Definitive answer? When does the clock start ticking
 

Everybody I ask has a different answer. If HER2 women recur within, typically, the first three years - when does the clock start ticking on that?

Day of Diagnosis?
Day of Mastectomy (or other surgery)
Day Chemo Ends?
Day Herceptin Ends?

For me, that's a big difference, and I could either be almost through the danger zone to the safe zone, or just entering the danger zone - from 8 months to 2 3/4 years. :)


(Please note, my use of the term danger/safe zone is facetious - I know we are never perfectly safe but mostly always don't recur.)

Every onc seems to have a different answer. I've been curious about this for a while, what do you think?

(In reading the stats of the Stage IV women here and elsewhere, it does seem to be pretty quick time to recurrence.)

Thanks! :)

Re: Definitive answer? When does the clock start ticking
 

Cool Breeze - we have some similarities in our dx - (except that I'm waaaay older than you) - I was multi-centric with one triple negative tumor and one er-/pr-/HER2+++ tumor. Today has been really rough day in some ways because it was one year ago tonight that I found "the lump". Does that make it my cancerversary? But I've been wondering the same thing-do I get to count the last year as year 1 of the first three when recurrence is highest (especiallfy for the triple negative) or not until I finish Herceptin in May????? Also, has anyone out there had "p63 negative, ck14 positive" on their path report? I've tried to research it but it gets more confusing the more I read. Guess I shouldn't have revisited last year but looked at the path report and that sort of stuck out to me. Hope to get some answers on these questions. Thanks all.

Re: Definitive answer? When does the clock start ticking
 

Great question. I also saw some posts at another site stating that some physicians are stating that in the near future, possibly now for some women, after 3 years of treating the ER+ and/or PR+ part for Her2+ women, no additional treatment with AI's will be necessary. The theory is that the Her2+ part is the driver, not the ER+, even though both are treated now. Has anyone else heard this, from their docs, in the literature, at meetings? Not having to take antihormonals would be great!

Re: Definitive answer? When does the clock start ticking
 

Cool Breeze,

My recurrence began at the initial lumpectomy. The surgeon refused my suggestion of a mastectomy. She left a chunk in my breast and the subsequent mammagrams were misread to be 'scar tissue' (for four years straight) So I would use the day of surgery.

Since there's no node involvement and you've done mastectomy, chemo, and Herceptin, I think the odds for recurrence is pretty low.

Re: Definitive answer? When does the clock start ticking
 

Unregistered,

I don't know about the AIs. But my oncologist put me back on Tamoxifen last summer after I had had hysterectomy/oophorectomy. I then found some research confirming the benefit of extended Tamoxifen after 5 years.

Re: Definitive answer? When does the clock start ticking
 

Here's the ASCO guideline set in last fall:

J Clin Oncol. 2010 Aug 10;28(23):3784-96. Epub 2010 Jul 12.
American Society of Clinical Oncology clinical practice guideline: update on adjuvant endocrine therapy for women with hormone receptor-positive breast cancer.

Burstein HJ, Prestrud AA, Seidenfeld J, Anderson H, Buchholz TA, Davidson NE, Gelmon KE, Giordano SH, Hudis CA, Malin J, Mamounas EP, Rowden D, Solky AJ, Sowers MR, Stearns V, Winer EP, Somerfield MR, Griggs JJ; American Society of Clinical Oncology.
Dana-Farber Cancer Institute, Boston, MA, USA.
Abstract

PURPOSE: To develop evidence-based guidelines, based on a systematic review, for endocrine therapy for postmenopausal women with hormone receptor-positive breast cancer.
METHODS: A literature search identified relevant randomized trials. Databases searched included MEDLINE, PREMEDLINE, the Cochrane Collaboration Library, and those for the Annual Meetings of the American Society of Clinical Oncology (ASCO) and the San Antonio Breast Cancer Symposium (SABCS). The primary outcomes of interest were disease-free survival, overall survival, and time to contralateral breast cancer. Secondary outcomes included adverse events and quality of life. An expert panel reviewed the literature, especially 12 major trials, and developed updated recommendations.

