BC Recurrence Rate%, is it true?

hlya
hlya Member Posts: 484

Scared by reading this article on line:

http://www.breastcancerpartner.com/preventing_recu...

Unfortunately, the truth is that anyone who has had breast cancer is at risk for recurrence. Several factors influence the recurrence rate. Usually, if a woman’s breast cancer was detected at an early stage and localized to the breast, there is a 20 percent to 30 percent risk for recurrence. If it is detected after the breast cancer has spread to the lymph nodes and beyond, the recurrence rate then rises to between 30 percent and 60 percent.

Is it really so high??

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Comments

  • Renee51
    Renee51 Member Posts: 96
    edited April 2014

    I don't know but I wonder if a mastectomy would decrease that risk?

  • DiveCat
    DiveCat Member Posts: 968
    edited April 2014

    No, a mastectomy does not reduce your risk of distant recurrence when dealing with an invasive cancer (though it may decrease risk of a new primary in the breast, though usually that is not the biggest risk for most women after there has already been an invasive cancer diagnosis). It is like closing the barn door after the horse has escaped, so to speak. Research has shown that recurrence rates after mastectomy versus lumpectomy + rads are very similar. Both are primary therapies meant to remove the tumour and can do that effectively. That is not to say a mastectomy is not appropriate in many situations, just that it is not a treatment that reduces risk of distant recurrence.

    Neoadjuvant/adjuvant therapy (such as chemo or hormonal therapy) on the other hand are used to increase chances of long time survival/decrease risk of distant recurrence: http://www.cancer.gov/cancertopics/factsheet/Therapy/adjuvant-breast

  • Holeinone
    Holeinone Member Posts: 2,478
    edited April 2014

    I was told, not by my MO, but an oncology nurse practioner that my odds of 5 year survival, without being dx with mets was 65%. She was a out of town nurse that ran the survivorship appt. I enjoyed the fact that she had 1- 1 1/2 hour to talk,  visit, discuss my tx & recovery. What SE the chemo might cause, down the road.

    She was open & very honest, my MO does it talk much. Having cancer in the nodes changes your odds. If it has not gone to the nodes, I think those stats are wrong, too high. 

  • hlya
    hlya Member Posts: 484
    edited April 2014

    Honestly,  I am feeling dizzy about reading those "articles".

    I read somewhere else saying that most of the recurrence happened in 1st 3-5 years after dx.  but this one is saying something totally different:

    http://www.cancer.org/cancer/news/news/study-quant...

    For the overall group, recurrence rates were 11% at 5 years and 20% at 10 years after completion of adjuvant therapy.

    So, should I stop googling and reading those articles? totally get lost. 

  • hlya
    hlya Member Posts: 484
    edited April 2014

    Renee51:

    There is a thread in another forum:  https://community.breastcancer.org/forum/88/topic...

    I didn't read all the posts,  but from what I have read, there are still lots of people in that thread got local recurrence even having mastectomy.

    We have to listen to doctors, read articles and know our body,  we have to do all of these not only relying on one of them.  We know our body best,  we need to consider doctor's opinion, stats and our own individual situation. 

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited April 2014

    I think more women would do well to read and ponder these recurrence statistics before choosing a mastectomy as treatment for early stage breast cancer. 

    Overtreating breast cancer is becoming a huge problem. It doesn't look like surgeons are saying no to patients who insist on having their breasts removed. Later, when the cancer's presence is detected again, these women are shocked. 

    Just look at the signatures of women in the Stage IV forums to get an idea of how many times women with early stage breast cancer sacrificed their breasts yet still had a recurrence. 

    Another statistic not getting enough airplay is that chemo usually fails. It may prolong life, but sometimes only for months or weeks. More often than not, in breast cancer patients, the cancer returns after chemo. When I was first diagnosed, chemo was explained to me in glowing terms, like an insurance policy that would protect me for life. I had no idea that some people had chemo more than once, or were in a constant chemo cycle, or had their cancer return after chemo. I was so naive, even after my doctor consults. My doctors were not truthful with me. I didn't know the right questions to ask. I do now. 

