? Some thing that was said about the 3 yr. mark

Rachel1

In a recent post, someone mentioned that the three yr. mark was scary as it is a time for recurrances or mets to appear. Others, including my onc., celebrate when someone passes the two and three year mark saying it is very significant.

I guess I'm asking, which is it -- a time for fear and dread or a milestone indicating a good prognosis?  I passed my two yr. mark in May, if you haven't guessed, and I'm scared.

Thanks,

Rachel

lkc

Hi Rachel,

Congrats on your 2 yr!

typically the further out you are the better. My understanding is the first yr is the highest , then the 2 and so on.

there is never any guarantee that recurrences can't happen yrs later, but the chances are lower. 

KerryMac

From what I believe, the risk goes down after 3 years, then more significantly after 5. The further out you are, the lower your risk. However, for those of us that are er+, I think there does still remain a risk of reoccurance for many years.



Read this, it is old, but quite reassuring. It says only about 13% of Stage 3 women who make it to 5 years will reoccur. I would imagine odds after 5 years are even better now.



http://mobile.reuters.com/article/idUSN1248209720080812?irpc=932

clariceak

Sorry.  That was me.  All our cancers are so different there's really no way to predict when or if we will recoccur.    The further you get away from treatment, the better your chances, and two years out is a great place to be.

I was merely speculating on my own unique set of circumstances.  Large tumor, many nodes, vascular invasion and cancer in a mammary node.  That's a lot of cancer!  Although I had a pet scan when I was dxed, I realize it cannot pick up every bit of cancer floating around my body. 

I'm sorry.  I didn't want alarm anyone based on my ramblings after a scary phone call from my doc.  Please listen to the other wise women on this board. 

Rachel1

Wow, Kerrymac, that is an interesting article. Thanks for sharing. I had no idea there was a study done on this. lkc, you are always an inspiration. Thank you.  Clarice, please don't apologize. You have been there for me on more than one occasion. I'm sorry that you're having a difficult time right now. I guess it's the nature of the beast.  I'm sending positive thoughts and prayers your way....hugs, Rachel

Karina121293

Rachel, strange that you posted what I have been wondering about myself lately. I am two years out of diagnosis too. For some reason I am more cautious of the third year. My thinking is; the second year was early to recur after the aggressive treatment, and after the third I will have more chances not to. I know cancer is sneaky though. But I know, if I pass the third year mark, I will feel a lot safer!!! Just my judgement. Stupid cancer makes us ''phylosophers"...

Elizabeth1959

I am also 2 years out. I worry about recurrence everyday and throughout the day. I found the article reassuring. I thought for us lower grade ER + women, the risk after 5 years was higher. Perhaps because my friend recurred and has since died at year 7.

voraciousreader

It certainly makes sense and is not surprising that patients in the study with non-aggressive tumors had a higher chance of having a late recurrence. Grade 1 tumors do not respond as well to chemo. Considering that the group studied predates genomic testing, e.g. Oncotype DX, we must assume that many of those Grade 1 patients received chemo and the cancer was not fully eradicated. Today, numerous studies are ongoing to determine, for those patients with ER + tumors, especially premenopausal, how long they need endocrine therapy to keep the cancer from recurring. Researchers and clinicians suspect that endocrine therapy serves many more patients with non-aggressive tumors than chemo. Hopefully, after those studies are completed in a few years, we will know with certainty the answer to the questions, "Which ER + patients can safely defer chemo?" And, "For how long do patients with ER + tumors need endocrine therapy?" IMHO, I think the "numbers" today are probably even better than that snapshot of patients that were studied. And for anyone interested in the number of endocrine therapy studies, check out the 2012 NCCN PROFESSIONAL'S version of their breast cancer treatment guidelines pages 93-98. When I was diagnosed in 2010 with a Grade 1 tumor, since I was premenopausal, I was told that I was looking at 10 years of endocrine therapy, pending the results of some of those studies. Furthermore, recent studies indicate that 5 years of endocrine protect patients from recurrence for 15 years following completion of endocrine therapy.



I think all of our futures are a lot brighter than that cohort thanks to genomics and better treatments.