RESULTS: An adjuvant treatment strategy incorporating an aromatase inhibitor (AI) as primary (initial endocrine therapy), sequential (using both tamoxifen and an AI in either order), or extended (AI after 5 years of tamoxifen) therapy reduces the risk of breast cancer recurrence compared with 5 years of tamoxifen alone. Data suggest that including an AI as primary monotherapy or as sequential treatment after 2 to 3 years of tamoxifen yields similar outcomes. Tamoxifen and AIs differ in their adverse effect profiles, and these differences may inform treatment preferences.
CONCLUSION: The Update Committee recommends that postmenopausal women with hormone receptor-positive breast cancer consider incorporating AI therapy at some point during adjuvant treatment, either as up-front therapy or as sequential treatment after tamoxifen. The optimal timing and duration of endocrine treatment remain unresolved. The Update Committee supports careful consideration of adverse effect profiles and patient preferences in deciding whether and when to incorporate AI therapy.

Re: Definitive answer? When does the clock start ticking
 

Hi Nana,

I'll be 53 next month - not that much younger. :)

I know my odds are very good. I'm just curious - for everybody - when they start counting.. Everybody has that five year number in their heads, but ever single person seems to start the clock from a different point.

I know it's not a real clock and you either will recur or you won't, and most won't. I'm just very curious why this isn't a standard way of determining it, since everybody seems to know about it.

Maybe it's like that old fake 1 in 8 women will get breast cancer number. A gross misrepresentation of the facts. :)

I would love to stop taking tamoxifen. I have no intention of ADDING an AI after I'm done! :eek:

Re: Definitive answer? When does the clock start ticking
 

Hej CoolBreeze,
I know this is a little off topic but ...love your writeup about this in your blog (and thoroughly enjoy that one too!). Been meaning to tell you, have you ever considered just putting your blog together into a book and publishing it? My husband bought me Dana Favre's book back when I was diagnosed but your collection of thoughts and suggestions in your blog would have been more helpful for a newly diagnosed.
As far as statistic...I have no evidence but would think the clock starts from the point when you were declared and treatment ended. (yup, unfortunately I think that would mean after Herceptin).

Re: Definitive answer? When does the clock start ticking
 

Typically the countdown starts the date of surgery (even if you had chemo first and then the surgery).

Re: Definitive answer? When does the clock start ticking
 

Unregistered,

Can you identify the site where you saw that information? I am interested because I stopped the AI at exactly 3 years.

TIA,

Hopeful

Re: Definitive answer? When does the clock start ticking
 

I found this on the Breastcancer.org discussion group in the Her2 Positive Forum under "When do most recurrences for Her2 happen". You may need to read through a few pages but it comes up with a few posters. I have not seen this before. It could all be speculation but if anyone has heard any docs talking about this at conferences, it would be interesting. I know what the guidelines say but the thought leaders may be thinking something else.

Re: Definitive answer? When does the clock start ticking
 

Jackie07,

I noticed that you continuously refer to your unclear margins at the time of your original lumpectomy as a 'recurrence'. I am not understanding how something that was never completely removed be termed a 'recurrence' as opposed to cancer cells remaining that continued to grow. Were you told by your surgeon that this was considered a recurrence? I am just curious how your situation is considered a recurrence and not a problem that occured as a result of a misreading of your slides.

Re: Definitive answer? When does the clock start ticking
 

Re: Definitive answer? When does the clock start ticking
 

As far as I know, here in the Netherlands we start counting from surgery date.

Love

Jacqueline

Re: Definitive answer? When does the clock start ticking
 

My onc told me it is from the date that you are diagnosed. I was diag. Oct. 2003. Mary L

Re: Definitive answer? When does the clock start ticking
 

Unregistered,

When my mammogram showed a 2+cm tumor four years after my initial lumpectomy, my breast surgeon stated with a very upset voice: "You are the first one of my patients that have 'recurred'!"

Another oncologist who happened to get 'flagged down' by my husband in the waiting area told me that it's a 'local-regional recurrence', and will be treated as if it's found the first time. He was clarifying it for me because I thought a recurrence was automatically a stage IV. I was writing in tears to my family overseas...

My initial 1.2 cm tumor was thought to have been growing for 2 1/2 years. That was about the exact time when I was assigned to work under a newly repaired roof (the 'tar' smelled terrible)...