  • Torridon
    Torridon Member Posts: 89
    edited April 2014

    ignore all stats. I had a good prognosis with one node very hormone positive her neg grade 2 in 2012. Just diagnosed the hell of stage 4 aged 39 and mum to a 4 year old. I was told only 3 months ago I was low risk. No one really knows what will happen. Even the docs and researchers x 

  • wallycat
    wallycat Member Posts: 3,227
    edited April 2014

    One oncologist I had said to think of it this way...

    EVERYONE has a risk of getting cancer...and the older we get, the higher the risk becomes simply because an aging body is poorer at "fixing" the rogue cells.  People who already had cancer are simply at higher risk...but NO ONE is risk free.

    I agree...I don't like the fact that for lobular especially, our recurrence risks get less favorable as we get further out...

    Some days I think about it a lot; other days it never enters my mind.  I remember when I was first diagnosed, it consumed me.  I'm much better about it.  If we live as cancer patients 24/7, the disease has already won.  I try to have a good day every time I wake up and try (sometimes that is very hard) to not focus on cancer recurrence till or if it happens.  

    Michael J Foxx (the parkinson's patient/actor) said.."if I dwell on my disease and worry about things that may happen, it is as if I got the problem twice---once, the whole time I worried and a second time when it came true; let me deal with it only once."

  • DiveCat
    DiveCat Member Posts: 968
    edited April 2014

    wallycat...

    You are right everyone has a risk of getting cancer. In the US 1 in 2 men will face a cancer diagnosis in their lifetime. For women, it is 1 in 3. So the odds are definitely rather high for anyone (of course, these can range from a rather treatable skin cancer, to an aggressive and brain cancer, to an infant with a deadly retinoblastoma (there is a family in my city with infant triplet boys...all three of them have been recently diagnosed with retinoblastoma, very sad), to a 97 year old with a new cancer diagnosis who dies of old age before the cancer gets him).

    My mother was diagnosed in December of 2005 (ILC, 6+ cm, 19+ nodes) and has not had a recurrence. Of course, she knows the risk as she saw her mother and grandmother die with bc mets, her mother after a recurrence, but she does very much (at least she says!) live like you now, in trying not to focus on recurrence until or if it happens. She definitely has many, many good days, and even has reached the point she has a hard time remembering the specifics of her own diagnosis (information I needed to know for my own genetic counseling and such) as she has "worked to forget". I hope she is able to forget until she is 97 and old age gets her before a recurrence ever does. We are all aware of the reality, but we need to keep the hope.

  • hlya
    hlya Member Posts: 484
    edited April 2014

    Wallycat:  Very well said.  Thanks for sharing these with us!

    TarheelMichelle:  What you mentioned about overtreatment is also an interesting topic.  Did you do chemo the 1st time when you dx? 

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited April 2014

    hlya, my oncologist recommend chemo in 2008 when I was Stage I, and was very pouty when I resisted. That's what I was referring to when I said chemo was presented to me as the perfect treatment, the "cure."

    I still have the sheet of paper where she wrote the (estimated) chances of recurrence with lumpectomy+radiation (20%) and chemo+lumpectomy+radiation (17%). Knowing how chemo's systemic poison can cause lifelong problems for some people, I declined chemo. 

    My current oncologist at Sloan-Kettering tells me that chemo isn't right for my breast cancer, because my cancer is slow-growing. Because of this and other characteristics, chemo would not be a useful treatment. My local oncologists still think I should do chemo. It's just a difference of opinion. Sloan-Kettering sees a wider range of patients from all over the world. And from what I'm seeing there, fewer patients are going thru chemo. (Or maybe I am spending time in waiting rooms with a larger proportion of women with similar breast cancer tumors that wouldn't benefit from chemo. 😜)

    I know chemo saves lives. Still, I wish that no one had to go through such rough treatment, chemo or mastectomy. There are plenty of Stage I gals who declined chemo and are doing just fine. I include myself in that group, even though I'm now Stage IV. 

