Posted on: Jul 11, 2008 08:25AM
Hi girls, I don't mean to sound so doom and gloom, but I made the mistake of asking my onc what my chances of recurrences were, and this is what he told me. "You have an 80% chance of recurrence for the next 10 years".....wow.....that was depressing!!! Did any of you get a simular prognosis? I guess I felt my chances were better because of all the tx I went through. I know for certain that no one can predict the future, but this news is hard to swallow somedays!!!Log in to post a reply
Posts 31 - 60 (64 total)
Jul 13, 2008 09:37PM getwell wrote:
My onc gave me the same 80% scary statistic. Unfortunately, I was on Femara for a year and had to stop due to terrible SE's. Six weeks ago I started Aromasin and I stopped that today bc of the same horrible side effects. I am speaking to my onc tomorrow. I'm not sure what else can be done to improve my chances without destroying my life in the process.
Jul 13, 2008 11:14PM revkat wrote:
I'm not Otter, but I did google around a bit trying to get some solid numbers on recurrence risks. I didn't find any nice handy charts, but the figure of "around a third of early bc will have a recurrence" was tossed around a bit. And that was with treatment (surgery, chemo if indictated, tamox or an AI). So then if you figure it will be higher with stage 3, and maybe adding in the risk of a new primary. . . the 80% may not be that high.
Still, for each individual it is 50-50. Either it does or doesn't. And there are some lifestyle things we can do to reduce the chances further. And if caught early a local recurrence can be very treatable. And I think I'll stop here, because I worry about recurrence al the time myself. . .
Jul 14, 2008 08:03AM caaclark wrote:
I have been following this thread and am surprised at the doom and gloom from docs. Yes, we are high risk but lots of us will go on to die of something non-breast cancer related. Don't get me wrong-I am also scared of recurrence but thank goodness there are doctors out there like mine who are at least cautiously optimistic. They really have no way to tell for sure who will get a recurrence. My husband's aunt was diagnosed with stage IV 7 or 8 years ago. Has not even done chemo-just hormonals and rads and seems fine. My friend had stage II, it recurred 4 years later as stage I. No + nodes. Recurred again 2 years later and she died from it rather quickly. If we were to bet on who would survive long term we would have bet that my friend would have been fine. I am sure the docs would have thought the same.
All that being said, early on I pushed for a stat. My docs refused to give me one. At first that annoyed me but now I am grateful for that. They just kept telling me that the treatments that I was having were very strong and they were pleased with how I reacted to them. Yes, I did my own research so I know it is probably about a 30% chance of recurrence but that means that I have a 70% chance of NOT having a recurrence. I figure there are lots of people in the world who have worse types of illnesses who would love to be me and at least have a chance.
Anyway, I posted this link recently on another thread. It is a research study of people who have more than 10 postitive lymph nodes and how long term survival is so much better than it was when the study was orginally done years before. According to the study it looks like about a 72% chance of NOT having a recurrence.
Jul 14, 2008 12:48PM Naomi wrote:
Just wanted to thank everyone for their continued input. I have learned more here and felt more compassion by the women on this forum, much more than any doctor or doctor's office could afford to give me. Again, I honestly didn't mean to freak anyone out. I was thinking that the %'s that I got were a little harsh. Love to you all!!!
Jul 14, 2008 02:49PM Lindaip wrote:
I was told by my oncologist in 2002 that with surgery only, I would have a 70% chance of recurrence. With each therapy, (4 A/C, 4 Taxotere and 5 years of Arimidex) my chances of reccurrence would go down. I calculated it out to about 17.5%. That was six years ago and I now have NED. I am also on a clinical trial to see if 5 years of Femara (I am either getting Femara or a placebo) brings the recurrence rate down even more. Also remember that the information on recurrence rates is 5 years old and women are doing muuch better now than those rates show.
Jul 15, 2008 10:33PM otter wrote:
Sorry, gang, I've been out of town for the past week and haven't been spending much time on the BCO boards. I just now saw Nico's appeal for help and reassurance on the issue of BC recurrence risk.
I wish I could toss a life ring out there so everybody in this discussion could be pulled to safety. One problem I have is that I am not very familiar with the statistics on recurrence and overall survival with Stage III BC. I've sort of focused on the simpler stuff in the past 6 months.
Here's what I think, which is pretty much the same as what others have been saying here. Once you get beyond Stage I or II and whether or not the tumor cells have spread from the primary site to the axillary nodes (or other nodes), the risk of recurrence depends a great deal on the grade and size of the tumor and the amount of lymph node involvement. It also depends somewhat on your age, and of course it depends on the receptor status of the tumor cells (ER etc.), etc. Those variables provide a "first-cut" estimate of recurrence risk after a successful surgery. That recurrence risk is further influenced by whatever additional treatments you get.