I think the 'official' date is always the date when one is diagnosed because we started to 'survive' both physically and psychologically. Just my own take... (and it changes every time I look at this issue... :)

Re: Definitive answer? When does the clock start ticking
 

Here's a definition of cancer survivor from Medicine.net:


Cancer survivor: Someone who has received the diagnosis of a potentially fatal form of cancer and is therefore forced to face his or her own mortality. The phrase was coined on July 25, 1985 in an essay in the New England Journal of Medicine by Dr. Fitzhugh Mullan. Mullan's essay was entitled "The seasons of survival: Reflections of a physician with cancer." As a young physician, Mullan had learned in 1975 that he had a deadly malignancy, a mediastinal seminoma. He then began passing through what he called "the seasons of survival." There is far from universal agreement among those who have had cancer about the term cancer survivor. Some object to it, saying they are cured. Others say they are living with cancer. And still others prefer to put cancer behind them, and argue that being called a cancer survivor stigmatizes them. However, there is no term that by consensus might be better and the term cancer survivor seems here to stay.

Re: Definitive answer? When does the clock start ticking
 

Wikipedia provides comprehensive info on the topic:

http://en.wikipedia.org/wiki/Cancer_survivor

Re: Definitive answer? When does the clock start ticking
 

Thankyou Jackie, That is what my onc told me 7 years ago Oct 2010. That is what I believe. Mary L

Re: Definitive answer? When does the clock start ticking
 

My onc counts from date of surgery.

As for AI's, it is his belief that continuing an AI beyond 5 years will become the recommended course.

So far he has been proved right. Everything we did six years ago based on the research he was following at the time, has slowly been becoming standard of care.

I know this probably doesn't sound like good news in terms of SE's, but for survival, maybe not such a bad deal.

Re: Definitive answer? When does the clock start ticking
 

Coolbreeze,

I will be 53 in July. Cancer has really changed my perspective about life. I cherish every day, even when things are really rotten.

I was told that recurrence can typically occur around 22 to 26 months from the date of surgery.

I had my masectomy on April 16, 2008, and a suspicious nodule showed up on scans during February 2010. I had it biopsied, and it was found not to be anything, and I truly wonder if they missed the spot. July 2010, I was scanned again, and it was felt that I did have cancer in my lung. I came off Herceptin for a five week wash out period, and places grew while I was off the Herceptin. When I went on the EMELIE trial taking Xeloda and Tykerb, the spot shrank and one spot disappeared.

If I have correctly counted, the first possible nodule appeared right at 22 months, then it was confirmed right at 27 months.

Everyone is different, but this is what occurred with me.

Amelia

Re: Definitive answer? When does the clock start ticking
 

The people at Komen told me from date of Surgery-

For what that is worth!!!

Hugs to all--

Re: Definitive answer? When does the clock start ticking
 

Re: Definitive answer? When does the clock start ticking
 

On the definition of being a "cancer survivor" - I was at our local Am. Cancer Society office getting a free wig. The staff person called me a survivor and I said I wasn't because I hadn't even started treatment yet. She said "the day you decide to fight, you are a survivor". I thought that was great.

Re: Definitive answer? When does the clock start ticking
 

I read that the American Cancer Society uses the date of of initial cancer diagnosis to start the survivor-clock. But then they are looking at all kinds of cancers, some of which obviously never are candidates for surgery. For many breast cancer survivors their diagnosis and first surgery are often so close together that the preciseness of the start date becomes less meaningful as time progresses.

The start date I am interested at present is the time-to-port-is-out-date. Does it start after the last Chemo or Herceptin infusion? My doc says "the port needs to stay in for two years." I plan to ask him next visit, "two years from when?"--bird

Re: Definitive answer? When does the clock start ticking
 

1rarebird,

I was told that the port is to be kept for 1 year after completing treatment. I've been keeping mine as I have very limited veins for IV.

Re: Definitive answer? When does the clock start ticking
 

Found out at my last dr. appt/Herceptin day, my port will be coming out after my last treatment in May. First a PET scan for baseline and then port OUT. I can't wait. I have awful veins and a genetic clotting problem but my oncologist says it will be better for me to have it out. I'm on warfarin so that will stop for a couple of days prior to the removal. And I really am happy to have that info.