  • Holeinone
    Holeinone Member Posts: 2,478
    edited April 2014

    Tarhee, I am shocked every time I look at the stage 4 forum with ladies with stage 0 & 1 that go on and  are dx with mets.

    Sad to see  how many young women are being dx. Getting chemo or not seems to be a factor of positive nodes. My 6 positive nodes made it a no- brainer.

    I believe it's a crap shoot, the Drs. Are trying to do the right thing, but its a complicated disease.

  • hlya
    hlya Member Posts: 484
    edited April 2014

    TarheelMichelle :  So sorry about your current stage.

    But you really impressed me.  I saw some women regretted for not taking chemo/or other treatments when BC came back, did you ever think about "why"?  in your profile looks like you did not do anti-hormone treatment either? 

    My employer's son who was first time dx as a late stage cancer,  and he was treated by the 2nd strongest chemo in the world (the most strongest is marrow targeted - I don't really understand),   then  doctor said they found another cancer which is the major one but not the one dx at 1st time.   so he might be treated by wrong medication. 

    Then he did lots of surgeries, to remove those tumors in couple of places in his body.  All of these had been done in one year.   (how could a person's body   bear so many traumas in such a short time?)

    Lately they found a big lump in his colon, doctor said it's a new primary colon cancer, not the one spread from another 2 cancer.  if it's true, there might be a possibility that his immune system was badly damaged, and with family gene (he has family history) it became a lot easier for him to develop cancer.  don't know......

  • wallycat
    wallycat Member Posts: 3,227
    edited April 2014

    I am hopeful that doctors are more judicious, never mind aware, of the treatment options related to types of cancers.

    Sadly, some docs don't stay current...

    and as we have all said, sometimes, it is just pure luck (good and/or bad)--bad luck to get the cancer and good or bad luck on how it develops or doesn't.  It's a crapshoot.

    Treatments that "should" work do not always work and people go into remission through no action of their own in some cases.

    I opted out of chemo because I had 2 docs tell me 4% or less benefit is not "worth it" for the side effects that come with it.  I have no idea if I will learn to regret the decision or not.  The fact is that much of this is hindsight.  We have to make the best decision with the information we currently have and then let it go or we can worry ourselves ad nauseam and reduce the quality of life we have while we have it.

    I'm not saying I don't have days I am frightened to my core, but I try not to have it rule my days.

  • Lojo
    Lojo Member Posts: 303
    edited April 2014

    wallycat, I completely agree. Ten years ago I'm certain I would have gotten chemo and possibly not rads, now it's the other way around because of the oncotype test, and more research on ilc specifically with respect to rads,for which I am thankful. I have no regrets, and am hopeful that once my skin heals I can put all this aside and just pretend my tamoxifen is a vitamin. :)

  • Momine
    Momine Member Posts: 7,859
    edited April 2014

    Hlya, the recurrence rate is fairly high, although I have actually found it difficult to find stats on lifetime recurrence risk (instead of just 5-year or 10-year ones). However, with changes in treatment, stats like that would be fairly unreliable anyway.

    The article you saw is from some holistic treatment place. As is unfortunately often the case with places/practioners like that, they are not all that careful about their facts. There are zero footnotes and it doesn't even say what they are basing those numbers on. So, I would not take that particular article too seriously.

  • edwards750
    edwards750 Member Posts: 3,761
    edited April 2014

    I am one if those patients who was afraid to NOT do Rads or take Tamoxifen. The Oncotype test saved me from chemo. My score was 11. Admittedly, if chemo had been the treatment of choice for me I'm not sure I would have done it. RADS have risks too but chemo scares me. I would hate to look back and say what if so I probably would have done the chemo despite not wanting to. Diane 

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited April 2014

    Interesting observations and experiences.  

    I really appreciate everyone sharing. 

    hlya, no regrets on refusing chemo, tamoxifen (initially, as preventive) or ovary removal. No regrets then and especially not now, as doctors tell me chemo just isn't best treatment for my type of tumor. No regrets now because I see women who were diagnosed the same time as me, or a little later, who had chemo, then a recurrence, (and now going through more chemo). No regrets when I see young women with severe heart problems because of chemo damage. They weren't told about these risks. 