Since I don't have anybody's actual data, I entered some hypothetical data in the calculator on Adjuvant!Online (www.adjuvantonline.com). I used a worst-case scenario:
Co-morbidity: Average for age
ER Status of tumor: Negative
Tumor Grade: 3
Tumor Size: > 5.0 cm
Positive Nodes: > 9
With just surgery (no chemo), the risk of recurrence of this tumor over the next 10 years would be 97%. Since the cells were ER-, tamoxifen (or an AI) is not relevant, at least according to today's standard of care. Improvement in recurrence-free survival will depend a great deal on the type of chemo used.
With CMF, the recurrence risk of the hypothetical BC I've outlined above would drop to around 88%. CMF is not likely to be considered with this advanced stage, though, so lets try something more realistic. ACx4+Tx4 would decrease the absolute risk of recurrence to 81%. That's still not much of an improvement. A "3rd-generation" chemo regimen would reduce the risk quite a bit more--it would take the risk down to around 74%. Third-generation chemo regimens include things like TACx6 or dose-dense AC+T.
Note that the Adjuvant!Online calculator is out-of-date, because it does not consider HER2 status as a single variable; and it does not take into account some of the newer chemo agents, like Herceptin, Avastin, Carboplatin, Xeloda, etc.
I tried entering a variety of different ages, leaving the other variables the same; but changing the age didn't make much difference with the hypothetical advanced BC. Some of the variables that do change the recurrence risk a lot with the Adjuvant!Online calculator are:
1) Grade of the tumor--if the hypothetical grade is changed from "3" to "1" in the scenario I've outlined above, the initial recurrence risk after surgery alone drops from 97% down to 79%. After treatment with a 3rd-generation chemo regimen, the recurrence risk goes down to 47.5%.
2) Tumor size--the difference in recurrence risk between a tumor that is > 5 cm vs. 3.1 to 5.0 cm is quite large. If the size of the Grade 3 tumor in the scenario I've set up is changed from "> 5.0" to "3.1 to 5.0", the recurrence risk after surgery alone drops from 97% down to 90%. That's still assuming there are > 9 positive nodes. After a 3rd-generation chemo, the risk of recurrence with the smaller Grade 3 tumor (3.1 to 5.0 cm) drops to 61%.
3) Number of positive nodes--the node involvement has a big influence on the recurrence risk, according to the Adjuvant!Online calculator. If the number of positive nodes with the hypothetical Grade 3 tumor is changed from "> 9" to "4 to 9", the initial recurrence risk after surgery alone decreases from 97% down to 84%. If a 3rd-generation chemo is used, the risk drops to around 53%.
4) ER status--Ironically, the risk of recurrence with a Grade 3 ER+ tumor with the other characteristics I've given in the hypothetical example above is greater than the risk of recurrence with the same tumor if it is ER-. Tamoxifen will reduce the recurrence risk of the ER+ tumor from 98% to 94%, and a 3rd-generation chemo regimen prior to starting tamoxifen will drop that risk to 64%. An aromatase inhibitor is better than tamoxifen in this situation.
I know this information won't reassure those of you who had large primary tumors or a high level of lymph node involvement. At least you might see some of the things that can influence a calculation of the 10-year risk of recurrence. Unfortunately, the Adjuvant!Online calculator lags behind information in the medical journals, clinical trial reports, and meeting abstracts. I think it's safe to say that, for most women with BC, their prognosis is better than what the Adjuvant!Online calculator estimates it will be.
One thing to note about my hypothetical situation: I didn't use an ER+ tumor except in the very last example. Things are still in flux with risk calculations for ER+ tumors. Oncotype testing has cleared that up a bit for women with early-stage BC; but that hasn't helped women with larger primary tumors or extensive lymph node involvement.
I can't subscribe to the "fifty-fifty" approach that says I'll either get a recurrence or I won't. I know my risk falls within a range that depends on a whole bunch of variables. However, if it's easier for you to think about this as "I'll either get it or I won't", then do whatever helps you get through those sleepless nights and keeps your mind out of that dark place.
Jul 15, 2008 11:56PM revkat wrote:
Otter you are such a helper. I don't think you can ever leave these boards! I go around trying to answer things (always noting that I'm not Otter) but I just don't have your touch.
Jul 16, 2008 01:19AM Nico1012 wrote:
Otter, again I am speechless. revcat is right, you can never leave these boards!
Good grief, you were gone for a few days and it was a panic.
We are so fortunate to have you here.