Re: Definitive answer? When does the clock start ticking
 

Well, we're off topic. But here's a link to other cancer survivors opinion on the port-out day:

http://csn.cancer.org/node/205574

The 'survivor' date really should be the confirmed diagnosis date. I think the only reason why surgery date is used is becaue that's the date we usually remember very well. Also, since surgery carries risk, people have a more 'real' sort of feeling when they 'survived' the surgery.

But I remember clearly of the diagnosis date of my life-long brain tumor, it happened to be my husband's birthday and it had led to the first major surgery of my life. After that one, none of the other cancer diagnoses was that big a deal and I only remember the surgery dates.

Re: Definitive answer? When does the clock start ticking
 

distal recurrence free survival, overall survival etc are all calculated as time since original surgery

Interestingly, in breast cancer the clock starts ticking not when a tumor is found but when the surgery occurs. In some cases (patient denial, lack of access to medical care.etc) a person with a breast tumor may go for months or years before having the surgery. The peaks of recurrence for the various subtypes of bc
all occur a apecific amount of time after the surgery, not a specific amount of time after the mass was discovered/palpable/imagable etc.

This is felt to probably be because the surgery itself causes the release of various angiogenic factors "starting the clock ticking"

Re: Definitive answer? When does the clock start ticking
 

I'm not interested in the word "survivor." I don't relate to it and I don't like it. I find it trite. I know lots of people like it and that's fine for them, I have no problems with people calling themselves that. I dislike it for me, same as that whole pink culture thing. It's not my style.

So, my question has to do with when the statistical risk of recurrence drops. From which incident do they count? As you can see in this thread (and I read the one on BCO too) everybody has a different answer. If there is no standard answer, then that five year statistic is inaccurate. Or, let me rephrase that. It's accurate only for the one study where it was introduced, and now everybody has picked up on the five year safety zone. :)

So, it is like the false "1 in 8" claim.

As for a book, that is a nice idea! A few people have asked me that but I don't know how I would lay it out. It seems so blogish to me. Would I have to go back and rewrite it like a memoir? That's a daunting thought.

There are so many breast cancer books out there too....I don't know. but, thank you!

Lani, somehow I skipped your post. That's what I wanted to know but do you have a citation or something for it?

Re: Definitive answer? When does the clock start ticking
 

I remember posting about surgery starting the clock ticking around 2005 or 2006

I will try using the search function to see if I can find it.

Re: Definitive answer? When does the clock start ticking
 

this is not the one I was looking for, but another related one ...looking at women in China, Vietnam where they didn't necessarily get treated right away in fact it compares those treated 1-6 months after they felt the lump and those treated 6-29 months later and found disease-free survival and overall survival were not statistically different between those two ie, the clock started ticking when the surgery occured

Breast Cancer Res Treat. 2004 Jul;86(2):117-24.
Duration of signs and survival in premenopausal women with breast cancer.
Love RR, Duc NB, Baumann LC, Anh PT, To TV, Qian Z, Havighurst TC.

Department of Medicine, Section of Medical Oncology, University of Wisconsin School of Medicine, Madison, WI, USA. rrlove@facstaff.wisc.edu
Abstract
CONDENSED: Among 550 women reporting a lump as the first sign of breast cancer, those with this sign for 6-29 months compared to those with 1-6 months, had bigger tumors and more frequent axillary node involvement. Overall survival, however, was not significantly different in these two groups.

BACKGROUND: The relationship of delay in diagnosis of breast cancer to survival is uncertain.

METHODS: We evaluated the relationship of patient-reported duration of signs of breast cancer to survival in participants in a clinical trial of adjuvant hormonal therapy in Vietnam and China.

RESULTS: Among 550 women reporting a lump as the first sign of breast cancer and information on when this appeared, the median duration of this sign before diagnosis was 6 months. Comparing two groups of patients with durations of lumps 1-6 months and 6-29 months, the group with longer duration of lumps had larger tumors clinically and pathologically (p = 0.0006, and p = 0.004), more frequent axillary node involvement (p = 0.008), and shorter but not statistically different disease-free and overall survival from the time of diagnosis (p = 0.09 and 0.35, respectively).

CONCLUSIONS: Breast cancer evolves slowly in the detectable period of its natural history. The impact of delays in diagnosis of less than 6 months is likely to be very limited; delays more than 6 months appear to have some, but marginal impact on survival.

Copyright 2004 Kluwer Academic Publishers
PMID: 15319564