    Some women don't have a choice with chemo. But I did. I think chemo would have weakened my body so much that a recurrence may have been deadly because I'd be too weak for more treatment. After diagnosis, I was thinking of my life long-term when considering treatment options, and the health consequences of chemo worried me. Now, I see women with hearts and nerves damaged by chemo (many say they weren't adequately warned.)

    Another point, I truly don't feel that my cancer was a recurrence. It doesn't fit the pattern of "travelling" via blood or lymphatic system to other parts of the body. I believe the cancer in my left breast showed up first but it was already elsewhere in my body at that time, just not visible on scans. 

    The only evidence I have to support my theory is that when my cancer returned, it was basically everywhere in my torso except my left lung and left rib bones, the area closest to radiation site, which could have received some residual radiation benefit. Otherwise, if my recurrence was cancer that travelled from my left breast to elsewhere in my body, (as was explained to me) then why didn't it show up elsewhere in my left breast, or even my right breast? (My recurrence of breast cancer was not in either breast. Which was the only place I was vigilant about looking for it. ... Another mystery. )

    Glad to have Tamox now. It's working. I don't think I could have dealt with these horrible side effects unless the benefit is saving my life. Wouldn't do it over again any other way. 

  • Momine
    Momine Member Posts: 7,859
    edited April 2014

    I did find some articles about "conditional survival" (although I forgot to bookmark them). Conditional survival looks at your odds if you have already survived a number of years. Interestingly, the few graphs I saw showed that for various cancers the survival odds go up steadily and a lot the longer you live, but breast cancer is not one of them :( So that basically means, as far as I can understand, that we continue to have a steady recurrence risk no matter how long we remain disease free. Here is one abstract that addresses this: http://onlinelibrary.wiley.com/doi/10.1002/1097-0142(19950715)76:2%3C237::AID-CNCR2820760213%3E3.0.CO;2-J/abstract

  • hlya
    hlya Member Posts: 484
    edited April 2014

    Momine:  Thanks for sharing the interesting article.  But they didn't explain why the survival rate was slightly decreased with years? 

    Some part of the article is hard for me to understand:

    " To consider survival after having survived a period of time, survival rates can be calculated conditional on the fact that the co-hort has already survived for a specified period. Cal-culation of survival to 10 years after diagnosis, for ex-ample, can be conditional on the fact that patients have already survived 5 years, that is, the probability that a patient group reaches 10 years after diagnosis given that the group has already survived 5 years.

    Such a conditional rate may provide more informa-tion than a 10-year survival rate estimated at the time of initial diagnosis" 

    Trying to understand the purpose of calculating this way. 

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2014

    Conditional survival, according to this way of calculating, was important to Stage IV survival information.  It appears, if one has survived 5 years at Stage IV, then it was more likely that they would survive to 10 years. So, if one reached the 5 year benchmark with Stage IV, it was likely that they would be part of that group of 20% of Stage IV survivors at 10 years.

    Furthermore, when you look to survival statistics, one needs to factor in the probability of death from breast cancer versus other causes  AND, when calculating breast cancer recurrence, it is important to note that stage, tumor size, ER status, and age at diagnosis in both white and black patients are all relevant factors.   Bottom line here, no two early stage breast cancer survivors are alike.

    http://jnci.oxfordjournals.org/content/96/17/1263.3.full

    To answer your original question about overall breast cancer survival, I don't think there are any hard data supporting prognosis for early stage disease.  At best, year to year it is a moving target.   As treatments improve, the number of 5 year survivors grows.  Last time I checked, while 40,000 lives will be lost to BC in the US this year, 200,000 people will be diagnosed (which includes DCIS), while there will be 2 million more living with a BC diagnosis.  For MOST patients, BC is a treatable disease.  No doubt, we should do better at eradicating the disease.  However, the good news is the longer one lives, and the further out and away one moves away from diagnosis, the more likely it is that a person will die from something else.