CherylinOhio

I was dx March 2011, I don't know if I should count that year at all?  If so then am in my 2nd year?  I was also told that after 5 years the chances of R/O go down and if you are ER/PR- you are essentially cured as it would unlikely the bc would come back. For the ER/PR+ group we still have the R/O chance 10 years and beyond though based on the article that our friend kerrymac linked the chances are small percents.

voraciousreader

For data gathering purposes, recurrence mark would be calculated from the time active treatment is completed. So if you had surgery and several months of chemo, the clock begins at the completion of chemo.

CherylinOhio

Thanks voracious that's what I suspected so as of 9-8-12 I am one year out I believe.  Yikes, 2 more to go. that's scary. 

Elizabeth1959

Ok that puts me at 1 1/2 years out since I had chemo and rads. Kind of arbitrary time point especially since AI may be more efficacious than chemo My tumor was grade 2 but low ki 67 and low onco type score. Voracious reader, my oncologist recommends 10 years instead of 5. What do you think? Especially since my tumour burden was high. (16 cm tumor)

Rachel1

Does anyone know why er/pr+ is more likely to reoccur after 5 years and er/pr- is considered essentially cured after the same time frame?  

Rachel

voraciousreader

Rachel.. The simple reason why ER+ tumors might recur is because there is always some estrogen circulating... Even after menopause to fuel it. The $64 k question is what wakes up the dormant cells?



Elizabeth, read pages 93-98 in the NCCN guidelines. There is no correct answer at this time. I anxiously await the results of all the studies. In the meantime, I am preparing to take endocrine therapy until the risks outweigh the benefits.

Elizabeth1959

I've read nccn before Its hard to get the answer I want. Will I die of something besides breast ca? Never the less my plan is to try to lose more weight and stay on AI.

voraciousreader

Elizabeth...Sounds like a plan!    And while you're at it....wear your seatbelt!  I think we all need to look ahead through the windshield and stop looking in the rear view mirror so much...If we keep looking to much at the rear view mirror, we might miss something in front of us...and that is, enjoying what's ahead.

Regarding tumor burden, you raise an interesting point.  In the literature, there have been recorded massive mucinous tumors, which is the type that I am most familiar with since that's what I have.  I'm talking as large and even larger than yours in which patients ultimately did well. Most pure mucinous tumors have favorable characteristics according to old and new classifications.  The fact that you had low KI-67 and low Oncotype scores underscores how less aggressive your tumor cells are.  Today we are seeing a change in philosophy with regard to how to treat tumors based more on genomics rather than the older system of classification.  Hopefully, going forward, we will be able to collect better data on the distinct characteristics of tumors and then be able to treat patients better.  Personalized medicine, if you will.... Try not to concentrate on the older classification system and instead think more about the genomic classification which gave you excellent prognostics..... 

Elizabeth1959

Voracious Reader



Thank you for your informative and thoughtful reply. I agree with the seatbelt comment. I am trying to make thoughtful decisions in order to make the most of my life.

I also feel reassured that the genomic characteristics are excellent. Thanks again. I LOvE reading your posts.

jenni__ca

for me the third year was a bit scary .... year one i'm in tx and throwing everything at it ... year two i just finished throwing everything at it .... year three uhmmm ???? then remembered AI's are still tx and anxiety level dropped quite a bit and has continued to drop each year ... can't say i still don't have anxiety but it is not dominating my life and life is good for me and dh ....

during my lumpectomy the surgeon removed 7 cm and i had no clean margins in any direction - during mast they estimated there was another 7 cm area with cancer invasion so pretty large

hang in there !!!

Anonymous

Elizabeth:  Am sorry about your friend that passed away after 7 yrs.  I have a friend now that was NED for only 3 and a half years and now is dealing with mets everywhere, spine, ribs, lungs.  I wonder how can this be but maybe there is reason why women opt to go the mast route, instead of lumpectomy. 

Liveitup-- My friend was ER/PR + and according to my onc, that is a better prognosis than ER/PR- or even triple negative, mainly because er/pr positive gals can be kept on hormone therapies for a good long time. 

And how do we count years out?  Is it from end of treatment, such as radiation, or chemo, or is it years away from diagnosis?  I think it would be years out from end of all 'active' treatments...