Jul 16, 2008 10:40AM dianej1962 wrote:
Hi all. I am new to this although I am 1 1/2 years out. You all have spoken about chemo and and all the Arimidex kinds of medicine. What about radiation? Does that play a large roll in reacurance? I did not want to have radiation and was pushed by family and friends. NOW I am having the worst time with reconstruction. I really want to know if it was worth it. Diane
Jul 16, 2008 12:45PM mimi1030 wrote:
My mom was told in 2004 that at Stage 1 she had less than a 5% chance of it reoccuring....well 3 years later in Sept 07. She made it to the 5% club. Stats are crap and I don't generally listen to them either.
Jul 16, 2008 09:25PM otter wrote:
Sherri, wildflowers, Maire, and everyone else on this forum--thanks for putting a better focus on what I was trying to say. I'm afraid my post was a violation of the etiquette of this section of the BCO boards.
Wildflowers, I apologize if I offended you or anyone else here by trying to explain how some onco's use Adjuvant!Online to estimate BC recurrence. I would not have dropped in here if I hadn't been asked to help with an explanation of recurrence rates. When I said I realized my explanation wouldn't comfort anyone whose tumor was large or who had extensive LN involvement, I knew I was referring to Stage III BC. I cannot imagine what it must feel like to be told your BC is Stage III, especially if you are also told the recurrence risk is as high as some of those quoted in this thread.
Jul 16, 2008 09:43PM Nico1012 wrote:
I too am stage lll. Everyday I bump up a thread called "Success Stories"
and everyday I read it beginning to end. It gives me such hope and inspiration.
My fervent wish is that it will do the same for all of you.
Jul 17, 2008 07:01AM paige-allyson wrote:
I haven't been by for a whole but really appreciated finding this conversation. Last year I was so consumed by the anxiety after being diagnosed with LABC and coming to understand what that means. The first onc I saw (and did not stick with!) was well meaning but not very in tune emotionally. She trotted right in to the consultation room with the bar graph she'd generated on adjuvantoline, indicating the likelihood of my being alive in 10 years given various treatment scenarios. She'd also made an error which I didn't realize at the time, so that she actually quoted me worse stats than I actually have (as if they aren't bad enough). The graph and that meeting are permenantly burned into my memory. Woe would be me if it weren't for Lexapro...LOL
I still worry about recurrence but it doesn't control my life. Someone on here in a recent post said something along the lines of "live large." I have been living larger since my diagnosis, taking more healthy risks, doing things I'd previously put off. I heard an interview on NPR during my back and forth to radiation tx last year- I forget the context but the conversation was about the general topic of "living large." The main speaker was promoting the idea of living life as though it were your last year versus the ever popular last day approach which could tend to result in bad choices driven by the desire for instant gratification. I think of this now and then and try to think more this way while at the same time doing my best to strategize for longevity.
Thank you Tender for the reminder to lose the thigh and belly fat, and that exercise is one of the best things we ER/PR+ high risk women can do for ourselves. I have often thought that THAT should be incorporated into adjuvant calculations. If it is really true that exercise/weight loss can lead to a 50% reduction in recurrence then my triathlon training and dietary changes are buying me more than either chemo, hormonals, and radiation.
I am sad for the losses and progressions we've had here of late. Kari avatar picture pops into my mind on a regular basis. and it's hard to take in that she's gone. I think about Janis and her boys and Deb and her daughters...I hate breast cancer but I live with it. I think sometimes of how the Dali Lama refers to the Chinese "My friend the enemy." This somehow works as a way for me to live life under the "new contract" that came with the LABC diagnosis.
I hold on to hope both from women who "make it", like my sister-in-law we just visited. She is now NED 11 years after being diagnosed with LABC with 17 positive lymph nodes. I also find hope in the posts of women who have progressed and reading posts or journals by women who have ultimately died from breast cancer. I can't quite put this into words but I think many of you understand. I need a hope that goes deeper than just beating recurrence and I find it in the writings of women who live or have lived with breast cancer that has progressed. It seems we don't talk about this much but I wonder if others share this experience? And now for a run before the day gets too hot. Love and blessings to you all.
Jul 17, 2008 09:25AM water wrote:Hi,
Jul 17, 2008 09:59PM JWallace wrote:
I have posted topics in another forum but saw this one and decided to see if anyone could help me breathe this thing out. My mom has stage 3A breast cancer. She had chemo first to try and shrink the tumor and then after surgery they said it didn't seem to shrink it much at all. Come to find out her can has no hormone receptors and is HER2+ (??). So she had surgery this past april 08 and now in July the cancer is back. She is having the tests tomorrow to see if it has spread. Can anyone provide anymore insight for me please??
Jul 21, 2008 12:28PM , edited Jul 21, 2008 12:30PM by syren3340
Try to not let the stats scare you. Don't put that out into the Universe for yourself. Imagine yourself surviving & what that would be like for you, how that would feel.
We increase our chance of survival by changing our lifestyle - taking care of ourselves: upgrading our diet, consistent healthy movement, self care, stress mgmt, "me time" every week.