    According to cancermath.net, my statistics tell me that in the next decade and a half, 9 out of 100 women who are my age at diagnosis will die from some other illness, while 1 person will die from cancer.  If I were 10 years older at diagnosis, it is an even greater possibility that I'd  die from something else.

    Bottom line, the longer you live, the more likely the longer you will live and the more likely that you will die from something else.

  • Momine
    Momine Member Posts: 7,859
    edited April 2014

    Hlya, I can look at 10-year survival two ways. I can count off 1000 women with BC in year 0, and then I can count how many are still alive 10 years later. That is overall survival.

    However, it throws everyone together. It might be that most people die in year 3, but you won't know this from a plain 10-yr survival rate. If, for example, most people died in year 3, this would mean that people in year 4 and beyond would have odds far better than the overall survival.

    If I count conditional survival, I would instead calculate how likely you are to survive IF you have already lived 3 years past DX (or 5 or 10 or whatever).

  • Momine
    Momine Member Posts: 7,859
    edited April 2014

    Voracious, it is standing joke I have with my aunt (stage 4): "The goal is to die of something else!"

  • hlya
    hlya Member Posts: 484
    edited April 2014

    Momine:  I have to say you made me laugh.  I am always impressed by strong and humorous ladies. 

    Here is another post made me laugh as well:

    http://afterfiveyears.com/2011/03/27/thigh-cancer/

     "......Like crime victims checking every room in the house before sleep, we cancerchicks scan our bodies for trouble in the form of lumps and bumps and new abnormalities and unusual symptoms both real and imagined. Every vomit is stomach cancer. Every cough is lung cancer, forgetfulness is brain metastasis, and leg pain is a bone metastasis. Every time we hear of how another survivor found her recurrence it remains etched in our brain as a new field, (likely that we had never thought of before but thank god we now know) to scan......."

  • Momine
    Momine Member Posts: 7,859
    edited April 2014

    Hlya, my plan is to live as well as I can for as long as I can. For me that absolutely necessitates laughing as much as I can ;) 

    I like the quote about finding cancer everywhere. It is very true. In fact I was discussing this with both my husband and my onc yesterday, namely that although the DX and treatment freaked me out, I find it far harder to get to a reasonable and balanced way to deal with the ongoing "living with cancer" part of all this.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2014

    As always, stats don't take into consideration all the lifestyle choices we have made or are making to decrease our chances of recurrence. Using raw data is one thing ,but I don't let it be the "be all/end all".  It's impossible to determine each individual physiology, activity level, diet, environmental influences, etc etc. 

    I look at the stats as a place to begin. We can do our best to reduce those numbers by what I've said above.

    Claire in AZ

  • jessica749
    jessica749 Member Posts: 429
    edited April 2014

    I see this is an ILC forum, but the stat you cite refers to all bc generally, it seems.  It's hard to know if it is "really" so high because the site which you refer to does not, as far as I can see, offer a footnote/reference for where it gets it's info. If there was a reference, we could check it. Otherwise, it's just some well meaning people saying something, with the intent to inform and be accurate, but hard to evaluate the info when there is no context provided (original citation)

  • jessica749
    jessica749 Member Posts: 429
    edited April 2014

    to divecat: Just to clarify, mastectomy DOES reduce the risk of local recurrence. It pretty much eliminates it to, depending on where you get it done, perhaps up to 98% odds or so.  But you are right: that which threatens overall survival, i.e. possibility of distant recurrence, metastatic spread, is not affected by lumpectomy/mastectomy choice.

  • DiveCat
    DiveCat Member Posts: 968
    edited April 2014

    jessica...yes, sorry if I was not clear. I thought I had made sure to clarify between distant and local recurrence, focusing on distant recurrence, as the concern here is more with distant recurrence. A MX does greatly reduce risk of local recurrence by removing a substantial amount of breast tissue, and similarly reduces risk of a new primary (a local recurrence can still occur (i.e in scar tissue), or a new primary in residual breast tissue, so it is important to still monitor for any changes).

  • yogamama
    yogamama Member Posts: 39
    edited May 2014

    claireinaz,

    Your picture is making me homesick for Flagstaff!

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