Shelly

Elizabeth1959

Shelly

My friend had er+ grade III tumor.  She had mastectomy, radiation, chemo and tamox. for 5 years.  When her cancer recurred, it was in her liver and had transformed to triple negative.  She did everything possible.  I was friends with her before her breast cancer and she was supportive of me during my own treatment.  One thing that always gave me hope was seeing how well she had done.  I think that is why I have had a hard time with fear of recurrence. 

I actually have been feeling better after reading Voracious Readers comments.  My own oncologist has told me the same thing.  That is actually why he ran the oncotype dx test.  Given the size of my tumor, positive sentinal node and extensive lymphovascular invasion per my pathology, he recommended chemo.  He just thought it was extremely odd that I could have such a large tumor and not have mets.  He is always encouraging.  Last time he told me a "funny" story from a continuing educational meeting he attended.  One of the speakers told about the patient who inspired her to become an oncologist.  Apparently the patient lived in a rural area and ignored her tumor for a long time. Eventually, the breast became necrotic and actually fell off.  It was only at this time, she presented for medical care.  The speaker asked for a show of hands,  "do you think the patient died of breast cancer?  (ok obviously this was a leading question) Anyways, the patient lived a long life and died of something else.

I've actually found this story helpful in dealing with my fear.

Elizabeth

jkg

KerryMac,

An interesting article indeed! I was surprised to see that a high grade had a better outcome long term with respect to recurrence. I would have never thought that.

I was diagnosed in early August and have been having a tough time absorbing what all this info means without having major anxiety, so this article actually offered some hope for the future. Thank you.

sweetbean

Voriacious reader, I finished Herceptin on May 17,2012.  I finished rads on July 8, 2011.  Am I in my first year or second year?

Thanks!

voraciousreader

Congrats on completing active treatment! Disease free survival would be calculated following the completion of the Herception. you are in your first year according to that calculation. Sweetbean, I wish you and all our sisters well!

sweetbean

OK, thanks.  Man, I'm disappointed - I read somewhere else on here that disease-free survival was calculated from the time of diagnosis, which would put me almost at the two year mark.  This makes much more sense, though.  OK, May 17th is my new big day.  

AgentMo

Sweetbean,

my onc told me it's the end of chemo treatment that counts. And frankly, I don't think receiving only Herceptin is counted like chemo because receiving antihormonals like Tamoxifen isn't either.  So while I am not sure whether the date of surgery counts, I am pretty convinced that your first big day will be no longer than having finished your chemo. Nothing else makes sense.

sweetbean

AgentMO, I think it depends on when you had surgery.  I did chemo first, so my last day of chemo wouldn't work for disease-free survival, since I still had cancer.  

Outfield

Voraciousreader, I'm sure there are other factors than just the estrogen thing.  Rate of division has to be a major player.  My research onc and I talked about my recurrence risk - I'm estrogen + but had a rapidly enlarging, aggressive tumour.  She puts me into the group most likely to recur early, and she even said 2 years, which makes sense if a tumor is cranking along at a frontrunner pace.  

ER+ PR+ tumours tend to be the slow but steady ones, and I would expect something slow and steady to recur later if it's growth rate is simply so slow it takes a while to manifest clinically.  

vacationbound

4 molecular subtypes Luminal A; Luminal B; Basal; Her2

Luminal A-best prognosis-ER/PR + / Her2 - / Low Ki-67 (42-59%) Prevelence 

Luminal B-Fair to poor-ER/PR + / Her 2- / High Ki-67 (6-19%)

Basal- Poor-Triple Neg/ER/PR/Her2-; Brca 1/2 (14-20%

Her2-Fairly poor to poor-Triple Positive/ER/PR/Her2+ (7-12%)

IBC ER-/Her2+ (1-5%)

***Men-strong hereditary factor but could also be any type (1%)

Momine

Never mind, misread.

TectonicShift

.

AgentMo

@TectonicShift: I guess it's better not to know. Because really - what would you gain by knowing your are Luminal B and not being able to do anything about it? I understand, being Luminal A would take some worries away, but finding out your are Luminal B would be horrible. I speak from experience - I know that after chemo I had circulating tumor cells. But I was not administered additional chemo and that left me kind of waiting for recurrence and death to occur. It is not a great place to live in because even as long as I am reasonably healthy I no longer enjoy my life.