I figure if I can control what I put into my body & what I subject myself to, I'm doing all I can to reduce recurrence risk.
This is exactly what I help my clients do today & I love the work - it's what I was meant to do here.
Who's w/ me? :)
Aug 4, 2008 10:34AM carolupa wrote:
Hi, this sounds like good advice, but my problem is that I was always slim and exercised a lot before I got bc, and was skinny thru the treatment too, but now that I am on Arimidex I am suddenly gaining weight, esp fat around the stomach. Am dieting, exercising etc but it doesn't seem to help. I kind of assumed it was the medicine, but maybe just advancing age and drug induced menopause? Any tips on losing this fat apart from running six hours a day ?
Also I'm not as good at resisting junk food as I used to be. That seems weird since I know how bad it is, but before bc I had more self discipline. Sometimes I feel like I owe myself that chocolate since who knows, I could be dead soon anyway? lol
Aug 6, 2008 03:11PM Adam33 wrote:
My wife had a double masectamy in late Feb of 08. She had a tumor 5centimeters large with a cluster around all cancer and had 30 positive lymphnodes. She had something called pagotoid on the other nipple. The cells were poorly differntiated and her pet scan post surgery was clean. She was ER positive. Not a day goes by that I dont worry about what is next. She just finished cheomo and is doing radiation. Anyone know survival rates for Stage IIIC?
Aug 6, 2008 03:23PM Annaanne wrote:
Sorry to hear this and regards to your wife. If you read these threads (especially this stage 3) you'll find stories similiar to your wife's and get an idea of how other women are doing. Many are doing great. It's hard enough to have a bc diagnosis, let alone the shock of Locally Advanced disease -- but that's what all of us on this thread have and do face. That's great that her scan was clean and that she's finished chemo.
I'm sure other women will respond and you'll start to get some good info. When your wife starts to feel more normal, she might want to read and post here, too. This is a very supportive and informed site.
dx 5/05 stage 3a.
Aug 31, 2008 10:12AM carol1949 wrote:
Naomi and others on here!
First of all... my oncologist told me to consider that any data we see is at least 5 years old by the time we see it! Most studies are 5 years studies.
Second, remember traditional medicine is not the only way to beat cancer. In fact, I personally don't think traditional medicine alone can beat cancer. It is body, mind and spirit.
I highly recommend for you to do much research on complimentary treatments which can be used along with traditional. It can only help. Dr. Patrick Quillin has authored a book Beating Cancer With Nutrition. He is a former V P of Cancer Treatment Centers of America. He gives much information on supplements as well as diet along with inspiration about patients who are NED after being given poor prognosis by some physicians.
I have a friend who is 10 years cancer free who went holistic after losing a sister to b/c who had used traditional therapy. She did have 2 surgeries, (the 2nd at CCT of A after a bad experience in her local town. She then went holistic with the help of nutritionists, etc. It CAN be done!!
Knowledge is power!! Don't keep your head in the sand and use only traditional meds... Trust the the right information will come to you. If it speaks to your heart... try it!!
God Bless us All and Godspeed!
Aug 31, 2008 07:26PM , edited Aug 31, 2008 07:28PM by Mopsey444
When I was diagnosed back in 1997 they told me I had a 50% chance of living 10 years and here I am. One other thing that I find amazing is that 11 yrs ago when I was diagnosed I was a Stage II and sometime since then they changed the staging and now I am a Stage III, I think the way they stage people changed in 2002. I had four lymph nodes but my tumor was 1.8 cm back in 1997 I was a IIA and now I am a IIIA, it is all just numbers, there are so many people who never should have survived and have and so many that had a great prognosis and pass away. Both of my doctors are dead from cancer, the surgeon from ovarian cancer and my family practice from lymphoma and neither had cancer when I was diagnosed.
Sep 24, 2008 12:45AM FairyDuster wrote:
I have stage III too and know stats can seem scary, but just look at this thread to see all the conflicting numbers. People are human and no one not even the best Doc in the world has a crystal ball into you. Focus on the 10 and 20 year survival stories. My own aunt was a 20 yearstage III survior abd breast cancer was not even what did her in, she died of diabetes related issues! So think positive and dont dwell on numbers faith is your best friend now. I'm in the middle of my ACT actually on the T for 12 weeks only 8 to go. Im scared too but try my hardest not to dwell or think negative.
Sep 24, 2008 03:52PM FairyDuster wrote:
Your attitude is the same as mine and that line of thinking is probably the reason you are a true success story. If you could tell your story in more disscussion and chat rooms (everyone you can) I know people hear absolutely NEED to hear its possible to overcome the odds. Too many people feel the odds are impossible to beat and it is consuming their life.
I hope to be just like you in my journey!
Thanks for sharing.