't know. Perhaps she was just trying to make me feel better. Who knows? But I have held onto that ever since and hope for many more years of life.
I think so much depends on the individual, and where the metastasis is . I had a harrowing experience yesterday with a PCP who told me more than I wanted to know about my cancer, which is not her specialty. I had such intense new pain in one hip, I went in for an evaluation and possible treatment. This doctor immediately assumed it was related to the metastasis in my spine (which has not been biopsied). When I told her about my mastectomy and how it "looked like" the surgeon had gotten all of the cancer, she got on her soap box about people who didn't follow up after cancer surgery because the surgeon told them that the surgery "got it all." I assured her that I had done all my follow-ups (and the metastasis to a lymph node was discovered when I went in for something else). She then told me that I was probably on "palliative care," and I should consider "quality of life" issues! I told her that was up to my oncologist, who is probably waiting for test results after my chemo is done, and I could always hope for remission (which I know is not the same as a cure).
Just to be polite, I thanked the PCP for the "wake-up call," and came home. Some people would have been devastated, and it is possible that I would have laid awake, worrying about it.
Now I get the X-ray results, and there is "mild arthritis" in my hips. It is possible that she is right, but she was not the person to tell me so!
Once my follow-up testing is done, I'll ask whether the "5 years" he gave me was for recovery or palliative care.
While I was going thru initial staging, my onc seemed to want to prepare me for the different possible results and give me time to think about things. She told me that if the cancer had metastasized, it would be treatable, not curable. I asked treatable for how long, and she said quite awhile awhile. I kept pushing and said quite awhile like five or ten years, and she said, well not ten. So of course when we learned that I already had extensive bone mets, my goal became to live more than ten years! lol I hit that mark just over six years ago. I have been very fortunate to have cancer cells that have responded very well to hormonal treatment, or should I say anti hormonal...... Early in my treatment, an on line article was recommended to me . The Mean is Not the Message is the name of it. It was written by a fellow who was a statistician or a scientist of some sort who had a very good understanding of stats. He pointed out quite a few things about cancer survival stats. They are always based on the past and ignore latest treatment options. Also, they include people who are very very sick at the time of diagnosis and those with very very aggressive fast moving cancers. Also those who for whatever reason cannot follow treatment protocols. All those individuals bring the numbers down. He suggested that hte more helpful numbers for those of us living with an advanced cancer, like MBC, is the range of survival times, especially the high end! I suspect that alot of oncs don't really understand statistics! I have always really appreciated the way my onc approached this. She gave me realistic info but not in a scary way and left it really open, which of course it is. Unless one of us is really sick with rip roaring cancer, we aren't dying from cancer anytime soon! The phrase "get your affairs in order" really irks me! We adults should all have our affairs in order, serious health issue or not! But so many avoid this as though thinking it all through is going to make it happen. And our culture tends to avoid talking about end of life issues, but talking about it takes away alot of the fear.....I'll get off my soapbox now!
I was told from the beginning "up to ten years". Then it was softened with who knows, breast cancer may one day be a chronic disease with all the new treatments coming out. I guess I will just have to wait and see. Best wishes to all of us. Blessings, Hannah
My onc will Not give a time but saying when one therapy doesn’t work we will try another and we have many options. She also told me make no mistake the cancer will come back. Yet I look at myself at 5 and hopefully ten I’m 21/2 years . When I get there new treatments may allow for more or Possibly a cure!
Thanks for all the feed back on this topic! I’m really excited to hear that people aren’t getting bogged down with all kinds of depressing stats at the front end of things...And yes...5-10 gives them plenty of time to come up with new drugs and maybe someday a cure 🤷♀️❤️
I was told 1 1/2-5 years almost 6 years ago. Just live a day at a time and enjoy the moment! My fourth grandchild was born a month before I was diagnosed. I didn’t know if I’d live long enough to meet another one. I have since had 10 more. 4 I. The last 3 months. I feel so blessed and thankful for treatments and being given another precious moment. Enjoy your weekend.
It is so good to hear these positive thoughts and "stats". My Dr won't give any predictions as nothing shows on my scans and Ca27-29 is WNL (within normal limits). All he would say is "it won't be 6 months". It's been 5 mo since diagnosis. I have a scan next mo. I have no symptoms except a little fatigue. Tough to just "live your life" in these days of self-isolation, but I'm trying! Thanks for the encouragement.
I didn’t ask my oncologist but he volunteered that with the new treatments I have 10-20 years. Since I was 71 when diagnosed, that would take me to 91 which is more than long enough! I’m not counting on that, but I am not limiting myself either. I’m just living just like I would have lived without my diagnosis, except with a bi more thought into what is really important. Last night my 7 year old granddaughter told me that she missed our routine of once a week pickup after school. We go have a snack some place, go to the library, teas some books, take a walk around the block, all depending on weather. We definitely fit some cuddling time in there! I told her that I definitely would be continuing as soon as we are able and later thought that I wanted to tell her that I would pick her up every Wednesday until she graduated from high school! Not sure she would go for that and I’m not sure I will make it that long, but I’m sure going to try! Hugs, Elaine
New treatment 1 week and 1/2 and my tumor markers are no change but my blood for liver and kidney are showing high activity Wbc and rbc are low. Everything seems to be off kilter I have to wait til Tuesday for explanation meanwhile I’m trying to keep my mind on other things
fortunate for the 'straight forward' medical/wellness team caring for me, as well as my attitude. upon asking, with mets dx, was informed that 5 years is the typical time frame; it was individual, pending this body, treatment, and research advancing. approaching the five year milestone, in July, and healthy!
I was told to think of it as a chronic disease which can be controlled and not given any timelines. My oncologist said she has no idea how long I will last, there are many factors involved. She also added there are many success stories. There are many people on the SHARE hotline who have had it for years and I met other younger women at the NYC conference last fall who have had it for 8 years or more. I believe I will be here for several more years. I feel really good on Ibrance and Letrozole. It has been 2 and 1/2 years already.
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