Definitive answer? When does the clock start ticking

CoolBreeze · 03-01-2011, 07:18 PM

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!

NanaJoni · 03-01-2011, 07:29 PM

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.

03-01-2011, 08:09 PM

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!

Jackie07 · 03-01-2011, 08:16 PM

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.

Jackie07 · 03-01-2011, 08:27 PM

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.

Jackie07 · 03-01-2011, 08:44 PM

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.

CoolBreeze · 03-01-2011, 08:52 PM

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!

whatz · 03-02-2011, 05:40 AM

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).

Becky · 03-02-2011, 06:51 AM

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

Hopeful · 03-02-2011, 08:11 AM

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

03-02-2011, 08:35 AM

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.

03-02-2011, 10:14 AM

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.

PinkGirl · 03-02-2011, 10:23 AM

Hi Cool
For all it's worth, this is what my onc told me:

I'm a 'survivor' from the moment I knew I had cancer

Most recurrences are at 18 months from end of treatment
(excluding tamox. or AI) That's chemo plus herceptin.

For Her2ers, the year of Herceptin is added onto that ... so
I think I'm at 6 years out but my onc. thinks I am at 5 years
out because I'm counting from when I was diagnosed and she's
counting from when I finished Herceptin. Clear as mud????

Lien · 03-02-2011, 01:14 PM

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

Love

Jacqueline

Mary L · 03-02-2011, 02:24 PM

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

Jackie07 · 03-02-2011, 02:50 PM

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...

Jackie07 · 03-02-2011, 03:35 PM

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.

Jackie07 · 03-02-2011, 03:38 PM

Wikipedia provides comprehensive info on the topic:

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

Mary L · 03-02-2011, 03:39 PM

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

sassy · 03-02-2011, 09:35 PM

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.